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-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.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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 Skin Sarc, What does it look like?
Author: Cher (144.138.225.---)
Date:   08-31-02 06:16

Hey everyone,
I'd just like to get a few people's opinions or knowledge from your own experiences about skin sarc.
I have been getting what start out like blisters & break out into an ulcerous type sore within a very short time (less than a few hours). At this stage only on my arms.
The skin surrounding & the tissue below is hardened & very sore to touch. The whole tender area is aprrox thumb size though the ulcerations at this stage are only about thumbnail size.
Anyone had simialr? Does it sound anything like anyone who has has skin sarc?
I'd really appreciate all your opinions as usual.
Cheers & stay positive
Cher
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-31-02 09:15

SARCOIDOSIS IMAGES

Here is a compilation of images of cutaneous sarcoidosis from the internet. Click on blue text to view images, then hit the "back" button to return to this page. YOU MAY WANT TO BOOKMARK THIS PAGE. To email this page, the URL is http://tinyurl.com/4xqg8.
<<updated 04/15/2006>>

HAIR AND SCALP
Hair Loss - Alopecia Caused by Sarcoidosis
Hair Loss and Plaquelike Skin Lesions in sarcoidosis (click on Figures 1, 2 and 3 in the article)
Scalp this is a man with a shaved head

SARCOIDOSIS ON THE HEAD AND FACE
Note: A recently published report confirms that facial swelling can be a symptom (no photo)
Red Plaques on forehead
Spots Darker than Flesh on the Face
Swollen eyelids (Lacrimal gland swelling)
Enlarged Lacrimal Gland
Sarcoid Lesion In Lining of Eyelid
Papules (discolored bumps) around the eyes
Annular plaques on Face
Cheek lesion
Sarcoidosis on the nose - lupus pernio
Sarcoidosis of the nose (Lupus pernio)
Lupus Pernio in Sarc
Lupus Pernio Arising from a Tattoo in Sarcoidosis
Intranasal Inside the Nose
Corner of the Mouth
Inside Upper Lip
On the Tongue
Gingival Swelling Due to Sarcoidosis

BACK AND TRUNK
Upper Neck in Dark Skin
Upper Back
Back and flank
Sarcoidosis on the back
Multiple Large Plaques on the Back and Trunk
      Lived-red to brownish, deeply infiltrated and markedly elevated plaques of two years (Click on the Figure Numbers in the text)

ARMS AND HANDS
Sarcoidosis lesions in a scar on the forearm (this image requires Adobe Acrobat reader on your computer)
Sarcoidosis Lesions on the arm
Sarcoidosis on the elbow
Palmar erythema and hoarseness: an unusual clinical presentation of sarcoidosis
Red Lesions on Hand
Skin -Colored Firm Plaques that appeared on hands, arms and legs due to Sarcoidosis

LEGS and FEET
Erythema Nodosum (non-specific for sarcoidosis)
Erythema Nodosum
Sarcoid Plaque on Knee
Large Red Plaque Surrounded by Papules on lower leg
Painful red, swollen legs
Coarse, scaly skin Acquired Icthyosis

CHILDREN
Child first thought to have atopic dermatitis, diagnosed with sarcoidosis
NEW-> Several photos of sarcoidosis skin lesions on a 7-year old

SARCOIDOSIS ERUPTION IN A SCAR
Infiltration of scar

IMAGE GROUPS
A collection of photos of sarcoidosis
NIH collection, includes sarcoid lesions and erythema nodosum related to sarcoidosis
EN, papules, small nodules, raised plaques, lupus pernio and psoriasis-like lesions

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-31-02 14:07

Cher,
This research found that Minocycline and Doxycycline were very effective against the skin lesions of sarcoidosis.
..Trevor..
Minocin, 100mg, every other day, is effective, at only 1/4 of the 'normal dose'. Talk it over with Doc
 
 Re: Skin Sarc, What does it look like?
Author: elaine emmi (---.client.attbi.com)
Date:   08-31-02 15:30

Hi Cher,

When I was a kid, I had what appeared to be warts on my elbows and large bumps on my shins and just below my knees. The bumps on my elbows often itched and were sore, sometimes more inflammation than other times. I had then frozen off when I was about 12 or so. When my sarc was really flaring (in early 20's, I had what looked likes hives across my chest and neck- with sun exercabating the problem) Have had skin problems on and off and of course, sun worsens any lesion now. Still battle them on my legs, tho since taking Avapro they have lessened, which is very nice. Occasionally have them removed if they don't heal eventually.

Good luck!
Elaine
 
 Re: Skin Sarc, What does it look like?
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-01-02 06:46

Cher,
Chasing symptoms such as ecchymosis is such a difficult task when your body is subject to as many drugs and disease forces as your poor body has been.

For example, today I read that ecchymosis can even be due to excess levels of 1,25-D (calcitriol).

But then it can be due to Rickettsia infection or Celebrex or, (less commonly) even to Avapro.

..Trevor..
 
 Re: Skin Sarc, What does it look like?
Author: Cher (144.138.225.---)
Date:   09-01-02 11:05

Trevor,
It seems to me there is no good answer. If Terry was to take me off all the medications I would be living my life at home in bed in the dark forever. I want to be able to continue to work (I'm only 36) & have some sort of life. The medications I'm on are helping me to do that. I know I ask alot of questions but if it's the choice of having a few extra spots on my body & being able to have a life or to go off all medication & stay in bed in the dark I will take the spots & medication.
More often than not, the reason I post questions on here is to get other's opinions as to whether these are things that happen to others or not.
Thanx as always for all your help.
Cheers & stay positive everyone
Cher
 
 Re: Skin Sarc, What does it look like?
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-01-02 11:19

IMO, you really want to be armed with the information to discuss with Doc Terry in case he does decide to take you off everything next time you see him

If I had to point a finger I would say that what you have described is most likely associated with "the microbes" and/or your recent infection. Number 2 liklihood is the NSAID, Celebrex.

Incidentally, you never described the color of these blisters. Red or white with discharge that is clear or deep red?

..Trevor..
 
 Re: Skin Sarc, What does it look like?
Author: Cher (144.138.225.---)
Date:   09-02-02 08:51

Hi Trevor & everyone,
Thanks everyone for your opinions, I really appreciate them all.
The lesions started off like a blister (as you would get from a burn) but the bubble part was gone almost as soon as they appeared.
I haven't acually seen any of them pop or anything. They even look like a burst blister afterwards. Very red around the outside & with an ulcer looking sore in the middle. They are very very hard to the touch around the ulcer looking part & also beneath the skin & very very sore. I figure that I really only have three, two on my left arm & one on my stomach. The others I think were just panic reactions lol. I think they were actually mosquito bites that I scratched. The other thing was they all appeared within the one day.
The redness around the outside is thickening as the days go & also spreading. The biggest one is about the size of a quarter (don't know if any of u guys would know an Aust 20 cent peice & Trevor may not remember lol). With the actual sore in the middle being about the size of a nickel. If I didn't know better & now hadn't seen them grow in size I would have said early on that I must have burnt myself. Now I am sure that I haven't, especially as one is on my stomach.
Cheers everyone & stay positive
Cher
P.S Trevor, thanks for allowing my whinges yesterday. Sorry that I let it all get to me. I'm over it again now ... thankfully lol.
 
 Re: Skin Sarc, What does it look like?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-02-02 13:51

Dear Trevor:
I had Shingles at one time and then I developed a rash on my chest....and the doctor couldn't tell what it was from. She actually did say out loud: "it could be Scabies".....and almost got a punch in the nose!!!!!
I had all kinds of skin tests and scratch tests and nothing was the cause.
I am wondering....looking back if it was Sarcoidosis of the skin. This was before I had the Bronchoscopy and blood tests that did say I had Sarcoidosis.
I have some cortisone cream for application and was put on Tetracycline daily and haven't had a rash since.
Caroline McG.
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-02-02 14:59

Caroline McGuirl,

It would be kind of interesting to know whether your doctor did a skin biopsy that found non-causeating granulomas. Just wondering whether the doctor suspected sarcoid then. At any rate, this report in the Archives of Dermatology reports on the use of tetracyclines in treating skin sarc. You can see very clear "before" and "after" antibiotic photos by clicking here.

And yes.. dermatologists (like other doctors) need to watch how they express ideas. They evidently diagnose many cases of sarcoidosis, however. Dermatologists also may miss earlier detection in some cases. There is a wide range of skin manifestation of sarcoidosis. Here is a picture of sarcoid on the chest.

Did you (or anyone else) reconnect with a dermatologist who possibly missed sarcoidosis earlier? Or was there a long time lag between the skin lesions and your later sarcoidosis diagnosis?

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-03-02 09:49

Cher,

I think I found a picture of what you are describing. Here is a third picture of sarcoid lesions on the arm.

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: Cher (144.138.225.---)
Date:   09-03-02 10:17

Belinda,
Thankyou. Yes these are exactly like what I have. The only difference is that mine haven't joined up.
Thankyou again, especially for the research you did for me.
Cheers & stay positive everyone
Cher
 
 Re: Skin Sarc, What does it look like?
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-03-02 10:24

Cher,
Minocyclin and Doxycycline have been shown effective at reducing the skin lesions of Sarcoidosis. Print out this article and discuss it with your Doc.

Dr Mercola's dosage of one 100mg Minocin every second day is my choice - no side effects and it works well...

..Trevor..
 
 Re: Skin Sarc, What does it look like?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-07-02 14:14

Dear Belinda:
I did not have a skin biopsy done...although it was discussed as was the bumps I developed over areas on legs and arms. My internist thought a biopsy should be done but who would do it?
I think that surgeons...probably wouldn't do a biopsy on the skin or lumps...for just a verification of Sarcoidosis. I believe that if a rash is present when I see the dermatologist soon for the Melanoma check-up, I will ask her to biopsy the rash.
This disease has me frustrated......it almost seems that the doctors don't want to prove that I have Sarcoidosis...systemically because then how would they treat it? I could be wrong.
I am a person who wants to know the answer...good or bad. Some people say they prefer not to know.....
Any suggestions??
Caroline McG.
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-07-02 17:21

Caroline McG,

I would talk to the dermatologist about the bumps the next time you are there. Dermatolgists know about sarcoidosis. If your bumps are not present, discuss it anyway so it is in your record. The doc should suggest what to do if they reappear.

If your dermatologist doesn't already have a copy of your diagnosis biopsy report, I would provide him/her a copy of that. You already know that you have sarcoidosis, so it's not unlikely you could have cutaneous manifestations of the inflammation. The doc may want to biopsy whatever rash you have to make sure it isn't something else that needs to be treated, or just to make sure it is sarc.

If your bumps clear up before the doc can see them, you could always take a photo (be sure to note the date) to document what they looked like and discuss next time. I'm with you.. I like to know what I'm dealing with, but I don't usually lose sleep over my spots.

My skin lesions can pop up and then clear in a few days. When my blood level of 1,25-dihydroxyvitamin D level was over 60pg/ml, I was developing lesions on my neck, so I made sure the doc saw them. I suggest you note your sunlight exposure to see if your bumps are coming after being in the sun, especially after being in the car (because you're not as aware of that sunlight). I jot down my sun time on my calendar every day.. something like.. "1hr driving sun." Once my 1,25-D level is up, it takes two days (after sun exposure) for my spots to crop up, but they keep coming back if I keep going out in the sun. At least knowing that means I have some control.

Take care,
Belinda
 
 Re: Skin Sarc, What does it look like?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-12-02 14:07

Dear Belinda:
Thank you for your advice. I don't see the dermatologist for a few months now. I see her every 6 months for a check up on the Melanoma.
I will be seeing a surgeon next week for my right shoulder. Then on to see a surgeon for the hip. Today we have all the surgeons together but they all work on various parts of the body. It seems odd to me but times have changed. In order to be good....one must specialize.
I have tears of tendons, effusion, pain and stiffness in first the hip and now the shoulder.
They will see if surgery will help. I cannot walk well....and can put no pressure on right leg. I can't use the computer for more than 1/2 hour at a time....shoulder aches.
I can think of so many other ways to spend my time......than in doctor's offices but that is about what I do.
Take care yourself.....and thanks......thanks to this site too.
Caroline McG.
 
 Re: Catalog of Sarcoid Images
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-12-02 18:50

SARCOIDOSIS IMAGES

Here is a compilation of images of cutaneous sarcoidosis from the internet. You may need to click on the (figure) notation on sites including text.

SARCOIDOSIS ON THE HEAD AND FACE
Swollen eyelids (Lacrimal gland swelling)
Papules around the eyes
Sarcoidosis cutis, large nodules
Sarcoidosis cutis, small nodules
Annular plaques
Cheek lesion
Sarcoidosis on the cheek
Sarcoidosis on the nose - lupus pernio
Lupus pernio
Nodular lesion, anular lesions and violacious erythema
Alopecia of the scalp

CHEST
Upper Chest

BACK
Upper Back
Back and flank
Sarcoidosis on the back

TRUNK AND BUTTOCKS (these images are NOT for the squeamish)
Lived-red to brownish, deeply infiltrated and markedly elevated plaques of two years
Sarcoidosis, larger nodules

ARMS
Lesions on the arm
Scattered nodules with hypopigmentation
Indurated nodules resembling blisters
Sarcoidosis of the arm
Sarcoidosis on the elbow

LEGS
Erythema Nodosum (non-specific for sarcoidosis)
Livedo reticularis-like eruption, nail-sized erythematous areas on lower legs
Ichthyosiform eruption on the leg

YOUNG CHILD
Child first thought to have atopic dermatitis, diagnosed with sarcoidosis

OTHER MANIFESTATIONS
Hypopigmentation of extremities
Intranasal
Infiltration of scar
Sarcoidosis of the gingiva
Nail dystrophy
Swollen fingers (sausage digits)
Sarcoidosis in a tattoo

IMAGE GROUPS
NIH collection, includes sarcoid lesions and erythema nodosum related to sarcoidosis
DOIA image gallery, 32 images of sarcoidosis
Alopecia, erythematous papules, hypopigmented lesions (arms) and targetoid plaques (lower legs)
EN, papules, small nodules, raised plaques, lupus pernio and psoriasis-like lesions
Recurrent follicular and lichenoid papules

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: Cher (144.139.191.---)
Date:   09-25-02 06:28

Hi Everyone,
Finally my computer is back online (yee hah). Anyway am just catching up with all i've missed. Thanks as always Belinda for all the above pics ... makes it wo much easier when u can see someone else's.
My lesions are doing well, two have all but disappeared & the one that has been the worst all along is getting better. The worst one is still very hard under the skin (i can feel a big lump) but the actual ulcer is much cleaner looking.
Thanks everyone for all your help.
Cheers & stay positive
Cher
 
 Re: Skin Sarc, What does it look like?
Author: JC Miller (---.nash01.tn.comcast.net)
Date:   09-25-02 12:09

Is Lichen Planus related to sarcoid? The rash looks alot alike and both are An inflammatory, pruritic disease of the skin.
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-25-02 13:02

JC,

That's right, JC. If you read this article from the American Academy of Family Physicians, you will see lichen planus on the list for differential diagnosis in cutaneous sarcoidosis.

Differential diagnosis means the doctor has to determine which of "two or more diseases with similar symptoms the patient is suffering from, based on an analysis of the clinical data." So when you read something such as, "Sarcoidosis is a great masquerader," it is a message to doctors that they can be fooled into thinking their patient has another, similiar problem - particularly if they fail to consider that the patient has already been diagnosed with sarcoidosis. The correct diagnosis can be reached after a skin biopsy, according to the article.

Belinda
 
 Re: What does inflammatory acne look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-27-02 18:32

Since people have mentioned acne, here is a link to an article with pictures of inflammatory acne, so you can compare it with the pictures of sarocidosis.

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-21-02 18:27

I just updated the catalog of links to photos of skin sarcoidosis to include this photo of sarcoidosis on the nose - lupus pernio.

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: Claire (---.245.166.96.dial1.seattle1.level3.net)
Date:   12-21-02 22:11

Cher- I read your comments with great interest because I have a "mystery" disease? syndrome? going on on my arms also. I get small triangular shaped blister-like lesions that scab over, itch like crazy and are very painful deep under my skin.

I am trying to determine if this is happening (only on the top sides of my arms from my wrists to shoulders, because I have been taking a NSAIDS (Celebrex) for about a year.

My dermatologist (I'm about to give up on MD's) has given me cortisone creams and now I am just finishing up a course of prednisone--which may be cutting down the pain but is giving me all sorts of other awful side effects. So when I finish the prednisone in a few days, I will not continue taking it.

My question to you is: Have you or do you take an anti-inflammatory medicines such as Celebrex or Vioxx?

Also? How long do the lesions remain on your skin? do they itch and hurt? Do they scab over? and stay a long time?

I really would appreciate a reply from you. Happy Holidays. Hope to hear from you.

 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-20-03 23:32

Hi everyone,

Here is a report on a case of red, burning palms and hoarseness which led to a diagnosis of sarcoidosis after the patient sought medical evaluation. The patient had enlarged mediastinal lymph nodes, elevated serum ACE and a skin biopsy that revealed non-caseating granulomas with multinucleated giant cells.

Palmar erythema and hoarseness

Belinda
 
 Re: Catalog of Sarcoid Images
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-02-03 07:56

I just updated the photo list (post number two on this thread) to add swollen eyelids (lacrimal gland swelling), another manifestation of sarcoidosis. If you scroll down, there is also a photo of lupus pernio and a photo of vasculitis in sarcoidosis affecting the eyes, giving the image of the interior eye an appearance like candlewax drippings.

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-10-03 11:14

Here is an article "How to spot the cutaneous signs of sarcoidosis," that was published in the October 2001 issue of the Journal of Respiratory Diseases. This reprint doesn't include figures, however.

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: MENSON byrd (---.r12.nclxtn.infoave.net)
Date:   07-25-04 12:26

JUST READ ALL THE MESSAGES AND I HAVE ONE QUESTION . I HAVE HAD SARCOID SINCE 1949 , AND IT WAS IN ARREST TILL 1976 AND STARTED BACK. I AM UNDER V,A, CARE AND I HAVE A RASH AROUND MY EYES AND HAIR LINE . IT GETS WORSE AFTER A HOT SHOWER AND WHEN I SWEAT. ALSO BEHIND MY EARS. IT SEEMS TO HAVE A LITTLE WET FLUID AROUND THE BACK OF MY EAR ,S DO YOU THINK THIS IS ALSO C. BUDDY.
 
 Re: Skin Sarc, What does it look like?
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-25-04 12:41

Hi Menson,

Welcome to SarcInfo. The odds are excellent that the skin symptoms you describe are due to your chronic, progressive sarcoidosis. Heat often exacerbates sarcoidosis inflammation.

The Marshalll Protocol is very effective at safely treating cutaneous lesions as well as any other symptoms you may be experiencing.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links or starred threads on this site.

Meg
 
 Re: Skin Sarc, What does it look like?
Author: MENSON byrd (207.144.143.---)
Date:   07-27-04 14:56

MEG; RECEIVED YOUR REPLY , I HAVE EYES THAT WATER ALL THE TIME . THEY ITCH AND RUN . ALSO HAVE LESSIONS ON MY BACK AND NECK . ALSO HISTORY OFF VERY BAD HEAD ACHES NOW HAVE CT. SCANS EVERY SO OFTEN . THEY SAID THE LAST ON SHOWED A KNOT OR INLARGED GLAND IN MY LOWER NECK , I WILL LET YOU KNOW OF THE RESULTS AS SOON AS I CAN THANKS FOR THE RESPONCE.. BUDDY
 
 Re: Skin Sarc, What does it look like?
Author: Lottie (---.proxy.aol.com)
Date:   07-27-04 17:52

Menson,

I also have Sarcoidosis. Your problems sound very familiar.

My eyes water most all the time. They itch much of the time, and often feel as though they have sand in them.

I have lesions on my leg, and they are appearing on my face and neck. They are more noticeable after a shower as well.

And, sweating! My hair (which is quite long) is often drenched with sweating.

Fortunately, I have only had a few bad headaches.

I hope that you are able to obtain the assistance you need.

Lottie
 
 Re: Skin Sarc, What does it look like?
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-27-04 19:44

Menson,

Like many sarcoidosis patients, I think you are confusing followup testing with effective treatment. Doctors have their patients come in regularly for expensive testing and somehow patients think that this is helping. I hope you are studying the information on this forum in preparation to asking your doctor to help you get well with the Marshall Protocol.

Good luck,

Meg
 
 Re: Skin Sarc, What does it look like?
Author: Mary Jo (---.cinergycom.net)
Date:   09-20-04 20:56

where can I find the Marshall Protocol for sarcodosis patients. I have had sarc since 1978, didn't have trouble with it until about 5 years ago. Then it was and is like a mad man running thru my body. Thanks for the information.

Mary Jo
 
 Marshal Protocol
Author: Mary Jo (---.cinergycom.net)
Date:   09-20-04 21:07

I found it. Sorry I just hadn't looked. Thanks. MaryJo
 
 Re: Skin Sarc, What does it look like?
Author: Lottie (---.proxy.aol.com)
Date:   09-20-04 21:38

Mary Jo,

I'm glad you found it. Please read everything you can, including the posts.

The first thing you can do on your own is to cut down on vitamin D. Stay out of the sun. If you have to go out, please cover up completely! Long pants, long sleeves, hat, scarf, etc. Avoid ALL sources of Vitamin D... Milk products with D added, Fish, eggs and many cereals are the first that come to mind. Check any aupplements you're taking for D, and remember that Fish oil contains it.

You can take the information to your doctor for help in getting your D metabolites measured and then post the actual numbers for us to help you and your doctor evaluate them.

Your GP can help you with the Marshall Protocol, and remember that most doctors have not heard of it, so you may be doing some teaching. Don't accept Prednisone or other immunosuppresants. They will only allow the Sarcoid bacteria to continue to multiply.

Sarcoidosis will not go away on it's own, or with Prednisone. The MP will help you to reach remission.

Let us know if you have any questions after you have read the material.

*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: Skin Sarc, What does it look like?
Author: Meg (---.188.248.238.euc.wi.charter.com)
Date:   09-20-04 21:48

Hi Mary Jo,

Welcome to SarcInfo. You can find detailed information regarding the Marshall Protocol on this marshallprotocol.com forum.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links, starred threads or by doing a site search.

Meg
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-08-04 16:59

(Moved to the appropriate topic.)

Author: Debbie (h-66-167-46-145.phlapafg.dynamic.covad.net)
Date: 11-08-04 14:41

I find small red spots (size of pencil eraser) on my neck, chest, arms and stomach sometimes. I try to differentiate the timetable with sun exposure (driving) but haven't been able to pinpoint it. The red spots really hurt sometimes and just appear with no pain at other times. Has anyone else experienced this? Would this be considered a form of skin sarc?

Just spotty,
Debbie
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-08-04 18:33

Author: Carol (cache-dtc-aa09.proxy.aol.com)
Date: 11-08-04 15:38

I also get these red spots that burn at times. I was told by my doctor that it was from the Predisone (steriods) use. I am weaning off of Predisone so we will see. I will be starting MP soon. Cheers, Carol
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-08-04 22:18

Carol,

You may want to ask your doctor for further information about Prednisone causing your red spots. Click on the side effects that are covered (with photos) at the Johns Hopkins website. Prednisone can cause susceptibility to bruising easily as well as abdominal stripes like stretch marks.

The spots you've noticed may result from sun exposure and resulting uncontrolled, abnormal 1,25-D production from skin cells. Take a look at some of the skin sarcoidosis photos on this topic.

Belinda
 
 Re: Skin Sarc, What does it look like?
Author: pookerdo11 (---.247.106.149.gha.mi.chartermi.net)
Date:   12-06-04 16:41

does anyone have sarcoidosis by there eyebrows or on there eyebrows?

i do!!!

what a battle! i get injections (steroid) every two to three weeks in my eyebrows. the swelling goes down, they almost look normal, than they swell again. now the dr. injected them and put me on prednisone, a small dose to see if this works.

our goal is to get this back in remission. this sarcoisdosis started in my body when i was in my twentys.....went into remission.....now i am 53!!!

please let me know if anyone else has this???

thank you....
pookerdo11
 
 Re: Skin Sarc, What does it look like?
Author: Lottie (---.proxy.aol.com)
Date:   12-06-04 21:16

Pookerdo

Welcome to SarcInfo.

Yes, I have Sarcoid lesions, in and around my eyebrows, which have been improving since I've been on the Marshall Protocol.

Your Sarcoidosis has not gone away, it's just been busy behind the scenes, and steroid injections will only ultimately make you worse. They will not rid your body of the bacteria which is causing the lesions. Although they're injected into one area, the cortisone ultimately ends up in your body and does have an immunosuppressive affect. Meaning that it shuts down your immune system, which is exactly what you don't want to do.

The Marshall Protocol will allow your body to kill off the bacteria which is the pathogen that causes Sarcoidosis.

Please read all that you can on SarcInfo, including the patient tutorials and the information for Physicians.

Let us know if you have any questions.

Lottie

*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: Skin Sarc, What does it look like?
Author: pookerdo11 (---.247.106.149.gha.mi.chartermi.net)
Date:   12-08-04 15:35

hi,

what is the marshall protacol?



thanks,

pookerdo11
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-08-04 19:07

Pokerdo11,

The Marshall Protocol was developed by Dr. Trevor Marshall, PhD to treat certain diseases that involve immune system dysfunction. His protocol is based on the concept that the dysfunction is caused by certain pathogens that live happily inside the very cells of the immune system meant to destroy them. This infection produces inflammation. Recovery involves three aspects, control of the inflammation, low dose appropriate antibiotics, and a healing of the immune system itself.

You can read a more detailed explanation of the Marshall Protocol here.

Best wishes,
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: Skin Sarc, What does it look like?
Author: John Dresser (207.118.48.---)
Date:   03-07-05 11:01

I've just developed a noticeable sore on my eyelid, which is quite small, ganglia like, and maybe more like a tiny pimple. It feels like a cut if touched.

Could this be a form of skin sarc?
Wondering if it is somerthing I need to be concerned about, or can I let it take its course and see what happens? My inclination is to let it ride for a while.
If you recommend seeing a doc, what kind? My internist, or should I find a skin doc or eye doc? Thanks,

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: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-07-05 16:55

Hey, John,

Did you see this image of skin sarcoidosis? It sounds similar to what you described. I used to have these around my eyes, beside my nose and near my eyebrow. They were slightly sensitive to touch.

My skin lesions like this eventually resolved, sort of like a pimple does (to keep from being too graphic), as I progressed on the MP.

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: Skin Sarc, What does it look like?
Author: John Dresser (---.ka.centurytel.net)
Date:   03-07-05 19:41

Belinda,
I could not get the "this image" link to work. Does it work for you?

Is it a link further up on this page? Maybe I could try that if you tell me where.
My "pimple" is near the corner of my eye, on the lid, and doesn't show when my eye is open. I'm just a little worried that an infection might spread, especially if I try to do something with it, like grab it with a tweezer or something.

thanks, John

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: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-07-05 19:55

John,

The skin lesions I was talking about were not obvious when my eyes were open. In the photo I was referring you to, the patient had her eye closed. The photo is http://www.revoptom.com/handbook/images/RO30F703.JPG

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: Skin Sarc, What does it look like?
Author: John Dresser (207.118.49.---)
Date:   03-08-05 09:28

Thank you Belinda, that photo does not look like my eyelid sore. I do have a similar lump like those on one eyebrow, and I asked my doc to look at it when I visited him last month. I also have some smaller lumps under my eyes, and he would have seen them when he examined some dark spots as I wanted him to look at them for skin cancer.

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: Skin Sarc, What does it look like?
Author: Jeremy Riley (---.misawa.af.mil)
Date:   04-17-05 17:51

I looked at the pictures of skin sarcoidosis and I know that I have the Ichthyosiform eruption on my legs but I am not sure about the eruptions on my back, upper chest, shoulders, upper arms and buttocks. The dermatologist says that it is not sarcoidosis but a yeast infection because it itches but it rarely iches and it looks exactly like the Sarcoidosis cutis, small nodules pictures. I know that its not going to kill me either way but I was just curious if the progression of skin sarcoidosis can be an indicator that the prednisone is not working and may not be improving my pulmonary sarcoidosis as well. I know that you can have the skin form without the pulmonary form but if you have both and its not improving one could it be the same for the other.

Also... Is ichthyosis a form of sarcoidosis or a symptom caused by sarcoidosis? It formed only after I got sarcoidosis but does this mean that it is being caused by sarcoidosis or could it simply be dry skin and a coincidence that I happened to get it at this time? It is also getting progressively worse.

Thank you,

Jeremy
 
 Re: Skin Sarc, What does it look like?
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   04-17-05 20:38

Jeremy,

Sarcoidosis is a systemic disease. Prednisone is the wrong treatment for sarcoidosis of any form. Prednisone and all of the immunosuppressive drugs allow the Cell Wall Deficient (CWD) bacteria that is responisble for the disease to grow unhndered. When these immunosuppressive drugs are withdrawn, your sarcoidosis will worsen. There are many references to presnisone at the bottom of this page.

I don't want to upset you but need to be honest with you, sarcoidosis does kill. Reggie White, the Philadelphia Eagles defensive star, recently lost his life due to sarcoidosis, Chicago’s NBC sports anchor, Darrian Chapman, also died suddenly of cardiac Sarcoidosis two years ago; Dr. Mark Rosenthal, a nationally recognized Philadelphia cardiologist, died of sudden cardiac arrhythmia due to Sarcoidosis four years ago.

It is a very serious disease. Patients are told that it will go away on it's own, it does not. Read here: Sarcoidosis, Lessons Learned From the ACCESS Study and NIH Study Shows that Sarcoidosis Does Not Go Away.

I hope you will re-read the Patient Tutorials found at the top left of the Main Menu and also the starred threads. We are here to help you if there is anything you do not understand.
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: Skin Sarc, What does it look like?
Author: Lottie (---.proxy.aol.com)
Date:   04-17-05 21:12

Jeremy,

Your dermatologist has probably never had Sarcoidosis lesions. They can and do itch!

Ichthyosis symptoms severity can vary, and the symptoms can just be dry skin, and I have that as well. I was misdiagnosed with Psoriasis before I was diagnosed with Sarcoid. I would suspect that it is Sarcoidosis that is causing your symptoms.

Since Sarcoidosis is a systemic disease, it doesn’t normally exist in only one area. It can be in other organs but not presently causing problems for them. As the disease progresses, and more of the bacteria are in the other organs, and they cause damage, it will begin to make it’s presence in them known. Yes, I would be concerned that if the skin Sarcoid isn’t improving that any other organ affected by Sarcoidosis wouldn’t be improving.

I think I mentioned to you that my heart’s inflammation did improve while I was on Prednisone, for a few years. Then I started having the symptoms that I had had before going on the Prednisone. The inflammation in my heart was back. Only, this time it was worse, and my cardiac output was less than it had been before I started the Prednisone.

Caroline is absolutely correct. Sarcoidosis is a deadly disease. People do die from it. It’s just that most of them don’t make the news. I know that I would have been one of them.

I am still hoping that you can convince the military doctors that they aren’t giving you a treatment that is helping you. On the contrary, it can get worse while on the Prednisone.

Best wishes,
Lottie

*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: Skin Sarc, What does it look like?
Author: Jeremy Riley (---.misawa.af.mil)
Date:   04-17-05 21:41

Thank you both,

Your extensive insight has helped me vastly.

Jeremy
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-17-05 21:42

Jeremy,

Sarcoidosis skin eruptions can be in differerent shapes and sizes, which you understand from viewing the photos in this file. I used to have several different types at different times: the white-looking bumps around my eyes, lupus pernio-type lesions around my nose and mouth, small nodules on my chest, arms, and upper hips, tan bumps on my face and sometimes the scaly stuff on my legs. "Ichthyosiform" comes ichthyo (Greek: fish). It's used to indicate a "fishlike" shape - or in this case, like fish scales.

Here is a published report that concludes. "A diagnosis of sarcoidosis must be considered when a patient presents with acquired ichthyosis."

You should ask your doctor how, if your scaly skin is just dry skin, it doesn't respond to moisturizer, creams or lotions. I used all of those, but the truth is that my scaly skin and all my skin lesions got better as my sarcoidosis improved. (Yes, my lung imaging and breathing improved, but only after the MP.) It can take several months of using the special dosing of antibiotics on the Marshall Protocol to resolve sarcoid skin lesions.

Just beginning to control sunlight and vitamin D can bring some relief, but it will take a lot of discipline.

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: Skin Sarc, What does it look like?
Author: Jeremy Floyd Riley (---.misawa.af.mil)
Date:   04-17-05 22:20

What do you think about the extensive bumps on my back, upper chest, shoulders, upper arms and buttocks being described as a yeast infection? Does this happen to others? It looks exactly like the Sarcoidosis cutis, small nodules pictures.

Thank you,

Jeremy
 
 Re: Skin Sarc, What does it look like?
Author: Lottie (---.proxy.aol.com)
Date:   04-17-05 23:05

Jeremy,

If you're asking if the doctor could have made an incorrect diagnosis, the answer is "yes".

If you're asking if the lesions you are describing are more likely to be Sarcoidosis... that's a little more difficult not seeing the ones on you myself. But, from your description, I would say that it sounds like Sarcoidosis lesions. Like Belinda, I have several different types of lesions. Some are "flat" and circular, some look like the pictures of sarcoidosis cutis, small nodules, and some are very scaly most often within a circular area. Some start out looking like the nodules and then seem to enlarge into a circular lesion.

For me, a lot of them, but not all, went away while I was on the Prednisone. As I weaned off of the Prednisone, the old lesions, and a lot of new ones started showing up. When I got to the point that I was just on the Benicar, several of them healed, without any topical creams, etc.

There are still quite a few, and as I'm going through the antibiotic phases, they flare, and then heal. Now, they seem to be part of my "herxing".

And, most of them itch on and off. Itching is not limited to yeast infections. "Annoying" the nerves can cause itching even before a lesion shows up, and now I can usually tell where a lesion is going to appear, because it starts itching.

Lottie

*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: Skin Sarc, What does it look like?
Author: Debbie D. (---.lgca.org)
Date:   04-18-05 09:00

I am embarrassed to ask this but the last two months I have had problems with itchy bumps in the genital and rectal area. Dr. thought the genital was related to sarc and now I have itchy bumps in rectal (not hemorroids)???? Can this be skin sarc?
 
 Re: Skin Sarc, What does it look like?
Author: Lottie (---.proxy.aol.com)
Date:   04-18-05 21:48

Debbie D,

Yes they can. Skin sarcoidosis can manifest anywhere. And, sarcoid skin lesions very definitely can itch.

You're actually fortunate that your doctor is aware they are likely sarcoid, in that many doctors don't recognize that sarcoidosis can appear anywhere.

Lottie

*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
 
 angular cheilitis
Author: Dorene (---.cable.mindspring.com)
Date:   04-28-05 15:27

Within the past month I developed fissures at the corners of my mouth. They have since healed but I still have this red rash at the corners. I have tried all kinds of "lip conditioners" "topical abx" and I am now trying topical hydrocortizone. Can this be related to my sarcoid? I have also noticed an increase of my arthralgias and myalgias over the past week.

Dorene
 
 Re: angular cheilitis
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   04-28-05 15:58

Dorene,

Wlecome to SarcInfo. The red rash in the corners of your mouth may be a yeast infection. Ask your doctor if you could try a topical antifungal cream.

You did not give us any background information, so I cannot comment on how this might be related to your sarcoidosis or on your recent increase in pain.

Let us know if you have any questions about recovering from sarcoidosis with the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com. (MP.com)

Best,

Meg

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: Skin Sarc, What does it look like?
Author: Geraldine Talley (---.bflony.adelphia.net)
Date:   05-12-05 13:20

I was first diagnosis with Skin Sarc when I was 18 years, I am 46 now.

The left side of nose was half the size of a fist, my left cheek/jaw was big as if I punched a medium size apple in it. My nose was red with blister and so was my cheek/jaw. Every where I went people callee the elephant lady. I lost a lot of years of my life, being shame and having a complex regarding Skin sarc...other legions was on my body as well, but the face was the worse.

Immediately after I would state predisone I could see the swelling going down. My norm weight have always been, 135...I'm at 215 now..and never could get it back down...

I have lazer surgery on my nose in 1987, but the cheek and nose has scars and is still very red, especially in summer time.
I'm always tired, fatigue, etc.

My appetite is up and down

As of today, my last encounter with steroids was November 02 and everything at this point is content with skin sarc
 
 Re: Skin Sarc, What does it look like?
Author: shelagh masters (---.proxy.aol.com)
Date:   02-21-06 10:35

i have ulcer-type sores on both lower legs; on the right leg the sore is small, round and very hard but punched out in the middle; on the left leg there are three sores, one large one which has joined with a smaller one and is extremely sore, weepy and surrounded by angry red tissue; the other is like the one on the right leg.

i am being treated by my gp for venous ulcers; but the nurse who is dressing the sores says that i should not be having the amount of pain i am experiencing. the nurse put on a four-layer bandage yesterday and by this morning i was in tears with the pain, and had to have the dressing removed.

when i recently saw the consultant who diagnosed these venous ulcers, he immediately mentioned sarcoid; i have had it for about 14 years now and so far it has affected lungs, joints, liver and eyes; but he never suggested that the sores could be sarc related. i am back at the hospital on friday for further dressings etc and i am worried that they will offer to replace the dressings and cause even more pain, without being absolutely sure of what they are treating. is it likely that these sores are sarc-related? and if so, what do i do next? thanks for any help you can give me. shelagh

smasters
 
 Re: Skin Sarc, What does it look like?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-21-06 17:47

Hello Shelagh M,

Welcome to SarcInfo.com. Any skin lesions in a sarcoidosis patient should be suspected as sarcoidosis. You could ask for a biopsy, but not all skin lesions due to sarcoidosis are going to result in granulomatous inflammation on the pathology report.. some lesions will only have inflammation. You can remind your physician that you already have diagnosed sarcoidosis, that it is a systemic disease, that skin lesions are a very common manifestation of sarcoidosis, and cutaneous lesions range across a wide variety, including ulcerous lesions.

I hope you will continue reading the information on www.MarshallProtocol.com and www.SarcInfo.com. You will not get well and will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the Marshall Protocol.
CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL

Our members provide personal testimonials to the efficacy of the Marshall Protocol in MARSHALL PROTOCOL SUCCESS STORIES

The What is the Marshall Protocol? forum is the best place to start your reading.

PHASE ONE MARSHALL PROTOCOL is a detailed guideline of the first three months. The second and third phases are available upon request at completion of phase one. Your physician can see the entire protocol in the Section for Medical Professionals.

To determine if the MP is the right treatment for you, ask your doctor to test your D-Metabolites. When you get the results, post the actual numbers in the Preliminary test results forum for expert analysis because results within the normal lab ranges can still be abnormal.
Vitamin D Tutorial

You should begin immediately to avoid all ingested sources of Vitamin D:
THE IMPORTANCE OF AVOIDING INGESTED VITAMIN D
FOODS TO AVOID and FOODS SAFE TO EAT

Let us know if you have any questions not answered in our ABOUT THE MARSHALL PROTOCOL forums, by posting in the General Discussion of the Marshall Protocol forum or the Parents' Forum.

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: Skin Sarc, What does it look like?
Author: Lisab624 (---.dsl.sfldmi.sbcglobal.net)
Date:   03-01-06 11:47

Hi all thanks for the good reading I believe I posted in here a few years back.
I was diagnosed with skin sarc back in 1999-00. I had 3 biopsies done on the lesion on my arm because the first 2 just were not good enough for me! I have to double check.
Last winter I was at bowling with a hoarse voice almost to the point of losing it and I have never had this happen to me, I need to talk..
Well I suddenly felt a burning sensation where my old sarc was and I look down and here is the red bump and I of course itch it and now almost a year later it is slowly growing like the first one and is scaly and slightly red. On top of tht my eyes water all the time and I thought it was allergies. Until I lloked into my eye lid the lower one and saw a white bump in there . So off to the docs again and he said it looked like sarc but wait to see if it gets any bigger then we will do a biopsy. Today I am sick with this cold tht has been going around, and for me? I havent had a cold in years (grateful) But I guess tht could be because I never left the house for the past 3 years. I was working from home. I also have had the redness around the nose and tht went away. I had tht for about 2 years only in the winter.
But here is my question...
Any of you have itchy nostrils? inside the nose, the lower part?

And why is it I feel sick all the time and even when I showed the doctor the new sarc lesion he took blood and said my sarc levels were not showing?

Is it possible to have it and your blood levels be ok? Again what is on my arm was diagnosed as being sarcodosis. non-caseating granulomatous and some other jargon I didnt understand. Talk to you soon...
Thnaks for hearing me out...Just having a hard time because I have to see 6 differnt doctors for one disease and they keep trying to send me to a pulmonary doctor when my lungs are not the problem even though I am on 3 inhalers,singulair and eye drops. for "allergies" and bronchitis
 
 Re: Skin Sarc, What does it look like?
Author: Lottie (---.proxy.aol.com)
Date:   03-02-06 01:38

Lisa,

Welcome to SarcInfo.

Your doctor is probably referring to the ACE test. It is normal in a lot of people with Sarcoidosis. Mine has never been elevated, and I also have biopsy proven Sarcoidosis. It is only significant (and useful) when it is elevated.

Sarcoidosis is a systemic disease that can affect any and all organs in your body, and usually affects more than one. It will generally get worse. Most doctors still think of it as only a lung disease. If you are using inhalers, and singulair… you have lung problems.

Pulmonologists are generally the ones that are considered “Sarcoidosis specialists”, since the lungs are often involved with Sarcoidosis.

Dry eyes is a symptom of Sarcoidosis, and tearing is characteristic of it. That is because the glands that maintain moisture in your eyes aren’t functioning properly, and the tear glands that cause “crying or allergic tears” are trying to maintain the moisture in your eyes. Because they aren’t the right chemical make-up it doesn’t keep them moist… so they keep running.

People with a Th1 disease, of which Sarcoidosis is only one, are unable to regulate the production of vitamin D. If you look at the list of HYPERVITAMINOSIS-D SYMPTOMS you may recognize many of the symptoms on the list. (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for “vitamin D”)

When you have blood tests done, you should have your doctor order the D metabolites tests and others as noted here... D METABOLITES TESTS. Read the information about the proper handling of the specimen. Be SURE THAT THE LAB KNOWS THAT THE 1,25 D SAMPLE MUST BE KEPT FROZEN as soon as it is "spun down", and then kept frozen while in transit and until testing is done.

When you get the results, please obtain a copy, and post the actual numbers from the results on our sister site, Marshall Protocol.com in the thread named ”Preliminary test results”, and we will help you evaluate them for your doctor. Please read the information which is listed in the first post “WHAT to INCLUDE in your preliminary test result reports”, and include the requested information along with your results. You will be starting your own thread in that section. You can let us know here on SarcInfo if you have any problems starting your own thread there.

Don’t accept the term “normal range” for the results, you want the actual numbers. Even what is considered “normal”, or even low, can indicate Th1 inflammation. This will help to give you an idea of how much inflammation that you have going on in your body.

The Marshall Protocol is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them.

The Marshall Protocol -- simple explanations

SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

Most of us have found that our Primary Care Physicians are the ones most open to the Marshall Protocol, and willing to help us with it. The Marshall Protocol -- simple explanations

I will be sending you additional information in an email. Let us know if you have any questions about implementing the MP.

Lottie

*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
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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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