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 The material here provides useful background, but most of this site is now out-of-date.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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 Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-23-02 05:50

Our latest manuscript, "Remission in Sarcoidosis" has been posted on the British Medical Journal's "Clinical Medicine and Health Research" NetPrint system.

I have written a simplified summary of the paper, and it can be accessed by clicking this link. It does not replace the paper, and has a lot left out, but it might help you get the gist of what we are saying and make the paper easier to read.

The "Clinical Medicine and Health Research" system is essentially a "holding area" allowing medical personnel to review and comment on a document without that document entering any formal Peer Review process prior to publication. Full Publication in a paper journal might take another year or more from this point. The comment capability at "Clinical Medicine and Health Research" is for the use of Medical Personnel ONLY.

Let me say that again. The comment capability at "Clinical Medicine and Health Research" is for the use of Medical Personnel ONLY. Every comment is reviewed by the editors at the British Medical Journal prior to being publicly posted at the Clinical Medicine site. The comment capability allows researchers and doctors who disagree with what we are saying to make their disagreements known publicly, and to allow informed debate of the issues.

Questions from patients should be posted here, at Sarc Info.com

Click here to access the Full Text of "Remission in Sarcoidosis".

You should print out the "Full Text" of our paper to discuss with your doctors, not the summary.

Enjoy,
..Trevor..
ps: please make sure that all the Sarc sites link this document and that we share it as widely as possible. We need to let the BMJ editors know that Sarcoidosis is not an insignificant area of medicine, and that progess in its treatment affects the lives of real people every day. Please also tell your Doctors that if they disagree, or have questions, they can post their comments on the BMJ system.
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Denise Testa (---.connect.com.au)
Date:   08-25-02 18:35

Hi Trevor,

There were a couple of points in your paper which were very interesting to me as a sarc patient but which you didn't go into in great detail.

I have suffered and or found benefit from what you recommended but I don't know why I did.

I have mentioned these things to several doctors who were totally flummoxed, or denied they could occur, or thought me mad, or that I had imagined the whole thing.

I am also interested in them from my mother's pov. She is a trained registered triple certificated nurse who teaches anatomy and physiology to nurses and trainee massage therapists. She is a highly skilled practising remedial massuer who has also done the cranio-sacral release method and has used it on me.

So my questions are pertaining to these. How does this therapy aid toxicity of these hormone precursors in sarc?

As a person who has experienced lymphathic problems with fluid build up particuarly around the head and left arm and has had it relieved by lymphatic drainage massage how does this come about?
Drs have denied I have had this problem, though my own doctor has seen me with it. She suggested I take photographs to show to specialists.

I would love to know how this comes about.

Denise
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-25-02 20:05

Denise,

I have utilized craniosacral therapy and lymphatic massage techniques to help me with my sarcoidosis symptoms. Both therapies are related to osteopathy, based on the principal of supporting the body to allow it to heal itself.
The lymphatic system doesn't have a pump organ like the heart. It has instead a one-way system to move the lymph fluid forward. When the lymphatic system is overwhelmed and overloaded, manual stimulation (the massage or "pump") can help it recover. Some manual lymph techniques are even used in spas, because they make you feel (and look) much better. Exercise (moving) can also stimulate the lymphatic system.

Craniosacral therapy provides relief of headaches and stops my coughing attacks. I don't know exactly how it works, other than it allows the body to deal better with disease and inflammation. We know the most severe cases of sarcoidosis are called "neurosarcoidosis," so it's gotta have something to do with the brain. Craniosacral therapy is a non-invasive technique that relieves my pain, parasthesia and breathing problems.

Belinda
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-25-02 20:18

Denise,
This therapy is all pretty technical. I never came across it when I needed it most, so I know nothing about it.

My contribution to "alternative treatments" was small. When I used to have a Sarc migraine attack I would knock it down with one of a number of electro-acupuncture machines which I had bought in the far-east (Japan and Singapore). One of these units is now available here (click here). I needed to put the electrodes on the back of my neck just below the hairline and straddling the spine and zap the pain into oblivion over about 15 minutes of use. Sometimes this had to be repeated every few hours. But it worked. Amazingly well.

Then the ARBs came along and now I have a drawer full of unused machines. Maybe I should start loaning them out...

..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Denise Testa (---.connect.com.au)
Date:   08-26-02 06:02


I find chiropractic care and amytriptaline help with migraine. In fact I have not taken any medication for the last couple I have experienced - so they are under control at present.

I just wondered how this lymphatic excess of fluid occurs. Is it due to granuloma in the glands? How do the blockages occur which back up the fluid?

Is there any lit on this?

Denise
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-26-02 07:37

Denise,

One of the symptoms of sarcoidosis is lymphadenopathy, swelling of the lymph nodes. The lymph nodes enlarge when their work load is increased when fighting infection. This animated website explains how the lymphatic system works and disorders in the lymphatic system. (Follow the table of contents on the left and click through to each chapter.) The lymphatic system collects excess interstitial fluid and returns it to the blood. Once the interstitial fluid enters a lymph capillary, it is called "lymph."

Scientists and engineers and still studying the mechanisms that influence lymph flow. The lymphatics have a role in regulating interstitial fluid volume and flow. Inadequate clearance of the interstitial fluid (by the lymphatic system) allows flooding of alveolar air spaces and impaired gas exchange.

This study indicates osteopathic manipulative therapy, lymphatic and splenic pump, actually enhances the immunologic response to infection or injected antigen. Sarcoidosis is supposed to result from an infectious antigen in genetically predisposed people. Sarcoidosis patients have a problem with lymphadenopathy, interstitial fluid in the lungs and, possibly, infection. That explains why lymphatic pump therapy, which works on these areas, helps in sarcoidosis.

Take care,
Belinda
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Denise Testa (---.connect.com.au)
Date:   08-26-02 17:39

Thanks Belinda,

I am going to keep this information with me. I have had Drs deny this has type of thinghappened to me.
Even though I have photos of the swelling and one technician did notice I had swelling when I had a scan done. However, I have had two scans (inc Gallium) with the swelling and apparently nothing showed up on them. Without evidence some Drs don't believe. Luckily I found one who did.

My mother DID believe me and even before I was diagnosed with Sarc we knew there was a problem with my lymphatic system because of the lymph that would collect down the left side of my face and neck and in my left arm. Not as bad as women who've had had their breast lymph nodes removed, I will grant you - nowhere near as dramatic, but never the less there and very uncomfortable

When I had it badly my mum did lymphatic drainage massage which gave me some relief, if not perfect relief.

This is something I woke up to. It rarely came on during the middle of the day - it was always worst in the mornings.

It all makes perfect sense to me and mum. I sometimes wonder what Drs learn at medical school. Certainly not common sense, nor anatomy.
My mum knows more about anatomy than most GPs because she has taught it for about 20 yrs.

Of course the big clincher is - Drs can't do anything/ don't know what to do about this symptom - even if they do believe you - and Drs hate to be in this position. That is where alternative therapy comes in, I suspect - another threat to them. There are good doctors out there please don't misunderstand me. Not all of them are dead losses and you do need to put yourself in their position and remember they are human first. The lymphatic drainage problem was one thing they seemed to have never encountered in relation to sarcoidosis but it all makes perfect sense that there was an infective/inflammatory process going on because I had bad night sweats at the same time and my sed rate was raised.

This info is most informative and thanks for answering my question. No doctor could give me an answer, only Mum.

Denise
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Denise Testa (---.connect.com.au)
Date:   09-04-02 01:15

I got the results of my Vit D tests

One of them was 35 - 1 lower than the bottom of the normal range. I don't know which one it was. The other was 78 which was around the middle of the normal range.

It would appear to be a ratio of 2.1 or there abouts unless I am wrong. However, Since getting all these tests done I have developed new symptoms.

I had severe colic on Saturday night. Didn't sleep a wink. Vomited twice. I have had pain around diaphragm level ever since without remit. I went to the doctor Tuesday morning. As I have had pleurisy it felt a bit that way.

He palpated my abdomen but nothing else. His early diagnosis in biliary colic. I have an ultrasound tomorrow at 9 am. I guess I have to wait until then to find out for sure.

I awoke in a sweat last night but my temperature was normal. I have some urine sticks. I am getting medium blood, a trace of protein, a trace of bilirubin, and medium ketones because I am not eating. My urine is acidic at pH 5 Glucose, ascorbic acid, etc are all negative.

I hope I get to the bottom of this. My diaphragm feels like it is about to burst. I believe sarc can involve the liver etc.

Where to from here?

Denise
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-04-02 13:50

Denise,
Assuming your test results are in Metric units, and assuming the lower value is for 25-hydroxyvitamin-D, 35nmol/L is 14 ng/ml, or about average for Sarc patients. Yes, it is much lower than normals (their mean is about 62 nmol/L) but that is because of the granulatomous inflammation energetically converting any 25-D to 1,25-dihydroxyvitamin-D

Assuming that the 78 number is metric 1,25-D then that converts to 31.3 pg/ml, or just about normal. No sign of Hypervitaminosis D in this number. The half life of 1,25-D is just 4-6 hours, however, so it will fluctuate quite quickly, especially after exposure to sunlight.

The D-Ratio is 2.2, indicating moderate extra-renal inflammatory activity. Your actual 25-D and 1,25-D levels indicate that you are exerting moderate control over your 25-D intake.

There is some indication that your normal 1,25-D value might indicate that there is some Hypercalcemia that is compensation against the 1,25-D hormone. So you should look into that possibility.

Pleurisy? A sarc patient should aggressively attack any infection for two reasons
1. If they are taking steroids of any kind (including inhalers) the infection will spread rapidly, and
2. Infection is at the base of sarcoid inflammation, and must be knocked down if the Sarcoid is to be controlled.

Effective Antibiotic treatment is even being found effective at reducing Heart Attacks - if you have Sarc you have to be fastidious at knocking down infection.

So get rid of that infection ASAP. Focus your whole mind on it. Don't accept just penicillin. And make sure that your Doc understands why he/she should also be using Minocycline/Doxycycline to attack any organisms capable of living in your Sarcoid granuloma. He will not find any of these organisms in blood or urine cultures.

Sarc can inflame any organ of the body because it follows the Microbial infection that can attack any organ of the body. This includes the liver and kidneys. There are other ways they can be compromised, eg calcium deposition, but your normal 1,25-D would make that unlikely. So go after them bugs...

Keep Smiling,
..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Denise Testa (---.connect.com.au)
Date:   09-04-02 18:58

Thanks Trevor,

As i could have been mistaken taking them down over the phone, I would not count on it being correct.

However, I have an appointment to see the doctor this wednesday and will get a copy of the results then.

Denise.
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Maryland (---.usno.navy.mil)
Date:   09-05-02 07:10

Trevor,

In your Abstract, you recommend using Minocin to reduce bacterial activity during the process of stifling the inflammatory cycle by "removing the fuel for the extra-renal production of the secosteroid." Is there an alternative for Minocin? Some warnings suggest that Minocin and other tetracycline antibiotics can cause sensitivity to light and sunlight. Some of the side effects include aching, inflamed joints, difficulty swallowing, joint pain, kidney or liver failure, and a variety of skin problems. This seems to mimic many of the symptoms of hypervitaminosis.

This general information on Tetracylines warns against use if there is evidence of significant liver problems. I have significant sarcoid liver involvement and would hesitate to use something with such a warning. I am also on 10mg/day of Prednisone. Would you recommend weaning from the Prednisone during active sarcoid?

Maryland
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-05-02 07:34

Maryland,
Minocin does not remove the fuel, that is achieved by reducing Vitamin D and sunlight intake.

Minocin is intended to remove the microbes capable of living in your granuloma and causing the inflammation to spread physically in the body. Depending on the microbes it may not work alone, and it has also been found effective with Doxycycline as a backup strategy.

Now the Minocin side effects.
Firstly it is a newer member of the Tetracycline family, the workhorse against the tropical disease microbes that have been identified in granuloma. The FDA warnings apply to the whole family, although the FDA does note that Minocin seems to have fewer side effects than the older tetracyclines. Read the FDA notes very carefully and you will see this. The Tetracyclines are prescribed a lot for Acne, when they shouldn't be, and we consequently have a lot of people taking them and a lot of adverse effects reported.

You have a chicken and egg situation here. If you continue on your current path it is definitely downhill from here. If you try a low dose regime (one quarter of the 'normal' dose) of a drug that is given to kids for Acne then it might put you into remission, as it did for me.

The choice is up to you.

..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Maryland (---.usno.navy.mil)
Date:   09-05-02 08:53

Trevor,

I agree that the path I've been on for the past two decades has been a destructive one. I would like to move in another direction but I would like to do it with as much information as I can gather to help me make better choices this time around. I know that I've probably done irreversible damage by being on Prednisone for so long. So I feel I must be extremely cautious in new therapies because I don't really know how dependent my body has become. My main goal is to become Prednisone-free, even if it means dealing with chronic sarcoid symptoms.

Are you aware of any recent studies focusing on successful Prednisone weaning therapies. Do you have any references for ARB therapy?

Maryland
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-05-02 09:16

Yes,
It all gets pretty discouraging. You place your trust in the Doctors' competence, yet the arrival of the Internet has now allowed us all to research how poorly the profession has absorbed new knowledge over the last 50 years. It seems that if there wasn't marketing money from the drug companies behind an idea then it just wasn't propagated to the Doctors.

I really can't help you with Prednisone weaning. I personally didn't have any trouble with weaning, and didn't develop a dependence. Partly this was due to my biggest symptom, the crippling migraines, which were not improved by the prednisone. So it was easy for me to get together the willpower to wean from the drug.

The ARB therapy is not something that we have been promoting heavily. We have been providing info to Doctors in the papers that we have written, and upon request. There is one paper at Clinmed that gives you a description of many of the issues. Click here to read it. This is an old paper, describing the initial observations that set us off on the path to solve the cause of Sarcoid inflammation. Nevertheless, it has been updated to reflect what we know now, and it does give insight into how these drugs behave differently in the general population and in Sarc patients.

The ARBs interrupt the Sarc inflammatory cycle, and, unlike Prednisone, also suppress the 1,25-dihydroxyvitamin-D. There are profound affects, both physical and mental, as your 1,25-D changes. Several Sarc patients have tried to initiate therapy and been frightened off by the strange sensations and reactions of the body to the removal of its dependence on 1,25-D. Others have had few problems.

That being said, they are safe drugs, highly targeted to do just one job - block the Type I receptors for Angiotensin II. Our latest "Angiotensin hypothesis" paper describes a therapy with Benicar (Olmesartan), which is definitely the best. Not all the ARBs block all the A-II receptors in the same way.

I hope that this is of some help. Theoretically the ARBs should not interact with the Prednisone, and you might find it easier to wean after the ARBs have kicked in. However you will need to find a doctor that can work closely with you as nobody has tried this yet. Everyone who has so far used the ARBs has been clean of prednisone And the pioneers always have arrows in their backs... There need to be studies, of course, but who is going to pay for them? There has been no interest from any of the drug companies. Seems they make more money off the Imuran, Methotrexate and Thalidomide classes of drugs...

..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Denise Testa (---.connect.com.au)
Date:   09-05-02 19:18

Trevor,

The new symptoms were biliary colic and not pleurisy as I at first thought and the whole thing was the same illness.

I had a gall stone of 1.7cm which had dislodged. So ironic since I have been on a high protein, high fibre, low fat diet since April.

Denise

Will get those D results for you on Wednesday.
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-05-02 19:23

Denise,
MAKE SURE THEY BIOPSY THE GALL STONE.

If they find out what is in it you will get some idea of what upset in your metabolism might have caused the stone to form.

..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Scott Smith (---.buf.adelphia.net)
Date:   09-05-02 21:12

Thanks, Trevor (and all the contributors) for this great resource!

I experienced right-side heart failure in March, 2001 (after two other "warnings"), accompanied by pulmonary and leg/ankle edema. My primary physician, a cardiologist, put me through six months of rest and cardiac tests, finally discovering that I had a heart of a 44 year old (my age at the time) and that my lungs were the problem. They started me on 24x7 oxygen at 4L/min.

Low oxygen saturation and pulmonary hypertension found by the angiogram led me to a pulmonologist, who found COPD, sleep apnea, and other lung funtion issues. A CT-scan showed "ground-glass opacities" throughout my lungs, leading me to a thoracic surgeon who correctly guessed sarcoidosis, even before he did the lymph node biopsy (thankfully avoiding a lung biopsy). The pulmonologist started me on prednisone, as well as Advair and Singulair.

It is now a full year since my sarc diagnosis. A recent CT-scan shows no improvement in the fibrosis, but my PFT results have been showing some improvement in diffusion, but not in volumes & flows. I still have the fatigue and joint pains and the occasional headaches. Fortunately, I have an excellent long-term disability insurance policy and was awarded Social Security Disability as well.

I began seeing an immunologist who also teaches at the local University of Buffalo medical school. He is weaning me off prednisone (30 days left to go) and replacing it with a combination of plaquenil and trental, as well as Fosamax and calcium carbonate to offset some of the effects of the prednisone. Trevor, I will certainly be discussing your findings with him and getting my D tests!

My motto is "Every day is a good day... some are just better than others!" Your forum has been a big help in keeping a positive attitude. Thanks again!

Scott Smith
Grand Island, NY
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-05-02 21:26

Scott,
It certainly sound as though you have everything well under control. Don't forget to ask doc about the low-dose Minocin therapy (100mg every second day) though. Plaquenil is an anti-microbial, but it gets at different microbes in a different way from the Minocin. Take along the Rickettsia paper - your immunologist sounds like he is on top of things, but he might have missed the significance of that paper (Rickettsia found to be capable of living in the granuloma).

I assume the Trental is supposed to reduce the neuropathy (loss of feeling) in your extremities?

Glad you find SarcInfo a help...
..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: caroline (---.win.org)
Date:   09-16-02 09:31

Hello All,

I have been pondering some questions this morning and I am sure I and others will have more.

After achieving remission, at what point does a person know they can go in the sun again? Do we experiment with exposure times?

What length of time to continue minocin? How about ARB's?

After remission and D levels are normal, would a 'trigger' such as bacteria, diet with excessive D, etc., again be necesssary to begin the inflammation? -or- Will we no longer need a trigger but will always be extremely susceptible to rampant inflammation without exposure? I understand the genetic pre-disposition will always be in our body.

Thank you for all you do, Trevor. Caroline from MO
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-16-02 09:58

Caroline,
You can never totally get rid of these infections. Based on the cases reported with Rheumatoid Arthritis, which have been treated for a number of years now, Dr Mercola does not continue the Minocin beyond the inital stability at 2-6 months, but provides "top-up" antibiotic therapies, as the patient needs them, to deal with flare-ups (at least, I think that's a good summary of what he told me )

The genetic pre-disposition seems to be a D metabolism problem. So you never totally lose the Sun sensitivity. It just goes back to the levels it was when you were a kid, before the infection. For me that meant that I could start going out with the family to Disneyland again, without being knocked out for a week afterwards, and without generating levels of 1,25-D that might weaken my bones or ruin my thinking ability...

The ARBs allow an improvement over the level of sensitivity I had as a kid. At this point it seems these can be taken indefinitely. Which is good, since they have been shown to retard cardiac, kidney and eye damage as we age...

There is an interesting NY Times article on ARBs. You may have to register with NYtimes.com in order to access this link. It is free.

Diet with supplemented D is an interesting question to which I don't have an answer yet. It is possible that once the D-Ratio is brought down to normal levels, with 1,25-D production controlled by the kidneys, that limited Vitamin-D supplementation might become a help, as it is in normals (where supplementing the 1,25-D levels have been shown to retard some cancers). I just don't know yet. Dr Guy Scadding did administer Vit D to some of his patients, and it didn't seem to harm the ones that were close to remission. So I think the jury is still out on this one. We will have to see what happens.

..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: caroline (---.win.org)
Date:   09-16-02 22:30

Trevor,
Knowing there is a trigger, such as bacteria that will set off inflammation; is it possible a flu shot could be guilty? Today I sent all the links at the top of the Phorum page to one of my sons to read. He called this evening and wonders if the flu shot could be a culprit. My symptoms began after beginning to receive a flu shot annually.

Or should we not even worry about the cause? Caroline
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-16-02 22:52

Caroline from MO
said "Or should we not even worry about the cause?"

A good thought Caroline. I used to worry about the "cause". I used to think it was petrol fumes, sidestream cigarette smoke, and even food allergies, but in the end it did not matter.

For a century, physicians have been trying to figure out an inhaled trigger for Sarcoidosis, and it really has done little good for the patients. I figured out the sunshine link about 15 years ago, but only when we stumbled across the ARBs (essentially by accident) did it all start to fit together. I was able to use my experience dealing with drug dosing (from my Insulin and GnRH and earlier LHRH research) to figure out how to prescribe the ARBs. The moment they started easing Sarc symptoms that implicated Angiotensin II in the inflammatory process, and 1,25-D turned out to be the missing link. From 1,25-D came the Lipopolysaccharide activation which implicated the gram-negative bacteria and the rest is history...

Are there other causes of Sarc? Who knows? At the moment nothing but lipopolysaccharide from gram-negative bacteria seems to have enough biochemical power to keep the granuloma going...

..Trevor..
Summary: I don't think your Flu vaccine is "the main problem"
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Denise Testa (---.connect.com.au)
Date:   09-17-02 01:52



Trevor,

The Vit D results for me were correct as I gave them to you and thus the ratios you gave were also correct.

My doctor is going to do a calcium as you suggested, next time I am in.

She was interested and impressed with your work, and that you take time out to help fellow sarcoid sufferers.

Denise
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Jillian (---.westriv.com)
Date:   09-17-02 16:59


Reading your Remission of Sarcoidosis manuscript has FINALLY put all the puzzle pieces of my life together. Thank you! (I have pulmonary sarc.)

I've made an appointment with my open-minded, caring (at least in the past) family physician for next week to discuss your Remission of Sarcoidosis manuscript, the bloodwork and Dr. Mercola's protocol. I'm mailing her a copy tomorrow, hopefully she'll be able to review it before I get there.

I have a couple of questions:

1. In the paper you state "Lipopolysaccharide (LPS) is the major constituent of the cell walls of gram-negative bacteria." Does this refer to gram-negative bacteria only? Do we have any idea if other than gram-negative bacteria can live in the granulomas (other than TB)?

2. How can I get a copy of your paper "The Angiotensin hypothesis - how sunlight feeds the run-away inflammation of sarcoidosis"?

3. You also state "If there is a need to venture outdoors then thick clothing must cover all exposed skin..." What is your idea of thick clothing? Would, for example, two layers of long-sleeved t-shirt be considered thick? Here in North Dakota I KNOW what thick is in winter!

4. I have almost always reacted very bizarrely to prescription meds--usually with side effects that are not even listed anywhere (e.g., suicidal and psychotic with the dozens of low doses of anti-depressants I tried after I was diagnosed with fibromyalgia too)! I've been able to tolerate some antibiotics and Ambien, but that's it. This frankly concerns me with the ARBs, any comment???? (I've never taken Pred. The Internist that first diagnosed my pulmonary sarc. in 1980 said don't let anyone talk me into taking it unless it was solely a matter of life or death. I've never been in a life or death situation with my sarc.)

Thanks!

Jillian from North Dakota
~~~~~~~~~
You can lead a man to knowledge, but you can't make him think...
~~~~~~~~~
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-17-02 17:33

Jillian,
1. Gram-negative bacteria include the relatively common E-coli as well as the Rickettsia (Spotted Fever) and Borellia (Lyme) and a host of other microbes. Rickettsia and Mycobacteria (TB) have been found living in granuloma, and I expect that other similar organisms will be found capable of this as well. Minocin is one of the best antibiotics for penetrating the walls of the cells that the bacteria have inhabited and attacking them. Doxycycline is good too. Cell-living bugs usually can't handle one or other of these antibiotics.

It is possible that gram-positive bacteria might also be able to trigger the abnormal release of 1,25-D, but only the lipopolysaccharide has been verified as doing that (in the lab, in-vitro). It is associated with gram-negative bacteria.

2. I will email you a copy of The Angiotensin Hypothesis for you to discuss with Doc.

3. Hmm. When I was most sensitive I found a medium density black sweater cut off the radiation pretty well. A shirt and black (long arm) tee shirt was not enough. Your sensitivity will vary, depending on your D-Ratio.

4. Most sarc patients do not react properly to prescription meds, even simple ones such as Epinephrine, which causes localized edema instead of acting as a localized vasoconstrictor. Sigh...

The ARBs don't seem to have any bizarre behavior with the patients that have been taking them. HOWEVER, the effect they have upon the psyche and the body is very considerable, as they block the generation of 1,25-D, and your body will suffer short and long-term withdrawal symptoms while you get this hormone down to a reasonable level. We wrote a paper describing some of this (click here), but the newer ARB, Benicar stays in the body longer, and is less of a problem than the Diovan we had when we originally wrote that paper. These issues are addressed in the manuscript I am sending for your Doc to look at.

..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Jillian (---.westriv.com)
Date:   09-20-02 09:19


I've been wondering... When I was in grammar school, through the school system we would get TB skin tests. Until about 10 years ago I always tested positive, though I've never had the disease symptoms. Wonder if that's what could be lurking in my granulomas?

Is this familiar to anyone else?

'til later,
Jillian from North Dakota
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-20-02 09:46

The genetic pre-disposition makes a sarc patient very sensitive to infection or immune reaction to any foreign genetic material coming into the body, including animal scratches

The worst reaction I had was to a "Strep" sensitivity test - my whole forearm swelled up from wrist to elbow

I suspect that the reaction you got to the TB test was not any specific reaction to BCG or Tuberculin. But maybe there are Mycobacterium Tuberculi living in your granuloma. Mycobacteria are susceptible to Minocin and Doxycycline, so you know how to follow up that possibility...

..Trevor..
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Miss Jan Umpleby (---.in-addr.btopenworld.com)
Date:   10-16-02 05:27



I have been diagnosed with Sarcoidosis, but unfortunately have not been given much information regarding the diease. I am at present searching information through various web-sites and have found yours to be of great help and assistance. I have been given an appointment in December to visit a Sarcoidosis clinic, which will hopefully help.

I would just like to say thank you for your help.
 
 Re: Remission in Sarcoidosis -Our latest manuscript
Author: Janet Matthams (---.cache.pol.co.uk)
Date:   10-27-02 13:12

I have had Sarcoid for two year+. I ws treatd with Prednisone for aboutthree months, then gradually weaned off. When down to about 2 tablets, the weakness and joint pains returned and it was discovered that I had Addisons Disease. I already had Hashimotos (Hypothyroid) and Type 1 Diabetes (started at age 48!. When the symptoms of Addisons were described to me, I realise that I had had it for some time, gradually getting worse. It may have been the cause of the sarcoid. I am now permanently on Hydrocortisone and Fludrocortisone which do control it OK but loosing weight is hard. My chest X-rays are all clear and if the next lung function test and x-ray prove OK, then I will be "signed off". However, I will always have to see the Hospital and Doctor regularly for the others. Aparently, as they found Thyroid antibodies, it seems to be an Autoimmune problem. Could that be a the cause of sarcoid in some people?

I have no problems with sunlight, no skin problems except itchiness and dryness. My eyes were dry, but now OK, and no problems with antibiotics (very rarely have them), except an allergy to Pennicillin. I very rarely get colds, never had flu, and seem to have immunity against most bugs.

So, at present, the sarcoid seems to be gone and I just have the others to deal with. Any further information would be appreciated.

Janet
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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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