Sarcoidosis Answers for Physicians, Nurses and Patients

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

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 The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

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

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

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

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

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


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 Useful Blood Tests for Sarc Patients
Author: pages2 (---.kc.rr.com)
Date:   05-09-02 08:27

Sarcoid buddies want to have more tests done. Please lets make a resource list so that we get the test that we thought we were after.

For instance I had a test done to check my vitamin D levels. The results are returned and I find out that this was not the test that I wanted to have.

Can we please make a list of possible tests and how to make sure that the test is done in the manner to get the test that we thought we were being tested for?

Another example is an ACE test From one source I have learned that one should be fasting. I was not when this test was done. There may be other variables to having an accurate ACE test as well.

SS
 
 Re: Accurate Testing for Sarcoidosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-09-02 08:52

Great idea. Let me start off with:

"Vitamin D is converted in the liver to 25-hydroxyvitamin D, which is then converted in the kidney to 1,25-dihydroxyvitamin D3, the active hormone"

Serum 25 hydroxyvitamin D - Shows the exogenous Vit D coming into the body. Sarc patients should keep this very low until the 1,25 dihydroxyvitamin D3 test result becomes 'low to normal'.

Serum 1,25 Dihdroxyvitamin D3 - Shows the active level of the Hormone that is the final active form of Vit D. This is also a measure of active sarc inflammation (a bit like ACE), as all macrophages (granuloma) secrete this hormone/cytokine

Serum Angiotensin Converting Enyme - when used along with the ACE genotype this is an indicator of active inflammation in sarc patients. A high value is almost always indicative of active inflammation. A low value cannot be called 'normal' unless the data is interpreted into the correct range for each ACE Genotype Allele.

Always ask your doctor to give you the raw data value, the units of measurement, and the range of values that the lab considers 'normal. Put them away in a file for safekeeping, you can use them to spot developing 'trends'.

..Trevor..
 
 Re: Accurate Testing for Sarcoidosis
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-26-02 16:28

Trevor,

Let me see if I understand this vitamin D issue...

What we know simply as "vitamin D" is complicated because there are different chemical forms of it in the body. The inactive form (I guess it can't be used yet?), serum 25 hydoxyvitamin D, is processed in the liver. This is converted by the kidney to the active form of vitamin D, called serum 1,25 Dihydroxyvitamin D3.

Suppose I go to my doctor and it is decided to investigate to see whether too much vitamin D is causing my problems. Should lab work be ordered to test for BOTH
serum 25 hydroxyvitamin D, the inactive form, AND
serum 1,25 dihydroxyvitamin D3, the active form?

If the answer is yes, why should both tests be done?

Belinda
 
 Re: Accurate Blood Tests for Sarcoidosis
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-26-02 16:52

Belinda,
1,25 Dihydroxyvitamin D3 is the important one that most doctors don't test for. Although this is called a 'vitamin' it is only called that because when it was originally discovered we had no idea of its effects on the body.

We now know it also has the multi-system effects of a hormone and is a seco-steroid. But these important functions have only been discovered in recent years. It has also just been discovered that it suppresses T-lymphocytes and thus directly inhibits the immune system. So that is why it is important.

You must also get the 25 Hydroxyvitamin D3 level checked as it is usually low in Sarc patients, who have to keep it low to reduce the symptoms that would otherwise be caused by 1,25 Dihydroxyvitamin D3 toxicity. Many doctors panic when they see a low level of this metabolite and want to give the patients Vit D Supplements. Under no circumstances should a Sarc patient be given Vit D Supplements (Calciferol or Cod Liver Oil). the levels of this metabolite are normally low.

IMO, 1,25 Dihydroxyvitamin D3 is also important because too much of it causes the symptoms of 'hypervitaminosis D', or even 'Vitamin D poisoning' in the body of a sarc patient. These symptoms I discuss elsewhere, and are the ones that so often plague our lifestyles.

Its presence is due to the sarc granuloma and even though high levels do not necessarily come directly from sunshine or food intake, it is still called a "vitamin" by the population at large.

Even when we can suppress the inflammatory macrophages back to a low level of activity, they can be re-stimulated if our bodies receive a bit of sunlight, or our eyes react to bright lights, or if we eat Vitamin D enriched food. As the 1,25 Dihydroxyvitamin D3 is formed it catalyses the hematopoetic stem cells to create more monocytes, macrophages and granuloma. Which is not good. Because then the cycle of uncontrolled inflammation can start again. It seems the body of a sarc patient has less control over this mechanism than it should have, and I believe that this steroid holds the secret to one of the genetic characteristic of sarcoidosis.

So.. get your 1,25 Dihydroxyvitamin D3 measured. Preferably when you are feeling really awful

(when you are feeling good its levels may be more normal)

It is not an expensive test, and can be run on blood which has been drawn for all the routine tests that doctors normally perform. Always ask your doctor to give you the raw data value, the units of measurement, and the range of values that the lab considers 'normal. Put them away in a file for safekeeping, you can use them to spot developing 'trends'.

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-26-02 19:17

Belinda,
Doctors usually perform tests for calcium levels, but the results do not seem to be indicative of the true hypercalcemic state of a sarcoid patient.

For example, even when sarc patients are having clear signs of clinical soft-tissue hypercalcemia such as calcemic kidney stones and visible calcification (spots) on their Xrays, they are usually not found to have higher levels of calcium in the blood or urine.

Nevertheless, I have assumed that all the usual tests that a doctor performs will still be done. IMO, an ACE Genotype test should be performed along with any use of ACE to track disease activity.

And for some unknown reason my serum folate values and mean corpuscular volume (MCV) have always seemed to be somewhat low, and never respond to folic acid or iron supplementation. Your mileage may vary...

It is essential that a full liver and kidney enzyme scan be done with every sarcoidosis patient, as these two organs often degenerate under the action of painkillers, pred, mtx, etc, if not watched carefully.

..Trevor..
 
 Re: Accurate Testing for Sarcoidosis
Author: steve garbarini (---.midmaine.com)
Date:   06-11-02 06:07

Dear Trevor:

This is a great site (better than the "bitching site" ) I got kicked off of. Great info thanks alot. Do you remember me you and I were attacked on I think the world sarc site.

Steve Grabarini D.C. Also would it be possible to elaborate more on the sun/heat connection to symptom exacerbation in sarc as this is a chief problem that i have.
 
 Re: Useful Blood Tests for Sarc Patients
Author: shelaghm (---.proxy.aol.com)
Date:   06-11-02 10:57

anybody out there tell me what an ESR blood test measures and what 'acceptable' results are - gp today told me that the last tests results were slightly raised, whatever that might mean ( i assume that the problem isn't serious, since i had the test done six weeks ago!!!)

thanks. keep smiling.
shelagh
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-11-02 11:07

Shelagh,
There is information on ESR at LabTestsOnline.org

Prior to asking about the significance of any lab data you must call your Doctor's nurse and find out the exact values that were measured from your serum, the lab's mean value and the range expected by the lab, and the units of measurement (eg grams per litre). Without this data there is no point trying to discuss the "acceptibility" of any lab result.

It is very important that sarc patients keep photocopies of lab work results. Having copies of your file empowers you to understand what is going on. This can also give you the courage to ask hard questions and seek second opinions.

Oh, and it is not safe to 'assume' anything in this case. 99.9% of the time a doctor will tell you that your results are OK so as to not cause alarm. Any time a doctor comments on something being "unusual" it usually means that it is time to pay close attention

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Debbie (---.64-79-86.bignet.net)
Date:   06-11-02 15:52

Shelagh,
An ESR blood test is a sedimentation rate. It is a non-specific test to measure inflammation in your body. It can be influenced by many things such as a cold. So, an elevated rate could simply mean you have a cold.

It was because of a continually elevated ESR that I found my sarcoid. When I first went to my rheumatologist he didn't really think I had any connective tissue disease but was very concerned that my ESR was elevated for a few months. He told me that mine should have been about 28 but it was running in the 50's and 60's. He told me I really should look into finding out why it had been elevated. He also said finding out why would be like looking for a needle in a haystack. He sent my GP a letter suggesting a complete physical. Well, I made the mistake of using my endocrinologist as a GP. Mine had retired and I really hadn't been sick. Anyway, the search began. I ended up going to about ten different specialists. If my endocrinologist would have simply sent me for a chest x-ray, this would have been discovered a lot sooner.
Several doctors told me not to be concerned about my ESR because I was healthy. It wasn't until at the advice of my rheumy (all other doctors didn't think it was necessary) that I went to an oncologist. He had several Ct's run. When I went back to discuss the results, he had referred me to a pulmonologist who referred me to a surgeon. Thus, I ended up having a thoracotomy and was diagnosed with sarcoid. At that time the sedrate was the only clue that something was really wrong. By the time I got to the pulmonologist, I was having other symptoms.

So, in short, an ESR shows inflammation in your body. It does not say where the inflammation is. I know age and weight are two things that are considered in what a normal ESR should be. On average, for adults, I belive the normal range could be anywhere between 20 and 30. Every lab is different and may use a different unit of measure as Trevor stated. Remember, something as little as a cold could cause an elevated ESR. It's usually when it's been elevated for a period of time that it gets investigated. Rheumatologist run this test frequently.

Debbie
 
 Re: Useful Blood Tests for Sarc Patients
Author: shelaghm (---.proxy.aol.com)
Date:   06-12-02 01:06

thank you so much for taking the time to answer my questions - great to know there's someone out there who is actually listening!

one small problem we have in england is that we are not actually encouraged to ask anything - and the idea of having copies of anything, be it test results, letters to gp or anything else is strictly not acceptable. i know that i should have the courage of my convictions and really push for the answers which i need, but the fact that we don't pay for medical treatment here in one way makes the situation more difficult - the attitude is that we don't pay so we don't have the right to ask.

going for the next blood test today, so hopefully will know within the next week what is going on. fingers crossed. and thanks again.

shelagh
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-12-02 01:54

Shelagh,
Doctors are much the same all over the world. None of them like to have their judgment questioned and very few are prepared to admit that they are uncertain or hesitant. I have worked with US, Canadian and Australian doctors, and know a little about the UK National Health.

I used the word EMPOWERMENT very deliberately. It is up to the patient to develop a relationship with their medical practitioner that will be satisfactory to each of the parties. It ain't easy. You gotta work at it...

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: shelaghm (---.ipt.aol.com)
Date:   06-15-02 13:31

hi trevor

thanks once again for your help; but where do i go now - got the results from my last esr blood result which, according to my gps nurse was once again 'slightly raised. probably due to some inflammation somewhere in my body' which we already knew - and the suggested 'next step' - another esr blood test in two weeks.

my eyesight is getting worse, i am experiencing numbness in hands and feet, ankles/legs are very swollen and painful - how long do they go on taking blood tests before some sensible course of action can be expected?

i have asked for referral to rheumatologist; am under the care of an ophthalmologist (though i am not due see him again until the end of july) - and am getting really desperate. gp seems unwilling to take any positive action - her response is clearly 'wait and see' - but i have had this thing for eight years - what else is there to wait for and how long do we wait for it?

HELP!!!! shelagh
 
 Re: Useful Blood Tests for Sarc Patients
Author: Caroline (---.win.org)
Date:   06-15-02 14:11

Hello Shelagh,
I know your question is to Trevor, so I hope you don't mind me butting in. I feel that we all share the same frustration with the medical community twittling their thumbs while we suffer. I wouldn't wish this disease on anyone but if only our docs could feel like we do occasionally maybe .......

I think your last sentance says so much. Why not say that to your doc? "I've had this eight years, how much longer would you wait if it were you or one of your family??"

I hope the best for you, Caroline
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-15-02 14:14

Shelagh,
This thread is called "Useful Blood Tests for Sarc Patients", and right near the top I list two tests that I regard as essential when trying to understand what is going on in sarcoidosis. One is the level of 25 hydroxyvitamin D in your serum, the other (and more important) is the level of the 1,25 Dihydroxyvitamin D3 that is being secreted from the inflammatory macrophages.

I don't recall ever saying that I though that esr was a useful diagnostic test. You told me that esr was the one your doctor chose. Now you say that the gps nurse says it is not useful. Please don't drag me into that discussion.

As I see it you have two choices
1. Assert yourself and tell your doctor to START DOING SOMETHING USEFUL to help you, or
2. Get a new doctor

We have all been through what you are going through, and at some point (long in the past) I realized that I alone would have to start making things happen the way I needed them to happen. I recall it was about the time some doctor told me I had 18months to live

I would like to reduce your suffering but without knowing the results of these two test, the actual numeric results, and the actual numeric results of esr and the other tests that were done, I would just be taking a wild guess. And I don't believe that would help anybody, in the long run.

Sincerely,
Trevor
 
 Re: Useful Blood Tests for Sarc Patients
Author: shelaghm (---.ipt.aol.com)
Date:   06-16-02 08:57


thanks trevor - i guess i really needed someone to tell me to get a grip - i wrote the last email when feeling really sorry for myself and when i just needed someone to blast off at - and you were it!!

i truly don't often feel sorry for myself, and believe me, if you knew me, you would know that usually i am more than normally self assertive; put it down to hormones/age/sarcoid!!!

i have made another appointment to see the gp and this time i will go in all guns blazing. watch this space!!!!!!!!!

regards (and apologies for being a wuss)

shelagh
 
 Re: Useful Blood Tests for Sarc Patients
Author: shelaghm (---.ipt.aol.com)
Date:   06-16-02 09:05



hi caroline

thanks for your response; as i said in my reply to trevor - i needed a short sharp kick in the pants to get me feeling in control again.

as they say, tomorrow is another day and tomorrow i see the gp again - and this time she had better do something more than a blood test or i'll know the reason why!!!

nice to know you're out there - thanks for your support. much needed and much appreciated

shelagh
 
 Re: Useful Blood Tests for Sarc Patients
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   07-26-02 11:11

Dear Trevor:
Hooray! I did finally get my physician to include the blood tests 1,25 and D3 levels......but if it is high....what then? I am on Tetracycline daily now....will this affect the results?
Caroline Mcg.
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-26-02 15:42

Caroline,
Its not just if you are high, patients are usually only really high when they are most ill, but the ratio of the two numbers can tell you whether or not you have the abnormal regulation of the hormone. Usually the 25 Hydroxyvitamin D is low to normal (<25ng/ml) and the 1,25 Dihydroxyvitamin D3 is normal to high (>29pg/ml)

The 1,25 Dihydroxyvitamin D3 surges concurrently with bad symptoms. The 25 Hydroxyvitamin D shows both the amount of Vit D stored in your fat reserves as well as the amount being received. It varies very slowly (over weeks). The 1,25 level changes by the hour in sarcoid patients, while it is tightly controlled within the normal range by non-sarcs.

Do not trust the lab's decision for low or high, get the raw data values.

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Bastiana (---.olympus.planet.nl)
Date:   02-03-03 08:53

Trevor,

Only now I experience that the 1,25 D test is not expensive! Why do they not regularly demand this test with sarc-patients then?

Then, also if the 1,25 D is recognised in it's steriod working and not being a vitamin, how do we explain that a elevated 1.25 D is not always connected to the principle of hypercalcemia?

Would it be an idea to ask our doctors to swallow some 1,25 D pills? What effect would this have on them? Do you know that?

Bastiana
 
 Re: Useful Blood Tests for Sarc Patients
Author: Steve (---.server.ntl.com)
Date:   02-03-03 12:41


Hi Everyone

Just had a letter back form Hospital stating " We are afraid we are not able to arrange the D ratio Test here in Scarborough " but they are prepared to do a blood test testing for liver function and if the results are fine I will be prescribed Minocin as requested. I am aware that it is advisable to have the D ratio test first to give everyone a point from which to start, but wondered if I could just get on with the minocin anyway and see what happens. I feel a little irresponsible by thinking this way but what have I got to lose.

Any info on this would be gratefully recieved.

thanks

Steve
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-03-03 12:51

Steve,
Knowing your D-ratio allows you to track treatment progress and anticipate herxheimer.

By all means start the therapy if Doc is OK with that, you will still be perfectly capable of tracking your progress as you navigate through the various antibiotics to slowly clear up each of the bug species you may have accumulated. Maybe Minocin alone will do it for you.

Please be careful about Herxheimer. There is a book, "The Road Back" by Dr Brown, that gives a whole lot of information about keeping the dose low and dealing with herxheimer. The book is designed for R.A. patients, but it may help you too. I have also jotted down a few guidelines in the "Things to remember about Minocin thread".

But remember it is only Doc who is licensed to let you go ahead - so "Carpe Diem" would seem to be the orders for the day...

..Trevor..
ps: congratulations...
 
 Re: Accurate Testing for Sarcoidosis
Author: Rick MacKinzie (---.SNVACAID.covad.net)
Date:   02-05-03 09:42

Hi Trevor,

I called my doctors office this morning and they said that my results where "Normal" so I had them fax me the reports supplied by Lab Corp in San Diego, Ca.

ACE - 122 - "HIGH" . . . (Norm 8-52 U/L)
Vitamin D 25 - 19.3 . . . (Norm 8.9-46.7 NG/ML)
Calicum - 9.4 . . . (Norm 8.4-10.2 MG/DL)

Also a 2nd test on Vit D, 1,25 DH - 47.9 - (Norm 15.9-55.6 PG/ML) with the comment - Reagents used in this assay are for investigational use only!
Which means ???

Which test is indicative of my situation? So, I left a message for my doctor to call me so that he can explain the above ( as he understands it).

My CT Scan w/ intravenous contrast conclusions where that there exists areas of thickening of the interlobular septa consistent with interstitial lung disease. No mass nor adenopathy. Other structures are quite normal. ???
I guess that means that I have an inflamation . . . Duh!

Your insite and recommendations are appreciated.

Rick
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-05-03 09:57

Rick,
Merck, the doctor's handbook (click here) says that 45 pg/ml is the upper limit of normal.

Your 1,25-D is high, and your D-Ratio is 2.5
You could definitely reduce your 25-D down to about 12ng/ml, or so, and that will reduce your 1,25-D and reduce your symptoms.

A D-Ratio of 2.5 indicates systemmic inflammation, and that is consistent with your ACE, which is VERY high.

However, the D-ratio indicates not a lot of inflammation, the ACE indicates a great amount. Probably indicates that your lungs are the primary organ involved, is my guess (it is only a guess).

Take a look at all that and at the interpretation of D data in the paper "New treatments emerge.." and let me know if you have any questions.

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Rick MacKinzie (---.SNVACAID.covad.net)
Date:   02-05-03 12:01

Hi Again Trevor . . .

I read the article and come away with . . . stay out of the sun light and away from Vitamin D . . . ?

I guess the specific question now is . . . Are Minocin and Benicar recommended in my case or will the above be enough to see results? Will the congestion and fatigue go away without them?

Sorry to be so confused . . .

Thanks again for your support,

Rick
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-05-03 12:10

Rick,
You are correct, the "New Treatments..." paper is focused upon Docs who just don't get it yet, and adding the bacterial pathogenesis would really confuse them.

The "Remission in Sarcoidosis" tutorial and paper deal with treatments. Although it is an older paper most of the stuff in it is still accurate. You have to add our increased understanding of herxheimers since then also our better understanding of the antibiotics which are effective.

Take a look at the thread "Things to remember about Minocin Therapy"

..trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-05-03 14:48

Rick,
I missed your question: Do I have to look at Minocin therapy, etc.

Your 1,25-D should be cut in half to get it to a level at which the fatigue would be minimized. You do that by cutting your D intake, reducing the 25-D level.

A D-Ratio of 2.5 is high, certainly high enough to warrant antibiotic treatment IMO. If Doc saw the interstitial lung disease diagnosis, you should have a chat with him about trialling the Minocin for 60 days or so.

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Denise Testa (---.connect.com.au)
Date:   02-05-03 15:58

This is the same with me Debbie - it was this that kept me insisting to Drs that something was most definitely wrong.

I knew the significance not only because I was a patient, I was also a lab technician myself and I read the ESRs everyday, and set them up myself on Saturday.

In addition, when I was doing the initial course and training for pathology, the woman who taught haemotology told us that the sed rate was often the first indication of a disease state. She also told us that it was a test that Doctors didn't take a lot of notice of.

However, with test results of raised ESRs going back for over two or three years I was able to argue for additional tests.

Try and get a copy of all tests. I got copies of tests I had done and could lay down the evidence when seeing new specialists.

Denise
 
 Re: Useful Blood Tests for Sarc Patients
Author: Denise Testa (---.uws.edu.au)
Date:   02-06-03 03:31

I guess if the NHS are paying then perhaps they may not allow you to have a copy.

My mum always said if you pay for the test you should be entitled to a copy of the result. If they won't give you a photocopy, then ask if you might write down any abnormal results.

I would also suggest you keep a result of things like CRP, Sed rate, calcium and ACE whether they are normal or not.

A doctor sees many patients in a day - all have different conditions ranging from the life-threatening to innocuous. Only you can know all about your condition - and you are entitled to.

Many patients have been victims of iatrogenic illness (doctor caused), in fact there are thousands of deaths and hospitalizations every year.

If patients were given more say in their care a lot could be avoided.

In Australia, one measure taken to prevent this is computerisation of prescriptions and results.

On this system the doctors don't have to think or ask as many questions.

All the drugs you take are in the computer so if the doctor tries to prescribe one which interacts with the other drugs they have to choose and alternative, the computer lets them know.

It is up to you to check whether medications interfere with others. You should ask how a new drug will interact with ones you are already taking.

In my quest to lose weight, before starting on the current regime I am on, I was going to try a very expensive diet pill, lucky for me it interacted with a current drug I was taking and I decided diet was the better course of action

Be Alert and speak up, if you get a "no" be assertive. You are playing with your health and your life.

Denise
 
 Re: Useful Blood Tests for Sarc Patients
Author: Steve (---.server.ntl.com)
Date:   02-20-03 01:26


Hi Everyone

Having taken Minocin 50gm twice a day (the non capsulated variety) for the past 10 days I'm a little surprised that "nothing's happening" I am not feeling any better or worse and certainly am not suffering with side effects through taking the tablets or the proposed Herxheimer. Is it possible the dosage is not high enough? or the minocin is not the right type of drug for me? or am I being simple too impatient?

I've read most of the threads relating to the dosage issue and it's varying levels of success with different people, my doctor suggested 50mg x2 first to see if anything happens for the first month or so, I don't think my doctor knows very much about why I'm actually taking them and is purely acting on instructions from the hospital specialist.

thanks for any info on this subject.

cheers

Steve
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-20-03 01:37

Steve,
Print out the "Minocin Dosing Issues" tutorial at the top right of this page for Doc.

Please remember that unless you have your Vitamin D intake well under control, and your level of 25-D well under 20 ng/ml, that the antibiotic will have difficulty penetrating the inflamed tissues. What was your most recent level of 25-D?

You will eventually have to ramp up to 200mg qod to get full tissue penetration, but control of your 25-D seems to be a critical factor. Too much 25-D means too much 1,25-D is generated in the inflammation, and the generated Cytokines block the action of the antibiotics.

..trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Steve (---.cvx1-b.man.dial.ntli.net)
Date:   02-20-03 16:01


Thanks Trevor,

I'm printing out the relevant document for my next doctors visit, which clearly states the need for the Vitamin D blood test, for reasons unknown to me the hospital was unable to do, therefore I am taking the minocin blindfold but yet with there approval. I am hoping I can pursued another hospital or specialist to do the relevant tests but so far heard nothing. Meanwhile I have kept out of the sunlight as much as possible and avoided all foods containing Vit D for the past 6 weeks or so and as I think you are suggesting without knowing the figures I don't know how high my levels are to start with and what excesses are still floating around in my body.

Would it be foolish to raise the doseage to 100mg x 2 per day to see what happens, as it could be months before I ever get the blood tests done and even then from what I've heard in the UK you can expect to wait months for the results too unless you know the right people.

Thanks for your time.

Steve
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-20-03 16:23

Steve,
A patient in the USA typically goes home with a prescription for Minocycline 100mg to be taken every 12 hours. That is the usual dosage, so you would not be exceeding the 200mg daily (as explained in the dosing tutorial). I don't know what doc suggested for you, however, and I don't want to bring down the wrath of the medical profession upon SarcInfo by suggesting you change any dosage without your Doctor's advice

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Di (---.in-addr.btopenworld.com)
Date:   02-25-03 07:34

Trevor,

I took your advice and asked my doctor to perscribe Minocycline last year. I started taking it in September and am still doing so. I had some more tests recently (excluding VitD which I still can't get done). Everything was 'normal', according to my GP, the only change was the ESR rate had dropped to 27 from the 50s. I pointed out that this was since I had been taking the minocycline - the doctor just smiled and said, 'maybe', and later, 'stay on the Minocin'.
Although there is no change to my chest xray or peak flow rate I do feel better. I hope my next set of tests bring even better news.

Di
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-25-03 08:03

Di,
Although it might sound depressing, your doctor is probably feeling he is doing a good job as long as your X-rays and PFTs are not going downhill. So that is why he was happy, I think. Especially as the blood work was "normal".

I found that my FEV1 jumped about 25% after the Minocin kicked in, and also that my FET has been steadily improving.

You might take a look at the new Minocin dosing issues tutorial (upper right) and see if Doc is interested in your trying a couple of doses of 200mg qod, to see if that more effectively penetrates to all of the tissues.

Anyway, good to hear from you again, and glad to hear that things are looking up.

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Di (---.in-addr.btopenworld.com)
Date:   02-27-03 05:58

Trevor,

I have just been reading through some of the other new threads and postings and now understand several things that had been worrying/puzzling me.

I forgot to mention that my ACE levels haven't changed and, although the GP did say that the liver tests were OK, I have not been able to convince him about the calcium problem or the Vitamin D link or got him to do these tests. I haven't been back to the 'specialist' since we had our last run-in.

I also realise that I have had a couple of Herx. reactions that alarmed me at the time. I have suffered from 'positional vertigo' off and on for years and it has recently returned. Do you think this is anything to do the minocin/herx./sarc., or is it coincidental?

Di
 
 Re: Useful Blood Tests for Sarc Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-27-03 11:39

Di,

Since Trevor hasn't answered, do you mind if I take a crack at your questions? Every herxhiemer symptom I have experienced has been something I am already familiar with as a result of sarcoidosis. Therefore, it seems logical to consider any familiar sarcoid symptom that returns and intensifies within a few hours of dosing with the antibiotic as a herxheimer. I've had symptoms that I haven't seen for months pop up after dosing with Minocin. Little sounds when breathing, for example.

The good news is that I don't still have all the symptoms I used to have, and the herxheimer response is, for me, anyway, a return of only one or two symptoms at a time, within hours of dosing with antibiotic. These subsided within a few days, bringing me to a new level of wellness.

When I was taking Minocin alone, I had an intermittent problem with dizziness when I changed positions. That stopped once I added the ARBs, so perhaps you can eventually get on the ARBs. Not everyone can get ARBs, though, and I sympathize with that. It's a good idea to keep a watch on your blood pressure, especially when you have these spells, even if you are not taking ARBs. I found that my blood pressure was dropping low on the Minocin off-dosing days, so I would drink a small can of V-8 juice (it's high in sodium) to pick me up. I'm sure that won't work for everyone, but it helped me. That was when I was using Minocin without ARBs.

Did I understand that your doctor is not convinced that vitamin D is a problem with sarcoidodis patients in general? Here are some links to research papers you might consider sharing with your doctor.

Evidence for abnormal regulation of circulating 1 alpha,25-dihydroxyvitamin D in patients with sarcoidosis and normal calcium metabolism

Isolation and structural identification of 1,25-dihydroxyvitamin D3 produced by cultured alveolar macrophages in sarcoidosis

Biochemical indicators of disordered vitamin D and calcium homeostasis in sarcoidosis

Calcium metabolism in sarcoidosis: A follow-up study with respect to parathyroid hormone and vitamin D metabolites

Vitamin D metabolite-mediated hypercalcemia

Acute kidney failure in a recurrence of sarcoidosis at the height of summer

Clinical impact of bone and calcium changes in sarcoidosis

Belinda
 
 Re: Useful Blood Tests for Sarc Patients
Author: Steve (---.server.ntl.com)
Date:   02-27-03 16:20

Hi Everyone

In previous posts I have mentioned I'm not having much luck getting anyone to arrange the D Ratio test I have even written to my specialist in the hope he can arrange to have it done elsewhere. However I was able to convince my dermatologist & GP to let me try a course of Minocin. (This was 3 weeks ago) I am taking no other drugs at present (and never have had) and wondered if anyone else had experienced a "no response" from the Minocin. I started on 50mg tablets twice a day which I thought was too low so a week later decided to increase it to 100mg twice a day, after a whole week on the increased dose I still feel no better nor worse, no Herx etc. Could it be these tablets are no good for me or with some people could it be a little longer before they "kick in"? The big plus for me would be the fatigue element of Sarcoidosis going away. As I use my energy levels as an indicator as to how I am doing I feel I am showing no signs of improvement. I am keeping out of the Sun and keeping a good control of my diet too. Sorry If I seem to have asked a similar question before but without any doctors to back me up I feel like I'm experimenting on my own.

Thanks again for all the helpful tips and information I have passed most of it on to my GP and will continue to do so in the hope that they will take the matter more seriously.
 
 Re: Useful Blood Tests for Sarc Patients
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-27-03 17:16

Steve,

Please read Trevor's new physician tutorial Minocycline Dosing Issues at the top of this page on the right.

Increasing the dosage to a bolus of 200mg seems to help the concentrations in certain tissues reach a threshold level; the level of susceptibility for eliminating the microbes there. Take the capsules with hot herbal tea to speed their absorption into your system.

You might also try increasing your body temperature a few hours after you take the Minocin with a soak in a hottub or a hot bath. This improves your circulation and tissue perfusion.

As the microbes are killed more inflamed tissues will develop because your immune system reacts to the endoxins of the dead microbes. Give those tissues 24 hrs to calm down before you take the next dose. A new layer of microbes will have been revealed that are susceptible to the next attack.

If your 1,25-D is not real high you may not feel a Herxheimer reaction. This doesn't mean that the antibiotic isn't working.

Benicar is an essential component of Trevor's protocol. It's chief advantage is in interrupting the inflammatory cycle to reduce the inflamed tissues so the Minocin can reach the hidden bugs. Benicar normalizes your D-levels and without that the antibiotics may not work.

Antibiotic therapy seems to work best when it is applied in these specific ways. Please try as many of these measures as you can and let us know what happens.

Meg

PS Also keep working on Doc to get those D-levels done so you can evaluate the effectiveness of therapy.
 
 Re: Useful Blood Tests for Sarc Patients
Author: Steve (---.server.ntl.com)
Date:   02-27-03 17:33

Meg

Thanks for the info I've read the Minocyline dosing issues tutorial several times already but was still unsure about what level per day I should take. I'm going to try the alternate day method now along with the hot tubs etc and see if that gets things going.
Meanwhile I'm not sure how to approach my GP about asking for Benicar as the last time I visited her she didn't seem to know why I wanted the Minocin in the first place, it was only due to the Dermatologist writing to her that allowed me to take that.
Maybe once I've found someone that will do the D Ratio test other things might follow, it just seems at present that nobody involved in the NHS wants to get on with anything as to them I don't seem that bad.

thanks again for your help

Steve
 
 Re: Useful Blood Tests for Sarc Patients
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-27-03 18:38

Steve,

Your words "I don't seem that bad" ring true for a lot of us. We look okay, especially if our chest xray is normal or not too bad and the usual blood work comes back within normal limits. But we know that we don't feel okay.

When I asked my doctor for the blood tests I just appealed to her sense of compassion by telling her how awful I felt. I was only asking for a simple venipuncture, a blood draw, a couple test tubes of blood to be taken and analyzed. If she thought that was foolish, so be it. I was ready to pay for it myself.

I think the problem here is they just don't understand why it's needed, how the results would be interpreted or what the results would mean for treatment. It starts them down an unfamiliar path. If you can just convince her to take that first step. Use any argument you think will work. Beg, insist, bargain-it doesn't matter. Just persist and maybe she'll order it just to show you it's worthless and shut you up.

This is a tough thing for some of us shy folks to do but think about your health and screw up your courage. The squeaky wheel gets the grease!

Good luck,

Meg
 
 Re: Useful Blood Tests for Sarc Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-27-03 21:14

Steve,

I think Meg is correct. Doctors like to stay on the road everyone else travels, so to speak. They don't want to be accused of needlessly ordering tests that are not useful, especially if insurance is involved. The patient has a responsibility to be clear about their level of discomfort, their symptoms, and their concerns. These are things the doctor uses to justify a decision to do any test.

Now, if, in addition to these, the patient is so concerned, they are willing to fork over their own money to have a test done... well there might be a reason to go ahead. Hypochondriacs and people seeking undue attention don't usually exhibit that sort of motivation, and that's something doctors are looking out for.

Belinda
 
 Re: Useful Blood Tests for Sarc Patients
Author: Steve (---.cvx1-b.man.dial.ntli.net)
Date:   02-28-03 01:43

Meg & Belinda

Thanks again for your time, I realise the importance of the Blood Tests but due to the time which is passing that very little is happening as far as the UK Medical people are concerned I am doing my experimenting largely down to everything I have learned from Sarcinfo, which I am very greatful for. I know I must get this blood test done but finding someone that knows what to do and can do it even with a copy of the tutorial is largely the problem I am facing. Meanwhile I hope that a little "dabbling with the Minocin will maybe see some improvements in my general health. I'll try to get my GP to prescribe me the Benicar but on what grounds I do not know.

The dictionary definition of Sarcoidosis always seems to imply that a sufferer can continue to enjoy a normal life and it most case the desease will burn out and go away forever. I find this unbelievable as that's the first thing anyone reads when doing their first bit of research. As each day starts for the past 2 years or so I've just wanted to sleep as I have no energy mentally or physically and I know that is not normal I have many other symptoms too but I don't want to go over old ground. I just know the life I lead at present is far from normal and while ever the general description of the desease says what it does nobody will take it seriously.

Thanks again your help is worth a lot to me.

Steve

ps. I will for the forseable future start with with my hot tubs and alternate day minocin in the hope things improve, while my doctors concentrate on mending a few more broken arms & legs.
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-28-03 03:27

Steve,
As my pathology tutorial explains, there are different species of microbes that have developed this CWD resistant form. It is possible that you are not responding to Minocycline, although, as Meg and Belinda said, the most usual reason is that your D metabolites are still not under control, the tissues cannot quench the 1,25-D and are thus continuing to provide a protected living environment for the microbes.

There is another older antibiotic: Sulfa/Trimeth, In this country called Bactrim DS and Septra DS, which does attack the CWD microbes. I have found it most effective with a single DS tablet (DS=double strength) taken 2 hours behind the 200mg Minocycline every 2 or 3 days. With a powerful 'cocktail' like this you may need to increase the interval between doses to make sure the tissues (and you) have time to recover.

Even though that 'cocktail' dosing may sound extreme, the average dosage is still half what is normally prescribed to folks to treat blood-based infections. Be careful with it, though, as the herx can really knock out us poor sarcs... (and fix us up nicely, too ). Bactrim DS is the antibiotic that I credit with helping return my eyes and ears to normal. As Cunha's paper says, it is known for very good penetration into the ears and eyes.

A third antibiotic, Clarithromycin, also has some limited effect on CWD microbes. It should be reserved for use only in unusual situations, IMO. Print out Cunha's tutorial and have a chat with Doc. I am sure he/she will be more comfortable knowing that these resistant CWD bacteria can be handled with such innocuous (at least for Doc, innocuous) drugs.

..Trevor..
 
 Re: Useful Blood Tests for Sarc Patients
Author: Margo (---.adsl.duke.edu)
Date:   03-02-03 15:39

Belinda,
Thanks for your post, above (2-27) where you list articles about the connection between sarcoid and vitamin D. I am copying the list to a site focused on uveitis and ocular inflammatory disease, (www.http://pub24.ezboard.com/fuveitissupportmeeifrm5.showAddReplyScreenFromWeb?topicID=1552.topic&index=11)
where I often encounter people with sarcoid-related uveitis. I am hoping that those with sarcoidosis and uveitis will, at least, modify their diets and sun exposure. I will also refer people here, as I have done many times in the past.
I found the article "Clinical impact of bone and calcium metabolism changes in sarcoidosis" very helpful in answering some questions raised by my daughter's recent 24-hour calciuria test. Fortuitously, she has been following the recommendations in the article for years, and her levels of calcium were very low. "Hypercalcaemia, hypercalciuria and calcaemic nephropathy may be prevented by a low calcium diet, adequate hydration, and minimisation of exposure to light. Milk, cheese, calcium-containing antacids, and vitamin D should be avoided."
We think she will be able to begin ARB therapy this week, and antibiotics soon after!!

Margo
 
 Re: Useful Blood Tests for Sarc Patients
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-02-03 18:37

Margo,

That is marvelous news about your daughter. Your diligence and persistence should be an inspiration to everyone. We'll be anxiously waiting to see how she gets along.

Thanks for posting Belinda's quality information on the other site and for referring people to sarcinfo. Some folks have a hard time finding us.

Take good care of that precious girl,

Meg
 
 Re: Useful Blood Tests for Sarc Patients
Author: Denise Testa (---.connect.com.au)
Date:   03-04-03 17:11

Dear Panel,

I saw my immunologist today. I didn't tell him I was on Minomycin (Minocin to you guys, I know) because I know he would not agree with it.

I have not noticed any change in my condition. If anything I am a little worse but I don't think there is any reaction.

I am getting achilles tendonitis and the same on the left side of the groin. I have had recurrent sinusitis since October last year. A CT scan shows some swelling but nothing remarkeable. I also have lower back pain, and x-ray showed degeneration and lipping - age I suppose.
I also currently have an itchy scaley rash which everyone seems to think is simple eczema. I have had to remove a ring to another finger as underneath it also got red and scaley so now I have a red, scaley ring mark.
I also have what appears to be a fungal nail infection which started while on a three week course of prednisone back in December.

Blood tests were basically normal. Inflammatory markers all within normal limits. Would this be due to the prednisone which I have not had any of for two months - can this still have a suppressive effect. The only really remarkable results were immunoglobulins, which are also suppressed. Doc thinks it may be the pred, or that it could also be the sarc. I don't need to see him for another three months, but he said he will repeat it then and if there is no change, or a decrease he will have to think of gamma globulin injections.

He has also given me bactrim. What I need to know, because I could not ask him, is whether I should stop the minocin while taking the bactrim, or take both at the same time as usual. Bactrim is twice a day. Minocin is as per the regime recommended on this forum.

I would appreciate any feed back on this. I will hold back getting the script until I hear from a knowledgable someone. I know bactrim is also an antibiotic of choice for bacteria minus cell walls

Denise
 
 Re: Useful Blood Tests for Sarc Patients
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-04-03 18:44

Hi Denise,

I know you've been taking minocycline for awhile. Are you taking 200mg every other day? This bolus really seems to raise the tissue threshold of the medication. There is more info about this in Trevor's new tutorial Minocycline Dosing Issues. (at the top of this page)

You said your condition seems to be about the same and if anything a little worse. Are you sure the pains and rash are not due to Herxheimer?

It's okay to take the Bactrim with the minocycline. Trevor has this to say about it "Your doc will probably prescribe your Bactrim DS (double strength) at one every 12 hours. Whether it is taken in addition to or complementary with your Minocin is part of the creative process that is necessary for each individual to get best results. Initially, I kept periods on each antibiotic separate, so that I could figure out which was doing what, but they seem to be more effective working together. Doc might agree to Bactrim on even days and Minocin on odd days, for example."

"I have found it most effective with a single DS tablet taken 2 hrs behind the 200mg minocycline every 2-3 days. With a powrful 'cocktail' like this you may need to increase the interval between doses to make sure the tissues (and you) have time to recover. Even though that cocktail dose may seem extreme, the average dosage is still half what is normally prescribed to folks to treat blood-related infections. Be careful with it, though, as the herx can really knock out us poor sarcs.. (and fix us up nicely, too)"

I've done some research on immunoglobins because I have a monoclonal gammapathy. I found that elevated immunoglobins are common in inflammatory diseases and that includes sarcoidosis. So I would think your suppressed immunoglobin activity is more likely to be due to steroid therapy, but I'm just guessing.

It's not unusual for inflammatory markers such as sed rate and C-RP to be normal in sarcoidosis because these tests do not measure CWD microbe activity within tissues. Even calcium and ACE are normal in many sarcoidosis patients. Have you had your D-metabolites rechecked recently?

I hope that you get some results from Trevor's antibiotic 'cocktail'. Please let us know how it works.

Meg
PS. That fungal nail infection may be a result of antibiotic therapy and it is, unfortunately, notoriously difficult to resolve but is something many people just live with.
 
 Re: Useful Blood Tests for Sarc Patients
Author: Di (---.in-addr.btopenworld.com)
Date:   03-07-03 06:33

Belinda,

Thank you for the links, I will print these papers up and show them to the GP. The specialist I disliked did know about and accept the connections between calcium and sarc, but dismissed the VitD link with the comment that the UK didn't get enough sunshine to trigger such a reaction (certainly true today).
I have had the vertigo for years, much longer than any sarc. symptoms, but I will try the V8 next time it happens. The herxheimer reaction I have noticed tends to happen on the off days late in the evening when my chest tightens up and I feel as though I might stop breathing if I didn't concentrate on doing so - panic attack of course. I also feel more tired on the off days.
 
 Re: Useful Blood Tests for Sarc Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-07-03 09:26

Di,

You are welcome for the links. Are you taking angiotensin receptor blockers? They help keep me from suffering as much as I used to from the chest pain and throat tightness from surges in 1,25-D levels. I am sure you know your symptoms better than anyone; just be sure that what feels like a panic attack isn't actually some temporary throat tightening that might restrict your oxygen too much.

Belinda
 
 Re: Useful Blood Tests for Sarc Patients
Author: Di (---.in-addr.btopenworld.com)
Date:   03-11-03 03:43

Belinda,

At present ARBs are not a NHS registered treatment, although my GP is quite open to trying such things and might give me a prescription, particularly if this is a genuine symptom, it's hard to sure in my case as I am prone to anxiety and panic. Actually, I haven't had that particular problem for the last few days, I'm just more weary than usual. I did enquire about ARBs last year and was told that it was likely the NHS would approve them. I haven't checked again since to see if they have, but these things tend to be slow. I can't afford private medical treatment and my health insurance was a casualty of divorce.

Di
 
 Re: Useful Blood Tests for Sarc Patients
Author: Steve (---.server.ntl.com)
Date:   03-31-03 00:51

Hi Everyone

Having still had no luck persuading my docs to do the Vit D ratio blood test
I have gone back to my ordinary GP and pressurised her into changing my prescription of Minocin. I am now on a capsulated 100mg modified release version made by the company Lederle Labs and the suggested dosage is once a day. I have changed this to twice every alternate day and so far have only noticed seriously increased fatigue and a continous hourse voice
I am under the impression that things get worse before they get better so therefore I am not too worried at present. What I am concerned about is the "modified release" version of these capsules and whether taking 2 every alternate day will have little or no effect.

Also I have asked my GP about the Bactrim etc as a supplement but this was met with uncertainty as to why I would want it. I don't like to take this route but does anyone know how I can buy this medication and what it's costs maybe.

thanks

Steve
 
 Re: Useful Blood Tests for Sarc Patients
Author: SteveUK (---.server.ntl.com)
Date:   05-27-03 03:43

Hi Everyone

I've now been on alternate day minocycline 200mg per day for a full 3 months. I've not seen any improvements and am aware that I may feel worse before I feel better, and if so that is a good sign. I wondered if severe stiffness in ankles, knees, wrists could be expected during the flushing out period as I am suffering from all of these at present along with excessive sweating and spots on my face which I haven't had for over 20 years. If this is expected thats good but I am mainly concerned about the stiffness in the joints which could be something else.

Any advise would be appreciated

cheers

Steve

ps. my GP has told me my new ailments are most definately part of my sarcoidosis. funny that suddenly he's an expert.
 
 Re: Useful Blood Tests for Sarc Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-27-03 06:23

SteveUk,
Your experience with minocycline is really not that much different from many folks who (in past years) took it and decided that antibiotics had not helped their sarcoidosis.

In fact, you are describing a slight herxheimer (a worsening of symptoms). This is the reason for the ARBs that the rest of us are taking - Benicar not only suppresses the herxheimer and apparent disease exacerbation, but also improves the patient's overall well-being and attenuates the harmful effects of 1,25-D and Angiotensin II on the body.

If Doc is happy that the new aliments are part of your Sarcodiosis, is he prepared to prescribe you Avapro yet? Unfortunately, neither Benicar (nor the European Olmetec) are available in the UK yet. Avapro and Diovan are available, however, and both will help relieve your suffering. But you have to get it every 8 hours...

As for assessing progress from the minocycline therapy, you would need to stop taking it in order to 'feel better'. While the antibiotic is killing bugs it increases the level of both harmful hormones in your body, temporarily exacerbating your disease.

Finally, your fortitude amazes me. I don't think I would have had the will-power to go through what you have gone through. Talk to Doc about the ARBs.

..Trevor..
ps: show Doc Dr Evelin Lindner's endorsement of ARBs at URL http://clinmed.netprints.org/cgi/eletters/2003010001v1 Her bio is at http://www.joimr.org/phorum/advisory.htm
Maybe he will listen to a European MD, Dr med, Dr Psychol....
 
 Re: Useful Blood Tests for Sarc Patients
Author: Judy, Idaho (---.coldreams.com)
Date:   05-28-03 09:19

SteveUk,
I understand the joint problem as I also suffered from that.Here is the great thing as you notice I said that in the past ,after several months I am so much better and still not even close.I also had different symptoms that I hadn't had after starting on the antibiotics, sore feet was a big one and Meg was great in helping me understand about that.The great thing about this site is we are able to share our symptoms and help each other with that.I have learned that each person responses different to the treatment(as you read the threads)so hang in there all of a sudden you'll be thinking"Humm, I don't hear the ringing in my ear anymore or gee my eyes are clear"as we all have dealt with the problems of sarc for so long we have forgotten what it's like to be symptom free!
Good health and hang in there,
Judy
 
 Re: Useful Blood Tests for Sarc Patients
Author: SteveUK (---.cvx1-b.man.dial.ntli.net)
Date:   05-29-03 04:26

Trevor & Judy

thanks for the input there are many other syptoms that I hadn't mentioned
but I think nearly everyone is aware of them. I realise now I should have pressed my GP further for the ARB's but due to their dismissal of any research that came from outside the UK I seemed to be wasting my time asking. I'll try again as I have nothing to lose.

Thanks again

Steve
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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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