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 The material here provides useful background, but most of this site is now out-of-date.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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 Memory Loss
Author: Cher (144.138.225.---)
Date:   05-05-02 12:46

Hi Everyone,
Is it just me or do any of my fellow Sarcholics (pet name from a fellow sufferer) have major problems with their memory? Mostly my short term memory seems to be affected. I can remember alot of my childhood but don't ask me what I was doing an hour & a half ago lol.
I don't know if it has anything to do with Sarc or Neuro Sarc but I am only 35 so I shouldn't be going the alzheimers route yet.
I have to write everything down & carry note pads with me all the time so that I can get things done. I make a phone call & forget who I've called or why I called.
Just another peice of the puzzle maybe.
Cheers everyone & Stay positive ... Cher
 
 Re: Memory Loss ???
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-05-02 13:16

Cher, memory loss is the single most common symptom that I hear sarcoid patients talk about. It is followed by paresthetic pain and fatigue.

But the patients with whom I talk are usually able to have the recollection "pop into" their brains after a minute or two.

I am pretty sure that this is exacerbated by high levels of 1,25-D
Certainly, in my case, my memory has returned to 'normal' since the 1,25-D was controlled by the ARBs. Of course, it could have been the ARB controlling the Angiotensin II

Some scientists are postulating that the levels of Angiotensin II and Angiotensin IV in the brain affect one's ability to recall events from their memory, and to store new events for later recall.

Most Sarc patients have high levels of ACE (even though the ACE reading is suppressed during Prednisone therapy).

This is one of the reasons why I am such strong advocate of total control of the ACE/Angiotensin system in sarcoid patients with ARBs.

..Trevor...
 
 Re: Memory Loss ???
Author: Cher (144.138.225.---)
Date:   05-07-02 21:00

Thanks Trevor,
As usual although I hate knowing other people are suffering as I am it's also so comforting to know that I am not alone (so it's very contradictory).
I phone people to ask or tell them something & by the time we've said hi ... I can't remember why I called?? Similarily when I think of something that I should write down by the time I get to a pen or paper I have again forgtotten lol.
Finally what sort of test is it that I need for ACE levels & how often should this be done???
I know this is probably a stupid question lol ... but what is Parasthetic Pain, I didn't think I'd ever know pain like I have with Sarcoid but I don't know what Parasthetic pain is.
Cheers Trevor .... Your knowledge is astounding & it's so great to have someone like u to help us all. U r a gem.
Cher
 
 Re: Memory Loss ???
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-07-02 21:30

Cher, Parathesia refers to a hightened or abnormal sensation. It is important to understand that most pain in sarcoidosis cannot be understood by people who have not experienced it. When you tell your doctor about debilitating migraines he puts it into his frame of reference and imagines mild headaches, the worst he has experienced. When you talk about "painful burning sensations on the skin" he is not likely to imagine skin actually being burnt by flame, but by sunburn.

This is because the nervous system in a sarc patient and/or the brain, amplify and exaggerate sensations beyond that experienced by the general population. Hence my use of "Parasthetic Pain".

ACE and 1,25 dihydroxyvitamin D3 are standard tests that can be done from blood drawn at any doctor's office. They are simple tests which should be performed whenever you want to assess the active/inactive status of your inflammation. There are better and more complex tests (eg, Gallium Scan), but these two are the simplest to perform (although they do not necessarily give useful results). Make sure you get the ACTUAL NUMBERS from your doctor, and not just a "normal/not normal" analysis. There often is a change in the numbers even though the data is still within the 'normal' range. There is a thread on the genetic underpinning to this anomaly. It is called "ACE measurements ain't so simple"

..Trevor..
 
 Re: Memory Loss ???
Author: Mona (---.rasserver.net)
Date:   05-07-02 23:33

Hi Trevor,
I also have momory and concentration problems. I thought it may even be ADD. If there is a problem in the brainwhat can be done? I have an appointment with Dr. Sharma this week and hope that he will run some tests. He had done a gallium scan but it was negative. I also had a brain MRI and that was OK.
Regarding pain I was diagnosed with fibromyalgia and treated for many years with ultram and klonopin. What a nightmare! I think that my pain syndrome was actually a constant withdrawal from Percocet that was given to me many years ago after eye surgery. I had one surgery after another so I stayed on the Percocet for about one year. After weaning off of it I experienced terrible unexplainable pain. To combat the pain I was given hydrocodone and then ultram. Enter klonopin for the anxiety caused by the eye surgeries and divorce. Now that I am off of everything I have much less pain. I think some people's pain is caused by weaning off of pain medications. It takes a very long time for the body to return to normal after taking pain meds, sometimes months. There is a pain rebound and the body seems to be hypersensitive to pain for more than what seems to be a tolerable time. Enough rambling...Mona,
 
 Re: Memory Loss ???
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-08-02 05:58

Mona,
If a pharmaceutical drug is working in your body it usually works very well. There is a huge difference when you start taking it.

Percocet, hydrocodone and ultram are all similar opioids. You can find out more about them from RXlist.com or from the SarcInfo thread "Opioids suggested for refractory arthritic pain".

Klonopin, on the other hand, is from a class of drugs, called psychotropic drugs, that often do not work well with sarcoidosis patients. The psychotropic drugs that I have been prescribed have certainly been a mixed bag. Fluphenazine caused me to have involuntary muscle spasms, And Diazepam only worked in the original (Valium) formulation, none of the Diazepam generics worked at all! On the other hand, 2mg of Valium, 1/5 to 1/10 the 'usual' dose, was enough to knock me out quite effectively. These drugs just don't seem to be working the same way in the minds of sarc patients as they do in the minds of the 'normal' population, and I recommend extreme care when starting therapy with any of them.

In the long term, I believe that Sarcoidosis patients often suffer more from the drugs they are given than from the ravages of the syndrome itself. Once we fully understand the body's immune processes, and why they run amok in sarcoidosis, I expect that we will look back with horror at what we used to do to our bodies while we were looking for some sort of "magic bullet" capable of "curing" these immune disorders we call "sarcoidosis".

Keep smiling,
..Trevor..
 
 Re: Memory Loss ???
Author: Caroline (---.win.org)
Date:   05-08-02 21:11

I also have problems with short term memory. Seems to fit Cher's description. Someone can tell me something and the next minute I ask the same question. Also if there is a discussion too in depth with several people participating I feel my mind drifing off to something else. Reading and making a new recipe used to be super easy. Now I have to keep reading the measurements over and over. Wierd stuff......caroline
 
 Re: Memory Loss ???
Author: Carola (---.easynet.co.uk)
Date:   05-13-02 04:44

I'm soooooo pleased other people have this problem as well as I thought I was going mad!

I am finding my memory is getting so bad now and find it very difficult especially in my job. It makes me feel totally inadequate and stupid. My daughter often makes remarks about my memory, it is so bad that I often can't remember what I said myself 5 minutes before!!

Trevor mentioned that the ACE level was important - what is an ideal or "normal" reading be?
 
 Re: Memory Loss ???
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-13-02 05:32

Carola, there is no single 'normal' value for ACE. There are three, depending on the genetic allele you have. Look at the thread on ACE measurements.

In any case, virtually nothing is known about Angiotensin IV other than its chemical structure, the fact that many areas of the brain seem to have receptors for it, and the fact that it seems to be implicated in memory loss. Easiest way to deal with it at this point seems to be to blockade the Type 1 receptors for Angiotensin II, the ones that produce inflammation, which increases the levels of available Angiotensin II to break down into Angiotensin IV. A lot more will be known in a year or two. Gard's paper, "The role of Angiotensin II in cognition and behaviour" is the best summary available at this point. You will need to get the full text from a med library.

..Trevor..
 
 Re: Memory Loss ???
Author: Angelique (---.org)
Date:   05-13-02 07:25

Hello Everyone,
This is the first time I have heard of anyone sharing the symptom I seem to suffer; Memory Lost. I explained that to my doctor and he thought it was not do to the sarcoid. I stopped using equal sugar replacement, thinking it was the culprit and still didn't have any improvement with forgetting. It's not all the time for me yet, but I can identify with calling someone and forgeting who I'm calling and why? And yes, I too think it's to early for Alzheimer's.
Thanks for Sharing
Angelique
 
 Re: Memory Loss ???
Author: Pepe (---.cache.pol.co.uk)
Date:   05-21-02 09:23

Hi there,

I have been reading the threads with fascination, being a sarcoidosis patient for almost 3 years. It was only after a particular unsatisfactory yearly checkup last week ( they didnt even check my ACE levels ), when I decided to do some research of my own that I found this site. So thanks
With reference to the memory loss..I was wondering if oil of Evening Primrose and Omega 3 fish oils might be beneficial.. I know that it helps a lot with ADD and dysbraxia type ailments. Something to do with the limbic region of the brain and neuro transmitters

Take care Pepe
 
 Re: Memory Loss ???
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-21-02 09:32

Pepe, just be careful that the Omega 3 Fish Oils don't have Vitamin D added to them (look at the ingredient list).

You might also try large quantities of Vitamin E (1000 IU every 6 hours) and Beta Carotene (25,000 IU every 6 hours). The Beta Carotene can affect your liver and kidney, so be careful with that one.

Dr Alexandre Vizel (from the University of Kazan in Russia) tells me that they use Vitamin E injections routinely in Russia (I have no idea what the relevance of that is to the subject, it just seemed to fit in here).

..Trevor..
 
 Re: Memory Loss ???
Author: Pepe (---.cache.pol.co.uk)
Date:   05-21-02 12:30

Ok thanks Trevor, it was just a suggestion after someone mentioned ADD.. btw never even thought about the fish oils containing vit D .

I was actually treated for TB before they (the DR's) did a heaf test for TB which tested negative. Funnily enough the TB drugs helped with the enlarged lymph nodes in my neck and lungs..I wonder if I'm the only sarcoid patient that was treated with TB drugs ? I doubt it lol seems they diagnose most things before they diagnose sarcoids. It was decided that since I had taken the TB drugs for 2 months when i tested negative for TB I might aswell finish the course .. seems mad to me.. the only other thing is that because I had TB put on my notes they will never give me steroids unless its a life or death situation..at least thats what they tell me.

Thanks again

Pepe
 
 Re: Memory Loss ???
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-21-02 12:41

"Seems mad"? - no way, Pepe.
You see, the tests for TB and other Myco/Bacterial infections are not very good. That is because the tests do not test what is in the soft tissue, they only test the blood. Mycobacteria can live undetected in the soft tissue for many years, and active infection can recur from time to time.

The lymph nodes are the body's trash collectors. They will become enlarged whenever the body is infected with something that the immune system is fighting.

Not only were the docs correct to keep you on the antibiotics (IMO), but, given what we know know about the ability of these infections to evade blood tests, I personally believe it is a good idea to consider (with your doctor) a short course of tetracycline antibiotics if your sarc ever seems to be getting quickly (day to day) worse.

..Trevor..
 
 Re: Memory Loss ???
Author: Pepe (---.cache.pol.co.uk)
Date:   05-21-02 13:27

HI Again,
My diagnosis for whatever it is I have.. was made after a lymph node biopsy for Non Hodgkins. My Consultant freely admits it was a whole comedy of errors that led to the diagnosis and treatment of TB. Mainly a mistake made by the micro biologist in not seperating the sample into two parts for testing. Because they were looking for Non Hodgkins ( my brother has it ) they were more concerned about that. The sample tested negative for TB germs but looked as if it was non-caseating granulomous tissue, which led the micro biologist to think it was TB despite no germs being present. My consultant admits that he never got to see the sample for himself and could only go by the micro biology report. He wanted to take another biopsy as I had plenty more bumps in my neck lol .. but because I had a bad reaction to the anaesthetic and didn't breath without ventilation for a while after the op .. he considered it too dangerous to try the procedure again.

Anyway the topside of it all is I'm feeling much better now

Pepe
 
 Re: Memory Loss ???
Author: Mike (---.mer.netdoor.com)
Date:   06-02-02 09:56

Seems to me there is a strong correlation between memory loss and fatigue. I normally have moderate fatigue but when it worsens, the memory loss worsens as well. It's gotten so bad even friends at work tease me about it. They attribute it to drugs (and there is some merit to that) but I've followed so long now the relationship appears obvious.

And Trevor, thanks so much for this site. I don't contribute much because I've had so little to add but I am a frequent visitor. Keep up the good work, please...
 
 Re: Memory Loss ???
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-02-02 10:23

Mike,
Both short-term memory loss and fatigue come from the same cause - the chemicals released by the inflammatory macrophages (primarily 1,25 Dihydroxyvitamin D3 and Angiotensin II).

You can be on no drugs whatsoever and you will still have these same symptoms as long as there is there is the uncontrolled inflammation of sarcoidosis.

..Trevor..
 
 Re: Memory Loss ???
Author: Diane (---.proxy.aol.com)
Date:   06-02-02 22:30

I am so glad to know that someone else is having this memory loss problem. I too carry a journal with me everyday and a date calendar. I have to write down everything now. I thought I was just losing my mind. It seems to be worse when I get really tired or if to many things ar going on at the same time. I just take one task at a time and pray I remember what to do next.
Di
 
 Re: Memory Loss ???
Author: Dan (---.dsl.easynet.co.uk)
Date:   12-20-02 11:37

I don't remember...Sorry I could resist it.
I have noticed a similar problem.
I'm 30. Who knows???
 
 Re: Memory Loss ???
Author: caroline (---.win.org)
Date:   12-20-02 21:07

What??

I too have trouble, especially if there are several people talking at the same time in different conversations near me. I also have to concentrate very hard when cooking, even with something i've made for years. I just forget or overlook an ingredient. Not like me, I feel as though I am losing my mind at times. My adult kids tease me that I am getting part-timers.

Caroline
 
 Re: Memory Loss ???
Author: Meg (---.188.243.46.euc.wi.charter.com)
Date:   12-21-02 08:49



Memory loss is a problem for me also and seems to be due to an elevated 1,25-D as my ratio is near normal. Inability to focus, lack of concentration and even inability to pronounce a word seem to accompany my fatigue. I'm excited to begin Benicar asap to see if some of these symptoms will be alleviated as the 1,25-D goes down.

I've had these problems off and on for years and they have been attributed to menopause although HRT did not alleviate them. Luckily, my left foot became numb and atrophied which couldn't be blamed on my age! So what started out as a worrisome problem has actually led me to the source of my complaints.

"Every problem has a gift for you in its hands" Richard Bach

Keep thinking positively and following Trevor's advice. Hopefully, we'll all regain our 'lost' minds.

Happy Holidays!

Meg
 
 Re: Memory Loss ???
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-21-02 09:43

Meg,
Memory loss might actually be caused by a rise in the Corticosteroid Hormone Angiotensin II, which rises along with the 1,25-D

There was an excellent paper published by Prof Paul Gard in March (about 31 pages) "The Role of Angiotensin II in Cognition and Behavior". It details animal experiments where neuroses such as endurance (presumably also fatigue), depression, anxiety and cognition, were all found to be dependent on Angiotensin II

This is one of the reasons that angiotensin blockade is so important as part of the overall therapy.

..Trevor..
ps: I would note that Angiotensin Converting Enzyme and Angiotensin II are two completely different substances.
Angiotensin Converting Enzyme (ACE) is a gene (MW=152,000-290,000)
Angiotensin II is the active Corticosteroid Hormone (MW=1046) and it bonds to the AT1 receptor which is a gene. The ARB stops A-II from bonding to the receptor
 
 Re: Memory Loss ???
Author: Kathleen (65.121.96.---)
Date:   12-21-02 13:27

Hi all -

My memory is terrible - more short term than long, but I find that the worse I feel, the worse it is.

I also tend to stutter when I speak - I can't get my thoughts out; and I lose my train of thought in the middle of a thought.

I also used to be very adept at multi-tasking - I worked as an EMT-Intermediate/Advanced Life Support for an ambulance company; I have done triage and phlebotomy and admitting in ER's; and have run offices and hospital departments. I can no longer cope with distractions, and I have to concentrate incredibly to finish one thing.

Very frustrating!!!

Kathy in Wyoming
 
 Re: Memory Loss ???
Author: Meg (---.188.243.46.euc.wi.charter.com)
Date:   12-21-02 14:32

Hi Kathy,

It seems like a disproportionate number of us are from the medical field. I too have to use extra care these days to accomplish my tasks at work without error. Thankfully my errors are usually of the paperwork variety but I was concerned enough to mention it to my director the other day. She encouraged me to take my time and not to worry. I'd hate to make a mistake with a patient.

I do find it comforting to know the science behind the problem. At least we know it's not all in our heads!

Cheers,

Meg
 
 skin sensation
Author: shelagh (---.proxy.aol.com)
Date:   12-29-02 11:47

sorry if this message isn't in the right place - i'm just a bit panicky at the minute as i am having some very strange skin sensations - affecting the left side of my face; my skin is very touch-sensitive - a sensation which has only begun today andis steadily getting worse. i havein thepast had trigeminal neuralgia on the other side of the face. i have also pain in my mouth, behind my lower teeth; and the glands at the front of my neck are swollen and tender.

i have had sarcoid for eight years now and it has so far affected lungs, eyes, joints and skin. is this a sign of worse to come or is it a 'common' side effect of the disease? i had thought that i was in remission - i have had very little trouble for some months.

i would be grateful for any coments?? shelagh
 
 Re: Face sensitivity
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-29-02 17:02

Shelagh,

I have experienced symptoms similar to what you described: pain in the mouth, teeth and glands near my jaw and tongue. I don't know that I would call these "worse symptoms." My experience was that these symptoms, along with a feeling of numbness and swelling in my lip and tongue, came after exposure to sunlight. Have you recently had increased sunlight exposure? One possibility would be holiday activities (such as shopping or travel) that resulted in more sunlight exposure, which would have made your levels of active vitamin D (1,25-dihydroxyvitamin D) surge.

My symptoms like this begin to minimize with less sunlight. I suggest you spend 2-3 days totally out of the sun. Even sunlight through a window can provoke this reaction unless you are taking angiotensin receptor blockers.

Belinda
 
 Re: Memory Loss ???
Author: Debra Simmons (---.freeuk.com)
Date:   01-05-03 13:14

Hello. What a relief, to actually have someone else who feels the same, my memory is fine, except for names. I cannot remember names. It came on gradually, I thought it was after I had had chemotherapy, but I'm not sure. I cannot remember drug names, and then suddenly common sense arrives back and there is the name. I know what the drug does, what it is for and why its being given, but the name, NO.. This is fine when it doesn't really matter, but when you are a nurse like me, its a nightmare.

On a good day, hello Mrs......... on a bad one, oh yes what was your christian name and a frantic guess. We all pass it off with jokes about my memory, but I guess its our sarcoid yet again.
 
 Re: Memory Loss ???
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-05-03 14:28

Debra,
Long ago I learnt to not try and call people by their names - it saves embarassment

To be honest, this is not something that came back as the sarcoid remitted. Sure. memories of my childhood, memories of my education, total recall of computer terms - but not names Maybe I 've fallen out of practice after all these years.

..Trevor..
ps: you can buy 'Palm' organizers with the drug databases pre-programmed, drug interactions and all. Maybe your colleagues would fall for the excuse that you are being "extra diligent" and "want to check the interactions as well", before opening your mouth

 
 Re: Memory Loss ???
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-05-03 16:29

Oh, but my favorite, the number one embarrassment of all.. is calling someone you know well and not being able to think of their name. You know who you are talking to, all their connections to you, why you called.. but their name.. is.. er.. a blank. 8)

Debra, I think you are on to something! My biggest problems centered on nouns... names of everything. As if the door to that particular memory storage vault was affected by my high levels of 1,25-dihydroxyvitamin D. I did find most of this reversed as I improved.

Belinda
 
 Re: Memory Loss ??? Omega 3s
Author: bernie (---.morenet.net.nz)
Date:   01-12-03 20:07

There seems to be some evidence that fish oils may beneficial in some lung problems e.g. cystic fibrosis, emphysema, asthma and COPD.
Is there any reason Not to take non Vit D supplemented fish oils in sarcoid. ? will they reduce ? damaging leukotrenes ?Is there any experience relating to their use in Sarcoid ? I can't find any !
I understand the taking of Vit E with fish oils is advised because it stops the oils oxidising. All comments very welcome
Ciao
Bernie
 
 Re: Memory Loss ???
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-12-03 20:15

Bernie,
How do you know the Fish Oil does not contain Vitamin D?
Only 5 micrograms (5x10**-6 gram) are needed to supply the full Adult RDI, and much less than that will make a Sarc patient sick.

I have spoken with Joe Mercola, who has assured me his fish oil has no vitamin D, but he is relying solely on the word of the manufacturer. Under FDA rules, unless the manufacturer is adding Vit D to the fish oil he doesn't have to declare the D content on the labelling. Yet fish oil, in its natural form, already contains a lot of Vitamin D. It is too risky, I wouldn't go near.


In any case, you are being made ill by the Sarcoidosis. Fish oil will not help you recover from that. Now that you have found SarcInfo please focus on the business at hand. It is so easy to do right...

..Trevor..
 
 Re: Memory Loss ???
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-17-03 19:44

This message was posted by Christian on a new thread, but it fits on this topic.

Trevor,


My memory is not good, and I feel it is deteriorating. It has been bad for years. I don't remember a thing from my high school and college years, only a little bit of my university years. Now my short term memory is being eaten away, I feel I'm in a coma most of the time, I have to write down everything or I'll forget. Lately, I went to withdraw some money at an ATM, took back my card, the receipt and left the money there (I know, it's canadian money, not worth much, but still).

I understand that 1,25 D is screwing up brains, but when the level of this hormone goes down, do you recover these lost memories, or they are lost forever?

Christian
 
 Re: Memory Loss ???
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-17-03 19:55

Christian,
My memory came back pretty quickly (within months) as I induced remission, I can remember all sorts of minutia from my youth, and from my more recent past.

..Trevor..
 
 Re: Memory Loss ???
Author: Sheila S (---.gci.net)
Date:   03-04-03 14:38

Trevor,
I am new to this site and I was wondering if there are any doc's you might know of in Anchorage AK that are open to the ideas discussed here? I hate the fact that the lung specialist that I see does not seem to want to treat my whole body. I too have memory loss and have to write everything down it effects my work and the rules, regs and statutes that I have to follow to do my job are very important. Is there anything else that you could suggest that I do? Of course I have a chiropractor that embraces all things new and I will run all this past him too. Then, maybe I wouldn't have to leave state to get a straight answer.

Thank You
Sheila
 
 Re: Memory Loss
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-04-03 19:07

Hi Sheila,

I think it's a rare person with sarcoidosis who has not experienced memory loss, inability to concentrate or 'foggy brain'. It can certainly affect your quality of life and your ability to do your job.

It's not uncommon for specialists, particularly pulmonologists, in my experience, to be uninterested in clinical symptoms not affecting the body part they specialize in. Subjective symptoms are often discounted but they can be the most debilitating.

There is a good discussion of how to find a supportive doctor on the topic thread Need a New Doc-What's The Best Way To Change. I believe Vickie lives in Alaska and may be able to help you locate a doctor in Anchorage.

Best of luck and let us know how it goes,

Meg
 
 Re: Memory Loss
Author: Vickie (---.gci.net)
Date:   03-04-03 19:33

Hey Sheila, I live in Anchorage!!!

Feel free to email me and I'll give you my telephone number and we can talk. I have a fabulous holistic nurse practitioner (with complete prescriptive capabilities) who treats my Sarc beautifully; I also have a wonderful chiropractor, too. :o) I'm peripherally involved in health care so I know lots of good providers.

So email me at vickie@hers... and I'll give you my phone number so we can share information.

Looking forward to chatting with you,

Vickie
 
 Re: Memory Loss
Author: Sheila S (---.gci.net)
Date:   03-04-03 19:59

Hi Meg, Hi Vicki,
I am sooooooooooooooo greatful to hear from you!!!!!!! Thanks, I did run it past my chiropractor and he too thought that all the resistance from my other dr. was not cool, and is checking into everything I printed from references given hear, that by the way the lung specialist wouldn't even look at and told me not to believe anything I read on the computer. I found out today that although there is lung involvement there is nothing in the eyes but since the disease state is mild and minimally active there is no need to worry and no treatment is nessary.

I feel like he just patted me on the head and said that it would be ok in his mind until I was really sick. I am going to see my counseler and get out my anger or channel it. =) My e-mail is ibzbrat@yahoo.com

Thank you both again!!!!!!!

Smiles to all
Sheila
 
 Re: Memory Loss
Author: DJ (---.tnt2.billings.mt.da.uu.net)
Date:   03-05-03 14:24

Hiyas All!

Hmm, now what was it I was going to say????

I am so glad I found this thread. Been laughing most of the way thru it - because I relate so well to your experiences. Just today I 'forgot' to return an email confirming an appointment with a client. I was sure I did it, but apparently not. Things like this happen all the time- and I used to be so efficient. Lucky I am sleeping with the boss (aka. hubby) or my job might be in jeopardy!

Just got my Rx for the antibiotic, but Doc doesn't want to prescribe the ARBs at this time. I think I will approach it from the anti-inflamatory aspect with him. (If I can remember to ask him.)

Thank you all for sharing your experiences. It is so good to have others that understand this wacky condition.

Beginning to feel like part of the Sarcinfo "family",

Uh, .... DJ.... I think. Maybe. Yeah, that has to be it - I'm pretty sure...
 
 Re: Memory Loss
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-06-03 03:27

DJ,
I am pretty sure that my memory loss started getting better in late 1999, when I first started on an ARB, but I cant remember that far back

The doctors are right when they say memory loss affects everybody. Occasional minor blackouts are par for the course. But Sarc folks do have a lot more than normal folks, and the irritability that comes with Hypervitaminosis D makes us less tolerant of them. Most Sarcies are high achievers.

I still get the occasional "blackout" of some little fact or other. It always comes back, of course, but these days I just ask somebody else, instead of waiting for that to happen "what was so-and-so's name". And, now that the irritability has all gone, the kindler gentler me doesn't get all upset any more about having to do that... but of course the blackouts are much less frequent.. keep on Doc about the ARBs...

..Trevor..
 
 Re: Memory Loss
Author: Anita D. Haynes (---.lvcablemodem.com)
Date:   04-12-03 21:44

I have been on a lower dose of Prednisone for about a month. The dosage was halved from 20 to 10 mg/day. I had been on the 20 mg dose for a few months. I now notice definite memory loss. It seems that the withdrawal from the prednisone has really affected my memory. Plus I itch!

dfosw

Love a Librarian!
 
 Re: Memory Loss
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   04-13-03 09:17

Hi Anita,

Welcome to SarcInfo. You are wise to begin weaning from the Prednisone. Lots of folks here have had experience with that. There is a topic thread called 'weaning off Prednisone-withdrawal problems' that will give you some helpful information about this sometimes difficult process.

Getting well can be a little uncomfortable but you are headed in the right direction.

Meg
 
 Re: Memory Loss
Author: katie (---.atl.client2.attbi.com)
Date:   09-01-03 09:21

hi everybody!
I wanted to ask a question about short term memory loss. My mom had chemotherpy and now she says she feels that her short term memory is affected. I have gone to a few sites to try to get information on this topic, but sorces are limited. I want to know if she and her other friends who have had chemo are just imagining it (as the docotrs say) or if this is really real. If you could, I would like to know where I could get information on the few tests that have been done on chemotherpy and short term memory and also know more about both individually. I want to know if there are certain chemicals that make it more likely to loose memory and which part of the brain controls short term memory if possible. Those are the types of things that I think would be inportant for us to know. Thank you so much for your time!

Katie
 
 Re: Memory Loss
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-01-03 10:05

Katie,
The clue to answering this question lies in the chemotherapy, not the brain itself.

the brain is the most complex organ in our body. There is no one single chemical, or group of chemicals, which regulate memory. A good memory requires good health in the whole of the brain, and particularly in the regions responsible for memory. Good health means the proper interactions of hundreds of hormones, complex proteins and amino acids, and of millions of cells.

Chemotherapy is the ultimate abuse which can be delivered to a body. The drugs administered for chemotherapy are not even properly characterized - science doesn't know exactly what they do. Methotrexate, for example (one of the older (and simpler) chemo drugs) somehow interrupts the folate mechanism which allows new cells to form. Nobody knows exactly what it does, but it does stop new cells from growing. Everywhere in the body, including the brain.

Oncologists know that this is all black-magic, but would of course be unwilling to admit the depth of their lack of understanding by admitting effects in the brain, on memory loss, for instance.

..Trevor..
 
 Re: Memory Loss
Author: Olive Shinholster (---.217.39.162.ip.alltel.net)
Date:   09-15-03 22:08

Hi Everyone,

I'm very happy to know I'm not going crazy or suffering from a mild stroke. I also tend to stutter when I speak, and lose my train of thought. When I speak my words sometimes comes out wrong, or may I say the wrong word or mispronunciation of words. My daughter tease me because I call her by her sister name or my sister name before I can say her name.




P.S. I have never been treated for TB nor had a positive test result, but I would like to know wheather or not it is safe to take an annual PPD skin test.
 
 Re: Memory Loss
Author: Meg (68.190.163.---)
Date:   09-15-03 23:08

Olive,

Brain fog is something with which most of us are familiar. But , happily, it is one of the first symptoms to resolve when 1,25-D is under control.

As this article points out, TB skin tests on patients treated with immunospressants are not reliable because they result in false-negatives.

Due to a phenomenon called cutaneous anergy, sarcoidosis patients may also have false negative TB skin tests even when not treated with immunosuppressants. Here is an explanation of cutaneous anergy from uveitis.org

Cutaneous anergy

In 1916, Boeck first described cutaneous anergy to tuberculin in patients with sarcoidosis. It was later on realized that this phenomenon was not limited to tuberculin alone, but that anergy to a variety of other skin tests-antigens such was also typical. In 1994, Kataria and Holter proposed a mechanism for the cutaneous anergy seen in sarcoidosis. At sites of granulomatous inflammation, there is a predominance of helper T lymphocytes, which proliferate and secrete large amounts of lymphokines, including interleukin (IL)-2, monocyte chemotactic factor (MCF) and migration inhibition factor (MIF). These lymphokines induce and amplify the immune response by enhancing T-lymphocyte proliferation as well as recruiting and retaining monocytes from the circulation. The lymphokines and monokines produced at sites of granulomatous inflammation have their highest concentration locally. Nevertheless, the protein molecules diffuse into blood, establishing a concentration gradient between the granulomatous inflammatory site and the remote site of the delayed type hypersensitivity (DTH) skin test. As a result, the traffic of T-helper lymphocytes and monocytes is preferentially directed towards site of granuloma formation. That leads to a preponderance of suppressor cells in the peripheral blood and competitively depletes the T-helper cells and monocytes available to sites of DTH.


It isn't dangerous to be tested for TB but for sarc patients it will not give you much information. When you say that you've never had a positive TB skin test do you mean that you had a normal reaction or that there was NO reaction? It is normal to have faint erythema at the injection site but with cutaneous anergy you will see NOTHING. I thought that was 'normal' until I was diagnosed with sarcoidosis. I just had my annual test and once again, NOTHING.

Meg
 
 Re: Memory Loss
Author: bpeck (---.co.us.ibm.com)
Date:   09-16-03 06:45

Meg:

My late mother, diagnosed with Sarc in 1949 (died in 1976), skin tested positive for TB... but they called it a false positive.

Since were talking about tests in the 1950's I don't know if she was ever titered for TB - or if antibody titer tests were even available in the 50's.

I wonder what the differnce was between a " true positive" skin TB test in the 50's and a "false positive?".
(She obviously wasn't one who had no reaction).

Barb
 
 Re: Memory Loss
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-16-03 06:59

Olive, Meg, Barb,
It is certainly dangerous to get a vaccination for TB. Personally, I avoid the skin tests, too, I would only have a test if my life was in danger.

The BCG vaccine is a known cause of Sarcoidosis, one of the reasons it has slipped into misuse over the last two decades.

..Trevor..
 
 Re: Memory Loss
Author: cewwoods (---.proxy.aol.com)
Date:   09-16-03 19:32

Sarcoidosis sufferers, it is my prayer that you all are finding strength in prayer as I do. I didn't understand a lot of things before, but now I do. I have an awful shortterm memory loss, (TOTALLY EMBARRASING) at times. This website is truly encouraging to me. I'm 36; been diagonosed for almost 7 years. Thanks to whomever created this website.
 
 Re: Memory Loss
Author: Olive Shinholster (---.217.39.162.ip.alltel.net)
Date:   09-16-03 20:08

Meg,

I am glad to Know that the brain fog will improve. I talked with my doctor today about checking my Vitamin D levels. I'm going to have the Lab done tomorrow.

I meant there was faint erythema at the injection site where the skin test was given. After starting on Prednisone, I avoided taking the skin test because I felt that it wasn't safe.

I agree with Trevor, but I guest I should have avoided the vaccination for TB after I was diagnosised with Sacroidosis.

Olive
 
 Re: Memory Loss
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-16-03 20:16

Olive says "I should have avoided the vaccination for TB after I was diagnosed with Sarcoidosis"

There is no need to worry about this, Olive, any live bacteria with which you were innoculated, will succumb to the long term minocycline and other antibiotics just the same as the other bugs you have picked up during your life.

..Trevor..
 
 Re: Memory Loss
Author: Brian (---.oc.oc.cox.net)
Date:   10-04-03 16:31

I have had Sarcoid for 5 years and my Lungs are still full of infiltrates and enlarged lymph nodes in the chest. All blood tests have been nornal and ACE is normal - no outward symptons other than the lungs and nodes.

I have started to get concerned about not being able to remember words in conversations. I am 50, so hopefully it is not Alzeimers yet!. The word is like on the tip of my tongue and I will remember it later or it takes a good few seconds to register. I generally try bfind another phrase so not make it as obvious. Do you think this is related to Sarcoid and what can I do about it. I do not take anything other than blood pressure tablets.

Thanks
 
 Re: Memory Loss
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-04-03 22:18

Brian,

Not being able to recall words, names, and even conversations are all reported symptoms of sarcoidosis. Some of us even have mental confusion. These symptoms were much worse when my serum levels of hormone-D were high. (Check out symptoms of hypervitaminosis D). The good news is that by controlling exposure to all sources of light and vitamin D foods, there can be significant improvement in a few days or weeks. This means wearing long sleeves, long pants, layered clothing, hats, gloves and sunglasses. Even indoors. In the beginning of my recovery, I wore sunglasses at my computer. I had all the drapes and blinds in my house closed all the time.

Since you are already taking a medication to control blood pressure, have you read about how angiotensin receptor blockers such as Benicar block the excess angiotensin II affecting the Th1 immune response in sarcoidosis? I would talk to my doctor about taking an ARB for hypertension, then implementing the minocycline regimine. When you talk to your doctor, be sure you discuss the point that higher doses of ARBs are needed to effectively block the AngII in sarcoidosis. This is a non-pressor effect of the medicine, and higher doses do not significantly affect blood pressure.

I have to agree with Trevor that the organ I am most pleased to have recovered from sarcoidosis is my brain. It was pretty scary when it didn't work right.

Belinda
 
 Re: Memory Loss
Author: Meg (---.115.75.185.euc.wi.charter.com)
Date:   10-05-03 19:21

Brian,

You said that "all blood tests have been normal". Have you had your D-metabolites tested?

The rationale for measuring 1,25-D and blocking angiotensin II is provided here.

Meg
 
 Re: Memory Loss
Author: peter dean (---.in-addr.btopenworld.com)
Date:   10-06-03 02:15

First of all thank you so much Meg for putting me onto this site.Just reading everyones thoughts have made me feel so much better. The thing that has worried me for awhile has been the inability to get my words out or to completly forget the word I want to use, the most frustrating thing being its there right on the tip of your tongue. I do not know who you are Trevor but well done you have explained more of the problems in 30 minutes than my Doc has in two years. Thanks.
 
 Re: Memory Loss
Author: Brian (---.oc.oc.cox.net)
Date:   01-02-04 23:34

I have had Sarcoid for 5 years, no real symptons other than infiltrates in the lungs and hilar adenopathy. I have had High Blood pressure for about 3 years and have recently started to worry about memory loss.

I find that words are not there when I want them. They seem to be on the tip of my tongue and I cannot get them so I have to think of other words. Of course after that they suddenly pop into my mind. I am finding that this is happening more lately and I am too young for Alzeimers (50).

I also tend to be forgetting things that I have told people to do just a few days /weeks ago.

If the Sarcoid is causing this, what test should I have to make sure that it is Sarcoid.
 
 Re: Memory Loss
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-03-04 09:46

Brian,

If you have infiltrates in your lungs and hilar adenopathy, you have significant symptoms of sarcoidosis even though they may not seem to be causing you overt problems. Sarcoidosis is a multi-system disease and the symptoms are systemic but often unrecognized. Because many of them are caused by the production of too much 1,25-dihydroxyvitamin-D we have listed the symptoms of hypervitaminosis-D in the patient tutorials. Have a look to see if you have other symptoms that may be due to your sarcoidosis.

High blood pressure and cognitive problems such as you describe are typical of sarcoidosis. The test you need is a simple blood draw for the levels of 25-D and 1,25-D. This is also described in one of the patient tutorials at the top of each page. When you get those results, post them in the thread 'my D-levels are back' and Trevor will analyze them for you.

The Marshall protocol is very effective at reducing the abnormally high level of hormone/vitamin-D which should resolve both your hypertension and memory loss.

Meg
 
 Re: Memory Loss
Author: Frostbyte (---.bay.webtv.net)
Date:   01-09-04 19:51

{Good thing I changed my name, this "Brian" (me) has had Sarcoid for an unmeasured time.

I've had Memory Loss and Concentration issues for as long as I can remember, I think.

I had ADD/ADHD as a child and just attributed it all to that, but now I'm not as sure as to the current source.

Now, I'm having speech difficulties. Words vanish and fog out on me. Pronunciation gets all out of whack. It's frustrating me so much I sometimes just want to not talk at all.

I have noticed this does increase at Summertimes! I just thought maybe I was'nt a "Summer person", but I may have had Sarc for longer than I thought!}


"We choose the hardest lessons before we live, then wonder what we were thinking, as we try to live through it all. Maybe I don't want to build character or be stronger."
 
 Re: Memory Loss
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-09-04 21:01

Hi Brian,

It can be hard to absorb the reams of medical information on this site when you are having difficulty concentrating. But it will be worth your effort. Right now, the patients are leading the doctors with Trevor's help. I call this 'survival of the savvy'.

It doesn't matter how long you've had sarcoidosis. If you do your 'homework' on this site and are persistant enough to find a supportive doctor, your sarcoidosis will be a thing of the past.

Meg
 
 Re: Memory Loss
Author: Barbara (---.proxy.aol.com)
Date:   02-16-04 19:37

Hi I'm new to this site but am glad to know there's a place to get answers and ask questions. I have been a sarcoids patient for the last 4 years last year found out that it has moved into my stomach and my liver. My liver enzymes are high. I am also expercing short term memory loss I can be driving and not know were I am at or were I'm going it gets scary some times. I had a head cat scan done but it is good so far. My doctors at Loyola say well at least it's not cancer. I quess there right but it sure travels and causes a lot a pain. No one seems to have knowledge on what to do I have a doctor for every part of my body now. I get confussed some times on who to call when I'm in an epsoide. I'm changing to Rush Hospital in March maybe they will be better. I get real depressed now not able to do a lot miss a lot of work, my husband dosent understand. One minute I can feel good and in a split second I can get real sick. I dont take predisone it's just something they give you because they feel it's an all cure drug and can get things under controll. But what happens when your body builds up resisitence to it.
 
 Re: Memory Loss
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-16-04 21:44

Hi Barbara,

Welcome to SarcInfo. Yes, this is the place to get the correct answers. Everything you need to know to put your sarcoidosis into remission is right here.

Funny how our doctors think we should be so grateful that it isn't cancer, that we should accept their inability to treat our sarcoidosis. Your experience with the CT scan suggests that your doctor thinks you are doing okay because it was negative. CT scans don't tell the whole story but your symptoms sure do. By the sound of your reduced quality of living, it might be better if you did have cancer. At least then your doctors wouldn't assume that it will go away on its own.

You are a very wise woman to recognize the futility of using Prednisone to treat this disease. Well-meaing doctors have grasped this 'wonder drug' since the early 1950s. Even now, when they recognize that it causes more harm than good, they continue to ignore the exploration of medications that could cure sarcoidosis. The body does 'build up a resistance to' Prednisone, so to speak. Because suppressing the immune system with Prednisone allows the bacteria to proliferate. Then there comes a point in time when the bacterial load is so great that no amount of steroids will suppress the inflammation.

I've sent you specific instructions via email on how to find your way around
SarcInfo. We've been where you are, so we know how hard it can be to learn new information when you're suffering from memory loss, brain fog and difficulty concentrating. Just keep asking questions about anything you don't understand and we'll help you in any way that we can.

Meg
 
 Re: Memory Loss
Author: Grant (---.134.94-220.clta.telus.com)
Date:   02-17-04 06:25

One of the main symptoms I experienced over the past few years was sleep distruption. Whether this was caused by the nasal congestion, or was a direct influence of elevated 1,25D is a moot point I suppose. The outcome was that I was always in a fog. I would often get stuck looking for a word halfway through a sentence, I would be unable to remember names, etc. etc... Happily this all cleared up as soon as my sleep quality improved -- which happened when I began step 1 of the protocol.

-- grant
 
 Re: Memory Loss
Author: brendan (---.mcbone.net)
Date:   02-17-04 06:53

I'm sorry. What was the question?
 
 Re: Memory Loss
Author: Julia (---.cache.pol.co.uk)
Date:   02-17-04 15:38

I started having memory loss along with menopause some years ago. I started on Ginkgo biloba and it went away. I felt as if I'd got my mind back. I still take a maintenance dose of Ginkgo.

Now I bet someone's going to tell me Ginkgo has Vit D!!!
Keep laughing, keep sane,
Julia
 
 Re: Memory Loss
Author: Barbara (---.proxy.aol.com)
Date:   02-23-04 07:20

I have had many symptoms with lung infiltrates since last spring, after a bronchoscopy, needle biopsy and open lung biopsy last week the MD feels I have pulmonary sarcoid. I found your site and feel there are so many answers you have that I need. I am a nurse but am not familiar with sarcoid. What is the relationship with Vit D and Sarcoid??? What should I ask my physician about treatment? At this time I am taking no drugs for the sarcoid. He has referred me to a teaching hospital in March, are there specific questions I should ask that they might not tell me? I do feel that I have significant memory loss and for some time have worried about Alzheimers, now I see from all your e mails that others have these complaints. I am so glad that I have found your site and thank you so very much for your information and help.
 
 Re: Memory Loss
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-23-04 18:27

Hi Barbara,

Welcome to SarcIno. Everything you need to know to put your sarcoidosis into remission is right on this website. After you've read the patient tutorials and papers for physicians, let us know if you have any more questions. I will send you a detailed guideline to the protocol via email.

We're glad you found the site too.

Meg
 
 Re: Memory Loss
Author: Kirk (---.dialup.scrm01.pacbell.net)
Date:   03-10-04 02:45

Has medical evidence been collected that can be substantiated and reproduced consistantly that truly links Sarcodosis to memory loss. Or, is this just a group of people that have short term memory loss due to a lot on their minds from day to day activities. My concern is that Sarcoidosis is being used as a scape goat for normal stress of everyday exisitance.
I reaize that most of the medical community does not give a shxx about Sarcoidosis because they are afraid of conditions they can not cure through their normal vendor represented pills and their conference/retreat information. But I hesistate to use this illness as a catch all without substantiating evidence. I am also afarid that sarcoidosis can lead to becoming a hypercondriacs. Oh I feel this now, it must be due to Sarcoidosis. Please excuse the sarcasim, but that could be due to sarcoidsis too. 8)
 
 Re: Memory Loss
Author: brendan (---.mcbone.net)
Date:   03-10-04 03:04

Kirk,
I am not aware of any studies linking memory loss with Sarc but I can say for myself that I do have a problem with my short term memory. I was suprised to read that the other people here do as well. I thought I was just being forgetful or that it was some type of side effect from smoking herb when I was younger. Sometimes I joke around and say that I have Alzheimers. But I do believe that the Sarc is contributing to my memory loss. I just wish I could forget I have this damn disease.
 
 Re: Memory Loss
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-10-04 09:00

Kirk,
There are a sizeable group of us now who have gotten to complete remission, or almost complete remission (depending on whose standards you use to define remission) and we are in a unique position to identify those things from which we used to suffer and which went away when the sarcoid inflammation disappeared.

Memory loss was certainly due to Sarcoidosis. As was aggressiveness, difficulty in concentration, and a host of other minor neuroses.

Based on my own experience I can assure you that you can use sarcoidosis as a "catch all", provided that your 1,25-D does not fall below 20pg/ml (or so), when other factors/diseases might be in play.

..Trevor..
 
 Re: Memory Loss
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   03-10-04 18:48

Kirk and Brendan,

Memory loss is a documented effect of hypervitaminosis-D. Since this condition is caused by sarcoidosis, it is logical to conclude that any hyper-D symptoms you may have are due to your sarcoidosis.

I take great comfort in attributing most (if not all) of my physical complaints to my sarcoidosis. This is because if they are due to sarc, I know that they will soon be a thing of the past. I'm confident of this because so many symptoms that I'd suffered with for years are suddenly gone, including memory loss, difficulty concentrating, sleep disturbance, irritability and depression. Coincidence, I think not. We have enough people telling us that our complaints are psychological or due to stress. Rest assured that you have a very real physical cause for your symptoms and know that they will resolve eventually with this safe, new treatment.

Take good care,

Meg
 
 Re: Memory Loss
Author: Pippit (---.asm.bellsouth.net)
Date:   03-10-04 23:15

Kirk,

In response to your question as to whether Sarcoidosis is used as a catch-all correlation with short-term memory loss I would say for the most part no. Sarcoidosis is still considered a rare disease in the grande scheme of things, and if anything it is underdiagnosed.

People whose doctors do arrive at this diagnosis generally go through a long and arduoous diagnostic process and often endure painful and intrusive tests and procedures including sometimes multiple biopsies in order to prove or disprove the existence of Sarcoidosis and its characteristic granulomas.

The diagnosis in not made lightly and short-term memory loss is taken into account along with a complex clinical and histological picture including an array of other accompanying symptoms. Other differential diagnoses must be ruled out and many patients are misdiagnosed with more common diseases before they receive a correct diagnosis of Sarcoidosis and begin receiving proper treatment. Often this is many years after the onset of symptoms.

Generally stress from having too much on one's mind does not put one out of work, make one bed-ridden nor cause severe respiratory problems, as well as other serious bodily malfunctions that are hallmarks of Sarcoidosis.

Further, the type of short-term memory loss and other neurological symptoms mentioned on this site are a bit more serious than slightly bothersome "whoops it slipped my mind" type of experiences that most healthy people experience now and then. If you read through the threads you will see it described as brain-fog, a very debilitating symptom that significantly interferes with daily functioning, and for many it can make it difficult to do things such as retain facts, follow through on necessary tasks, or comprehend and/or remember what people have told them two or three times before.

Just out of curiosity; have you been diagnosed with Sarcoidosis or are you making this inquiry on behalf of somebody else? Has somebody implied to you that Sarcoidosis is used as a catch-all for short-term memory loss? If a doctor is considering this diagnosis in your case or that of someone you know what has he/she told you? What symptoms have they asked you about other than short-term memory loss, and what tests have they run or proposed running? Is the doctor a GP or in what specialty? These are all important questions as different doctors have differing perspecives and may approach the diagnosis from different angles.

Let us know a little more about your situation so that we can help you get the answers you're looking for. We are an open group here and maybe there is some way we can help if we have more of an idea of what's happening.

Pippit
 
 Re: Memory Loss
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-11-04 01:46

Kirk,

The medical literature does document that memory disturbances, and even hallucinations and dementia can be part of sarcoidosis. Unfortunately, memory disturbances are generally documented in the literature only when there is evidence of sarcoidosis affecting the nervous system, such as MRI imaging. Before you get too alarmed, let me say that I believe we all have some degree of "neurosarcoidosis" even though it may not have advanced to the stage that the neural involvement is visible on imaging.

Keeping in mind that sarcoidosis is a systemic disease, we have researched why so many patients report overwhelming problems with memory, even without a diagnosis of neurosarcoidosis. Trevor's long-term research and his discovery of the role of Angiotensin II in sarcoidosis has shed light on the biochemistry (something not visible in imaging studies) at work in sarcoidosis (period) that affects memory. All we have to do is look at what the literature tells us about how angiotensin affects the brain. This abstract says (of the renin-angiotensin system, "Besides its classical role in the regulation of blood pressure and body-fluid homeostasis, it has more subtle functions involving complex mechanisms such as learning and memory," and, "in addition, most of the behavioural effects described so far are linked with AT1."

This is why Benicar, which blocks AT1, is so effective at correcting the "mental fog," confusion and impaired memory that accompanies sarcoidosis. Those of us on the Marshall Protocol have experienced the profound difference that Benicar makes in these symptoms. Having said all that, here are some abstracts documenting memory loss being associated with sarcoidosis:
Neurosarcoidosis: a personal perspective based on the study of 37 patients
Amnesic syndrome caused by neurosarcoidosis
Neurosarcoidosis without systemic sarcoidosis
Confusion, hypercalcemia and acute renal failure

Belinda
 
 Re: Memory Loss
Author: Gloria (---.proxy.aol.com)
Date:   03-20-04 19:52

Hello everyone,
this is the first time I've visited the site. I'm a singer and used to be a phlebotimist and E M T. and now because of sarcoidosis I'm no longer in the work force. I lost my site, the use of my legs and memory. I've gained my site back, I can walk and sing a little again Thank God, but the memory is so bad Iam ashamed most of the time that I have to ask street directions over and over again. and names are no better. and I can not spell anything any more so if something is wrong just forgive it please. and the only songs I sing are the ones I write cause they are the only ones I can remember the lyrics to. but like some of you I seem to do better when I'm on a higher dosage of prednisone and the fioricet for migraines and let me not forget soma for the intense muscle spasams but I'm still around when last year my family and doctors thought that I would not survive the last of my seven episodes
 
 Re: Memory Loss
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   03-20-04 20:03

Hi Gloria,

Welcome to SarcInfo. I'm sorry that you've been so ill. There are other patients here who can relate to your story and they are getting better. Healthcare workers have a higher incidence of sarcoidosis and you'll 'meet' many of them here.

It sounds like Prednisone has helped resolve some of your symptoms. I'm sure you know about its side effects, long-term consequences and that it doesn't cure sarcoidosis. There's a safer alternate treatment now and you can learn all about it on this website. One of the medications that we use, Benicar, is very effective for relieving migraines.

Ask us any questions that you can't find the answer to on this site.

And let us know how you get along,

Meg
 
 Re: Memory Loss
Author: Gloria (---.proxy.aol.com)
Date:   03-24-04 21:30

Hi Meg
thanks for the info on the Benicar I have an appointment with my doctor on the 14th of April I will discuss it with him. I'm blessed to have a good doctor that listen to me and we decide together whats best for me after all I'm the one thats plagued with all of this. and Meg the memory loss is so bad as well as the comprehension I have to call over and over again somtimes just to get a phone number from directory assistance. Im not a pity party person but today Im irratiable and angry so I keep away from everyone
 
 Re: Memory Loss
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-24-04 22:14

Gloria,

Welcome. I hope your doctor is receptive to helping you with Benicar at the appropriate dose. Many patients have felt its effects are life-changing. You can read some of the success stories from other patients on this thread.

Be sure to ask - if you have any questions.

Best wishes,
Belinda
 
 Re: Memory Loss ???
Author: Carol (---.fidnet.com)
Date:   05-14-04 16:35

51 yrs old, I have had sarcoidosis since 1977. I have gone through so much with this over the years, and my lungs seem to be settling down. But, now along with the memory loss, my left side was aching, and my physcian had an mri done. It came back abnormal. I am wondering what the possibilities of it being sarcoidosis are. I see the neurologist in June. I am so clumsy and often drop things, are these some of the symptoms of sarcoid in the brain?

Its so nice to have a place to write to..

Thank you
 
 Re: Memory Loss
Author: Meg (---.187.82.79.eau.wi.charter.com)
Date:   05-14-04 18:28

Hi Carol,

Welcome to SarcInfo. IMO, with your history, the chances of your new symptoms being caused by sarcoidosis are 100%.

Neurological symptoms may be due to inflammation in the brain or nerve tissue. But they can also be due to a high level of the hormone D which is produced by the granulomatous tissue anywhere in your body.

The good news it that no matter how long you've had this disease or what part of your body it has affected, you can put it into remission with the Marshall Protocol.

Reading the patient tutorials will provide you with the information you need. The Papers for Physicians will explain things for your doctor.

Let us know if you have any questions about this unique road to recovery.

Meg
 
 Re: Memory Loss
Author: Carol (---.fidnet.com)
Date:   05-19-04 17:05

Meg

Thank you for your information, however I realized that I forgot to mention the mri showed white spots on the brain.
I think they are going to check for muscular schlerosis...I am sorry I didnt add this the first time..still wondering, Im really worried about this..Thank you for your response.
I will look up the marshall protocol.
Carol
 
 Re: Memory Loss
Author: Meg (---.187.82.79.eau.wi.charter.com)
Date:   05-19-04 17:57

Carol,

If you were diagnosed with sarcoidosis in 1977 then you still have sarcoidosis. Your symptoms are telling you that. Multiple Sclerosis shares many symptoms with sarcoidosis. Here is a website with information on how MS is diagnosed.

Even if your doctor were to tell you that you had MS, it is a Th1 inflammatory disease as is sarcoidosis. So it should respond to the Marshall Protocol. It is not recommended to biopsy lesions in the brain so the diagnosis of sarcoidosis brain inflammation will have to be a presumptive one.

The D-tests and other inflammatory blood tests are important to tell your doctor how much systemic inflammation you have. Elevated inflammatory markers justify trialing the Marshall Protocol. Because of the Herxheimer reaction, you will know in a short time if you are on the right track.

Keep reading SarcInfo and encourage your doctor to call Trevor if he has any questions.

Meg
 
 Re: Memory Loss
Author: c (---.bos.east.verizon.net)
Date:   08-15-04 23:36

My dr is concerned I have sarcoid. I see a pulmonologist later this month.
Here is what happened:
Nov - Dec: I had a terrible persistent cough, saw Dr was prescribed an albuterol inhaler (the inhaler helped)
Dec - June: cough went away, I began to have trouble concentrating, I had no apetite and terrible fatigue (got home from work, went to bed and had trouble getting up in the morning) saw Dr again, blood work done (tested for mono, lyme -- all normal).
To fight my fatigue I started running (2.5 miles 2x a week-- I had to work up to this, it was really hard, now I do ~4 miles every 2 days).
The excercise improved my memory and brought back my apetite. I felt like a million bucks when i went for my yearly physical. Everything was completely normal, except my Dr asked for a chest Xray to look at a cyst. The Xray was abnormal and I had to go for CT scans that confirmed nodules in my lung. TB test was negative.
If this is consistent with sarcoid, does it make any sense that running has helped me so much, and I have no difficulty breathing?
 
 Re: Memory Loss
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-16-04 06:46

c,

Welcome to SarcInfo. Pulmonary function tests may reveal a decrease in function despite your perception that you have no difficulty breathting. Your symptoms and xrays tell the story.

A pulmonologist will likely want to do a biopsy to confirm the diagnosis and justify prescribing toxic steroids. If you arm yourself with information from this website, you can avoid that invasive prodecure.

I'm sure you know that you are ill. Sarcoidosis can now be safely put into remission (some call it a cure) so it is a good diagnosis.

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: Memory Loss
Author: c (---.bos.east.verizon.net)
Date:   08-17-04 13:51

You said:
A pulmonologist will likely want to do a biopsy to confirm the diagnosis and justify prescribing toxic steroids. If you arm yourself with information from this website, you can avoid that invasive prodecure.


I don't understand, Are you suggesting I do not need a biopsy?
 
 Re: Memory Loss
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-17-04 20:19

C,

Sarcoidosis is usually diagnosed by excluding *everything else* that might be the cause of the patient's symptoms, along with the patient's history, and the clinical and diagnostic findings. Parsing all this out can take months. Add to that the fact that symptoms of sarcoidosis wax and wane, and you can see that getting a correct diagnosis can be frustrating.

As Meg said, doctors like to get a biopsy of a specific type of granulomatous inflammation prior to diagnosing sarcoidosis. It is less invasive to get your vitamin D metabolites measured, and these tests will give an idea of your level of inflammation. You can read about the blood tests for vitamin D and hormone D in our patient tutorial here (click) on the blue text).

It's a good idea to read all the patient tutorials at the top left of this page. Then you can browse through the links at the bottom of this page. If you have a topic or term in mind you would like to know more about, it's probably been covered in our archives here. You can easily find any word by using the "search" feature at the top left of this page.

If you still have a question, just let us know. We hope you don't have this disease, but the symptoms you noted earlier are consistent with sarcoid.

Have you been running outdoors in the sunlight? That might explain any deterioration in your condition.

Belinda
 
 Re: Memory Loss
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-17-04 20:46

C,

If your doctor agrees, you can obtain a presumptive diagnosis of sarcoidosis based on your D-tests and clinical symptoms.

Your D-tests will likely reveal Th1 inflammation. This is grounds for a therapeutic probe with the Marshall Protocol meds. Your reactions to these meds and eventual resolution of symptoms will then confirm the diagnosis of sarcoidosis. This is called ex juvantibus- meaning that specific therapy worked so you therefore have the disease.

My neurologist would not treat without a biopsy which I declined, not wanting to damage any nerves. His treatment would have been the standard prednisone which I would have refused anyway.

My PCP gave me a presumed diagnosis of sarcoidosis without a biopsy and then ordered the MP meds. I reacted to them as expected and my recovery has been remarkable, leaving no doubt as to the diagnosis.

This is an option that is available to you but you will need to find a supportive doctor.

Good luck,

Meg
 
 Re: Memory Loss
Author: c (---.bos.east.verizon.net)
Date:   08-18-04 21:38

i have been running and I drive a convertible (I get lots of sun). Today I biked about 15 miles. I feel great. If it wasn't for the spots on my ct scan I wouldn't know I was sick at all.
I am going ahead with the biopsy for 3 reasons. 1 -- can't say definitively that it is not TB without a biopsy and 2 -- what if it is lymphoma (has the same symptoms, fatigue, loss of apetite, trouble concentrating, spots on ct). And 3 -- I have to confirm it is not tb or lymphoma for business reasons (i'm a vip of sorts, tb or cancer create much larger problems for me than just my health while sarcoid does not)

I am still awaiting ACE blood results and i have a candida fungus test on my arm (its pretty inflamed after one day).
I go to the Drs Friday to show her the fungus test on my arm, I will ask her about a vitamin D test.

thank you for all your help.
 
 Re: Memory Loss
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-18-04 22:03

c,

I understand your need to have a biopsy. I hope you will also have the D-tests done. Then you will be ready to start appropriate treatment if the biopsy shows sarcoidosis.

The possible reason that you feel well although you get lots of sun is that a high level of 1,25-D prevents the immune system from killing the bacteria that are causing the sarcoidosis inflammation. When no bacteria are being killed there are fewer symptoms, at least for awhile.

I hope that if you have sarcoidosis, you take it just as seriously as you would if you had cancer or TB. Sarcoidosis doesn't go away on its own and it silently damages major organs before symptoms become a problem.

We will be here for you if and when you need us.

Good luck,

Meg
 
 Re: Memory Loss ???
Author: abby (206.157.151.---)
Date:   09-09-04 18:19

dear , meg i am sorry if it look like i was shouting , i did not see capitol letter , i just need help , thank you , but i got no help and i am have a lot of problum with mermory lost also , abby ivysmith @tgtel.com

dear meg when you say rash is it like pinples , i have never had penples till i got the tumor . in my salava gland . and can you tell me see my tumor is not cancer but i am have so many healt problum like lost memory . head ach and anger out burts pain,
 
 Re: Memory Loss
Author: Lottie (---.proxy.aol.com)
Date:   09-09-04 19:59

Abby,

It is much easier for us if you will please just post on one thread. The moderators see all the posts, no matter where you post.

Meg is unavailable for a few days, and I responded to you on this thread Archive of General Sarc Questions to 9sep04. Please check that thread for responses.

*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: Memory Loss
Author: c (---.bos.east.verizon.net)
Date:   01-31-05 15:18

Sorry I havent written back. I was going through old bookmarks and I found the forum.
The diagnosis took about 8 weeks and came back negative for sarcoid. Dr said it was pneumonia / infection. I was put on a regimen of antibiotics. Follow up CT scan showed no growth only scar tissue. I have another CT scan in 6 months to make sure. Thanks for all your help.
 
 Re: Memory Loss
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-31-05 15:47

c,

It's good to hear from you again. It sounds like you are reporting on the results of your biopsy, right? I hope you don't have sarcoidosis!

One thing you will want to keep in mind is that biopsies obtained using a bronchoscope are not 100% reliable in ruling out sarcoidosis. There are some places for error, including whether enough tissue samples are gathered, and were the tissue is harvested. This article printed in Medscape covers a few of those possibilities. (You will need to register to read on Medscape, but registration is free.)

I am glad your doctor is going to monitor your status. Getting your serum vitamin D metabolites measured still sounds like a good thing to do. Please keep us informed.

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: Memory Loss
Author: Jamie (136.234.196.---)
Date:   02-01-05 12:58

Hi I am new here but I am having an awful time remembering i have been off pred for about 5 months now and I have pain all over my body headaches all the time and I had to go in and get some steriods for my nose because the inflamation was so bad that I could not breath through my nose. I am done with the steriods for my nose and I can breath again but my memory isn't worth a dang. I forget what I am doing while I am doing it. I think of something to do and when I get up to do it I have already forgotten what it was that I wanted to do. Please help me, anyone out there that has any ideas of how to stop this. I am only 26 years old and I feel as if I would be 60-70 not that I know what it is like to be that old but you get the idea right?
 
 Re: Memory Loss
Author: Ramzi70 (---.reverse.newskies.net)
Date:   02-02-05 01:10

Jamie,

When I read your post I remember the dilemma of my life. I also used to forget places, faces, and forget what I am going to say. I tried everything even medicine for bipolar disorder. Nothing worked like the MP. Now I understand a lot of things that I could not before.

My advice is to read and try to understand the patient tutorials of this site, do your D tests, and post your diagnosis on this site. There are a lot of people that can help you here.

Hope you get well

Ramzi
 
 Re: Memory Loss
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-02-05 06:44

Hi Jamie,

Welcome to SarcInfo. Ramzi gave you good advice. You might like to read our Success Stories thread to see how you can recover with the MP.

Let us know if you have any questions about 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.

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: Memory Loss
Author: Jeremy (---.misawa.af.mil)
Date:   07-24-05 21:58

Hello,

Over the past two months I have been experiencing paranoia and panic attacks. I've had to have business trips cancelled from my fear of flying and I stay at home when not at work because I rather not be around people. The doctors say that this is a side effect of the prednisone and prescribed me Risperidone (since they refuse to take me off the prednisone). Now I am having extreme short-term memory loss and deppression and I was wondering what could be causing this?

Thank you,

Jeremy

Dx-Pulmon. Sarcoid (stg II) Oct04. Init: Weight Loss(40lbs), Fatigue, Cough, and CP. Diag: X-ray/HRCT/Biopsy. Treat: Pred. Taper(Jan 05)40mgx2wks/30mgx2wks/25mgx2wks/15mgx6mos. Now off pred. Symptoms returned Dx-stg III (stable) Feb06. No treatment.
 
 Re: Memory Loss
Author: Lottie (---.proxy.aol.com)
Date:   07-25-05 03:00

Hi, Jeremy,

It’s good to hear from you, although, I am sorry that you’re having so many problems. Sounds as though they are going to continue to insist on merely treating symptoms, and not bother with understanding that you have a chronic infection that they are allowing to continue to cause you harm without proper intervention.

If you look take another look at the Hypervitaminosis-D Symptoms, you will notice that the following are included in the list…

Irritability
Mood or mental changes
Memory loss
Inability to concentrate
Dysphonia (difficulty speaking – not being able to “find the words”)

As long as you are “stuck” with the doctors you have, the only suggestions that I can give you that may help you in some way is to avoid vitamin D in food and supplements, to try to cover up as best you can when outside or in a room with a window, and protect your eyes from bright lights with NoIR sunglasses as much as possible.

You may want to try to approach them again with the information from this site and our sister site, Marshall Protocol.com

You may find something here that may help you.
SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

Keep in mind that you will only get worse with Prednisone. It is allowing the bacteria to continue to grow and multiply completely unchecked.

Please do keep in touch.

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: Memory Loss
Author: martin fennell (---.bas504.dsl.esat.net)
Date:   08-16-05 05:35

Well i don't know if you would class this as memory loss, but I play tennis, and often especially call other players the wrong name.
M
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This is an archive site, membership and posting are no longer allowed.

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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