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 The material here provides useful background, but much of it is now out-of-date.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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 ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.gtecablemodem.com)
Date:   03-11-02 10:38

Belinda said "ACE levels tested normal". Hmm.. this is a inexact statement, Belinda.

I have found that sarc patients are very rarely told they have elevated ACE, even when it is right at the high end of the 'normal' range. This is a problem.

But often a 'false negative' ACE test result occurs because the value is not being interpreted properly..

Also, many Doctors forget that when they give Prednisone (or steroid inhalers) to a Sarc patient that this drug suppresses the ACE level and can make it meaningless.

Anyway, here are the Nuts and Bolts of it all:
There are three alleles (genetic mutations) of the gene that causes the "normal" range for ACE to be different in different individuals. Some Doctors don't fully appreciate this, and rarely do the test for the correct percentile range to place you in. Without this special genetic test, the range of "normal" for ACE covers a huge span, and care has to be used in interpreting results.

If you are in the 30% of people that have the DD genotype your normal ACE value is 59.8 U/L (range is 31.8 - 87.8)
If you are in the 50% of people that have the DI genotype your normal ACE value is 47.7 U/L (range is 18.6 - 76.8)
If you are in the 20% of people that have the II genotype your normal ACE value is 32.2 U/L (range is 13.7 - 50.7)

So that if your doctor tells you that you have an ACE level of 48 U/l, and it is 'below normal', he/she would be dead wrong if you belonged to that 20% of the population who have the II genotype. In fact, your 48 U/l would be actually be well above the normal II mean of 32.2
But Doc would be dead right if you had the the DD genetic allele.

In summary, a high ACE, above 87.8, is out of range whatever your genes, while a level below that must be looked at more carefully before making a decision.

Here are some references for you to print and discuss with your doctor(s):

"Corrected normal values for serum ACE by genotyping the deletion-/insertion-polymorphism of the ACE gene"

"Influence of ACE genotype on interpretation of diagnostic tests for serum ACE activity"

"The ACE DD gene is associated with poor prognosis in Finnish sarcoidosis patients"

"Deletion polymorphism of the ACE gene associates with increased risk for heart diseases"

"ACE gene polymorphism in sarcoidosis in relation to autoimmune diseases"

"Angiotensin-converting enzyme (ACE) gene polymorphisms and familial occurrence of sarcoidosis"

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'.

Although this may look very complex, when you correlate your ACE interpretation with the values from the D-metabolite tests, a much better estimation of sarcoid status can be obtained.

..Trevor..
 
 Re: ACE measurements ain't so simple...
Author: Becky (---.tampabay.rr.com)
Date:   03-11-02 17:50

Right on Trevor...ACE levels have never been indicators for me even when I know my sarcoid has been in full swing. I have been at the upper end of normal a couple of times and felt terrible. My physician's response: "the sarcoid can't be active b/c your ace level is normal". Much later on, I discovered I had an abnormal (high) c-reactive protein level. C-reactive protein levels are a better indicator of inflammation at a more basic cellular level and will be increased when the ace and sed levels are not. Seems we have to constantly do our homework to get the best care...
 
 Re: ACE measurements ain't so simple...
Author: Admin (---.gtecablemodem.com)
Date:   03-14-02 18:41

Oops, sorry, let me try to cut through the medical jargon.

There is a gene that has been identified in human DNA which affects the way that our bodies react to Angiotensin Converting Enzyme (ACE). This gene can take three forms, classified by the initials II, ID and DD.

About 27% of a normal population have the DD form of this gene, 49% have the ID form, and 24% have the II form (called a 'genotype')

Since the early 70's doctors have known that many Sarcoidosis patients have elevated ACE levels. But they have also known that many of them do not. An additional puzzle was the huge range of values that serum ACE could take. It was often hard for a doctor, or a lab, to interpret whether the ACE value they were measuring was low or high, and consequently most patients were just told their ACE was 'normal'.

Since the ACE gene was discovered we have found that the range of 'normal' ACE varies depending on the ACE genotype we have.

Those with the II genotype have a lower 'normal' range than those with the ID genotype. Those with the DD genotype have the highest 'normal' serum ACE range of all.

So in order to interpret whether you have a "normal" serum ACE or not it is important for the lab to have measured your ACE genotype. Otherwise they do not know the exact 'normal' range you are supposed to fit into.

When the genotype is taken into account there is a greater correlation between patients with Sarcoidosis (and other immune disorders) and a 'high' serum ACE level. So if a doctor is using the serum ACE level to check the activity of your sarcoidosis it is helpful if the results are interpreted in conjunction with a knowledge of your ACE genotype.

The D-Metabolites also provide an accurate estimation of systemic inflammation, and can increase the certainty of ACE diagnosis.

It is important to note that just because you have the DD genotype you will not necessarily become more ill, you just may have to take greater care of yourself... There are a lot of people (1/4 of the population) who have the DD genotype without having any disease at all.

I hope this is clearer, if not, please feel free to ask me to clarify it.

..Trevor..
 
 Re: ACE Testing ain't simple... Do it this way...
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-25-02 19:15

Belinda has found an article with the normal values and range for each of the Angiotensin alleles. I have edited the first message in this thread to take account of the new data, and to give a link to the paper that the data came from.
..Trevor..
 
 Re: ACE Testing ain't simple... Do it this way...
Author: Angelique (---.lsss.org)
Date:   07-29-02 07:50

Hello,
Can anyone tell me what an extremely high ACE level means. I have had sarcoidosis since 1998. I have been feeling tired with sore joints and headaches. I felt like a hypochondriac seeking help, when my doctors were telling me that they could not find anything wrong and that my lung x-rays were the same. They tested my ACE levels and the 1, 25 Dihy...... Both levels were high with my ACE at 108. I will see the Doctor on August 2, and would like to know what to expect.
Thanks,
Angelique
 
 Re: ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-02 13:11

Angelique,
ACE is produced by macrophages and epitheliod giant cells in the granuloma when there is active inflammation. A high ACE value invariably means that you have active granuloma, active sarcoid inflammation. A high 1,25 Dihydroxyvitamin D level confirms that (by the way - did they give you a number for the 1,25? - the number of pg/ml is significant)

An ACE of 108 is high by any measure. You need to have the inflammation treated. I would not recommend prednisone until after you have had a good shot at any bacterial infection in your body. Prednisone makes the bugs retreat to soft tissue, and they are then much harder to kill with antibiotics.

I would recommend you read the threads on Bacterial causes of sarc and Minocyclin that are on this BBS, and print out the Rickettsia Helvetica and Propionibacterium Acnes articles to show him (click on these links). There are some guidelines on treating refractory bacterial infections at this website (you will have to sort through all the irrelevant descriptive text...)

..Trevor..
 
 Re: ACE Testing ain't simple... Do it this way...
Author: Angelique (---.proxy.aol.com)
Date:   07-29-02 18:11

Thanks Trevor,
I have learned so much from reading your input with this board. If it had not been for this board I would not have known what test to request when I had gone to the doctor. I have printed out copies of the links to bring to the internist on the 2 of August. My 1,25 Dihydroxyvitamin D level was 60.
I currently know that I have active sarcoid in my liver, spleen and lungs and have cutaneous sarcoid on my left wrist and my neck. My current lung x-ray shows that I have enlarged lymph nodes. Although I tire easily, I get a lot done during the day, continuing to work full-time. Again Thanks.
Angelique
 
 Re: ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-09-03 14:51

I am getting a lot of emails about ACE testing, and since this thread had dropped back onto the third page of "Older Messages", I decided to bring it to the front again.

..Trevor..
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Bastiana (---.olympus.planet.nl)
Date:   01-09-03 15:33

Trevor,

Thank you, that was really neccecary.
My housedoctor whom I accused of patriachalism, which he firmly denied, said HIS opinion about this website:
this people are very sure about themselves!!
I said: 'Yes'! Thank god they are! Nothing to do with patriachalism, all with just plain knowledge that they apparently are in lack of....

Bastiana
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-09-03 15:37

Bastiana,
Dont forget the "sheer hard work" part of it - Belinda chased down the German research that documented the levels, and then we had to work through the German text to find the numbers

..Trevor..
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Debra Simmons (---.freeuk.com)
Date:   01-10-03 13:57

Thanks Trevor and all. i have printed out the guidelines and all the documentation. I will take it with me to my doctor next Tuesday. As i said my Ace level is 96 now. I feel awful, with very painful shoulders and I ache. With so much flu around, it is difficult to know which is which.

My ACE was 128 in April 02. I have not taken predisolone for some time, but was taking the Cyclophosfamide and that seemed to flatten the sarcoid. I thought I had gone into permanent remission.now, although my doctor is threatening me with methyl prednisolone at the moment. he has given me Amoxicilin 500 mg as a cover, in case i need it, and will review it all next week.


I have something to confess. I cringe when I tell you this, but I looked really pale and insipid, so before Christmas and just before this all started I went on a course of sun beds!!!!!! OUCH. I love the sun and soak it up whenever possible, not to lay out in it for long, but the usual sun glasses on and off for a walk on the beach. From March to November we spend most weekends and nearly all holiday times at the sea. It has never seemed to be a problem, and only once did my previous Consultant say, be careful of the sun in Spain, or you may spark off a sarcoid flare. It wasn't hot and I was o k. As a nurse, I should have known better. What do I do now?

I am waiting for my Vit D results, and then my Gp says he will read all the literature that I have downloaded from you. In the mean time I have an appt. at the Royal Brompton Hospital, but I believe they are still taking the steroid, azathiaprine route. Help. .
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-10-03 19:09

Debra,
Take alook at these articles, it will give you comfort that you got off quite lightly:
"Precipitation of hypercalcaemia in sarcoidosis by foreign sun holidays: report of four cases"
"A 35 year old woman .. developed fatigue, nausea and loss of weight during a summer holiday in Italy"

Anyway - the 25-D test will reveal the damage - exactly how much 25-D you have stored up the body fat that has to be dissipated.

Keep smiling,
..Trevor..
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Tammy (---.cox-internet.com)
Date:   06-01-03 18:34

Hello.... My ACE level was 6.. is that low? I have just started going to a specialist and have lots of questions for him after reading this site! Thanx for the challenge!
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Tammy (---.cox-internet.com)
Date:   06-01-03 18:43

hello again... I take an Ace inhibitor for high blood pressure. Will that change the ACE test? Are they even related? My liver enzymes were high and my serum calcium levels were slightly elevated also.
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-01-03 19:01

Yes, 6 is very low. But the low value is to be expected because your ACE inhibitor is suppressing your serum ACE levels.

If you get Doc to test the D metabolites, however, they are much less affected by the inhibitor. These will also give you insight into your calcium problems, although I also suggest a PTH test as well. All of these (and the liver enzymes) are affected by the sarcoid inflammation, and will return to normal after it is gone.

Finally, the use of Frequently Dosed Angiotensin Receptor Blockers (click here) will not only cut your BP but start you on track to curing your immune disease. Read the tutorials at the top of this page, print the complex ones out for Doc.

Welcome to SarcInfo

..Trevor..
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Sue (---.ssa.gov)
Date:   06-05-03 13:51

Hello Trevor,

I've finally found a dr. that will start me on Minocycline based on everything I've printed out for her from your website. I'm having the "D" bloodtests redone (I only had the 1,25D done before) so we have a measure. My sACE level was 152 in April with the normal range 8-52. Do you think I should have this redone as well and ask them to measure my ACE genotype?
I don't see the doctor at Johns Hopkins until July 25, but my primary care physician said he didn't think I was in any danger not having any treatment until then. I think he's washed his hands of me as well as the pulmonary doctor and neurologist because I've refused to take the Predisone. I'm still waiting for results from an MRI of my neck and spine, the neurologist is concerned I may have the neurosarc. He said if it didn't show on the MRI he wanted to do a spinal tap. If this is neurosarc, is the treatment any different? I really don't want to go thru a spinal tap if not necessary.
Thank you again for this wonderful site and my thanks to you and everyone else for all the research.
Sue
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Sue (---.ssa.gov)
Date:   06-05-03 13:57

Everyone,
I forgot to mention in my last msg. that I've been taking MSM, natural sulfur, and it has really decreased my pain except now I'm having terribly achy legs. I'm wake up around 2 am every day and from then on I have trouble sleeping but I think I actually feel better if I just get up. But then I don't get enough rest and the pain comes back in other places.
Sue
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-05-03 14:05

Sue asked: "If this is neurosarc, is the treatment any different? - Nope.

Spinal Taps are dangerous, painful and of little diagnostic use, IMO. "Stay away from the Neurologist who wields a knife" would be my suggestion.

Beware that your primary Doc might be expecting Johns Hopkins to force you onto Prednisone. That is what Johns Hopkins did to the last SarcInfo'er that went there. But now she has Benicar from her local physician and is back at work...

It is never too early to start treatment because it can do no harm. ARBs and Minocycline are safe drugs. Safer than any other drug customarily given to Sarc patients... And an ACE level as high as 152 would send many physicians into panic mode...

..Trevor..
ps: Forget the MSM and other half-measures. Concentrate on the cure.
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Tammy (---.cox-internet.com)
Date:   06-05-03 19:30

Hello again!

I take lisinopril/hctz 10mg/12.5...1/2 tabqd. My bp runs generally low at about 100/60, and as low as 88/50, with a pulse of almost always around 60-65bpm. This is a very low dose, so...can or does this low dose contribute to the low ACE level? Silly question?!! Also I had some pre-op tests done before my sinus sarc surgery and was concerned about these results. I had not started the predn. yet; I know it can affect results.

neutrophils%- 85 flagged high ref. 45-70%
lymphocytes%-12.4 '' '' low ref. 15-45%
monocytes%- 1.3 '' '' low ref3-12%

lymphocyte#-0.7 '' '' low ref.1.2-3.4 K/mm3
monocyte#-0.1 '' '' low ref.0.2-1.2K/mm3

I had been on antibiotics for quite awhile due to infections in my sinuses. I have had many "BAD" bugs in me, such as pseudomoas multiphilia which is resistant to most antibiotics. (gram-negative) Thanx! ~Tammy~
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-05-03 20:50

Hi Tammy,

If your B/P runs that low, why does doc have you on a dual antihypertensive?

ACE levels are not diagnostic. Many people with lots of inflammation will have a normal ACE. You need to test the 25-D and 1,25-D to know what is going on.

The labwork you listed is probably not significant. It could have been altered by many things.

It's unlikely that the antibiotics that you were using were the ones that are effective against the bacteria which cause sarcoidosis. And they may have even contributed to the development of more cell wall deficient organisms.

When you begin to kill the right 'bugs', you'll get herxheimer, and know you are on the road to recovery.

Meg
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Tammy (---.cox-internet.com)
Date:   06-05-03 21:06

Hello,

Herxheimer is SCARY!

~TAmmy~
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-05-03 21:11

Tammy,
Scary but temporary. And the severity is under your control.

..Trevor..
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Tammy (---.cox-internet.com)
Date:   06-05-03 21:18

Meg,

MY bp was not always under control. It's only been this way in the last few months. Also the more weight I lose the better it gets. I have been keeping a written record of it to present to the Dr. Since I have been on the Pred. I also have NOT had swelling (pitting edema) in my legs. It's strange also that I have lost 15lbs since I started the pred. 5 weeks ago. I know this is not the norm with this med. I am glad of this side-effect!

~Tammy~
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Tammy (---.cox-internet.com)
Date:   06-05-03 21:21

Trevor,

Which sites explain how to "control" herxheimer?

Thanx, ~Tammy~
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-05-03 21:25

Tammy,
Take a look at the box labelled "Papers for Physicians" at the top right of this page.

Click on the one titled "Minocycline Dosage Issues" for info on controlling sarc herxheimer.

..Trevor..
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-05-03 21:37

Hi Tammy,

Does Prednisone upset your stomach? Sometimes weight loss with Prednisone can be attributed to that. You're lucky that you are normally hypertensive. It should eliminate one argument when you request Benicar instead of lisinopril/HCTZ.

Herxheimer is scary if your sarcoidosis symptoms are severe or involve cardiorespiratory. Otherwise, it is actually fascinating to take an antibiotic and feel symptoms become worse. It's all the evidence you need for the bacteriol etiology. And like Trevor says, you control the amount of the reaction with the dosage and timing of the minocycline. The Benicar helps too as does avoiding all sources of vitamin D.

And the results are amazing. It you're willing to get worse temporarily, you can put this disease into remission.

Meg
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Tammy (---.cox-internet.com)
Date:   06-05-03 21:45

Trevor,

Thanx again. Being it's 11:35pm here in Texas, I'm about ready for bed. The Pharmacy calls early! One last question though. I have been to my Sarc specialist once and he made this statement. " Most Drs' only see maybe 12 cases of Sarc in their career, I have 12 active cases I am treating now. It makes me wonder why?" I live in NE Texas, in a town of 35,000. Could this be caused by an invasion of cell-walled bacteria? Am I crazy!!!!
~Tammy~
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-05-03 21:59

Tammy,
In this reference I put evidence that the surge in immune disease is because of irresponsible and indiscriminate supplementation of Vitamin D into our food chain over the past 20 years, coupled with almost total ignorance of how the D metabolism strengthens the immune system against some cancers, but weakens it against CWD.

..Trevor..
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Tammy (---.cox-internet.com)
Date:   06-06-03 05:14

Hello,

Do you have to be off the prednisone BEFORE you start the benicar/antibiotic regimen? Have a great day!

~Tammy~
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-06-03 05:34

Tammy,
Dr Thomas Mc Pherson Brown's book "the Road Back" talks about tetracycline therapy in patients using prednisone to control their herxheimer, because prednisone is all he had available. He discouraged it, but states that doses to 10mg (or so) do not seem to make a huge difference to the effectiveness of the therapy.

In your case you are on 20mg prednsione qod. I never understood why people were given qod dosing of this drug. It has a plasma pharmacokinetic halflife of just 4 hours or so. I have no idea whether this is an equivalent dose of 10mg qd or 20mg pulsed, and none of the textbooks have been able to clarify this point. In fact, I haven't been able to find any rational reason documented for Alternate Day Dosing, except that it was a practice which started in the 1950s and has not been adequately questioned. You want to wean your dosage down to levels at which the drug is not turning your adrenals totally off, somewhere around 5 mg or less per day, IMO.

It is easier to wean from prednisone once the symptoms are being controlled by Benicar. Wendy has reported that she had trouble juggling her prednsione and benicar, needing to take the tablets at different times of the day. I would suggest concentrating on this issue before starting with antibiotic, as the herxheimer always makes things worse.

..Trevor..
 
 Re: ** ACE Testing ain't simple... Do it this way...
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-06-03 06:11

Tammy,

Your sarc specialist was comparing his caseload to the average physician. He pointed out correctly that he has more experience with treating sarcoidosis patients because they have been referred to him. This doesn't mean that there is a higher incidence in your area.

Primary care docs usually refer sarcoidosis patients to the specialist that deals which the organ that seems most affected. Usually this is a pulmonologist. Since these specialists have had the privilege of treating (but not curing) this disease for so long, they seem to have a proprietary interest in it and a reluctance to relinquish long-held but unproven beliefs.

Many of us here at SarcInfo have found our specialists to be exceptionally close-minded and unwilling to even listen or read about new scientific evidence or to help us try a new, safe protocol. We've turned to our local doctors, often Internists, and found the help we need. Even though they may never have treated a sarcoidosis patient, this protocol is so simple that they are willing to give it a try.

Meg
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Historical perspective on Sarcoidosis:


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

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