Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Archived SUCCESS stories- please do not post here
Author: Susan (167.7.251.---)
Date:   12-12-02 06:22

Hello, I wanted to let everyone know that my pulmonologist prescribed Doxicycline for me at a dose of 100 mg bid. I was diagnosed with sarcoidosis in February 2002, after having very swollen lymph nodes in my neck, and also noticing that when running I couldn't seem to get my breath. I felt very well, though, and wasn't sick. After being diagnosed via lymph node biopsy, I was given Prednisone and later Methylprednisolone. I felt well up until a few months ago, and started having very strange pains all over, which would go away eventually. I also started sweating a lot - both at night and during the day, and felt that I had an infection. My lymph nodes were still swollen, my throat hurt on and off, my nose was very stuffy at night, etc. Anyway, I finally told my pulmonologist how bad I was feeling, so she did research, and agreed to prescribe Doxicycline at the above dosage.

Maybe I'm premature in telling everyone (at first I felt really well with Prednisone, too), but I am feeling much better! Thank you so much! I often thought I needed some type of antibiotics - the doctors never even gave me any all this time, except for a very short course of Keflex when I first had my swollen lymph nodes. I am weaning off of Medrol, my lymph nodes are getting smaller, and I am not sweating!! I don't seem to have any aches or pains, either! As I said, I hope I am not premature in saying how well I feel, but with this disease, people have to make the best of each day!! As I am a Stage IV (pulmonary and elevated liver enzymes), I will have to see how this helps my lungs, but even with fibrosis, I still run and exercise.

Note: I have not had any bloodwork done in a while to see if I have any active inflammation from sarcoid, including the ones Trevor suggested, but it doesn't matter, because I know I feel better and I knew I had an infection of some sort (swollen lymph nodes and sweats should indicate something!!) Anyway, thank you and I hope this new knowledge helps a lot of people.

Moderator's Note: We do not recommend doxycycline because we've found that minocycline (a different tetracycline) is a more reliable drug therapy.
 
 Re: ** Success stories- Antibiotics are fixing me
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-11-03 19:13

For those of you who may be unconvinced of the effectiveness of Dr. Marshall's protocol, I'd like to share my success story.

In Feb 2002, I consulted a neurologist regarding the progressive numbness/weakness/atrophy of my left foot/leg and was eventually diagnosed with tibial neuropathy, etiology unknown. A couple months later, a CT scan to assess a unilateral sternal thickening was inconclusive but revealed multiple lung nodules and prominent lymph nodes. The neurologist connected these symptoms and suggested sarcoidosis. Because the sACE was negative and my symptoms were not debilitating, he recommended wait and watch. Searching the Internet, I came to the conclusion that I had many features of Sarcoidosis: history of skin lesions, fatigue, night sweats, neuropathy, numbness/tingling of my hands, joint pain, irritability, photophobia, muscle pains/weakness, leg cramps, dizziness, nasal congestion, history of red eye, cutaneous anergy, hypergammaglobulinemia, etc.

Eventually, I came across Dr. Marshall’s paper on Remission in Sarcoidosis and was prompted to consult with a pulmonologist and then an ophthalmologist. Frustratingly, I had no suspicious tissue to biopsy and these specialists were uninterested in an unproven treatment. Nevertheless, I discontinued Vitamin D supplementation and began avoiding foods containing Vitamin D. Within 2 days, my severe nocturnal leg cramps had resolved. I tried, with limited success, to avoid sunlight and bright light exposure. I also renewed my prescription for tetracycline which had previously kept my skin lesions under control. At my request, my primary physician, an internist, ordered the D-metabolite testing. As before, my sACE came back within normal range but the 25-D was elevated at 25 (probably reflecting previous Vitamin D supplementation) and the 1,25-D was elevated at 38.

On 12/23/02, I began taking 40mg of Benicar every 8hrs. By that time I was having significant, immediate adverse reactions to minimal sunlight exposure and delayed debilitating fatigue. During the first week of ARB therapy, I experienced an increase in symptoms, especially fatigue, but then I noticed a significant increase in my energy level.

One week later, I began taking 100mg of Minocin every other day. I have experienced a variety of Herxheimer reactions, most mild but one severe enough to confine me to bed for 12 hrs. After each Herxheimer episode I have noticed an improvement in various symptoms. My nasal congestion no longer requires a steroid spray and I have fewer sharp joint pains. I no longer routinely nap once or twice a day and my energy level improves daily. My legs are stronger and less achy. The skin lesions that developed as a result of Herxheimers disappeared quickly. Night sweats are less frequent and probably related to Herxheimers. I no longer get dizzy and disoriented with minimal sunlight exposure since I now have good eye protection with the NoIR sunglasses.

This represents an approximate 50-60% improvement in my symptoms with only seven every other day doses of Minocin. I am confident that these measures are effecting a decrease in my level of 1,25-D. I will recheck the D-metabolite levels in 2 months but the increase in my quality of life is immeasurable. My future's so bright, I'm glad I'm wearing shades!!

Meg

Addendum: One month post initiation of ARB and antibiotic therapy, my symptoms continue to abate in an erratic pattern. Most excitingly, my numb left foot and lower leg are painfully and slowly coming back to life.

Addendum #2: It's been four months since I started taking Benicar, then Minocin, then B. I have experienced a variety of Herxheimer reactions and the gradual resolution of most of my symptoms. My D-metabolites at a 3 month recheck had reduced considerably, to the point where the Herxheimer reactions are now minimal. Coinciding with that, just the past couple weeks, my energy level has amazed me. I can now, once again, work a full day without abnormal fatigue, my brain fog is gone, I'm no longer irritable, all my skin lesions are gone, the joint pains have disappeared along with stiffness and leg cramps. I still have some left tibial neuropathy to resolve but my foot is 80% less numb and my legs have almost recovered their strength. My nasal passages are clearer but seem to be the most stubborn of the symptoms to relieve. But all in all, this has been an incredible journey. I've taken some simple, slightly inconvenient lifestyle and dietary measures, some trusted antibiotics and a safe anti-inflammatory agent. I paid the price with the Hersheimer reactions which only proved to me that Trevor is right. Now, I am reaping the benefits of feeling well and I know I will eventually be completely disease-free.

Addendum #3: I've had five months of ARB and antibiotic therapy now. My Herxheimer reactions are pretty mild which is really nice. But I can still feel the antibiotic working to resolve my tibial neuropathy as my left leg reacts with increased weakness, achiness and cramps. The most exciting development is that I can now wiggle those toes that were paralyzed due to atrophied muscles from denervation. Won't my neurologist be surprised?

Addendum #4: It's been 8 months now and I'm still improving. I've increased the frequency of the Benicar to every 6 hrs. which has helped counteract the Herxheimer reactions. I am able to tolerate 200mg (the maximum) of minocycline every other day. If I forget a dose of Benicar, I am aware within the hour as symptoms of fatigue, irritability and legs aching make normal activities more difficult. Other Herx symptoms such as night sweats, leg cramps, skin lesions, nasal stuffiness, hand numbness and minor pains come and go. Just last week I found that I couldn't see the computer properly with my indoor NoIR sunglasses on and now I can view the screen in comfort without them. The foot numbness is 95% better, my legs are stronger and I can usually breathe through my nose with ease, but I won't settle for anything less than 100% resolution of all my sarc symptoms.

Addendum #5: I saw my Mayo neurologist after nine months of treatment with Benicar and antibiotics. Since he did not prescribe this treatment, he was surprised to find that my tibial neuropathy had considerably improved. He noted increased foot strength and was able to elicit an ankle reflex that I had lost. He was impressed enough to order a short trial of Z. The combination of minocycline and Z is provoking increased Herxheimer reaction and helping to resolve the lingering leg weakness/numbness and fatigue that are my chief complaints now.

Moderator note: The maximum dose of mino is now 100mg every other day.
 
 Re: ** Success stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-25-03 16:01

Remission is not 'returning to normal'.

I have been transported somewhere, somewhere I never remember being before. Where my mind is again fully my own, and fully under my control. Where I have no unusual aches and pains. Where I wake up, each day, looking forward to all the stuff I will get done.

Never do I remember any existence like this - it is 'surreal', not 'normal'...

..Trevor..
 
 Re: ** Success stories- ARBs or Antibiotics are fixing me
Author: Lana (---.vnnyca.adelphia.net)
Date:   01-29-03 16:09

Trevor - This is in reply to Phil's question regarding the Success Story thread.

I am embarrassed to say that I had not seen the thread as there are
so many. I will go on record as saying that I am 100% convinced that Trevor's recommendations need to be followed. Avoiding the sun is not easy - Avoiding dietary Vit D is not hard - for milk, since the U.S. has added Vit D to our milk - I just take Half and Half, which does not have Vit D added to it - and put 2 tablespoons to a cup of water. Instant Milk! I am still on my doxy q.o.d. and am weaning from pred. Whenvever I do see my doc again, (I've seen them, up until 3 months ago almost every week for almost 4 years - and most of those were spent taking blood because I was on methotrexate or Imuran!) I don't want to go back but I will have some bloodwork done to follow up on D levels as well as cholesterol, etc. The fact that I haven't seen them these last few months is indicative of the fact that I am getting so much better!

Even my family is commenting on it. I can talk without taking seconds to replenish my air between phrases, I don't get choked nearly as much and I sent back my oxygen machine. I'm still on cpap but that will probably last until I get this prednisone weight off. My response is not technical (duh, could you tell?) but definitely heartfelt) While I am still on the road to recovery, I consider myself a success story.

....Lana
 
 Another success story here
Author: Vickie (---.gci.net)
Date:   02-02-03 12:01

I was diagosed in April 2000 with pulmonary Sarcoidosis after a visit to the ER for chest pain led to a scary looking chest x ray; they said it was either Sarcoidosis or lymphoma, or an enlarged pulmonary artery. I saw a heart specialist, then a pulmonologist who did a thoracic CT scan and confirmed Sarcoidosis.

Side note, though: I had had a similar experience -- crushing sternum pressure leading to an ER visit and a chest x ray -- about 7 years before that, had a tentative diagnosis of Sarc, but the pulmonologist said my ACE levels were "normal" and said I just had enlarged lymph nodes because of my size (I'm a chubby chick) and that the chest pain was from pulling a muscle. When the doc here in Alaska got my records from that doc in Seattle to get the "big picture", my ACE levels had been clearly high -- 67 is the number, I believe. So I apparently had Sarc "way back then", something which explains the sternum pain, fatigue, nasal symptoms etc that I experienced over the years.

Anyway, immediately after my diagnosis in 2000 I went to my holistic MD who is a friend of my inlaws who had had some luck in treating Sarc patients with antibiotics. I actually saw a nurse practitioner in her office, who remains my NP to this day. She tested me for Mycoplasma (and both my IgG and IgM were high indicating a long term and acute infection) and started me on the Doxycycline every three days. She also put me on some supplements for chronic fatigue and autoimmunity.

Within a week or two my fatigue was just about GONE. I still had a cough, which took a few months to resolve but I had more energy than I knew what to do with. Over time the traveling joint pain (which I hadn't really associated with Sarc right away) has gone, too. I've been on the protocol since 2000 and I'm doing much, much better. I have a little cough in the morning after my shower but not nearly as bad as it was; it used to be so bad that I wouldn't be able to catch my breath and would even (TMI alert) vomit. The traveling joint pain is gone. My retrosternum pain is gone, and I'm doing much better.

I'm currently in nursing school full time (doing clinicals so I'm on my feet a lot), run a business with my husband, and care for three children. All with this autoimmune disease. And I'm getting straight A's. My Chest x rays still show hilar lymphadenopathy, but it's stable and has been for years now. The only thing I do notice is that if my hubby or kids get sick, rather than getting ill myself, my sarc flares a bit -- my arm pit lymph nodes swell and hurt a little, my sternum hurts and it's not so easy getting up the stairs. I hardly ever get sick now, ever. Also, I've tried going off the antibiotics a couple of times and within a few weeks or a month am back to square one. So, while I don't think I'm cured, the antibiotics have contributed greatly to my quality of life and have every intention of staying on them forever.

The only side effect from the antibiotics is a persistent systemic yeast infection. My NP has me on nystatin and an herbal candida treatment, as well as a ton of acidophilus every day. When I'm religious about taking it, it's tolerable, but it's something I always have to be aware of and watch the amount of sugar I eat (which I do anyway).

Another side note: In the last six months I've been diagnosed with labile hypertension (no doubt partly from the stress of school, kids and business) and was put on an ACE inhibitor. I've noticed that when I'm regular with my meds, my sarc feels better. When I forget to take it, I feel worse, including my sarc (I just put two and two together today about the ACE inhibitor and Sarc) and my blood pressure skyrockets. So I'm going to talk to my nurse practitioner about maybe switching me to an ARB which would treat both my hypertension and the Sarcoidosis.

So yes, this does work. And if my only side effect is a treatable candida infection, I can live with that. Because at least now I'm living.
 
 Re: ** Success stories- ARBs or Antibiotics are fixing me
Author: Bastiana (---.olympus.planet.nl)
Date:   02-03-03 06:24

Today is day 15 since I started on minocycline, 50 mg every other day.

I was reactivated in August, working in full sunshine in the garden to cure myself from a 'burn-out'. And from the psychological terror I put on myself because of a hundred 'unsolved sensations'. What was wrong with me??

Being diagnosed in 1978 with sarcoidosis, and able to deliver an X-ray which showed remission within a year being on anthroposofical medication, I had never given sarcoidosis another thought. I assumed not to have this illness anymore...! Still I had a long way to go with my 'strange head complaints' nobody could ever identify....

Finally landing on this site, I was able to make my own diagnose: the X-ray showed a diffuse picture; stadium 2 of sarcoidosis (now they maintain 3 stages in Holland).

I have never been on any medication, besides the anthroposofical. All primaries I have had, were never able to identify my constant (diffuse) complaints. It was marked as 'psychosomatic complex' although they were informed about my diagnose in 1978 of sarcoidosis stage V.

I started the minocycline, after I had gained a full perspective of the symptoms of a high 1,25 D level. I was able to identify it's 'taste'. Also the effect of sunlight, were amazingly symptoms that I could identify. At least this brought me to a to a normal sense. So many things fell on their place.

But still, this immense perspective didn't find a 'discussion level' with my doctors. The neurologist my pulmonary sent me to, didn't give in one inch, of me being a sort of hypochondriac; he needed 'research' before he could encounter my sayings. Till then, my sensations were disqualified. The pulmonary was more open for new perspectives, but didn't have time. And so on.

As my pulmonary was postponing a next appointment, as she had not had time to read all the documentation, I sort of appealed to another doctor for the therapy. I felt the bouncing on my pillow, and was afraid of loosing more of my hearing. I asked my general doctor to write a prescription for antibiotics.

I am happy to have chosen a low dosage, and I would recommend those, not being able to get the ARB's even to start lower as this.

The little pill of 50mg provoked a earthquake in my system....I was happy that Belinda was always on my side as a buddy, as the sensations were so thorough in my whole system, that I went to real anxiousness episodes. Healing from sarcoidosis that (although I was in a so-called remission for years) has been in the body for 25 years, is really FEARFUL, strange enough...Regaining body sensations, that you lost for such a long time, even puts a sort of stress on your normal sanity...

Now after two weeks I can still feel the deep operation the minocycline is doing in my body; but I am a different person now.

The strangest thing visible from the outside, is that all my muddy spots have vanished! Belly, upper arms, cheeks, all over I seem to reclaim my 'old body' ! I have absolutely no explanation for this! Trevor?

About the 'inner side' I have asked Belinda to make a little book from her diary. As the sensations are so weird somehow, that if strangers would read it, an impression of a silly kind of hysteria, or at least 'physical pre-occupation' wouldn't be at all that incomprehensible for me!

Two weeks ago, I was a ruin; apathetic and capable of almost nothing. Now my metabolic process (goodness, my old dictionary does not have the medical word for '@!#$'! sorry!) has normalized, my movements seem to have regained their speed and flexibility, and for the first time in a long time, I started also to LIKE things of normal life again. Enjoying, looking forward etc. I had completely lost a future view. The light in my eyes is not as painful anymore, as it was two weeks ago. Still I protect them!

So, with my immense improvement I certainly also somehow enjoy my independence from the medical system, in perspective, in ability and time, in having to cope with my presumed 'psychosomatic complex'...'fatigue'... and other symptoms they didn't understand. Of course I am 'tired'; but still this is a complete understatement in my view.

I do want to gain enlarged perspectives on the anthroposofical view on the disbalance in the D-metabolisms, and adjusted medication. As I do not prefer to be on antibiotics a lifetime. But this is still in process.

Also, I am very amazed by the high dosage of antibiotics you all take. And I wonder whether it might be possible that lower dosage might have stronger effects?

Bastiana

 
 Re: ** Success stories- ARBs or Antibiotics are fixing me
Author: Sylva & David (---.proxy.aol.com)
Date:   02-11-03 08:12

I am feeling very bold this morning to write a response under this topic. But I do want to share the good because it has been very hard for so very long.

I can see improvements in my husband's condition! Little things. After 4 weeks of Minocin, almost qod (herx too severe to always be qod), his herx lasted only about 36 hours this last time. It was wonderful. He was able, this last time, to increase the Benicar to q4d (as his DO gave him another perscription for tid on top of the gp's for bid) and last night, for the first time in 6 wks, his eyes were not bloodshot (the opthalmalogist had explained that bloodshot eyes indicate inflamation in the eyes, I've sort of used it as a marker for his whole body since then).

He has been off the prednisone for 2 weeks now, which is really exciting.

His BP and BS are both better. Neither of these changed the last time he came off of prednisone.

He has a long way to go as the sarc is in his muscles (as indicated by elevated ck) and they have atrophied greatly over the last couple of years. I am sure he'd be in a wheelchair by now if he hadn't been committed to the PT/gym for the last year. Strengthing his muscles now will hopefully not only be possible but less painful.

I hope these little (actually huge) improvements help someone just starting on this path to remission. He started about Nov 1, 02 with 1,25 D at 69 and overall ratio of 2.26 and at 8mg/day prednisone. Will get D measure again in a couple of weeks.

Thanks again to Trevor and all for hard work and dedication. Sylvia
 
 Re: ** Success stories- ARBs or Antibiotics are fixing me
Author: Kathleen (65.121.96.---)
Date:   02-16-03 17:58

Hello All -

I am one of the pending success cases Trevor referred to - but I believe I have made so much progress, I would like to encourage others.

My chest pain and shortness of breath have been incapacitating over the last three plus years; not to mention fatigue, aches, numbness, and cognitive symptoms.

I took the Minocin before the Benicar - that is definitely the hard way - as Trevor advises, the Benicar should be in place first for a couple of reasons -
first I had a reaction to the Benicar, in that it is an inflammatory medication - and as it reduces the inflammation, it really exacerbated my symptoms - in a different way than Herxheimer; but still very uncomfortable. Once I was comfortable on the Benicar, at the recommended dose of 40mg three times/day, I restarted the Minocin. This time, the Herxheimer effects were much less noticable (the first time I started Minocin, my heart rate and chest pain were much increased - to beyond uncomfortable, but to where I believe it was dangerous. I stopped taking it, and started the Benicar, and that improved.)

It's only been a few weeks, but I feel more energetic, definitely more mentally aware, chest pain is decreased and the shortness of breath is basically gone during normal activity. As I mentioned in another thread, I even did a little dance last night - with no abnormal shortness of breath or chest pain! If I never get better than I am right now, I would have to say it is such an improvement, I would be happy with that - considering the prognosis of cardiac sarcoidosis! I really feel less stress on my heart, and more "normal" than I have in years - although Trevor is right, it isn't merely normal - it's an appreciation for everything you never thought you'd have again - and for the moment you're actually in!

I know I have a long way to go, but tasting that moment gives me hope for more...I can now admit how scared I have been that my life was basically over. At times, I feel like I've been in a coma, and don't really know what has gone on around me for the past few years!

I've also had parasthesias - numbness and itching - scratching or rubbing my face always felt like I was rubbing something dis-associated from me - and now I can feel my face!

Anyway, hang in there - this is a good course to be on!! Thanks Trevor!

Kathy in Wyoming
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kathleen (65.121.96.---)
Date:   02-23-03 15:32

Trevor and All -

Just another quick update - a nurse told me this week that I have "life in my eyes" - which I haven't had for a long, long time! It's great working in healthcare - my co-workers/friends know when I am sick, and they know I am getting well! My CEO also told me I am getting color back in my face...

Heading in the right direction!!!!

Kathy in Wyoming
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kathleen (65.121.96.---)
Date:   03-06-03 17:38

Trevor and all -

Another update on my pending/current success - my boss talked to me about taking back some of my supervisory duties at work, that I had to give up when I got sick!!! Another department also asked if I would be interested in transferring...my improvement is very visible!!!

I feel as though I am on a different level - I know I am still sick, and have a ways to go, but I know that unlike steroid induced improvement, this will last! Before, when I felt better, it was always scary, because it was possible that that was a good as I would ever feel again...my doc was very careful w/steroids, but they became less and less of an option, even before I found Trevor's information. In other words, they were never a cure, just a temporary fix...and this time I really know I am going to get better. While the Herxheimer effects make me feel badly, I know this is temporary - and completely necessary to get well! They are also somewhat controllable with Benicar, my new favorite drug!!

Thank you ALL!!

Kathy in Wyoming
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: JohnL (---.p1.xnet.com)
Date:   03-28-03 07:34

Thought I'd share some of my success - after finding this site and taking the experts advice found here - I began taking Minocin Jan 23rd. My values were:
1,25D 40 PG/ML
25D 24 NG/ML
RATIO 1.67
NO ACE TEST DONE

I originally had some strong reactions both herx wise as well as some odd things like my dandruff stopping and some surface bumps on my toungue going away. I quickly realized that taking Minocin @ 100 mg/day was not an option and went to every other day and taking a probiotic on the offdays (acidophilus). After some initial positive reactions, my dandruff came back and all my other symptoms (which were very similar to "Kathy from Wyoming's") seemed to either get worse or no improvement. I was getting very depressed. After reading other's stories here and conversing w/the experts here, I realized, as Trevor said, "It took a long time for your body to get to this point, it's going to take time for you to get better. I hung in there and began taking Benicar at Trevor's suggestion - after first experiencing no change, I realized after about a week that my coughing's definetly subsided! I have continued slow improvemnt. the most recent being a definite decrease in cardiac/chest pains which were getting scary much like Kathy describes. I've recieved the NOIR glasses (ask for the 20% internet discount) and my eye itching/burning seems to have gone down. They look dorky but they work! (saving for those Carl Zeiss units - anybody know how much they cost or any other alternatives?) The Minocin/Benicar combo seems to be doing the trick. If my "butterfly pattern" clears from my face, I will do a dance like Kathy - it won't be a pretty site! Have a better day John L
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kathleen (65.121.96.---)
Date:   03-30-03 18:47

Hello all -

Just an update - after an awful few days of herxheimer, it is so noticable how much improvement I have actually made! I had a few days of feeling as awful as I used to...but this time I KNEW it would not last. I backed off the Minocin, and I am feeling much better again - with a spring in my step! I know I have a long ways to go, since I am still having fairly severe herxheimer reactions, but it is so amazing how far I have come - and how grateful I am for Trevor and all of you on this site - together, we can and are beating it!!

John - dance on! It's great to feel better, isn't it? I have found that John Frieda products FINALLY work on my hair - it's not so difficult and ratty now.

My "butterfly" pattern comes and goes with rashes - although lately it has been one side or the other. I found a moisturizer that helped with the placquing/scarring, but it was discontinued...I'll let you know if anything else works!!!

Take care all,

Kathy in Wyoming
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Judy, Idaho (---.coldreams.com)
Date:   03-31-03 05:59

Good AM Trevor and all,
I hope to be able to put more of a story here soon but will start with this update. On Fri. saw my Gp doc and took in a few of the papers. He had already had some from a previous appt. He started me on 50mg. doxycycline qod no ARB's at this time.... Now you might ask why doxycycline, something to note: On pg. 6 of the dermatology report (my daughter had this highlighted) states this and this is just the end part of the paragraph. "Indeed, the incidence of the main adverse effects related to minocycline therapy. such as drug hypersensitivity syndrome .hyperigmentation, and dizziness, appears to be much lower inpatients who receive doxycycline. Thus, in future trials, it will be of great interest to evaluate more extensively the therapeutic efficacy of doxycycline in patients who present with granulomatous cutaneous disorders" so with just reading this part we went with the doxycycline.(Trevor what is your thought on this?) My doc was gonna read the rest of the studies but was great with trying this therapy, thought the part on the doxycycline was important to note so we started there(worked for me!!) I might add that taking this article to your doctor is a good idea and to have it in the full text seems to be even better for us that pulmonary sar as the chest x-rays on pg.5 is very convincing. Something I am doing is keeping a daily diary. This is to include symptons, b/p,p and anything else I think is important. I am watching my V-D intake very close and trying to control that with diet. As for the ARB's right now I think after he has time to read everything we will talk more. I started the 50mg. on Sat. and will do qod. for a week or two then go up to 50mg. twice aday.
I really appreicate this site as it has given me so much direction to research and also get some other thoughts to help with my decisions.
Good health to all,
Judy
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Vickie (---.gci.net)
Date:   03-31-03 08:30

Hey Judy,

Glad to hear you found a doc who's willing to do the protocol for you. I'm on doxycycline -- have been since 2000 -- and it's made a huge improvement for me. I know it's not the drug of choice, but for me it's been terrific. I take 100 mg every third day and it's been very effective.

Best of luck to you, and don't forget the acidophilus!

Vickie
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-31-03 08:47

Judy,
99% of adverse events reported for both Doxycycline and Minocycline are incorrectly diagnosed. Most doctors have no idea what Herxheimer looks like, and they diagnose "adverse drug reaction" rather than "Herxheimer". I wrote a piece about this recently here.

Minocycline has twice as good tissue penetration as Doxycycline. They are complementary drugs, each has slightly different mechanisms of action on different bugs.

Minocycline has been used for several decades in Rheumatoid Arthritis by Dr Thomas Brown. I suggest you buy a copy of his book "The Road Back" as it contains a lot of background information you are lacking. Minocycline is proven safe in extended use. Doxycycline is not, and is significantly dissimilar chemically. Therefore you cannot assume that Doxycycline is as safe as Minocycline, although it may be.

Finally, please remember that the French study was a very crude one. I don't even agree with all of its endpoints and conclusions. We have a LOT more data here on sarcInfo - a lot more remissions, using a variety of therapies. For example, the French continued to use prednisone during their therapy, while we have found that ARBs work far better.

..trevor..
ps: This thread is a special thread intended for "Success Stories". This message is not "on topic" and should really have been placed in the "General Questions" thread or the "Minocycline" thread. So after a few days I will hide these few messages so they don't confuse future readers. I hope this answers your questions, if not, please feel free to post more questions in the appropriate threads.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: anonymous (170.135.241.---)
Date:   04-10-03 13:55

If this treatment is so effective, why are there only a few responding to this thread? Do you have any idea how many people are trying this treatment? Has it not worked for anyone?
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-10-03 16:38

Thanks, Anonymous,

I guess I needed a prod like yours to get me to post on this thread. I'm afraid I may be like a lot of people, drawn back into the activities of life, of which I'd felt like "spectator" for a while. There is a big adjustment when you go from feeling overwhelmingly drawn to bed (and rest) - to being pulled back to catching up on loose ends, as well as new projects and activities.

Perhaps there are other people like me, who are timid about sharing the details of how we once lived, parsing out the little energy we had for the most essential activities, then falling into bed to deal with the pain and fatigue of sarcoidosis.

While I don't claim to be at the end of this battle, I am happy with my progress. I still get the Herxheimer response from antibiotics, I still rest as needed, and I'm continuing with antibiotics and angiotensin receptor blockers. This morning I was lightheaded from the Herx and I had a busy day ahead that included a trip to my hairdresser. There was a time when a trip to the salon would have exhausted all my energy for about 24 hours. Yet, today I managed to also squeeze in errands and other activities, without fatigue or pain.

I cannot tell you how often I am grateful to be on this drug therapy, but some of those times are:
- when I awake in the morning and realize I'm refreshed and free of pain.
- when I arise from bed and I don't have a headache or stuffy head.
- when I eat a meal and I'm not nauseated or bloated.
- when I can make a list this long and not forget what I was doing.
- when I see my skin that is cleared of lesions.
- when I go up and down stairs and I'm not afraid of losing my balance and falling.
- when I walk through my house and my feet don't hurt.
- when I walk the length of a grocery store and my hips aren't aching.
- when I walk the length of the mall and I can still breathe.
- when I try on a new outfit and I can "feel" the clothes on my back.
- when I get out of my car without pain.
- when I see I have a smile on my face and a little sparkle in my eyes again.
- when friends and family remark I have more energy - even over the phone.
- when I get a hug from someone I love and I don't recoil from the pain of a "squeeze."
- when I go to bed and I can lie down without feeling pain from the "weight of lying down."

I don't know how many people are on this therapy, but I'm thankful I've had the opportunity to try it. I had refused oral corticosteroids (several times), was on supplemental oxygen and was prepared to possibly, eventually, die from sarcoidosis before I found this site.

Best wishes,
Belinda
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kathleen Stuart (65.121.96.---)
Date:   04-10-03 18:51

Dear Anonymous -

I have posted on this thread, but I would like to reiterate my success. I am a success-pending story, but if I never feel any better than I do today (which I know won't happen), it would be great! I feel like I have been in a coma for the last three years! I am finally able to notice and appreciate life around me. As Belinda noted, many many areas are affected, for the better.

I work at a small hospital, and my co-workers watched my steady decline...they are also recognizing and applauding my improvement - everyone from nurses to the CEO. My family is especially encouraged and appreciative of this treatment - I lost a brother to violence a few years ago, and they couldn't handle another tragedy - which I know, KNOW was coming. Unless I was treated, I was going to die - something I told my physicians. This regimen of Minocin and Benicar, with the decrease of vitamin D, has brought me new life - I can work, I can think clearly, I am beginning to contact friends I have lost touch with during my illness...I am alive!!! It's really exciting to think that I have quite a ways to go - I will only get better!!!!!

As to how many people are on this treatment, I'm sure it is impossible to tell - the "specialists" have so far dismissed this information - something that I find very disturbing, since this is much less destructive than prednisone or methotrexate...and there are many of us who are successful!!! However, not only are patients discouraged from this treatment, but physicians are also. They look to the specialists for guidance, who in turn, IMO, hold fast to their lucrative, agenda-based information, with no room for new (or in this case old) ideas.

I think another reason people are not responding on this thread is that, like Belinda, they are timid to share...and I think we've been told for so long that we are sick, the best we can do is to medicate with painkillers and prednisone, which cause more problems, that success is an elusive thought - eventually, we'll need a lung transplant, or methotrexate, or will die. I know I expected to die, and now feel like this treatment, and every day, is a gift. Many of us had geared our minds to getting worse, and dealing with this for the rest of our most-likely shortened lives. All of a sudden, the doors have opened, and that's not the way it has to be!!! Success, or wellness, can be scary too, especially when it wasn't an option before. I think if you read the other posts on this site, you will see that there is much more success than what is listed in this thread.

Kathleen in Wyoming
 
 Re: ** Success stories- Antibiotics are fixing me
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   04-10-03 22:28

Dear Anonymous,

There are a relative few success stories here because this treatment is brand new and patients have had to fight with their doctors to get it.

I counted 12 success stories in this thread, plus my own (which I have updated). That is not the total nor an insignificant number, especially if you happen to be one of them.

You can wait until there are statistics on hundreds or thousands of patients. Or you can take a chance and try this treatment which has been demonstrated to be effective and has little chance of harming you.

I hope you will be one of those success stories one day,

Meg
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   04-15-03 12:55

Hi
well i can post my own little success story. Actually its a success in the making and the battle continues. I was diagnoses nearly 10 years ago and its only been the last 3 or 4 years that have been a real problem. I was reduced from a sarc patient who would run 22km and then ride my bike as i wasn’t tired to somebody who was ready to die. I felt my life was over and i thought that my wife should move on from me and find somebody who wasnt ill, tired, moaning and just grumpy with pain.
I discovered this website, met with my doctor and i have only been on minocin for 6 weeks and arbs for 1 week. I have started running again, every night last week, started weight training, ive made arrangements to out to dinner with friends. My life is coming back. Now it has really only been good for just over 1 week now and i have had good windows before, but they have never lasted this long. Only time will tell if this treatment really works but i believe in it and i will keep posting on this web site my progress. I fully expect to have a bad turn again but i hope/feel that it will be followed by another good window of energy. We will see.
Good luck and wish’s to all.
Thanks to the contributors of this website.

kev
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me?
Author: wendy (---.stcgpa.adelphia.net)
Date:   04-16-03 11:55

Hi all -
I am so, so nervous about saying "success", so let's just say moving in the right direction. I just got my Vit D lab results which were taken last week... and, the winner is...

1,25 = 51.4 (range is 15-55)
25 = 21.9 (normal range is 8.9-44.6)
ratio = 2.35
In January my D Ratio was 10.86 (1,25=165 and 25=15.2)...

Can I toot a horn and blow up balloons yet??? I think I will wait and be cautious, but man does it feel good to not be so toxic for the moment.

Thanks again to Trevor and Belinda and all for being there and encouraging me to work through this!

cheers,
wendy
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-16-03 12:05

Wendy,
I know it has been a very painful few months for you working through the herx.
That magnifies the admiration I have for your persistence. You had the highest 1,25-D of any of us here at Sarcinfo (165pg/ml). Not only did you have a complete suite of Doctors that were (in my opinion) unhelpful, and you had to struggle to work within their dictates, you also had to endure the herx - really bad herx - even from 20mg doses (at the beginning).

Your 1,25-D is still too high (you know that) and you need to keep working on getting your 25-D down by controlling your intake very closely. That will make you feel even better.

Definitely start the celebrations now - you deserve it There will be tough times ahead, but now you have seen the light at the end of the tunnel... focus on it...

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Bastiana (---.dial.hetnet.nl)
Date:   04-18-03 02:04

Dear Trevor and all! Regards from Holland!

I did not show up for some while, which actually is a very good sign. I learned to master the ups and downs of the herxheimer responses getting milder and milder, myself!

Through all this, being in the 4 months of 50mg minocycline every other day, I can still say that I am on a steady climbing line. Getting better is strange too...as soon as you have regained a part of health you forget the past... I even had sunshine (unliberate) and no big reaction this week! Unimaginable only 2 weeks ago! It would have stroke me on the bed immediately and for long.

Of cource I still can't walk on solid ice, but at least I have my climbing line to look forward to!

I do not work yet and this brought a security docter to the idea that a outing of my pulmonary 'I had refused medication' ...(which I didn't)... would mean that I refuse to get better...he even suggested that all day he had people wanting to be ill, as they weren't...sooo?? It means that here in Holland they are still very confused how to handle indepedant patients; it is like a threat to them... I did not enter this discussion and simply declared we had a different opinion and that next time I visit him there should be a lawyer present. Also I wrote a letter to my pulmonary to inform ME about her opinions before she writes others...and I asked her to settle the conflict.

Of course I imagined a trial...can you all imagine this? Maybe you all come over to support me?

In this 'democratic' country substantial rights have to be gained in a trial, I never could have imagined this! But somehow I gained a new peace in myself, it doesn't bather me much. I could allways start to be a pavement dweller and join in the SDI (Slumm Dwellers International)

I wish you all a pleasant Easter, and for the coming year lots of PROGRESS!!

Warm regards to all of you,

Bastiana

PS: getting better I also start to sneeze again! I couldn't do this, everything was 'stuck' somehow...
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Jillian from North Dakota (---.westriv.com)
Date:   04-18-03 03:05

I was diagnosed with pulmonary sarc about 1979 and have been totally disabled because of it (and other 'weird' health problems which I now believe are mostly sarc related) since the early 1990s.

I was introduced to this protocol when Trevor's simplified summary of the Remission in Sarcoidosis was featured in a newsletter by Joseph Mercola, D.O. last year. After reading it I new I had found THE answer for me. In fact, it was such a "Eureka" moment, that I can even remember the date, the morning of September 15, 2002--and with my sarc destroyed memory that's pretty amazing... . (If you haven't yet read the simplified summary of this paper, there's a link for it on the top and bottom of every page of this site. If you're a sarc patient, you MUST, in my opinion, read it and reread it until you understand it.)

I instantly recognized the sun-induced symptom factors for me. In grade school I used to beg teachers to let me stay in during recess because I was "allergic" to the sun. Needless to say, no one believe me 'cuz, as all adults told me, "You can't be allergic to the sun!"

I have not yet been able to find a cooperative physician to prescribe the meds for me, but I have implemented all the changes I could by eliminating dietary vitamin D and sun/bright light exposure. This alone, has made a tremendous difference.

I didn't realize how much until I 'slipped' a few weeks ago and now am in a sarc flare. I forgot about egg yolks having vit. D and ate a veggie omelet every day for about ten days (and they were only one-yolk omelets), had some egg noodles, a couple of glasses of Vit. D fortified milk (some of my favorite foods), and, because my eyes were so much less sensitive to light, didn't wear my Noir sunglasses in the house.

For days now I've had symptoms that I very easily forgot I used to have day in and day out! Back to the severe-constipation-alternating-with-diarrhea cycle, headaches, irritableness, and the horrible mind-numbing fatigue and disturbed sleep patterns. In fact, my sleep has been so disturbed again that I'm writing this at 3 a.m. after another bout of diarrhea and then laying in bed tossing and turning for hours. Then there's the not being able to get warm, blurred vision, rashes, etc., etc., etc.

I'd like to encourage those of you that are new to this protocol and may that have doubts about it's efficacy and are hesitant to speak to your Doc about it, to do as I did for a couple of months and see your symptoms reduce.

I'd also like to encourage everyone to keep a journal of ALL the symptoms you have before beginning the protocol and how they recede as we get healthier. That'll give us plenty of things to write about in this thread in the future. I didn't think I'd have to write my symptoms down because who would forget! Well, I found out it's easy to forget these miserable symptoms once they're gone!!!

And, I also want to encourage all of us having a hard time finding a cooperative, out-of-the-box thinking doctor that will partner with us in our health not just in our sickness, that it's worth the continued effort it takes to understand this protocol and find a Doc that does too! I feel the amount of energy, time and money (and that's not only my money, but your's too, because I'm on Social Security Disability) I've had to spend fighting for getting better is a crime!

'til later,
Jillian
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me?
Author: wendy (---.stcgpa.adelphia.net)
Date:   04-21-03 08:40

Hi all -

Follow up... Wanted to share more good news.


I made it to 10mg of the prednisone. Coming down from 15mg has been a rocky road, but DONE.

I had miserable days with all symptoms returning, and fierce. The most worrying part was the chest pain and cardiac symptoms. Difficult to sleep,with intense shooting, sharp pains waking me at night and no position seemed to ease it. (This symptom is different from the "pressure" in my chest I get from the Herx)

I punched through, however, and did NOT up my prednisone dose as I was tempted to do. Frankly, I think the reason I could make it through was that I am now not so toxic with Vit D, so the symptoms were tough, but not unbearable.

Am holding steady on 200mg Minocycline and 10mg prednisone. Feeling VERY GOOD! More energy and less --cloud over the head, Eeyore feeling. My twilight garden is laid out and I await a frost free night to plant my seedlings.

Hold steady!

Wendy
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Sheila S (---.gci.net)
Date:   04-28-03 00:49

I don't know if I am a success story or not. I just know that I don't feel like total garbage anymore. And not because I have a great pulmonary specialist ha, no it is because I have a gynological nurse practioner and a chiropractor that was willing to read. In fact the pulmonoligist wouldn't even discuss the treatment nor did she think that I was out of remission. Even though she did admit that I did have clear lesions on left upper and right lower lobes of my lungs and that the walls of the lungs were starting to thicken and harden. I started the doxycycline 100mg mwf and so far so good. It comes at the same time as certain food allergy testing came back and said that I was highly reactive to most of the foods I was eating. I've been off all the (reactive) foods for about a week now and I am feeling better and better. After six weeks I will start the elimination phase of that program to find out what it is that I really am allergic/sensitive to. What is really interesting (more like funny weird) to my doc and me is that most of the reactive foods are great sources of Vit D. I am staying out of the sun even though it is hard to. I live in Alaska so I am a sun worshipper - we don't get much sun. But I believe that like all things good and bad this too will pass. I have started riding my bike to work and walking regularly. I no longer have as much problem breathing as I did even a few weeks ago. I am also starting to use as much home remedies as possible and hopefully strengthen my immune system with a good old fashion boost.
Oh well thanks to all that made this quest for health easier with your knowledge. I've yattered on enough.

Smiles
Sheila
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Di (---.in-addr.btopenworld.com)
Date:   04-30-03 08:13

Just to let you all know how I'm doing.

I've been taking Minocin since last September and I have COMPLETELY STOPPED COUGHING. I had such a bad cough last year that I could get a seat on the bus even in the London rush hour! (I'll have to fake it now). The mucus and swallowing problems are much better, my hair and nails have started growing again and my skin has cleared up.
I have also stopped taking Pred. after nearly a year with practically no side effects, although I still use an inhaler now and again. The only strange things is that, whereas I hadn't put any weight while taking Pred., I have gone up a couple of pounds since I stopped. Perhaps this is just due to the fact I'm feeling well instead of constantly faintly nauseous.
I am still tight chested and short of breath on exertion, like Jan. I think I have some hyper VitD symptoms, but as I haven't been able to get any British 'health professional' to do the tests I can't be sure. I get giddy and tired, plus digestive problems and headaches. However, I am prone to migraines and was told I had benign positional vertigo and also IBS years before I was diagnosed with sarc., so what's causing what is a difficult question.
There was no change on my last chest xray and my peak flow hasn't improved but I'm feeling much, much better!

Di
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-30-03 08:22

Di,
That's great news!

On my PFTs I found that FEV1 was the parameter that improved. Also, the migraines went completely away with Diovan. Have you been able to try that yet?

The herx does come and go - I had a coughing spree start up for a month or so after increasing my dose to 200mg qod - so there is hope for your bus seat yet..

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Eileen (---.client.attbi.com)
Date:   05-09-03 08:16

Well all the results are in!!!!!!!!!!!
2 months ago my blood results were
ACE 69.8
D-25 14
D-125 40

My NEW results, and mind you, I have not ever been on steroids, etc...

ACE 26.8

D-25 15

D-125 33

The enlarged lymph node in my neck is half the size, the pea sized nodule in my arm (that I have had for 7 years now) is gone.
I am so happy!!!!!!!! Thank you Trevor!!
Eileen
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kathleen Stuart (65.121.96.---)
Date:   05-18-03 18:23

Hello all -

I haven't checked in for a while, and I wanted to update the success thread!!

I recently had a few weeks of really feeling crummy; as Trevor suggested, I stopped the Minocin until I was feeling better. I am now better, and have am back on the every other day regimen. While this isn't necessary "success", I look at it as the fact that while I really felt bad, I knew it wouldn't last - before when I got sick, I just got sicker - none of that annoying wellness to worry about!!! But now, despite bad days, or even weeks, I know it is getting better!! (I saw my doc during this feeling icky period, and even then he was encouraged with my progress!!!)

So following those few weeks, I am working more and better again, and I even bought some new clothes - I am certainly larger than I was, but since I really love clothes, I thought I would try to find my style, and this will also help me feel better!! And just a few months ago, I really couldn't have cared less about my appearance!!!!

Once again, God Bless You, Trevor - I even feel like going to a ball game (at night, of course!!)

Kathleen in Wyoming
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Jillian from North Dakota (---.westriv.com)
Date:   06-20-03 18:05

An update.

I discovered Trevor's papers, thanks to Dr. Mercola's newsletter, in September 2002. I emailed Trevor and he gave me the link to this site. I studied the papers, printed them out, and went with great excitement to my GP with the info. She agreed to the D tests, but because my D ratio was not excessively high, she did not feel I needed medication. (BTW, her mentor and good friend is the pulmonologist she had sent me to, I've wondered how much influence he may have had in her position...)

Then I went to Doc #2, who wouldn't do the protocol, then Doc #3. In May, Doc #3 prescribed the Minocin because I have acne; he gave me a three-month presciption. He agreed to this after two visits, but at both he told me over and again about the miracles of Pred as treatment for Sarc. (I have never taken Pred and told him that unless I was at death's door I wouldn't. He was very upset at that.) He would not do the ARBs at the dosage required for Sarc (he'd only start me at the lowest Benicar dosage per day that is used for mild hypertension), so I refused the ARB prescription. (See Trevor's papers on ARBs if you don't understand why that dosing is inappropriate.)

As I'm eligible to get meds at no cost from the manufacturer (I'm on Social Security Disability due to the Sarc), it takes 4-6 weeks to get the meds. In the meantime, someone told me about Doc #4 who they felt was open minded and caring. I was hoping he'd do the ARBs and any futher care I'd need. He may be open minded about some things, but he didn't want to do this protocol either!!!

Needless to say, it's been VERY frustrating! My chiropractor has called an MD friend of his who has agreed to follow up with the Minocin with me. I'm going to approach him about the ARBs too and see what he says, but at least I know I can get follow up care!

I got my Minocin and, to date, have had 8 doses.

A mere 8 doses of Minocin and, even with the herx'ing, I feel better than I have in 10 years!!!! In fact, I was amazed that for me there were good changes right from dose one.

One major change was that for the past year I've basically only been able to eat bland carbs because of terrible GI problems. That mostly changed after the first dose. (It is good to eat a variety of food again .)

Also, the fatigue is not as bad. (It's not anywhere near normal, but I'm more than thrilled with any change for the better. Used to be that most days I hardly had enough energy to brush my teeth and get dressed.) This last week I helped a friend clean out and organize her art studio--we worked about six hours a day for four days straight, then a couple more on day five. Just a few weeks ago that would have been impossible.

The herx's, in general, have not been a whole lot worse than my normal symptoms. I must admit that the last couple of days have been tough, migraines more on than off for three days, but knowing that they're short lived and a sign of healing makes it all worth while.

The anticipation of being a normally healthly, working person again is thrilling. I can't wait!

Thank you again, Trevor, for your continued time, support and energies that you put into this site and to helping us all. Also, thanks to the moderators here that support us too! I appreciate you all more than you'll ever know.

'til later,
Jillian
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-20-03 19:59

Jillian,

You are an inspiration. I'm so impressed with your determination and persistance. You will give others the confidence to stand up for what they believe in and not to give up. I'm delighted that the minocycline has affected positive changes already. Now that you've proven the existence of occult microbes in your body with the Herxheimer reaction, perhaps your new MD will order the Benicar so you won't have to suffer so much.

Congratulations!!

Meg
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-20-03 20:21

Jillian,

I am so happy you are finally getting treatment! Way to go!

When you speak to doc #5, be sure to mention the bad migraines you've been having. Perhaps this will convince him to allow you a trial of ARBs because they are being used to prevent migraines.

Maybe it will help to show your new doctor this article about the non-hemodynamic effects of ARBs.

Good work, Jillian.

Belinda
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kathleen Stuart (65.121.96.---)
Date:   06-22-03 18:19

Hello all -

A quick update of continuing success...last week I was having some pretty bizarre herxheimer - hallucinatory things - such as spider webs over my face when I woke up, and seeing things that weren't there...however, I persevered with the Benicar, and stayed on the minocycline 100 mg every third day, and this week I am doing FANTASTIC!!!

I had my annual job review, and it went great! My employer is very, very pleased with my progress - my improving attention span and cognitive ability, and the fact that I can work more hours. I am incredibly blessed to have an employer that will accomodate my illness and need for as little sun as possible, and a tolerance for my changing ability to do work.

I feel wonderful and energetic; and am truly becoming interested and involved in life again!

Thanks to everyone and your posts - you are all also a vital part of my recovery - it is such a comfort to be able to share both good times and bad - and get such excellent and helpful advice. And thank you Trevor, Belinda and Meg!!!! .

Y'all take care!!!! (the y'all for Tammy - I love Texans!!)

Kathleen in Wyoming
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Jillian Holston (---.ne.client2.attbi.com)
Date:   07-14-03 07:32

I didn't think an active life was going to be possible for me again before I read the information on this site!

But, after being basically bedridden in North Dakota for nearly 10 years with sarc symptoms, and after only a couple of months on minocycline, I'm visiting friends in Boston and the seacoast area of Maine (where I had lived for years).

I'm not only able to stay up all day, but yesterday we went for brunch, toured the seacoast, spent the afternoon and evening talking and laughing with friends (I had forgotten that it's easy to laugh and socialize when you feel good), then topped the evening off with walking Long Sands Beach in York, Maine. I, personally, at the end of the day, walked a good 45 minutes on the beach! Frankly, that action alone deserves an Olympic Gold metal! And, walking it wasn't due to some extraordinary effort, I just did it. (Before minocycline I didn't have the energy to shower every day. Walking to the mailbox at the end of the driveway was sometimes all I could muster the energy for.)

And, with all the bright sunny skies and reflected light from the ocean, I've had no D surges, not a single one! (Yes, I still wear a hat and my Noir sunglasses, but I've had to stop using the darkest pair of Noir sunglasses I have because they are just too dark. When I'm outside now I wear the Noir sunglasses that were required indoors pre-minocycline!)

In fact, I'm feeling so well that I believe within the next couple of months I'll be well enough to work again. I've been on Social Security Disability for 10 years. Employment opportunities within my line of work are difficult to find in rural North Dakota, so I'm going to be moving back to New England. (Before the minocycline treatment, even the concept of moving would have been overwhelming...)

So, Trevor, I am greatly endebted to you! Thank you. (And, Trevor, if you need to contact me, please use this email address because I'll be changing ISPs when I move.)

I don't expect to be back very much to sarcinfo because I intend to be out and about living my life to the full as much as I can.

'til later,
Jillian Holston
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: DJ (---.nas5.billings1.mt.us.da.qwest.net)
Date:   08-02-03 18:56

Hi all!

Just an update on how ARBs and antibiotics are helping me.

I was diagnosed by biopsy with Sarcoidosis in February of this year. By that time my symptoms were so severe I had quit working and was virtually bedridden. I was taking strong pain killers, NSAIDs and anything else that would help the pain. Fortunately by the time the diagnosis was confirmed, I had discovered SarcInfo and was able to discuss the most current research with my general practitioner. Although he made the usual recommendation of prednisone treatment (which I refused) he agreed to sign on as primary doctor for my sarc care.

After one month of sunlight/vitamin D reduction my symptoms began to let up a bit. D- ratio at this time was 1.65, ACE 47, ESR 50, Ca normal, BP averaging 145/90. I started Minocycline and worked my dose up to 200 mg QOD which is the level that significant herx occurred. My symptoms slowly began to improve and I was able to discontinue all NSAIDs and pain killers.

After about 7 weeks of antibiotic treatment, I was able to get a prescription for Benicar 40mg 3xday. My doctor wanted me to start out slowly - only one dose a day for a while. This was a big mistake as it made me feel horrible! It took about 3 weeks of ARBs at full dose and I noticed a large drop in my sun sensitivity and other symptoms. Before Benicar, I was still sleeping half the day, and unable to venture out of my darkened house during daylight except for doctor's appointments. Even a few hours outside would put me back to bed for a a day or two. My blood pressure stabilized at 107/78 and has remained close to that regardless of what dose of Benicar I take.

At 3 months of Minocycline treatment my D-ratio was down to 1.36, and the individual D levels close to optimum for sarc patients. To test my progress I discontinued both Benicar and the antibiotics for a couple of weeks. I was virtually symptom free, although my BP went back up and I could not tolerate as much outdoor time as I had before.

Now at 5 months of treatment I am back to work full time. Herx reactions or prolonged sun exposure will still bring back minor symptoms, but if I behave myself I feel almost 'normal'! I consider this amazing progress when my doctor gave the prognosis of 2 to 5 years for the mythical "spontaneous remission," or possible life-long degeneration.

My story is not yet finished. I am continuing on Minocycline and ARBs, with occasional courses of Bactrim which still give me major herx reactions. I am learning to tailor my treatment to fit the demands of my schedule and the responses of my body. There have been no negative reactions to this treatment and I have no qualms about continuing it as long as necessary to bring true remission. Thanks to Trevor, Liz, and the SarcInfo team for restoring my hope and my life!

DJ

 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Ms Dale (---.proxy.aol.com)
Date:   08-03-03 18:41

Many of you already know me, and for those who don't, you will by the end of this post. 

For years and years I have been so very sick from Sarcoidosis.  I have experienced bizarre symptoms and physical challenges - from minor nuisances - to very severe.  I, like many of you, have tried every drug from A to Z to try and combat this affliction of Sarcoidosis.  I have swallowed, injected and been injected, with more drugs than I like to think about - as it makes me shudder......

Then came about Dr. Trevor Marshall - with his protocol of Antibiotic and ARB (angiotensin receptor blocker) therapy - and claiming it was an answer of relief for those being beaten up by this unrelenting disease.  Skeptical?? - you bet I was!!
( I see many of you nodding your heads as you are/were also!)
But I thought - what the heck?  I have put about every other drug into my body that has been tried on Sarcoidosis....why not something surely LESS evil than the drugs I have taken in the past and present.  Besides...I have been told that I have chronic form Sarcoidosis - which has been hell bent on the destruction of my body and the quality of my life thus far.  So - what do I have to lose??  Nothing can be worse than what I have already swallowed - injected - or been injected with !! 

On the QT - I started the Antibiotic - Minocin ( November 2002 )  -- and then the ARB -  Benicar ( January 2003).  I am doing so well - that to list ALL the positives that have taken place for me - I would surely run out of space on this post. Having had several months behind me in taking the Minocin and Benicar, I now feel ready to shout  - how much better I am feeling and progressing in physical performance - ( with my doctors backing me up)!

I know many of you are frustrated just trying to GET the doctors attention regarding this protocol Trevor has discovered.  Trust me...it has not been easy for me either.  But lets be honest - what HAS been - in struggling with Sarcoidosis??  I am not immune to having had to fight for myself. 

First - I had to get a doctor to go along with it.  I pounded papers off from my printer and did some heavy duty verbal convincing.
Then, when I got what a wanted... Sheesh! I went through Herx flares that put me on the couch - OUCH! - but made me even MORE determined to stick it out....as I was getting proof I could not ignore - that the Antibiotic was having an affect -  and then it all started to get better.....I am slowly improving more and more.

The first results that were most dramatic was my LAB tests.
Dr. Marshall has found that the lower the LYMPH count the sicker the patient is with Sarcoidosis.  My LYMPH count was at 5% (low) on a
reference range of 20.0 to 50.0% and the NEUT was 91% (high) on a reference range of 45.0 to 74.0%  ----

I had not a clue that these findings had anything to do with Sarcoidosis and how I was feeling. But I sure knew I was sick!! The immediate results after starting the Minocin and after years of abnormal lab tests - were amazing - they are now NORMAL.  I have not only started to feel better -- I have had so many positives happening - my doctors are "stunned" (quote) with how well I am doing.

And because those who know me, also know, that I speak my mind... I would like to go on to say... Dr. Trevor Marshall has been treated not so very kindly by many... - given the oh "Phooey" on what he has discovered and tried to publish - but I will say to you -do not knock it - unless you have tried it.

To those who have tried it and are not "quite" sure it is for them (very few) - lets be honest here and leave some room for possible patient and doctor error. (This information may be helpful for anyone considering trying this protocol also.) Was the drug Rx'd properly? (the amount that is suggested in this protocol? - be it the Anti-B or the ARB?)  How long did you stick with it?  Did the fight to get refills on the RX from your doctor - out win giving this protocol the best shot possible?  Really think about it....  I am not saying this to question what you felt or did not feel or what you did or did not do ( and this includes your doctor also)  -- all I know is that for me it did not happen over night.

Or maybe you can think of areas where you did feel "a little better" when you started the AntiB -- but maybe went off the drug because you were expecting and wanting more immediate results - which eventually over powered your patience. Yet - lets be honest - we have been willing to put much worse medications (other than an Antibiotic and/or an ARB) into our bodies for years... and taking some for months as we waited to see results - which never happened.

Or maybe you were experiencing not so pleasant results while on the Antibiotic. Were you experiencing Herx flare symptoms?- but because you have been feeling so lousy, for so long, with symptoms galore from the Sarcoidosis - that you automatically just figured your Sarc was on the attack or getting worse - so decided the Antibiotic cannot be working- and you stopped.   It could have been the Herx - you know - where the "Antibiotic" was on the attack - which would have been a positive result....although I know it does not feel so positive when you are actually going throught it. You think - that all your Sarc symptoms are returning with a vengeance.  Just decrease or go slower on your dosage of the Antibiotic. Time... can make all the difference.  One of my most favorite sayings is.
Patience... in time, even grass becomes milk.

So, why not give the Antibiotic and/or the ARB the time it may need to make a difference in your body - before you say anything negative about this protocol.  Sarcoidosis did not do all that messing around in your body in a day - a month or even a year.  I ask you to be patient -  I was - and it "is" making a difference.

Lastly, I would like to address the "stirring" of the medical professionals when they learn or are approached by their patients regarding this protocol -- I say - you are NOT the ones dealing with feeling so sick and having the hellacious symptoms - so listen to what is being proclaimed to work by those who have actually tried it and are having success. Write the RX's when your patients ask to "try this" - as they have nothing to lose - except a few less doctor appointments.

Dr. Trevor Marshall has made a HUGE discovery and difference in the treatment of Sarcoidosis. He shall see his protocol become worldly accepted and essential in the medical treatment regarding Sarcoidosis.
He has my profound gratitude for the work he has done.

Sincerely and respectfully submitted:  Ms Dale ( aka Ms Dale C. Thurlow)
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Jan Lewis (---.lgeenergy.com)
Date:   08-04-03 11:08

I haven't written in awhile. Reading how sick so many are with sarcoidosis made me realize how truly lucky I've been overall. Despite Dr. Marshall's warnings about "supplements", I truly was blessed to have found a whole food neutraceutical with enough scientific evidence backed with journals, websites, magazines and textbooks to convince me it was ok. I eliminated sarc symptoms within 3 months and lived a very normal life for 2 years. In late December of 2002, I learned I had two kidney stones and the sarc had further spread. I went on Minocin in January, Benicar in February. Continued to have pain in my right side which I was attributing to my liver. However, after much thought and process of elimination, I now believe that continued pain in my side over the course of the past two years has been due to repeated kidney infections. (An article in our paper now indicates that these bacteria "colonize" making them difficult to eradicate.) I stopped Benicar around 6-8 weeks ago, I think it was. My BP was extremely low and causing me extreme dizziness. However, I am grateful for their usage in getting my D levels to my current 1% ratio now. I am in the sun whenever I want, have added some D foods back to my diet, and still take 200mg. of Minocin every other day. I am not getting as many kidney infections although they are still occurring now and again. I have managed to overcome the worst of the pain in my neck/shoulders with the aid of PT, chiropractor care, massage and muscle relaxers.

Now if I can get my hormones straightened out!

Anyway, the good news is I feel fine. But, have really not had so many of the issues others have had. I've had little herx episodes, mainly just in the first few weeks of adding Benicar.

I am uncertain how CT scans will turn out as I haven't had any now for 8 months. But, other than a tad bit of a wheeze which comes and goes as the mood seems to strike it, I seem to be ok.

Best wishes to all with continued thoughts for your speedy recovery and many thanks to Dr. Marshall once again.

Jan Lewis
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Louis (212.42.171.---)
Date:   08-05-03 01:13

I'm on day two of my second week of taking minocycline, in which I have increased the dose from 50mg to 100mg a day. There have been a few herxy moments thrown in, but thanks to the warnings provided on this site I had cleared my schedule and toughed them out. I'm prepared to skip a day or two if it gets to difficult.

The discomforts of herx don't come close to overriding the fact that I am feeling physically and mentally good, for the first time in years. It's quite a different feeling from being symptom-free: my energy levels are right up, I feel less giddy, my nose is magically working, my short term memory does what it ought to and my all round mental ability are much improved.

It's very early days, I know, but I am beginning to think this could really be the end of a difficult few years struggling hopelessly with this illness. Thanks to Trevor and the rest of those in the know for showing me a better way to go about it. I will be sure to report back further down the line.

My very best wishes to everyone with sarc and those who care about them.
Louis
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Lowelle Messner (---.73.183.180.Dial1.Chicago1.Level3.net)
Date:   08-08-03 05:14

I haven't posted in this section, because I wanted to give the Benicar/Minocycline some time to show results. It has been about 3 months, since I started this therapy.

My Sarc was found in January of this year, through a biopsy of an enlarged lymph node in my groin and tissue taken from a very large tumor on my hip. It was determined that I have Sarc in my lungs, spleen, liver, lymphatic system, neuro and behind my right eye. My Pul-monologist (I should say X-pul-monologist!) put me on 40mg of Prednisone/day. Shortly after being put on that awful drug, I found SarcInfo.

My quest to have someone listen to me and help me start this therapy, drove everyone around me absolutely crazy. Not one person could understand that I knew what I needed for my own body. It took me 4 months to find a Doctor who finally heard me.

Since I started on this therapy, my life has improved greatly! Over the past 5 years, I had been given so many different meds to help me deal with the problems, which no Doc could diagnose. As of today, I am totally off of Prednisone, have reduced Neurontin from 2600mg/day - 1800mg/day and Vioxx is down from everyday to 2x week. I have lost 8 or the 25lbs that I gained on the Prednisone! The back brace, that I have worn for the last 3 years, has been in the closet for a month! I am able to train horses again! Everyday there is an improvement.

Yes, I have herx. I listen to my body. When I need to take it easy, I do. Because my body is so involved, I understand that this will be a long process, but I know that there is a remission waiting for me.

The work that Trevor has done for us is a wonderful thing! My hope is that the Medical community will finally open it's eyes to the possiblities.

Lowelle
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-12-03 22:20

The following was posted in the Neurosarcoidosis thread on 12 Aug 2003 by MsDale

Yvonne,

I was greatly physically challenged due to what was referred to as
Sarcoidosis in my nerve roots. I also have had the full spine MRI's
and etc's -- to verify the severe degree of ( granulomas) in which the inflammation was causing major havoc in my ability to physically function and produced the horrible pain I have endured for years... throughout my spine and down into my leg (sciatica)

I began the protocol of Dr Trevor Marshall's - introducing the anitbiotic
Minocin 100 mgs every other day in November 2002. I am now extremely mobile - my wheel chair and walker both collecting dust - and my doctors "stunned" at how well I am doing.
I also added the ARB (Benicar) in January 2003.

Were anyone to approach my medicine cabinet in the attempt to steal these drugs from me - I am now physically capable to beat them to a pulp with my cane.
And I honestly feel - that someday in my near future this cane will also find its new home -- resting in a corner against the wall. I have been able to enjoy life more than I have in eight years since being diagnosed with
CNS Sarcoid involvement. And have improved in all areas of physical well being since my first "abnormal" chest xray showing Hilar Adenopathy in
1980. I ask for anyone to read in depth, the alternative drug therapy introduced within SARC INFO.com -- before making a decision on what treatment you are considering subjecting your body to.

I have swallowed, injected and been injected with drugs far more evil than the Antibiotic and ARB I now smile with, as they glide down my throat.
And I will tell you and anyone else - that I will be forever grateful to "Trevor" for giving me back some normalcy to my life.

Ms Dale (aka Ms Dale C. Thurlow)
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-12-03 22:23

The following was posted in a "Benicar - Wow" thread on 11 Aug 2003 by John

Just a quick visit to check in and report back results so far.

On the therapy since the end of May. Dramatic improvement across the board.

The Benicar is amazing in the relief I get from the muscle pain and fatigue. The first pill I took had almost complete relief within minutes after taking it. Unfortunately, after being on the 3 times a day 40mg for three weeks, I decided to stop the Benicar because it lowered my blood pressure too much. I do a lot of bending and knelling and I felt dizzy all the time. By this time I had moved up to the full dose of minocycline @ 200ml every other day and was doing ok with the herx. I do take one pill on occasion when I get a bad day mostly right before bed as it relieves the pain fast. As I live at the Beach and spend a lot of time outdoors, the bad days are caused mostly by a lot of Sun (several hours). Starts with the dry cough and then the body aches kick in big time. Even this is alleviated for me with a Benicar. I know it is not suppose to work unless you take it all the time but it does for me.

After a couple weeks of felling so much better on this therapy, you start to think that you may be free and clear of this thing once and for all. But those out in the sun days remind me that it is still there. lol

I might add that I would presume a lot of people that try this therapy and get the positive results may not come back to this site and report in as they get on with their life. When you're feeling like crap all the time, your focus is on getting better and all the searching one has to do to find the answer. So when you get the kind of relief I have received, there is a tendency to live your life much more which is understandable. But, please remember the others that have just now found this site need some positive feedback and the more that post the results here the more courage the newbies will get when the decide to give it a try.

Although time will tell if this therapy works in the long run, I am cautiously optimistic as this is the best I have felt in years so far. We will see but in the meantime, I am enjoying the ride.

Later all
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-17-03 18:58

I want to share with everyone my recent chest CT results. My lungs have improved considerably. The radiology report said,

"The current study demonstrated considerable improvement in the confluent mediastinal lymphadenopathy noted on the prior exam. The interstitial thickening noted on the prior exam is also considerably improved. Right interlobar soft tissue attenuation thickening noted on the prior exam study has nearly completely resolved on this current study. Nodularity is noted on this current study but has considerably improved since the prior exam."

I have not had any prednisone or inhalers since I was diagnosed with sarcoidosis in April 2001, after suffering for some years. Due to the extent of involvement in my lungs, doctors repeatedly recommended oral Predisone, but I was afraid of the well-known side effects and refused that treatment. The only medication I have had, other than cough and pain medicine the first month or so, is the special dosing of minocycline, Bactrim DS and Benicar discussed on SarcInfo. I have been on the low-dose alternate day minocycline for one year now, and Benicar for nine months.

I am thrilled with my progress, which is visible both on CT and X-ray film and in my life. The results are better than I had hoped might be possible.

My best wishes to everyone.
Belinda

 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: ~Tammy~ (---.pars.cox-internet.com)
Date:   09-17-03 20:47

Hello Everyone!
Just a note to say hi, and say how much better I am feeling! It's amazing! This last month has been great....most of it! I have had my D's and some other tests run and am waiting to hear back on the D's. I am thrilled to feel so much better. I KNOW the mino and the ARB's are working. Prednisone never made me feel this way. I have increased my mino to 150mg and can feel some herx, but the ARB's are really helping. My body is starting to come back to normal. It has been years since I have felt this good. I hope others will read this note, and have hope that they too can get better. I know I still have a longway go, but I am seeing the light. Even my sinuses are behaving! YEAH!!!! Well have a great night and God bless. Thank you Trevor and all the others who have worked so hard to get this treatment started.
~Tammy~

P.S.
Trevor...I'll have some more Lymphocyte info for you this week. It is very encouraging!
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Lowelle Messner (---.73.183.148.dial1.chicago1.level3.net)
Date:   09-19-03 06:08

Good Morning!

I just had to write, even though I had posted a couple of months ago.

My husband and I just returned from a Trans-Atlantic cruise. We flew from Boston, MA to London, then boarded a bus for a 2 1/2 hr. drive to Harwich, UK. The trip was long an a bit exhausting, so I spent the next day at the port in France just relaxing.

We had an 8 hr. travel day at Plymouth, UK. We made it to Dartmouth, which was lovely. Unfortunately, we were diverted from Ireland, because of an incoming storm. As it was, we had rough seas and moderate gale winds on several days of the crossing. It was like riding a 24 hr. roller coaster! I must have been rocked to sleep, as a baby, because I haven't slept so well in a very long time. Of course, there were many empty seats during the meal times and barf bags on the stairwells! Unfortunately, I didn't miss a meal. Ha!

We did get to stop in Nova Scotia for a few hours, since we didn't get to Ireland. This was a good thing, because I had saved all of my money to purchase gifts in Ireland. The economy of Nova Scotia is doing well.

On the days at sea, I was able to do the mile walk and we spent 2 hours walking around Kennebunkport,ME. I guess what I am trying to say is: there is no way on God's Green Earth that I would have been able to do this trip, if I hadn't found a Doctor who would help me with getting on Benicar and Minocycline!

Trevor you truely are a Godsend! We are already planning our next cruise to Alaska, or maybe even Australia/ New Zealand! Because of these wonder drugs, I know that I will have the energy to do whatever comes along.

Thank you so much!
Lowelle
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Christian (---.ipt.aol.com)
Date:   11-13-03 16:34

Hi Trevor!
It's been a while since I posted. I had plenty of problems; wife decided to leave me and I'm in some kind of legal battle with employer and insurrer. Well just want to report my progress. I still take Minocin , sometimes a 5 days in a row @ 200mg and then 1 or 2 weeks off. Had to drop the Diovan, because it was really bringing me down.

The up side
1) Recurring tonsil infections gone (thanks Trevor for your advice on tonsilectomy a while back; good thing I was not butchered)
2) Some decrease in leg pain.
3) Dreams are back, after being gone for years!!
4) Maybe 5 % more energy
5) In the last few days I was in good mood, which is extremely rare.
6) Seem to have a little bit more stamina
7) Seem to have a better tolerance of sunlight

The down side
1) Major symptoms have not improve a lot. Still I'm very exhausted all the time and stomach pain is always there 24/7.
2) Pain has increased a lot in the neck area.
3) Brain fog still a major problem.

I guess it will take time. But I think I am moving in the right direction. Just to have dreams (even if the sleep is unrefreshing, as before) is worth the therapy.

I started to do some light yoga at home and it seems to help for the pain. Still avoiding D-foods and sunlight. I'm fasting also sometimes for a day or two and seems to help. I avoid like the plague refined sugar, dairy at large (except for yoghurt), coffee, tea and alcohol because these definitely worsen my condition. I'm using Tylenol 500 mg (1 or 2 at a time) for pain management but it is not truly efective. I still don't have a definite sarc diagnosis cause everything came back negative EXCEPT high 1,25. Endocrinologist agrees that I have hypervitaminosis D but is downplaying it saying that it is slightly elevated (144, 108 ,163 pmol which is in my opinion high). Said it was idiopathic (doctor speak for "we don't know, we don't understand and can't explain it") and wanted to PRED me, which I refused. So far FINAL ANSWER for me is Chronic Fatigue Syndrome with Idiopathic Hypervitaminosis D. I will focus on the Hyper D and believe the CFS will disappear. Will go soon for D metabolites testing.


Not yet a success story but keeping going.
Christian
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-13-03 16:55

Christian,
Good to hear from you again, and sorry to hear about the family hassles.

Yes, its nice about the dreams returning, isnt it...

Most of us followed a similar recovery track to what you are describing, with good gains in the first 6-9 months of Minocycline alone, which then tended to tail off, and some even regress.

You might need to continue weekly 500mg top-ups for 2 or 3 months, but you will be able to drop your Minocycline back to 100mg q48h again.

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.aep.bellsouth.net)
Date:   11-13-03 20:10

Christian,

One other thing to add to what Trevor said; did I understand you to say that you are taking 200 mgs. Minocin for 5 days in a row? If so that could be the problem. You aren't giving yourself enough time to let the endotoxins dissipate.

Also, for me Benicar has helped tremendously. If you're on Diovan (or were on it) you were not getting the full benefit of Benicar's protective features which lower 1,25-D and buffer angainst the inflammation that increases during herx. You should really try your best to get ahold of the Benicar.

Keep posting,

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Christian (---.ipt.aol.com)
Date:   11-14-03 04:54

Trevor and Pippit,


Thank you for your replies. I will try to get A but it will be difficult. It is still unsure if I'll still be able to have Minocin. Pippit you read well, I use 200 mg per day 5 days in a row. I've done it once and took two weeks off, and I'm ending today the second shot @ 200 mg. I plan to take a 1-2 weeks off. I might return to the old regimen of 100 mg M-W-F. That was just an experiment I was conducting on myself. I didn't get any noticeable side effects, maybe just a little bit more fatigued and brain fogged. I discontinued using Diovan as I found out it really increased my tiredness and fatigue. Unfortunately, Benicar is still not available here (and I guess it will take a long time before we get it here, because of the dispute involving americans buying cheaper meds in Canada via Internet. Pharmaceutical companies will find a way to retaliate...)


Good health to all. We will pull through. God won't let us down.


Christian
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Margo (---.dsl.intrex.net)
Date:   11-25-03 07:12

I just posted something about my daughter's improvement in another thread (Children with Sarc). Her irritability has mostly vanished since the last pulse of A. We had always noticed how irritable she was when she wasn't feeling well, and how she became more irritable when she was experiencing other symptoms of a Herxheimer reaction. Now, when she has a Herx. reaction, the irritability symptom is mostly gone.

Margo
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: peggy (---.nas30.oakbrook1.il.us.da.qwest.net)
Date:   11-28-03 13:22

Trevor,

Today I took my third Zith top off. Herx is not bad at all. A bit tired but no real aches and pains. Sleep well also. Still have bit of "mind fog".

This will be my third month of being on your protocol. Should I be concerned about the ACE levels changing from 18 to 36? Also, the ratio seems to have remained about the same albeit the 125 and 25D numbers have lessened. My read on this is that the 25 D levels are getting under control but there is still quite a bit of active inflammation with 125D of 57.

There is NO comparison to how much better I feel today than one year ago. We were discussing this over Thanksgiving dinner about the remarkable and noticeable difference. One year ago I was pulling muscles in my ribcage because I was coughing so much. Today there is no cough to speak of!

I appreciate and respect your input.

Sincerely,

Peggy
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Jim Sellers (---.rjrt.com)
Date:   01-12-04 05:04

Trevor,
The Doctor who has been treating me requested that I have a new chest X-Ray done to see if the treatment has changed anything. I had the X-Ray done the last week in December and I received the results Friday. The Doctor’s office called and said that the enlarged Lymph Nodes in my lungs had shrunk significantly since the prior X-Ray that was done in May. I don’t want to get overly excited and thinking that I am “almost” cured, but I feel that this is definitely good news.
I have been on M now since about August and was up to 200 Mg qod. I started the Z+M (reducing the M back to 100 Mg qod) around Thanksgiving and felt like I had a severe cold the entire week, but I held on and completed the Z from your original dosing schedule. I am now on 200 Mg of M qod and 250 Mg of Z once a week. I am experiencing some minor breathing difficulty the first 3-4 days after I add the Z, but it clears up before the next dose. Do you have any suggestion on where I should go from here?
Thanks for your dedication to finding a cure and maintaining this site helping those who had no hope.

Jim

PS Back in June, when I was at the beach, I was experiencing severe brain fog and other typical sarcoidosis symptoms. I originally thought it was due to sun exposure. I do understand that the sun affects sarc patients, but it may have been aggravated by something else. When I went to get my Z prescription filled, the pharmacist mentioned that I had Z back in June. Then I remember that I had a small amount of infection from my biopsy and my GP prescribed an ABX to combat it. The herx that I was having may have been from the massive dosage of Z that I was taking.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-12-04 05:18

Jim,
Good to hear Doc is seeing progress too. Sometimes the Xray is the last to change. Partly because the lung bugs seem to be really resilient, I think. But the improvement which folks are reporting here is backed up by the MRI reports, CT scans and bloodwork that they send me.

Shortness Of Breath is pretty normal on Z+M. I wish these bugs would just go away without leaving their endotoxin 'calling cards', but I guess we just have to play the hand of cards we are dealt...

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date:   01-12-04 09:01

Karen - I have moved your message to the thread "UK Sarcoidorians. This topic is for "success stories" about beating the disease.

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Guss Wilkinson (---.idgwaikato.govt.nz)
Date:   01-22-04 19:28

Hi Trevor

I have just come back from seeing my lung specialist, Dr Noel Karalas and apparently, my chest x-rays are completely clear and my lung volumes have improved dramatically.

I presented him with a bound copy of all the articles on this site and he said “Hey, if this is the Marshall that used to live in Perth, I believe I know him, or at least know of him through a colleague.” – I have no idea if it is you or not but he claimed to know of some other work that you had done.

Due to the dramatic improvement, he doesn’t want to see me for another year now, but he was now very interested in the protocol and will read my folder with your research.

He said that he has long been sceptical about the long term benefits of Prednisone and he always tells his patients that: but he prescribes it as he didn’t previously know of any alternatives. He said that he may ring you.

I am still feeling crap, but it is just the herx – still can’t walk around the block.

My new Karate class starts next week – I hope they enjoy training with somebody who barks orders at them from a chair.

I thought I would share my improvement with you. I will be having my D-levels taken next week: this time with the full co-operation of my specialist.

Cheers and thanks

Guss

 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-22-04 19:39

Guss,
Yes, Doc may well know me from Perth. I taught at Curtin University (used to be W.A.I.T.) for 7 years and got my PhD from the University of Western Australia, studying (with the best mentors ever) at QE II Medical Center.

During those years UWA produced Barry Marshall (no relation) and Trevor Marshall. Barry turned medicine upside down in the late '80s, and now its my turn...

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Guss Wilkinson (---.idgwaikato.govt.nz)
Date:   02-02-04 12:14

Hi Trevor

I am moving my post here as requested…

I was diagnosed with stage II Sarcoidosis in 2002 after a lung biopsy but I now suspect that I have had this disease for about 15-years

I started treatment in May 2002 with Prednisone 30mg for One month, 20mg for two months, 10mg for two weeks, 5mg for 1week - then decreasing 1mg per week until off.

But in May 2003 X-rays were not clear and I was still at stage II – a full relapse.

I began a second course of Prednisone 30mg for One month, 20mg for two months, 10mg for two weeks, 5mg for 1week - then decreasing 1mg per week until off, after which I swore never to go on to prednisone again.

I suffered the same side effects both times – initially a euphoria and masses of energy, but then the insatiable appetite, the fluid retention, the weight gain (a bugger to get rid of afterwards), the mood swings and the hair-trigger temper that would see me fly into a rage for the smallest of things.

After being contacted out of the blue by one of the site administrators, I undertook to evaluate the research on this site together with a doctor friend of mine. Even though my wife had had Sarcoidosis 7-years earlier, I had thought myself fairly alone in my suffering but reading all the threads helped me to understand that this was by no means true.

I started Marshall Protocol at the end of October 2003 after presenting my GP with a bound copy of the research on this site and convincing him that there was no ethical problem for him as the drugs involved were harmless.

The Olmesartan was not available in New Zealand so I had to import them privately from the UK though a local pharmacy – they were extremely expensive.

At first I felt no herx, which had me worried, but after two weeks it hit me square between the eyes and I was left in no doubt that I was on the right track.

In Nov 2003, my X-rays were still not clear.

Three/four weeks ago, I started adding the Azithromyacin to the Mino - Olmetec.

I am still suffering quite powerful "Herx" symptoms which include very severe fatigue (which is now already significantly better), flu' like symptoms, headaches and an unbelievable cough, which is not like the unproductive dry cough of Sarcoidosis.

This has resulted in a total intolerance to any form of exercise and in a way the treatment is worse than the actual disease.

Last week my X-rays were completely clear, my lung volumes were normal, and the spriometry results were higher than at any time since measurements began –I was officially declared in remission by my physician.

Therefore the symptoms that I am now suffering must be "Herx" and not from the Sarcoidosis - I am in remission.

Gone is the insomnia, gone are the concentration difficulties, gone is the memory loss, gone is the irritability and gone is any hint of kidney stones.

As a result, my GP and my physician are now looking on with a very keen interest and are taking this protocol very much more seriously.

I feel as if I have at last taken charge of my own recovery and I am now certain that I am addressing the cause of this horrible disease.

I am now taking Minocyline at 100mg every second day and I have just increased the Azithromyacin at 250 mg every 8-days. Olmesartan at 40mg every 8 hours.

I still feel that it is early days and I am astounded that my physician has declared remission already. I was feeling very ill when I started this protocol and I truly thought that my downhill slide was a one way ticket.

As I said before, the fatigue part of my herx has improved dramatically, but the cough, the huge quantities of phlegm and the complete intolerance to exercise are still a real bummer.

I tried swimming 100 meters at full pelt yesterday just to see what would happen and I nearly passed out afterwards - the lifeguards were quite concerned. Silly me!

I am in this for the long haul though and I am under no illusions that my former elite level of fitness will return this side of a year.

I have written a fairly lengthy article telling the story of my wife and I (both of us have suffered from Sarc) in the articles section of our karate website. The article is called "Training with a disability" and can be found on www.bugeikan.com .

I have had a lot of replies to this article from other people suffering from Sarc and I have referred them all to this site. I have also linked here.

I am very very grateful to you guys and I truly wish you the recognition you deserve. You may remember that I started this protocol with a huge baggage of scepticism.

Cheers

Guss
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Grant (---.134.79-207.clta.telus.com)
Date:   02-04-04 17:18

I just started the ARB phase of the protocol and it seems that a persistant tinnitus in my right ear (mainly) has gone..... a good indication!?

also medscape has a complete ARB resource/article newly listed at:

http://www.medscape.com/pages/editorial/resourcecenters/public/arb/rc-arb.ov
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-04-04 17:38

Grant,
Yes, tinnitus goes away as the antibiotic therapy takes hold. The ARBs are a big help. Strangely, I had tinnitus build up to nearly deafen me when Novartis changed to Diovan tablets from Diovan capsules, but it went down again when I switched to Benicar. Look at the stick figures of the molecules in that Medscape article. You can see that the ARBs are all completely different. It is no wonder that one works better than the others. Don't you ever fly into the USA or Germany or the UK? (you can buy benicar there).

..Trevor..
ps: Please do not continue discussion in this thread. It is for stories only. These two messages will disappear in a week or so..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: bpeck (---.bluebird.ibm.com)
Date:   02-05-04 08:24

Trevor:
Have you been contacted by any Lyme Drs. and had a discussion about
having them try Benicar to lessen the herx in Lyme abx therapy?
Barb
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-05-04 08:30

Barb,
No, not one Lyme Doc has called me. Lotsa other Docs but nobody has mentioned Lyme.
..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Guss Wilkinson (---.dmzglobal.net)
Date:   02-18-04 13:19

Hi

Just to let you know that the Chest Herx seems to be subsiding - the fitness is returning and I am delighted!!

Cheers

Guss
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Vicki W. (---.classicnet.net)
Date:   03-11-04 14:24

Trevor, Meg and others--

I just had PFT's, chest x-ray and a visit to my pulmonologist. When my pulmo walked in he said "How are you?". I said I think I'm better. He said "I KNOW you're better because I've seen your x-rays." Yeaaa! I have to say I have been very discouraged at times but the results are finally showing up! I've been on this protocol since July 2003. I am presently taking 40 mg of Benicar every 8 hrs and 100 mg of Mino on Monday-Wednesday-Friday. I plan to start adding Z again soon. I had previously been taking Zithromax but got to feeling so bad that I backed off everything and am easing my way back into it again. Thanks so much for your help--
Any suggestions?

Vicki
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.aep.bellsouth.net)
Date:   03-11-04 21:10

Vicki,

That is wonderful! I hope you and your doctor will spread the word to those who are less familiar with this treatment. There are still many Sarc patients and doctors who don't realize just how real and measureable the success is. X-rays are very concrete proof!

You did the right thing to back off some when the herx became too strong but just gradually work your way back up.

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Ms Dale (---.proxy.aol.com)
Date:   04-22-04 13:37

Hi everyone!!!!

Here in front of me is my copy of the FIRST normal lab work of NEUT's and LYMPH's - ever! - ever! ever!!!

The MP works and it works like nothing else I have EVER been on for the treatment of Sarcoidosis.

My usual readings for Neut's and Lymph's have before NOW - been totally abnormal....
Example:
Neut 91 HIGH normal range ( 45.0 - 74.0 )
Lymph LOW 5 ( have even had 4) normal range ( 20.0 - 50.0)

NOW NORMAL.....

And I am tapping my foot to the beat in my head and singin'
Ah, ha, ha, ha, stayin' alive, stayin' alive.
Ah, ha, ha, ha, stayin' alive.

Cause the MP is the greatest gift I have ever rec'd in my history
of Sarcoidosis and the "old" treatments!!!!

OUT with OLD and IN with the NEW!!
And you bet I will shout it to the world!!!
One HAPPY lady who is getting her life BACK!!
Thank you Dr. Trevor Marshall !!!!!

Ms Dale
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: brendan (---.dip.t-dialin.net)
Date:   05-22-04 05:57

PLEASE; I need some words of encouragement!!!

Has anyone here experienced remission documented in x-rays, ct scans or pet scans? I have been on the MP for 3 months and while I have been experiencing herx my ct scans show my lungs are getting WORSE.

Trevor tells me it may take up to 18 months before I see improvement on my scans. I don't know that I have that much time considering the rate at which the sarc is damaging my lungs.

I would very much appreciate hearing from those of you who have proof in the form of ct scans that this protocol is working for them.

Brendan

Moderator's note: Brendan is not actually on the Marshall Protocol because he hasn't been able to obtain Benicar.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-22-04 07:23

Brendan,

My chest CTs showed considerable improvement 10 months after I began the MP, compared to my CTs from two years before. Those are not my words; they are what the radiologist wrote in his report reviewing the films. In lab results, my 1,25-D, alkaline phosphatase and C-reactive protein have returned to solidly-normal status. I walk over two miles a day with normal breathing, no SOB.

I think you are expecting positive imaging results too soon. It's only reasonable that Herxing may make images look worse soon after beginning the protocol. I know it took 4 months of minocycline just for my skin lesions to clear, so it may take that long to reach its maximum effectiveness to clear the pathogens.

What about your assessment of your symptoms such as fatigue, brain fog, pain and shortness of breath? Haven't those improved, and doesn't that count?

Belinda
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-22-04 08:10

Brendan,
Somebody has been trying to frighten you. You are concerned about "the rate at which the sarc is damaging my lungs". Yet fibrosis doesn't work that way.

If you take a look at my own Xrays over the 36 years I had this disease (they are online at this link) you can see two things
1. That I ended up with EXTENSIVE fibrosis (as would be expected, over 36 years)
2. My Xrays look like I should be dead

Yet I have never needed oxygen, I can walk as long as I like, climb stairs, carry things and (with the exception of jogging), live a totally normal life.

You see, what is seen on Xray imaging is not a reflection of the ability of lung tissue to exchange gas between the blood and the atmosphere, what is called DLco. That ability returns to normal as you kill the bacteria causing this disease. Your lungs function better again even in the presence of fibrosis.

You need to know that there is NO OTHER THERAPY that has been shown to stop the damage sarcoidosis is doing to your body. If anybody tells you otherwise then they are not competent to be advising you about inflammatory disease. The studies on this subject are now unequivocal.

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.aep.bellsouth.net)
Date:   05-22-04 14:44

Brendan,

Please refresh my memory; are you currently on Benicar and if so what dosage and how often are you taking it? You may have improvement by taking the Benicar more often. It just may take some adjustment.

Aside from how the X-rays look, how are you feeling; not just in your lungs but in all areas?

Although I have not yet had a follow-up CT I can tell you that the lymph nodes in my neck have gone way down. I plan to have a follow-up CT to prove that and will be willing to share that information with you once I get it.

Hang in there. This isn't a quick fix, but it is the best treatment long-term and I think you won't regret it if you give it some time. You will have some periods of notable improvement and periods where you are seemingly at a standstill. That's to be expected. Like any other medication these drugs have to be carefully worked with and adjusted over time to best help the individual through the various phases your body will go through.

One explanation for a rough period is that you may be clearing out a particularly bad bunch of bacteria and it may be a sign that things are about to improve.

I hope this helps,

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Carole (---.proxy.aol.com)
Date:   05-25-04 13:10

Hello to all--

I have been faithfully following the protocol since February. My symptoms (herx reactions, I assume) have been quite varied. I often need the 40 mg. of Benicar every four to five hours, as the pain, pressure, and a cutting feeling in my chest and throat can be quite annoying. The severe pain behind my knees, which radiates into the muscles of my upper calf and upper leg, plague me almost continuously with the minocycline. I had significant relief when I discontinued it for a few days before a dental appointment.

My most recent reactions have been repeated vision disturbances (traditional migraine without pain), daily blurred vision, and one severe tachacardia attack. My fingers have tingled a few times, and my brain fog comes and goes. My teeth have become sensitive again, with severe discomfort where I had a root canal done a year ago. Part of my suture line from the February mediastenoscopy is healing and half of it is still very sore and bumpy.

My love for being outdoors has been stifled, but I attempt to cover up and wear the NoIr sunglasses when I work outside. My love for anything with folic acid has been curtailed, as my eyelids swell, I become puffy, and my blood pressure rises.

The GOOD NEWS is that a CT scan of my chest in early May that was compared to February's (which was worse that December's) revealed the following:
1.) Slight decrease in the mediastinal and hilar lymphadenopathy.
2.) Persistant stable atelectasis or infiltrate adjacent to the right hilum.

The pulmonologist also shared the results from the early March lung testing. I will have another CT scan in early August. In the meantime, I regularly see my internist who is supervising the antibiotic protocol. I have been taking 100 mg. of minocycline for two weeks.

Do you think that it is almost time to begin the second phase? If so, please send me your latest instructions as to how I should proceed. I'm a little worried about the cardiac involvement, so I will be quite cautious since the nightly 50 mg. of Atenolol still allowed the tachacardia to happen. (Thank heavens, I did at least have that in my system!)

I am a regular reader of this site, which not only gives me extensive information, but piece of mind and hope. THANK YOU SO MUCH for this EXCELLENT resource for sarc patients and their families, as well as for enlightening the medical community!

Carole
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   05-25-04 20:19

Hi Carole,

It sounds like you are progressing well for such a short time on the Protocol. I am concerned though about your statement "when I work outside". Unless you must earn your living by working outside, it is counterproductive to allow any extended sunlight exposure. I was able to continue working because I have an indoor job but even the sunlight exposure going to and from my car gave me problems.

If you think that you can handle more Herxheimer symptoms, then it's time to think about the second phase when Zithromaz is added. You are right to be concerned about cardiac symptoms. Atenelol, a beta blocker, is not an antiarrythmic medication. It is prescribed for hypertension and angina. As your 1,25-D comes down with treatment, your blood pressure may also and doc may need to adjust that dosage. You should also know that cardiac antiarrhythmic drugs do not protect against the arrhythmia problems caused by sarcoidosis and the Herxheimer reaction. Only Benicar will do that. I'm happy to know that you have an order to increase Benicar to every four hours as needed.

I'll email you a copy of the MP phase two for you to share with your doctor.

Meg
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.aep.bellsouth.net)
Date:   05-25-04 21:49

Carole,

Are you still having herx or was what you describe from earlier?

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Carole (---.proxy.aol.com)
Date:   05-25-04 22:31

Thank you, Meg, for the copy of the second phase. I have an appointment tomorow with my internist, so I will share the information. After reading the instructions, I believe that I will wait a little while longer until the herx reactions are reduced. Plus, I will be gone for most of June, so it might be better to be near my doctor.

As far as working outside, I spend hours a day gardening. At the end of the school year and throughout my summer vacation, I used to spend most of the day outdoors in my flower beds, etc. Lately, I have been trying to work in the shadows early or late in the day, wearing a hat and the NoIR sunglasses.

Pippit--I started the Benicar on February 2 and Minocycline on February 24. My present reactions are like my former symptoms/complaints for 20-30 years (except for the chest and upper back discomfort--maybe from the enlarged lymph nodes), but now my back of the knee pain is more intense and debilitating. Ever since I had the severe leg pain and swelling in November and December from the D toxicity, my legs have never seemed to fully recover. I have exercised all of my life (and for years with a personal trainer), so this constant pain and weakness are depressing.

Carole
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Lottie (---.proxy.aol.com)
Date:   05-25-04 23:59

Meg,

Just thought that I would mention that I take atenolol for tachycardia, not high blood pressure or angina.

When I was first diagnosed with mitral valve prolapse about 26 years ago, I was given Inderal, also a beta blocker, to take for the tachycardia. Before I started it, my blood pressure had consistently been 110/70. After I had been taking it for about a month it was 120/80, and stayed there for most of the time until about one or two years before Sarcoid was diagnosed in 1999.

Sometime around 1994 my tachycardia had become difficult to control with the Inderal, even taking it routinely every six hours didn't seem to hold the rate under 120.

My cardiologist prescribed the atenolol for the tachycardia, because it had longer lasting affects. It seems to have been doing it's job. If I have a "breakthrough" tachycardia, I take extra to bring it down. I was also told I could take it, as I did the Inderal, when my heart is "pounding".

Since I've been reading SarcInfo, I have been wondering how much of the problems with my heart rate (and other life long problems) may have been due to a "subclinical"? Sarcoidosis.

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.aep.bellsouth.net)
Date:   05-26-04 02:00

Carole,

I think you're wise to wait to start the second phase until the herx is reduced. It sounded to me as if the herx was still pretty significant.

Also I found that when I was out alot (even covered up) the sun made my herx worse. It's really best to stay indoors (except for very early and at dark) unless you absolutely have to go outside. I found that standing outside just waiting for my ride for 30 minutes made me very sick. I would have been miserable if I'd started the second phase during that time.

After 9 or 10 months and will just be starting it later this week now that I'm out of college for the summer and can stay indoors.

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: bpeck (---.bluebird.ibm.com)
Date:   05-26-04 05:11

Carole:

When I was on abx for Lyme - I had what I called "flash-back" symptoms while herxing.

These are symptoms I had a some point in the past over my 25 year sickness duration. Some of them were totally debilitating - like pain so bad
in the muscles and tendons ( it felt like BONE pain) I couldn't walk at all - or shooting pains in my head , just to name a couple.

I agree that you need to back off and recover somewhat if your symptoms are intensified. Sometimes it would take me a week to recover from a herx.


What is the pain in the back of your knee?
Do you have a Baker's cyst?

Barb
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Carole (---.proxy.aol.com)
Date:   05-26-04 08:54

Thank you, Pippit and Barb, for your responses.

As a matter of fact, I have been diagnosed with Baker's cysts. Between the chiropractor, acupuncturist, Doppler tests, and orthopedist, the cysts are supposedly not that significant. However, my generalized leg pain can be overall, from hip to ankle, feeling like both bone pain and muscle pain. I've also been told that I have tendonitis and bursistis. I'm thinking that the inflammation within my body from the sun, food, etc., is sustaining this.

Interestingly, I remember the back of my knees hurting as a young child. The doctor called them "growing pains." I also remember the general leg aches, as well.

I've just returned from the doctor, who also concurs that I should wait until the end of June to proceed with phase two. He thinks that all of this is a mystery. He feels that I am "no worse" and am improving. I will move to another thread this evening for some questions he and I have.

Thank you again,
Carole
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-26-04 09:46

Carole,

Doctors usually focus on the lymph nodes in the chest in Sarcoidosis, but clusters of lymph nodes are scattered throughout the body. The lymph nodes behind the knees, called the popliteal nodes, may be the source of your pain. My lymph nodes certainly ached after I was in the sun.

Doing anything outdoors can cause the overall pain you described, and NoIR glasses and clothing are not a complete defense. You best bet is to restrict your gardening and outdoor activities to dawn and dusk. Otherwise, you are likely to continue having a lot of pain.

Belinda
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Carole (---.proxy.aol.com)
Date:   05-26-04 16:56

Thank you, Belinda. That definitely puts a new "light" on the situation. You are all a great support!

Carole
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   05-26-04 22:31

Hi Lottie,

I'm glad to know that the atenolol has been working for you to control your tachycardia. You wondered "how much of the problems with my heart rate (and other life long problems) may have been due to a "subclinical"? Sarcoidosis." It's quite possible that many of your problems, including your heart rate have been due to sarcoidosis.

I think subclinical is an inaccurate adjective though. It refers to a period before appearance of typical symptoms of a disease. Symptoms merely not recognized as being due to a disease process are not subclinical. And, unfortunately, many doctors still refuse to recognize systemic problems as being caused by sarcoidosis.

Meg
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Lottie (---.proxy.aol.com)
Date:   05-27-04 00:06

Meg,

Thank you, I’m real glad the Atenolol is helping too! I guess it’s another example of a medication being prescribed for something other than what it’s "written up" for, as Benicar is for Sarcoidosis. Well, at least for some of us

hmmm... By "subclinical", I was thinking more of symptoms that even I did not recognize as "dis-ease". Things that I might relate as being just plain being tired from work, and taking care of horses, and often, as something younger people are better able to deal with... not enough sleep!!

My cardiac symptoms that placed me on Inderal was diagnosed as prolapsing mitral valve. Not a "major" one, with blood regurgitation, but based on my Echocardiagram. At the time, my cardiologist said that it appeared that the "tendons" that keep the valve's flaps from going all the way through the opening were just a little longer than they should be causing a "snap" at the end of the flaps as the valve closed, like a sheet on a clothesline on a windy day, and caused my tachycardia. I now realize that it is possible that somehow Sarcoid may have been (or is at least) part of the problem. On that issue I may never know for sure, as that could have been congenital. It was only a sonagram of my gallbladder in 1999 that first showed a small pericardial effusion. That was after I had started having definite problems which are now more easily attributed to Sarcoidosis.

I was told by my dermatologist that the severe itching on my arms, which was only occasional, was an allergy to the sun. And, that was a lot better when I at least wore three-quarter length sleeves. That was something that I just happened to ask him when I was seeing him about a mole that had changed.

The only other "continual" problem was sinus congestion and infections, which started when I was a teenager. A very very long time ago. I did have a large bone spur on the septum which did partially block one side, and has since been removed. And, usually, the bacterial infection was secondary to a virus.

The fact that my sinuses "opened up" completely when I took the first Benicar, and have pretty much stayed open with some occasional mild congestion and "runny" nose, does make me wonder, though.

On the other hand, I don’t make antibodies to the pneumonia vaccine, and the immunologist and one of the ENT doctors said that it was an indicator that I don’t make antibodies to Staph and Strep. I also have a very low-end IgA, which the ENT said was not unusual for someone who has had a lot of sinus infections.

I’ve never been particularly thrilled with my immune system. My father, brother and I have all had problems with various infections, but whether they can be attributed to Sarcoid, I have no idea. For example, the three of us have all had mumps three times. We were all diagnosed by different doctors. And, I being the kid sister, caught them twice from my brother after the "correct" incubation period.

The only reason we are pretty sure that I have had the measles, is that my father apparently caught them from me. He ended up in the hospital with measles, after the right incubation period for them.

It is all just kind of tumbling in my mind right now, as I've done a 180 turn around from being sentenced to a life of "not much" except feeling bad, to a very good possibility of feeling at least somewhat "normal". Although, I might not recognize that when it shows up! Maybe I'll feel as good as my 84 year old mother... I'd be happy with that!

I'm sure that the input of others will help me, and perhaps my doctor sort it out. I think he’d like to be able to figure it out too, as it could help him with other patients. He only has one other patient with Sarcoid, and apparently it is an older man with a "crummy" x-ray, but no apparent symptoms.

And, then he has me… "normal" x-ray with LOTS of symptoms.

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: bpeck (---.bluebird.ibm.com)
Date:   05-27-04 05:26

Carole:

Something interesting about my Bakers Cyst, which was behind my right knee - and pretty big (the back of the knee when standing looked pretty much like the front of a knee.)

The Dr. told me I'd have it for life, and that it would get bigger as I aged.

Well - it got smaller and smaller as I got better and better, and then it was gone.

At one point, I was told I had poly-tendonitis. I actually had painfull swelling about the size of marbles or eggs in many places where the tendons met the bones. They were not Lymph nodes (although O had plenty of those swollen over the years also). I'dalso have small areas swell
and be red - and I couldn't even touch to area... Dr. though it was gout at first, but tests said no... so they called those spots - recurring reactive arthritis as they seemed to be around the cartilage of the joints.

There was a period of his terrible bone pain (although I really think it was muscle/tendon pain) where I couldn't walk, and had to live in the living room, with my husband carring me around. (I was ready to die during this period).


Barb
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   05-27-04 06:19

Lottie,

I would bet good money that the other sarcoidosis patient that your doctor cares for has unrecognized symptoms. IMO, sarcoidosis should be the first suspect for any symptom. It hasn't been because the doctors have been reluctant to begin the standard treatments due to their toxicity. Therefore, the tendency is still to minimize symptoms or attribute them to some other vague disease such a fibromyalgia or chronic fatigue syndrome. That way the doctor can proclaim that the sarcoidosis is in remission or 'stable'and delay treatment. This isn't a bad way of practicing medicine when there is no effective or safe treatment. The frustration now lies in convincing doctors that there is a treatment that works so they will acknowledge and treat systemic symptoms with the Marshall Protocol.

Meg
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Carole (---.proxy.aol.com)
Date:   05-27-04 19:18

Thanks, Barb, for the hope that the Baker's cysts (not as large as yours, though) may also decrease in size as I improve. Belinda's point that the lymph nodes may compound the problem definitely makes sense. I also have lumps/bumps and arthritis here and there, so I look forward to less pain, as well. The good news is that my upper body is suffering less "fibromyalgia joint and muscle pain."

As far as chronic sinus problems and cysts, the Benicar has also improved my congestion and drainage 100%. If I feel slightly stuffy, the Benicar immediately allows me to breathe through my nose. I'm also very thankful that my "sense of smell" is at last returning!

I'm very pleased with the results of the protocol, thus far! Thank you, Trevor and all!
Carole
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Tony Dolan (---.dsl.esat.net)
Date:   05-28-04 06:34

After taking prednisone for 11 wretched months and then stopping my symtoms went downhill rapidly for 3 or 4 months until by Aug-Sept 03 was a mess.

Learned about Marshall protocol in July 03 and started ARB (Diovan), in August. Started antibiotic (Minocycline) in Nov 03. The consultant warned me that my lungs were chronically scarred and that the relapse after coming off the prednisone wasn't a good sign. Remained very neutral about my propspects.

Today, 28 May 04, went in for my 3 monthly checkup and the consultant was delighted with the blood results for March which showed the ACE level and two other inflammatory markers much improved from the Sept 03 and Dec 03 tests. He reckoned that the minocycline was certainly 'agreeing with me' and put my next checkup out to Nov04.

In fact he was so pleased that he was a bit cautious about me moving on to phase 2 with the Zithromax and asked me to hold off until Nov04. I agreed (in any case I'm in the process of chasing up the Irish Medicine's Board about if and when Benicar might be approved for use) as up until now I have only had the support of my GP.

The above is doubly significant in that subjective improvement is confirmed by blood results and a consultant who deals with a lot of sarcoidosis patients is taking the treatment seriously. I think both are equally important.

kind regards,

tony dolan
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-16-04 19:33

Author: Grant (c207.134.95-87.clta.telus.com)
Date: 06-16-04 05:11

Wow! Many postings since my last visit!

FWIW -- I was never diagnosed with neurosarc, yet I know in retrospect that sarc was affecting my thinking. It was like living inside some wierd invisible vat of mental molasses! And sleep fragmentation was one of the first indicators of my relapse. At the worst point I was waking up each and every hour throughout the night -- which of course only made the mental fog worse.

I experienced immediate relief when I cut out the vitD and sunlight (easier in winter!). Once I started on the ARB the quality of my sleep improved dramatically, and every other symptom began to fade! This includes symptoms I've had for decades that I didn't even associate with sarcoid (from knee pains to bladder urgencies!)... My thinking is normal again so I'm actually enjoying my job. I control/adjust the amount of herxing I tolerate according to my work schedule (I'm an airline pilot, by the way. I mention this as a testimony that the protocol can be managed while working, and that it is a SAFE protocol. Trust me, if they had any concerns about safety, the docs would NOT allow me to fly while on the MP!) -- so if I'm facing a long stretch of difficult work days, I'll even stop the abx for a while and just enjoy the great feeling of vitality I now have. I'm planning to advance to phase 2 of the protocol next month while on vacation.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-16-04 19:34

Author: Julia (webcacheM07b.cache.pol.co.uk)
Date: 06-16-04 14:55

THE MP IS HEALING MY EYES!!

After 18 months of uveitis and four courses of steroid drops, which only gave temporary relief, I didn't really expect to get my sight back to normal.

But after 3 months of minocycline all the bruised feeling and fuzziness has gone. All I've got left is a cobweb of floaters, much fainter than it was and getting better.

Of course, my eye specialist is going to say, "I told you it gets better after a couple of years." :-(
Funny how the improvement so exactly coincided with starting mino... LOL

Julia
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Guss Wilkinson (---.telia.com)
Date:   07-20-04 08:44

Hi Trevor and all

Its been a long time since I logged on to this site and I have missed a lot of reading - shall make a valient attempt to catch up soon.

I have been on holiday for the last 6-weeks in Sweden with my family and the UK catching up with old friends and relations and I will be returning to New Zealand in about a week's time.

After 9-months on the protocol I feel that I am nearly symptom free. I feel great and soon ready to start the third stage.

The really interesting thing is that my psoriasis is all but gone. I have had psoriasis all my life and it has steadily gotten worse as I have gotten older. I had a real backlash from the psoriasis after coming off prednisone 9-months ago and apart from my head, I was more or less totally covered.

I now only have the odd spot on my arms and on my hands - nothing at all on the rest of my body and what is left is rapidly fading - this has never happened to me before!!

What a bonus!! I was very keen to be quit sarcoidosis as it was debilitating, but I was never much bothered by psoriasis as I always considered it to be other people's problem - but getting rid of this as well really has been a bonus.

This adds real credibility to the whole auto-immune concept.

Thanks for your work- will be in touch again.

Cheers

Guss
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: DJ (---.montanavision.com)
Date:   07-25-04 08:20

Hi all Sarc Buddies!

Just wanted to post my newest success on the MP. Several months previous to my diagnosis with Sarc, I developed clinical depression and was put on Fluoxetine (Prozac). After a year on the protocol, I have been able to discontinue this med with no adverse reactions.

I know that Dr. Thomas Brown included depression as a symptom seen frequently in his RA patients, but I hadn't particularly associated my problem with sarc. Since the MP is the only major variable that has changed in my environment in the past year (on the contrary - being sick has increased the stress level around here significantly!), I am giving all credit and cudos to the benicar and minocycline!

DJ


Gus,

It was interesting to hear your improvement in psoriasis. I also have had psoriasis for years before the <other> sarc symptoms became critical. Psoriasis is another immunological disease believed to be mediated by T-cells, triggered in genetically predisposed persons by several factors including BACTERIAL ANTIGENS. (Sound familiar?) Herx responses brought my psoriasis back temporarily, but further treatment on the MP eventually eliminated the dermal changes. I am becoming convinced that most or all of the Th1 immunological diseases and syndromes are different names for the same basic problem. DJ
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kirk Edwards (---.ph.ph.cox.net)
Date:   07-25-04 09:02

Trevor,

Just thought I'd check in and let you know how I am doing these days. I've been on the Minocin for a little over a year now (mostly on, but some off time). I'm having very little herx at all now. I recently went for a pulmonary check up and I don't qualify for a prescription for oxygen any more. My oxygen level was 96% when they tested my blood and stayed at 92% while walking. I'm looking and feeling better than I have in a number of years. Can't run any marathons, but doing well. I've gained weight and don't look like I'm a cancer patient now and I've also started traveling again. Something I didn't feel well enough to do the last few years.

Thanks for this message board and giving me something to go on to gain my health back so I can enjoy living again.

Kirk
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-25-04 09:21

Kirk,
That is wonderful news! You are the first patient to recover from 24/7 oxygen to not needing oxygen at all...

It is very important, however, that you now progress to phase 2 and start the two antibiotic regimen. If you don't do this, then strains of the bacteria resistant to minocycline will start to repopulate your tissues and you will relapse back to where you were a couple of years ago.

I will send you an email with the details of the next phase. If you stick to the protocol it will take about 2 years total for you to completely shake off all signs of the disease (it might take a little longer than that, it depends on which tissues the bacteria have parasitized).

What did the pulmonologist at VA hospital think about your recovery?

..Trevor..
ps: note the new paper at top right "sarcoidosis succumbs...". If you take that PubMed abstract along to the VA Doc they might give you the Benicar and Azithromycin they withheld back in 2002.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-25-04 09:29

DJ,
Have you had time to look at the links at the very top of this page to the sites specializing in CFS/CFIDS/ME/FM/Lyme? We are having amazing success treating these diseases as well. You may well be correct in saying that every Th1 disease will succumb to our protocol, for that is what I have determined from my description of the pathogenesis of these diseases.

We have many Docs using the MP now, all around the country, physicians who specialize in pain management and fatigue. It will soon be possible for sarc patients to get the protocol prescribed much more easily, and to work with physicians whose staff are familiar with the ups and downs.

You might let your dad know about the success with CFS/CFIDS/ME/FM/Lyme, and thank him for his help in the past


Gus,
Sorry I didn't comment when you posted the other day. It has been so busy here the last month some days I sit in front of the computer 12-18 hours a day.

It is great you were able to travel again. How does your wife feel about the change the MP has brought about in you?

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kirk Edwards (---.ph.ph.cox.net)
Date:   07-25-04 20:20

Trevor,

The doc was surprised. He had told me that I needed to be on oxygen if I travled etc. and to be really careful just the week before I had the tests done. I haven't actually seen him since but I'll see what he says about it more the next time. I will print out the papers and drop them off when I go to the VA hosp. next week so he can read them.

Just got back from a trip to Michigan for 10 days, I'm going to England in Sept., taking my daughters to Italy in November and going back to Michigan and driving down to Florida with my mother at the end of October and flying back to Phoenix. I'll make a few other short trips to San Diego and southern Calif. in between I'm sure. Got to keep moving!!! I get a little winded walking in the terminals to the planes, but with a short stop to catch my breath I do just fine.

Thanks again,
Kirk
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.asm.bellsouth.net)
Date:   07-26-04 00:56

Hi Kirk,

No wonder you're out of breath. This amount of activity may flair you up more. I know you want to stay active, but Jeeze. Your body is telling you something. You need rest so that your immune system can get a foot-hold.

I hope you are wearing the Noir sunglasses on these trips and long sleeves and pants to protect you from the sun exposure. You'd be surprised at just how much can come through your car window while driving or even the plane window.

Sarc patients produce 3-4 times the 1,25-D from sunlight as others do.
Live it up now, but when you get back be prepared to curl up with a good book for awhile. You are going to need to conserve energy for the road ahead. When you feel better than before it's easy to jump out there too quickly and overdo it. You'll get back to it again, but give yourself a chance to heal.

Let us know if you need anything,

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kirk Edwards (---.ph.ph.cox.net)
Date:   07-26-04 09:42

Pippit,

Thanks for the concern. Believe me, I get plenty or rest. I don't work at alll now. My main job has been holding down the recliner, which I don't think is really too good either. I don't over do it. When I get tired I just stop. It all can wait. I know I can't do what I used to, and that's ok. There is a lot of time in between trips too, weeks in fact. A trip every 6 - 8 weeks is ok. If I don't keep busy I'm going to set around and get overweight and bored out of my mind. I don't want that.

Kirk
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.asm.bellsouth.net)
Date:   07-26-04 23:01

Hi Kirk,

Try exercising indoors if you feel that you must, or after dark. 5 minutes of sun exposure is often all it takes to react with increased inflammation. I know that you must be bored to death staying indoors and restricting your activity, but be prepared that when you ask for advice here the staff is going to take that request at face value. Those of us who are moderators have been there and done that. We can only give you suggestions; what you do with them is up to you.

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kirk Edwards (---.ph.ph.cox.net)
Date:   07-27-04 09:34

Pippit,,
Oh, I am talking about exercising indoors. It's too darn hot here in Phoenix anyway. I'm wanting to get back at lifting weights. I stopped a couple of years ago and it's difficult to get back in the groove again. Hopefully I'll be more inclined to do so after the grandkids get back in school in 3 weeks.

Kirk
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.aep.bellsouth.net)
Date:   07-28-04 03:06

Hi Kirk,

That should work well. It will probably be better weather for nighttime walks by then too, and you'll be farther along in the protocol.

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-05-04 19:11

Date: Thu, 5 Aug 2004 14:37:41 -0700

From: Arlene Couchman

After many years of suffering, I'm feeling great!! I started the benicar
on April 7 2004. Wanted to wait on the mino. until everyone stopped
visiting. I was afraid of potencial herx. Finally started 25 mino on July
22. Then Aug 1 went to 50 mg every other day. I have yet to herx, so I
began taking benicar every 6 hrs. I'm also using ketoconazol 2% cream.
Anyway for the FIRST TIME:

1. normal stools- no diarhea
2. no brain fog
3.face lesions-75% better
4. no more hair loss
5. no dizziness

My 1,25 D was 59 initially. When can I expect some herx?

Right now I feel great. Arlene
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Carole (---.proxy.aol.com)
Date:   08-05-04 20:05

This comes from yesterday's post on MarshallProtocol.com--
-----------------------------------------------------------------------------------------
February 3, 2004 - Began Marshall Protocol

My first testimonial on 2/28/04 at SarcInfo.com:

SarcInfo has given my life new direction! My search began six weeks ago to find answers to my chronic and acute maladies following an ER visit in December for extreme leg pain and inflammation, which ultimately lasted seven weeks. With an abnormal chest x-ray and blood test results leading to additional CT scans, a PET scan, and a bone marrow test, this website helped me in confirming what I had been living with for a lifetime!

My symptoms throughout the years have involved prolonged fatigue; unexplained rashes and recently extreme reactions to mosquito bites; intense itching; loss of hair and weight; breathing problems; sinusitis; bronchitis; palpitations; tachycardia; PVC's; elevated blood pressure; hypothyroidism; migraines; muscle, bone, and joint pain; swollen salivary glands; blurred vision and loss of vision; edema around eyes and in extremeties; irritable bowel and polyps; vertigo; bursitis; tendonitis; and sleep problems. I have had several surgeries, including a pituitary tumor; suffered from mono, Epstein-Barr, and fibromyalgia (confirmed at the Mayo Clinic); have had a positive ANA blood test; and have recently been diagnosed with osteoporosis and severe reverse absorption upon having a root canal. Ironically, through all of these problems, I have led a very active personal and professional life, being a teacher of 32 years.

With timely responses and support from Trevor, Meg, Belinda, and Pippit, I began my plight to encourage my internist, oncologist, surgeon, and pulmonologist to consider the possibility of sarcoidosis through the research that I found within this website. Even though my elevated D- hormone and ACE levels were convincing, the oncologist insisted that I have the medianstenoscopy to ensure that I did not have lymphoma, since a February CT scan revealed increased lymphadenopathy, as well as slight compression of the trachea and central bronchi.

August 4, 2004--

Well, now I can happily say that the "Marshall Protocol" has given my life new direction! Today I received the results from the third CT scan since I began the protocol: "Significant interval improvement with decrease in the mediastinal and hilar lymphadenopathy. Resolution of the right perihilar atelectasis or infiltrates." It was reported that the largest nodes now only measure 13mm.

(My recent blood test results are posted under the topic of test results in SarcInfo.com.) They too have come a long way!

I no longer have nosebleeds from nasal sores, no longer have chronic headaches/migraines, and no longer have swelling, bloating, or general muscle/joint pain, except for pain behind my knees. My heart symptoms have nearly been eliminated, and my thryoid function must be improving according to the recent blood test. My hair is not falling out, and my blood pressure has gone from 180+/115 to 90-115/50-70. My sinus problems have disappeared, and my sense of smell has returned. I do not have rashes and do not have severe reactions to insect bites. My teeth are not as sensitive, and my balance has improved. My ears do not "ring," and the bouts with blurrred vision have decreased. Finally, my legs are getting stronger. I occasionally have "brain fog" and some finger tingling.

I take Benicar (40 mg. every 4-6 hours), Minocycline (100 mg. every two days), and Zithromax (1/4 tablet every seven days). My herx usually consists of throat pressure, behind-the-knee pain, scattered muscle pain, hip and leg "bone" pain, and generalized itching. The palm lesions are still visible, and more lesions seem to be appearing on my face. I am still plagued with insomnia. (Maybe the Synthroid reduction will help. I'm to have another thyroid test in six weeks.) I avoid the sun and food with D. I no longer take any supplements and try to reduce foods with folic acid/folate.

Words cannot express my heartfelt appreciation to Trevor and the moderators for their dedication and perseverance toward helping others. My prayers have been answered, and I have been truly blessed.

With sincere gratefulness,
Carole
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Julia (---.cache.pol.co.uk)
Date:   08-07-04 04:28

I've just found my original list of symptoms that I first took to my doctor. I'm so impressed with how many of them have improved that I thought I'd share it for anyone's encouragement.

(I took minocycline alone for about three months, then started Benicar, and have now completed my Phase 1. Next week I ask my doc for Phase 2. Just hope he's as confident as I am that this is the right way to go!)

eyes (uveitis) - much better
fatigue - much better
muscular cramps - much better
ankle arthritis & swelling - worse
limb & joint pains - much better
restless leg syndrome - same
tennis elbow - gone
insomnia - gone
pins & needles - same
sweats - much better
cough (slight) - much better
dry mouth - gone
numbness (slight) - same
shooting nerve pains - gone
skin lesions - almost gone
salivary glands - much better
nose-bleeds - gone
tooth root pain - much better

Of course some of these things come back as herx, but I've just taken two weeks off mino during a family holiday, which gave me a useful picture of overall progress.

The one thing that's no better is the ankle - and it's the thing that really hinders a more normal life. But it started years ago as arthritis in an old injury, so maybe I'm expecting too much. I suppose it's unrealistic to expect the MP to cure *every* ailment I've gathered along the way! Apart from the lameness I'm feeling so well. Many many thanks again to Trevor and all the crew.

Julia

 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Guss Wilkinson (---.wintec.ac.nz)
Date:   08-08-04 16:39

Hi Trevor

Sorry about the delay in replying - have been back in New Zealand for nearly two weeks but have been working flat out with my new Job as IT lecturer at The Waikato Institute of Technology (unfortunate name isn't it? - TWIT).

My wife is naturally delighted with my progress and the enormous change it has made to the whole family's quality of life. She herself is still symptom free but we do have this nagging feeling in the back of our minds that she is likely to relapse in the future (from reading all your literature) as her remission seemed to be spontaneous.

I am curious to hear your comments regarding the protocol's dramatic effect on my Psoriasis.

I get many enquiries about the MP due to the articles that I have published on my website. My next step is to see if my GP is willing to see people from different parts of New Zealand - the demand certainly seems to be there. Do you have any plans to pubish in main stream literature? It would certainly help when enlisting doctors.

'Tis all for now - greetings from a very wet and chilly NZ winter.

Cheers

Guss
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-08-04 17:23

Guss,
Well I used to teach at WAIT, so I guess TWIT is not too much worse that that! Congratulations on the academic appointment

Psoriasis is one of the Th1 diseases which responds well to the MP. Actually, just about all the idiopathic diseases fit into that category (of responding well).

Our last paper has just made it into Pubmed (top citation above-right in Papers..). Took nearly a year, and we have another good one in the works as well, percolating through 'the system'. That journal is not quite as mainstream, but IMO is very important, nevertheless. It will be another few months for that to come out. In medicine, progress is measured in years, not months

Glad you have gotten along so well, there were some pretty dark moments, and it isn't easy to focus on where you are going when your body seems to be falling apart around you. Your wife should try a short therapeutic probe, if there are bugs there to be killed she will find out, otherwise she can wait for symptoms. Oh, and keep an eye on both of your 1,25-D and D-ratios as you move forward with your lives.

As for enlisting Physicians, we need as many as we can get. Luckily, now that the MP is taking off in CFS/Lyme there are a number of additional docs we can send folks to (you have seen the CFS/Lyme info at MarshallProtocol.com, I assume?). Personally, I don't think that mainstream papers are the answer. We have enough papers now. Some mainstream, and many open-access at JOIMR (and 'open access' is all the rage now - see this recent news item). personally I just feel the laggards are going to be resistant to change, regardless of the magnitude of the overwhelming evidence massed against them.. maybe it will take another 30 years, until another generation of Docs have emerged... What we are finding is that the 'old guard' are mounting a pitched battle to maintain the status-quo, apparently 'to the death'. This even is happening at the level of the NIH (peek here), and it has been very heartening to get the CFS/Lyme folks on board so quickly so as to blunt the activities of the pulmonologists.

..Trevor..
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: David Schlesinger (---.gci.net)
Date:   08-26-04 18:03

Just wanted to post a quick thank you for your protocol and your caring. With little or no support except your web site and a doctor who gave me the scripts you told me to take I've made it back from the land of the dead to being alive again. I guess I was on a daily dose of 40 mg. of pred and a bunch of methotrexate every week. I couldn't hardly move without pulling muscles in my rib cage, I was taking eye drops that gave me cataracts in one eyes, couldn't breathe and couldn't walk to the car some days. I am working about 6 hours a day at carpentry, if I work longer I feel tired, I believe from the lack of adrenaline as my body is still learning to produce it, I hope. Well thanks again for all the support, I feel like I was a pain in the neck with all my questions over the year you guys have treated me, but I hope that somehow this has all been worth it for you guys. Thanks again, Dave
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-26-04 18:56

David,

You were never a pain in the neck and you are very welcome. Knowing that you feel so much better is all the thanks we need.

Meg
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-27-04 22:54

Dave,

Thanks for letting us know how far you have progressed. I have no doubt your shared story will help others. Keep in touch.

Belinda
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Freddie Ash (---.ipt.aol.com)
Date:   08-29-04 18:01

HI ALL

This is Fred in WV. Just an up date on me. I am doing find on the Benicar. I still have low B/P runing about 110/57 down to today 57/35. Also I have been being cold so I started to take my temp and the last few days have been 94f, 97.2f, 95f, 96.4f. Back in the 1980's my temp ran as low as 94.1 to about 97 all the time. Back in the 1970's and early 1980's I had high temp at about 104f. I was in the hospital in Dec 1978 with 104 temp but never knew what caused. I had not been diagnosed at that time with sarcoidosis. Also I have been having a lot of stiff muscles and joints. That is what I had in the early 1970's. Also the hair on my legs has grown back. My uper jaws ache when I eat. Some times can hardly finish my meal. Only hurts when chewing.
On the up side, the ringing in my ears (I have had since 1968) still comes and goes. I can still lay on my left side and not feel my heart beat. The gland behind my left ear is no longer swelled. In my left side of my neck, the lumps are gone(lympth system). My left leg is still doing ok(it has been swallen since the last by passes).

Thanks to Trevor and all!!!!!

Your friend in sarcoidosis
Freddie
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-29-04 19:29

Hi Freddie,

Thanks for letting us know that you are doing well. Others with low blood pressures will be encouraged.

Take care,

Meg
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Jenny (---.proxy.aol.com)
Date:   08-30-04 07:32

Trevor, Meg, and all the other volunteers -

I just wanted to once again thank you for all you are doing to help folks
like me. After just 4 1/2 months on the MP I am doing something that last
winter I would never have thought would be possible for me again - I have
a job and am going back to work! I know that I have a long way to go yet,
but my energy level is back to where I think I can actually handle it. I do
have one problem - it seems that a TB test is manditory for this job. Is that
a serious issue?

I am taking a week off from the antibiotics and upping the Benicar to 40 mg.
every 4 to 5 hours because my doctor detected some edema in my ankles
when I went for my appointment on Tuesday of last week. It's been almost
a week since I've had any Minocycline and two weeks since my last Zithro-
max (1/4 of a tablet) and the swelling hasn't gone down any, so I don't
think it can be attributed to Herx. After a few months on this new job I
ought to be eligible for health insurance, so if it hasn't gotten better by
then I guess I can get it checked into.

Once again - thanks for all you've do!

Jenny
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-30-04 09:09

Jenny,
I would like to keep in contact with you as you return to society, yet you didn't leave us an email address so that we can do that. Would you mind dropping me a note ('email webmaster' link is at the bottom of this page) and let us know how we can track your progress in our files?

Sincerely
Trevor
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-22-04 21:19

To all,

I'm adding this post to bump up this important thread so all the new people who access our site won't miss it.

Best,

Meg
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Lane (---.asm.bellsouth.net)
Date:   10-23-04 19:43

I thought that it was time that I checked in. I have been on the mp for 4 months now , I am now taking benicar q6h, mino100mg qod, and monday I will start my 125mg dose of zith. I have not felt this good in along time , my family is so happy. I can walk up the stairs again w/o breathing extremely hard , I am walking a mile everyday and it feels good. I don't get tired as often but when I do I rest. I sill have things going on like my hands feel tingling and numb, my knees are hot to the torch, but I look at everything that happens as a good thing because I keep improving everyday. Well I will stay in touch and thank you all again for all your work, and Dr. M arshall, a job well done. Lane
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Julia (---.cache.pol.co.uk)
Date:   11-23-04 12:22

Z has almost completed the job of healing my eyes, that the mino started. Rippling lights and floaters almost gone - certainly no longer interfering with vision.

Julia

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-28-04 09:51

Author: Ms Dale (cache-dtc-aa09.proxy.aol.com)
Date: 11-27-04 18:01

Roy,

I am sorry you are so sick. I was also. Sarcoidosis is a progressive and
debilitating disease. I am one who has been attacked from my head
to my toes. The Central Nervous System involvement was in the
Cerebellum -- the Pons ( middle brain stem ) - Chronic/Recurrent Sarcoid
Meningitis - Spinal nerve roots - Cranial Nerves - Peripheral Nerves -
Eyes - right Kidney - Cardiac - and end stage Pulmonary - etc etc.
I once had a Neurologist tell me the list is shorter where I DO NOT have
Sarcoidosis - than where I DO.
That statement alone - will convey to you that I was a Mess - with a capitol
"M."

I have been the route - and VERY difficult road - of Prednosone -
Solu-Medrol IV's - injecting myself with 25 mgs of Methotrexate weekly -
the Plaquenil - and etc.
Along with a list from A to Z of other drugs I tried to help.
But NONE did. Oh sure - Prednisone gives you a "false" sense of well being for a time...but trust me - after a while things creep up - and it is "up the dose?" - you do this until you scream "how much MORE is more?"
"How much is ever going to be ENOUGH?"

For me...I never found a limit of ANY amount of Prednisone to maintain me.
I felt like many of you - tired - frustrated - scared - and eventually this
ghastly disease would take my life. Then I discovered the work of
Dr Trevor Marshall and my life has changed. Yes - I mean changed to most
drastic improvements that I would not even have been able to comprehend that could happen to me. Life has such "quality" for me now.
My symptoms have decreased and decreased. It has not been quick - nor has it been easy - but I stuck it out with the Marshall Protocol - and for that
I truly believe it is the reason I am still alive today. Trust me - there was not a doctor I saw - who did not convey that is was only a matter of time....
before I was doomed. I provided what information I could regarding the Marshall Protocol and asked to please try it. They bawked a wee bit - but knew that it would be my death certificate they would be signing - so instead they chose to sign the RX's for the MP.
And now they are "astonished" -- "stunned" - and smile each time they walk into the exam room - for I have come so far and I am doing so well.

I have gotten OFF all other meds - except the Prednisone for which I have
weaned to 3mgs a day. ( far cry from the highest amount of ONE HUNDRED AND TWENTY mgs I have taken ) and NEVER was I able to decrease the Prednisone to the level I am at now - without huge ramifications - relaspes -
and explosive symptoms - at times landing me right back to square one
and back on the Solu-Medrol IV's.
And believe me - you will hear me shout with GLEE the day I see ZERO
Prednisone - for that day WILL come....

You may not be convinced yet for yourself - but for me the MP has changed my life. We are the keepers of ourselves - and make our own choices.
You are not right or wrong in what you choose to do to live with your diseases - but I can tell you from the bottom of my heart, I made the right choice to try the MP and it has brought me success.

Sincerely,
Ms Dale

Moderator's note: This message has been reposted (from another thread) to make it easier to find.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-28-04 09:55

Author: Julia (webcacheM03b.cache.pol.co.uk)
Date: 11-28-04 07:40

Hi Roy

There are quite a few of us on the MP in the UK, but it hasn't been easy, and there are more who would like to be and haven't yet been able to persuade a doctor to give them the prescriptions. Typically a doc will be okay with minocycline - after all, it's commonly used for teenagers with acne - but won't go with the Benicar because it isn't fully tested at the dosages required.

I'm blessed with a very open-minded GP. Having read my print-outs of Trevor Marshall's research papers, he started me on minocycline alone (probably to humour me!) on the grounds that it couldn't do me any harm. After a few weeks, when he saw the dramatic improvement in my sarcoidosis, he reckoned Trevor might be on to something, and gave me the Olmetec.

Since then I haven't looked back - I'm on Phase 3 now and still getting better. I'm shedding symptoms I never realised were anything to do with sarc! My nice-but-conservative endocrinologist (the nearest thing to a sarc expert we have here in Northern Ireland) is sceptical, bemused, intrigued, and continues to monitor me because he "wants to see what happens next!"

It is well-nigh impossible to get the vit D tests done in the UK. There is a lab in Manchester, but it isn't a test normally done on the NHS, though I suspect it's just a matter of convincing a consultant. I never succeeded, but hey, who cares, I've got my life back.

But it's that sort of problem that makes running this internet clinical trial so difficult for Trevor & co. You asked about results, and of course it would be encouraging to see neat charts of achievements. But I wouldn't even show up on a results table, because I didn't have the tests done, so you could always tell me I wasn't really ill, or I'm not really getting better, I'm just feeling more positive, or something...

Trevor doesn't get anything from us; that's what he meant when he said no-one was trying to convince you about the efficacy of the Marshall Protocol. But many, many of us would encourage you to try it, as "beggars telling fellow beggars where to get something to eat."

All the best

Julia

Moderator's note: This message has been reposted to make it easier to find.

 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-28-04 11:06

Author: Dave M. (dialup-lak77.nls.net)
Date: 11-27-04 17:21

HI MEG.

As I was reading some of the posting I noticed the ones about skin sarc,
I don`t know if I talked about it before or not, but I had a Doctor tell me that I did have skin sarc. on my elbows, as I said ( DID) BECAUSE THE M.P.
HAS CURED AND HEALED MY ELBOWS!, it is gone, all gone. The only thing left is some pigment loss in one elbow, that seems to be getting better.
Now for the real news, I have had a lot of herx, in my legs and feet, with the tired soar feeling in the legs , with a lot of pain in the hip flexers, and
the numbness and shooting pains in the feet . And for the past week and a half it was fairly intense. But all of a sudden over the past four days about 40% of all that pain has vanished, I can actually touch my feet with out going through the roof. I am in phase three (edited by moderator). I think things are starting to look up for me. What is your take on all of this, and did you ever get the phase 3 stuff put together, I`m still waiting for your E-mail. just in case you forgot, it is mally@n.. so you can send that to me any time. By the way the Doc. goofed up on my blood test paper work , so I had to have him re fax it ,I should get it done next week and I will shoot you some numbers as soon as I get them.

THANK ALL OF YOU ! for what you are doing for all of US. God Bless you All.

Your Friend Dave M.

Moderator's note: This message has been reposted to make it easier to find by people looking for success stories.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-28-04 17:16

Author: Guss Wilkinson (adnet.wintec.ac.nz)
Date: 11-28-04 11:32

Hi Roy

I too came out guns blazing. Sarc sufferers can be even more aggressive than the medical community and I believe now that it is due to an intense fear of hoping, only to be disappointed again.

I am a natural sceptic and to quote Carl Sagan: “Sure, it is good to have an open mind, but not so open so your brain falls out!”

Before I started the protocol, I took Trevor’s research and asked two doctor friends to tear it apart. It took us two weeks and to quote one of my doctor friends, “I find this stuff hard to believe, but I can’t fault the science.”

But the proof of the pudding is ultimately in the eating. After over a year of sheer hell, I am now completely symptom free – that is:
No debilitating cough
No choking on my own phlegm
No memory problems
No kidney stones
No insomnia
No sweaty nights
No joint pain
No debilitating fatigue
No migraine
No concentration problems
No high blood pressure
No high cholesterol

And guess what - the psoriasis that I have always suffered badly from is all but gone. That has never happened to me before and is a real unexpected bonus!

I have heaps of energy and I realise now that I haven’t felt this good in way over a decade. Not only am I grateful, my wife, children, family, friends, karate students and university students are also extremely grateful.

Looking at all the treatment alternatives, you have nothing to lose to give it a shot – and everything to lose by walking away from this opportunity.

You are welcome to contact me if you want to probe more into my experiences.

Cheers from a warm spring day in New Zealand.

Guss

Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. Started MP: Oct 2003; Phase III since July 2004; BP 100/60. Almost completely symptom free! Wife also Dx with Sarc May 1995 - symptom free.
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-02-04 17:20

Author: itiona (c-24-15-132-255.client.comcast.net)
Date: 11-25-04 11:25

Hqppy Thanksgiving to all the staff at this forum. because of you guys I was able to cook a full holiday meal for my family and a needy family without being sick or tired. I know for a fact had I not got help from your forum when I did this would not have been possible. Thanks for all you do and for helping my life be able to help others.
God bless you all and Happy Thanksgiving.
Itiona
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-05-04 16:42

Author: Dave M.
12-5-04
Hi Meg

I guess I might as well share some more good news while Im on the air.
Today I was doing some work in the bathroom and it is the first time in the
last few years that I was able to work on my knees with very little pain,
also the increase in my energy has been great, I am starting to feel like a
new person. The numbness in my feey is better by the day and I am having
very few stabbing pains in my feet. The only big thing that I`m having is, a
lot of soarness in the middle of my back in the mid thoracic area.I don`t
know if it is Herx, or if it`s from the last time the Doc. crunched my back
for me, but it has been soar now since the last time I saw him.
But any way things are looking up !

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-05-04 20:58

Author: David Schlesinger (35-26-237-24.gci.net)
Date: 12-05-04 20:19

Just a quick note,
I am doing better than O.K. and am down to 5.5 on the pred. for the 5th day with barely noticeable herxes that seem to be gone. I will take Megs advise and continue to drop slowly. The Zith and alternating 100 mino seem to work too. Thanks again, I never thought I would feel this good again. I have some scarring in my lungs, but I finally feel alive again, and want you guys to know how terrific I think you are for everything. To have life again and life with energy and no pain is a small miracle. Thanks, Dave
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kirk Edwards (---.ph.ph.cox.net)
Date:   12-07-04 21:31

Went to the VA pulomonary doctor today and had a function test done. I'm still on the up swing. Today's FEV1 was 1.05 and FVC 2.04. I was down to FEV1 .84. Each time I've gone it's gone up a little. I'm almost back to where I was over 4 years ago. At least it's heading in the right direction. I haven't used the oxygen since July either.

Did great on the trips this summer. It isn't always easy, but I keep going. Just got back from Italy a couple of weeks ago with my daughters. Decided it was a lot easier to have wheel chair assistance at the airport. With the arthritis and low lung capacity it's just a lot easier. (After 14 flights this year).

Thanks again Trevor!!
Kirk
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Ms Dale (---.proxy.aol.com)
Date:   12-13-04 07:05

My heart is bursting with happiness and HUGE gratitude to Dr. Trevor Marshall for his research, dedication, and the Marshall Protocol.

I am guilty - of lack of computer time to shout this all the time - my guilt
is due to living every day enjoying my son. He has known me nothing but sick since he was a very small boy...has seen me at my worst - bed ridden - wheel chair - trying to hobble with a walker - so sick......

And now he is a young teen - his first year in highschool - on the Soccer team - and I have been spending most all my time at the soccer fields and traveling all over for his games.. and etc etc..
Just basically doing things with him that have been such a struggle in the past.
Sure...I went to the games in my electric wheel chair - walker - or whatever it took - and I also looked a MESS......
He is the greatest and is the sunshine in my life. I have been a single mom for most of his years...and always took care of him no matter what - but it was not in a joyous way where I felt good...I just did what I had to do to keep going...
Always...in the back of our minds that I would not be here to watch him grow up. Laying in a hospital bed at times...IV's drippping into me - and he has seen the worst of the worst of my condition from this ghastly disease. He smiles so much at me now! I can tell he "feels so good"about his mom - and how incredible I have done on the MP.
We are so close - and I know this has given him hope ( and myself )
that he has never felt.

Never...did I dream that I would be this WELL. This has happened because
of the MP - please...stay focused and patient - this treatment works!

Sincerely,
Ms Dale
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: tom christenson (---.dsl.sfldmi.ameritech.net)
Date:   12-13-04 12:03

Ms Dale....nice to hear you are being able visit and see your son play soccer...i was fortunate to coach and see both my sons play before my sickness...nss/css...were your symptoms similar to mine before mp...numbness and tingles radiating out in intensity from the index finger to the pinky...drop foot left side-limping with cane assist now...dizziness, loss of balance, bladder/bowel changes and problems...occasional sharp shooting pains, neck, chest, foot nearly any place, even places where you wouldnt think...base of heel etc...i look very much like a serious case of ms...did all your symptoms go away...which ones...when...i know what you mean when you go out in public with your son and you feel the stares...and how difficult it is at times...and how difficult it is for your son...i see the same in my children...tough for anyone to fully understand until they have the problem...i am sure your son always felt good about his mother...its just tough to see...stay the course...good luck
Tom
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Bonita (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date:   12-13-04 20:24

The success stories really give hope to those of us who are about to start our MP. My Benicar and NoIR's should be here any day now and I will get started. I hope to post my success story here, but I have a question I cannot seem to find the answer to. How did you all cover your face other than a broad brim hat? I have already avoided Vit D/sun and have discovered by trial and error the results of going out in the sun i.e. shopping in daylight hours even tho covered. Thanks and congrats on your successes. Bonita
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-13-04 23:20

Bonita,

I found, by trial and error that a wide-brimmed hat was the best way to protect my face if I couldn't avoid going outside in daytime. I always wore my darkest NoIR glasses, too. When I say 'wide-brimmed,' I mean go for a four-inch brim if you can find it. Baseball caps are not nearly as good as a hat with a brim all around, but they are better than no hat at all.

I found a summer hat that I like from Solumbra. I ordered from them at <www.sunsolutionsclothing.com> because their hats have an usually constructed brim. Their straw hat brims are reinforced with a cloth liner, so there is more resistance to sunlight. Since I live in sunny Texas, this was an excellent choice. I also found a hat with a drape to cover the neck and I was happy to have that in my closet at times.

If you wear the wide-brimmed hat and NoIR glasses, much of your face will be protected. I found that covering my neck was more of a problem. I settled on wearing scarves or bandanas tied around my neck. With a little creativity, you can use these as wardrobe accessories. You can find bandanas in the hobby or craft stores. You can find fabrics suitable for scarves in most fabric stores, and it takes a fraction of a yard to make a scarf.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Ms Dale (---.proxy.aol.com)
Date:   12-14-04 07:37

Hi Tom,

I am not really sure where to post this. Because I have gained back so much physical ability - strength - and well being, I will post here under success stories - but this post can certainly be moved to where-ever anyone feels it more appropriate.
My life with Sarcoidosis....being told the list was shorter where I DON'T have Sarcoidosis - than where I DO. And even though I will try my best to
relay information - I am sure I will leave something out.
Yes - I too had all the symptoms and bodily dysfunction you mention above -
and then some... ( that is putting it mildly )

Past Involvement: CNS Sarc lesions - transversed the entire width of the Cerebellum, - Pons ( middle brain stem) - Medulla Oblongata (lowest part
of the brain stem between the pons and the spinal cord), - Peripheral
Nervous System, Cranial Nerves, (tumor) findings on Spinal cord - Sarcoidosis in nerve roots of spine, Chronic/Recurrent Sarcoid Meningitis -
Eyes ( Uveitis - Iritis - optic nerve neuritis - Scleritis - ( just about everything
that is an "itis" was me!) - Right Kidney - stage 4 Pulmonary - Liver - Cardiac - Cystic Bone lesions ( on Xray-looks like Cauliflower growing from bones) - all nerve roots of teeth totally calcified - and the minor things to me were the skin problems... - lesions - erythema nodosum - Livedo Reticularis - and etc...
It was not a pretty picture......and raised the dickens with my physical ability. It was extensive - trust me. I need not go on - as there is no doubt I was a mess. The important thing is...now I am NOT.
One thing I wish - is that I had kept a journal - DAILY - on when things changed. You have no idea how many times I have kicked myself about that! On recall mode - I do remember it took approximately 9 months before I gained very notiable change. From there - it has taken off - like a daily healing taking place from my head to my toes. My Neurologist writes
"stunned" in my dictation - my eye doctor smiled at my last check up and said everything is GREAT! - my lab tests are normal - for the first time I can ever remember.
For info - I started the Minocin November 2002. I am not unlike many of you fighting for the Benicar - I won in January 2003 - currently Phase Two (Z).

Have I learned what Herx is, over the past 2+ years?
Rest assured I did! Stay focused and patient - is the most important thing I can share. Was it easy? H*ll no! Would I do it again? In a heart beat!

I too have walked the same road as many of you.
Prednisone - Methotrexate - Solu- Medrol IV's - Plaquenil - ( steriod eye
drops ) -- and many many MANY other drugs trying to combat Sarcoidosis.

The symptoms of past felt like an Avalanche - my symptoms of today...like a little snowball. And I have all faith in the MP that even the little snowballs will become a wee puddle of water that I will skip right over one day.

Of course there is a great deal of detail I could go into - and I am not at all opposed to answering anything you may want to know. I just do not want to make this posting as long as my arm - which I could do in relaying everything past and now positive - and how my life has truly changed
because of Dr. Trevor Marshall and the Marshall Protocol.

One thing I must say before I end... Sarcoidosis is a progressive and
debilitating disease. Do NOT be fooled by anyone ever telling you that Sarcoidosis "just goes away" - it is THERE - it lingers and festers in your body - spreading itself out anywhere it darn pleases...it plays by NO RULES -
and has NO BOUNDS as to where it can attack your physical being.

And most important of all - it HAS met its match with the MP.

Sincerely,
Ms Dale
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-14-04 21:37

Author: Rick MacKinzie (adsl-68-127-171-191.dsl.pltn13.pacbell.net)
Date: 12-14-04 18:34

Hi Trevor and all . . .

I turned 60 on Sunday . . . Whoppie!
I had an appointment with my Op today and after testing my eyes she said that my eyes have actually improved since the last visit 6 months ago . . .
No more stigma, and no need to increase my eyeglass strength. However, she did say that I have the tiniest of cataracts in each of my eyes. there is no need to surgery but this could account for some of my blurred vision and sensitivity to light. I can only attribute my eye health to the meds (Mino & Benciar) . . . Any thoughts here?

Rick in Napa

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Ms Dale (---.proxy.aol.com)
Date:   12-15-04 09:25

Hi Rick,

That is wonderful news! My eyes have also improved!
I found that the most dramatic eye improvement came after
adding the "Z" in phase two.

As for the cataracts - I do not know your history of possible use of
Prednisone before the MP. I know for myself that the "P" drug played a huge role in glaucoma and a right eye Cataract.

Overall my eyes have shown nothing but positives on the MP.
I am happy for you that you have had great results!

Sincerely,
Ms Dale
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kathleens (69.146.35.---)
Date:   12-28-04 00:05

Hello all -

I've not been on the site for quite a while, but I am doing very well - I am having almost no herx with the Minocin; and I am ready (although quite nervous) to start phase 2. Since beginning the MP, I have much of my energy back; my chest pain is much less, and controlled by meds; I am working full time (48 hours last week!); my eyes have returned to my pre-illness vision; I am truly a success story. Even when I do too much, I recover quite quickly, and have been pushing myself more and more. It's truly a miracle to have my life back. Also - I have been having yearly mammograms, and had developed calcium deposits in my breasts 3 years ago - this mammogram showed not only no new growth, but that they appear less than they have the last 2 years! Something will just change - my long term memory had been affected - all of a sudden last week, I am remembering things without difficulty! My short term is currently herxing, but I know that's temporary. What an amazing thing!! At work, I work in the business office and medical records - I do accounts receivable, and do records abstracting - both things I couldn't have done a few years ago!

God Bless!

Kathleen from Wyoming
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-28-04 00:23

Hello Kathleen,

It's great to hear from you!! I am glad you are ready to begin Phase Two. You will be amazed, I think at how much more you progress on your road to health. We are thrilled you've shared your success story (which is as yet incomplete).

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Kathleens (69.146.35.---)
Date:   12-28-04 00:27

I forgot -

FIRST NORMAL C-REACTIVE PROTEIN IN OVER 5 YEARS!!!!!

Kathleen in Wyoming

//dx presumptive, family hx, cardiac, systemic; MP x2 years; also on metoprolol for cardiac sxs; working FT; feeling good! //
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Pippit (---.asm.bellsouth.net)
Date:   12-28-04 14:48

Good, Kathleen,

Keep up the great work, killing those bugs!

Pippit
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-15-05 07:52

Author: Dave Schlesinger (ip68-224-149-4.lv.lv.cox.net)
Date: 01-14-05 22:38

Hi Meg,
Usually I write when I reach a crisis, however now its mostly to say how great life is. Ms. Dale and you guys came through and I will be doing my first dose at 5 mg. on the pred. this week. Lost 28 of my 40 lbs I gained on the pred and really never thought life would ever be so fine. I am still majorly covering up from the sun, but as I get lower on the pred and feeling better does that mean that the effects of the sun will not be so bad and I can look forward to resuning a presarc life again? Besides the lost weight my lungs have increased capacity, my muscle tone is returning , etc. It is quite unbelievable, especially as my G.P. figured I was a goner and so did I a little over a year ago when I started this protocol. Thanks again, David
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Ms Dale (---.proxy.aol.com)
Date:   01-26-05 07:32

How the MP has changed my life...

Last night, January 25, 2005 brought tears to my eyes.
As I sat in the stands at our High School football/soccer field - I was presented with a speech and gift from all the young men ( soccer players) in appreciation for all the fundraising efforts I was able to accomplish - help
for them to acquire new uniforms and updated equipment.

The emotions felt - were due to knowing that if not for the MP - I would
never have witnessed that moment, nor have the memories I now cherish of getting to know each of these players on a level off the soccer field.
We spent time together holding fundraising events, shared laughs and hard work, but created one of the most beautiful bonds that will forever touch my life.

In my past years with Sarcoidosis and using OLD treatments...NEVER would
this have been physically possible for me to accomplish.
It has been because of the Marshall Protocol... that my life is now mine again - and no longer controlled by Sarcoidosis symptoms.

Thank you for this protocol - the profound impact of life change it has given
to me and my role as "helpful" ( not helpless ) mom to my three children
( Jesyca, Jennifer and Kirk) - is something we once only dreamed of...now
we are living it.

My sincerest thank you,

Ms Dale
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Carole (---.proxy.aol.com)
Date:   02-09-05 19:40

Hello to all--

I'm very pleased to report that I have reached another positive milestone in my plight to overcome this disease! One year ago I was so toxic (actually near death) when I found this site, and now I am celebrating my most recent test results:

January 2004--
1,25 D--85; 25-D--41; ACE--68

July 2004--
1,25 D--50; 25-D--33.48; ACE--45

January 2005--
1,25 D--25; 25-D--22.56; ACE--37

All other blood tests are within "normal range" and the CT scan of my chest (compared with previous scans during the past year) shows continued decrease in size of the mediastinal and hilar lymph nodes, with only small carinal right hilar lymph nodes remaining.

I have recently begun Phase II (again) and am not suffering the excrutiatingly painful herx as in the past.

THANK YOU! I look forward to seeing you at the conference!

Carole
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Lottie (---.proxy.aol.com)
Date:   02-09-05 21:55

Carole,

I am soooo happy for you!!

Congratulations!!!

And, thank you very much for shsring your good news with us. Keep up the good work.

Lottie
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-09-05 22:08

Carole,

Thanks for sharing your story, which will help many people.

I look forward to seeing you at the conference.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   02-09-05 22:56

Carole,
That is wonderful news! Congratulations, you have worked hard to get to this point. I too look forward to meeting you at the Conference.
Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: John Dresser (207.118.48.---)
Date:   02-10-05 09:49

Staff: I would be interested in your analysis of the progression of Carole's D test numbers......what are they telling us and what is Carole's status now? (if you care to comment)
Thanks , John Dresser

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Wytnez (---.austin.rr.com)
Date:   02-10-05 16:35

Carole,

Thank you for sharing your story. You are an inspiration. Just the fact that your 1,25 D has come down so much is proof that the Marshall Protocol is working. And the thing that I am most impressed with is the results of your CT.

Mine read mediastinal adenopathy and bilat hilar adenopathy. So your story has given me hope that my CT will one day read "compared to report on date 11/16/2004 mediastinal adenopathy and bilat hilar adenopathy are gone. Lungs are clear and free of any nodes or nodules and heart is normal in contour and calibur.

Thanks Trevor Marshall and much Thanks to Meg for contacting me and telling me about this protocol. I am currently in the very early phase of phase I. I will begin my first mino dose tomorrow. I have done well on the Benicar so I am on my way.

saj

sarc lungs 1,25D=32. D25=10 1/24/05 Beni q6hs, 2/11/05 Mino 25mg,3/4 mino 50mg, 3/24 mino 75mg ,4/15 mino 100mg, phase II 5/2,
 
 Re: ** SUCCESS stories- ARBs or Antibiotics are fixing me
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-10-05 19:25

John,

January 2004--
1,25 D--85; 25-D--41; ACE--68

July 2004--
1,25 D--50; 25-D--33.48; ACE--45

January 2005--
1,25 D--25; 25-D--22.56; ACE--37

After a year on the MP, Carole has seen a steady decrease in the most important inflammatory marker, the 1,25-D and her serum ACE level. This indicates a decrease in her sarcoidosis inflammation that is corroborated by her decrease in symptoms and the improved condition of her lungs as evidenced by repeat CT scan. Her doctor must be impressed.

She has reduced the precursor, 25-D, by about half. This represents ingested Vitamin D in food and supplements. We like to see that number below 12 ng/ml so Carole should increase her efforts to avoid foods high in Vitamin D.

Best,

Meg

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Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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