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 The material here provides useful background, but most of this site is now out-of-date.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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 Lung transplants
Author: Kirk Edwards (---.sd.sd.cox.net)
Date:   08-14-02 20:24

Hi,
My lungs are really a mess. I was told I have about 25% capacity left on one side and 50 on the other. The VA doctors have suggested a lung transplant. It would be wonderful to breath well again. I wonder how long it would be until the new ones were infected, or would I be ok. Hopefully it would buy me some more time. At present, I get winded just making the bed.
New lungs and a new hip and I think I would feel like a 20 year old again!
Kirk
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-14-02 20:41

At the recent 10th Sarcoidosis Network Conference in Los Angeles, Dr Richard Babers from USC gave a presentation on "Transplantation and Sarcoidosis".

He confirmed that lungs transplanted into sarc patients quickly develop granuloma. In about 25% of patients the bacteria spread before the patient dies from other transplant related causes (an average of 14 months)

The reason for the granuloma becomes pretty obvious if you read the messages on this board and understand how the hormone 1,25-dihydroxyvitamin-D causes the granuloma to form in soft tissue which has been used as a home by gram-negative bacteria. Sarc has a hormonal/bacterial genesis, and the granuloma formation is just as quick in transplanted tissue.

Now that is assuming, of course, that your body survived the drugs it will be given to make sure it doesn't reject the transplanted organs.

Dr Barbers' slide showed an average life expectancy for lung transplant patients of about 2 1/2 years.

>>> Update. A recent paper gives the mean life expectancy after transplant of only 14 months. Click here to read it.

So you need to think out very carefully whether you want to feel like a 20 year old again (which you won't, because the anti-rejection drugs will cramp your style), knowing that you have a 90% chance of being dead by 25

I would strongly recommend you learn about Sarcoidosis from the people and messages at SarcInfo and concentrate on beating this disorder in a more conventional fashion

Welcome to SarcInfo.com Kirk.
Please let me apologize in advance for the way I have spoken out(above). But that is the way SarcInfo has to work - just the facts, man, just the facts...

..Trevor..
 
 Lung Transplants
Author: Michele (---.va.gov)
Date:   08-15-02 10:53

Trevor, I read your above entry with some confusion. I just spent the day with my mother at Loyola Medical Center and the info I got from them is very different. Specifically the fact that they told us that the sarcoidosis would not affect the newly implanted lung. I would like to hear further what this individual had to say in LA. Do you know if there is a transcript from the conference that I could get a hold of? Thanks in advance.

Michele
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-15-02 11:07

I don't know about a transcript. There was a video tape made. I did ask Ruth (the SNF President) for a copy, but haven't been given one yet.

Richard George Babers, MD
Professor of Clinical Cardiothoracic Surgery,
Univ Southern California, Dept of Medicine,
Pulmonary and Critical Care Medicine.
"Transplantation and Sarcoidosis" March 30, 2002

There is no confusion whatsoever (in my mind) about his statement that Sarc shows up in the transplanted lungs, or in the graph he showed for the limited expected lifespan of 2 1/2 years after lung transplantation.

This article from 'Radiology' says "Sarcoidosis is the most common disease to recur".

Which is exactly what I would expect. Let's look at what we know. Sarc inflammation requires both the gram-negative bacteria and the high levels of 1,25-dihydroxyvitamin-D3 to flourish. The hormone will be in the new lungs immediately, but it is going to take quite a while for bacteria to get across to the new lungs. Probably 2-4 years. So, if we have a 50% mortality amongst sarc and non-sarc patients by 2 1/2 years then we can assume that half of the sarc patients have died from normal (non-sarc) causes by 2 1/2 years and only half are left. Interpreting the data from the reference above, a 35% recurrence, and assuming that it takes 2-4 years for the bacteria to spread then 70% of the remainder will develop sarcoidosis complications and be diagnosed as such (35% overall). This may all sound a bit morbid, but that's what lung transplants are all about - trying to gain an extra year or two for patients who would otherwise die.

..Trevor..
 
 Re: Lung transplants
Author: Kirk (---.dsl.sndg02.pacbell.net)
Date:   08-15-02 14:02


Trevor,
Thanks for the wonderful news! I was afraid of that. Good to know. I know a transplant would not be an easy thing to go through. I know I need to start exercising again. I did feel much better when I did. I had to take it very slow and recouperate between sets when lifting weights. Maybe I can hook myself up to the oxygen machine while doing so (if I don't get tangled up in the tubing) and that would help. I go for retesting on my breathing tomorrow morning. I'm 53 now, and have had it in my lungs since at least 1981 that I know of. My lung Xrays showed a lot of damage even then. It's the fibrous growth that gets harder as the years go by that they tell me is causing the decrease in breathing ability. Just doesn't expand like it should anymore. Is there any chance of increasing my capacity by exercising? I do know that my ability to take in air had increased before after working out for about 18 months.

Sorry about the "infected" term. Won't do that again!

By the way, I feel just rotten today. Ache from head to toe. Would love to crawl in a hole and die about now. It's been coming on for several days. I can always tell.
Kirk
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-15-02 19:27

Michele,
I left extra detailed comments in the message above.

Kirk,
Get your D tests done.

Keep smiling,
..Trevor..
 
 Re: Lung transplants
Author: Ophelia wooley (---.proxy.aol.com)
Date:   09-19-02 12:38

Hi,

I was diagnosed with sarc in 1993. I have agreed and disagreed with my doctors on my treatment. Most recently, I was giving the option to take a tapering dose of steriods, but elected not to.

I stumbled on these messages and responses because I was looking for another discussion board that I had seen. Anyway, to make a looooonnngg story short, I asked a doctor in 1997/8 about a lung transplant. He, told me that since I was otherwise healthy, no one would consider me for a lung transplant. He told me to exercise, loose about 40lbs, and the symptoms should go away.

Well, 4/5 years laters, I am probably 40lbs heavier, and do very, very little exercise because my breathing is short. (The weight came from prednisone therapy, that I have taken previously.) Since the scar tissue in my lungs will never go away and my breathing will probably continue to get worse, I am still considering lung transplantation. In fact, I am in the beginning stages of doing a research paper on lung transplant in sarcoid patients.

Trevor, the information about the conference in LA was helpful, and Kirk, thank you for putting the question on this forum. I am glad to know I did not have a "unique" idea. At current, I still think a transplant, even with the 2-2 1/2 years survival, is a better option that prednisone.

Ophelia
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-19-02 12:48

Ophelia,
Before giving up hope of a recovery, I would consider at least a 45 day trial of an antibiotic which is capable of killing granuloma-living bacteria.

Dr Mercola has found that 100mg of Minocin every other day has minimal side effects while being equally effective as the bigger doses normally prescribed. If it kills your 'microbes', you have the chance of a good recovery.

If that didn't work I would try doxycycline. And then a flouroquinolone. Every antibiotic is a little bit different, and the bugs that live in the granuloma are not susceptible to common antibiotics.

Then, and only then, would I even consider the risk of a transplant.
Talk to your Doc about it - if he doesn't want to prescribe the Minocin for Sarc, tell him you need it for your Acne

..Trevor..
 
 Re: Lung transplants
Author: Ophelia wooley (---.proxy.aol.com)
Date:   09-19-02 13:33

Thanks Trevor! All thoughts considered, except the acne. The doctor can see that as of right now, I don't have acne.

I am really tired of Sarcoidis. It cramps "my" life, however, I'm not giving up. I have seen some good questions and responses, and I have to say I am better because of them.

Thanks to all.
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-30-02 05:24

A new study has come out which sets the average life expectancy, after transplant, at only 14 months.

Despite the spin in the title: "Lung Transplantation a Viable Option..." a reading of this article certainly presuaded me that the transplant surgeon has no place in the management of Sarcoidosis.

..Trevor..
 
 Re: Lung transplants
Author: Frank (---.proxy.aol.com)
Date:   02-05-03 01:19

Subj: I would like some info on Parasite infection (relation to Pulmonary fibrosis)

Hello,
My name is Frank im from NJ and my father has just been diagnosed with Pulmonary fibrosis the doctors belive that *Sacroidosis* is the the cause of this condition He never had any difficulty breathing over the years but he did have slight (clubbing) of the fingertips
Doctors have just diagnosed him with Pulmonary Fibrosis the doctors have told him that there is not really any way to treat his condition and they told him he is considered to be in the final stages (sever scaring) and death is imenent
The form of treatment they are going to try is Prednisone but they have told him that it has serious side effects and that it will not help his condition
They also said to him that he is a prime that he would be a prime candidate for a lung transplant because he is only 49 years old


Now heres the catch He never showed any signs of respatory problems until

My father went on vacation to the Bahamas in 5/02 when he went to the Bahamas he had open sores all over his arms cause by (*poison sumac*)
well shortly after he returned from the Bahamas my fathers arm (elbow) became extremly inflammed he went to the doctors and they told him he had some sort of an infection in the bursa sac of his elbow the infection began to travel up his arm toward his heart so he was admitted to the Hospital
While they did blood tests on him for this infection they noted that his ammonia levels in his blood were extremely high for some reason
eventually this infection was thought to be killed and he healed up (This infection was later determined to be a PARASITE infection)
Now since my father had this infection he has become extremely ill over the last 6 months (The doctors have determined his condition to be Pulmonary fibrosis)
but he never showed any signs of pulmonary problems before this infection his ammonia levels were never high untill he had this infection
Now i just recently read on a web site that that if you have an large parasite infection in your body it will elevate the ammonia levels in your body to a toxic level same in his case

Now do you think all this could have been cause by a parasite? (pulmonary fibrosis) *sacroidosis*
and if so if this parasite is killed do you think it would stop the pregression of his illness?

Any info you could provide for me would be extremely useful
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-05-03 01:32

Frank,
You will find some tutorials at the top left of this page. There is one called "How a Pathologist can see Bacteria causing Sarcoidosis". Print it out and give a copy to your doctor. Also see the discussion thread "Things to remember about Minocin Antibiotic Therapy".

And read this thread through in detail. lung transplants, which extend life by only an average of 2-3 years, are not the answer for a 49 year old, in my opinion.

Please ask any other questions you may have here in this thread.
..Trevor..
 
 Re: Lung transplants
Author: Frank (---.proxy.aol.com)
Date:   02-05-03 02:01

My Father had a major back surgery back in 1996 (broken back)
shortly after surgery (2 weeks) he ended up with a major infection
they admitted him to the hospital and told him he was septic from the heart down
so they bombarded him with antibiotics for a few weeks to kill off that infection
then he was released then he was talking to a surgeon freind of his a year later He told my father that he was going to have a problem with Microbes later in life due to the type and lengh of time he was on the antibiotics

Well back to the first story (posted) about the bahamas trip
he got back and had a major infection once again they once again bombarded his body with antibiotics
Now leads him where he is now the Pulmonologist told him that he accquired this condition (sarc/pulmonary fibrosis) approx 4-8 years ago which falls right when he first had major infection/antibiotic treatment

Please if you have a problem with me emailing you for info let me know
im just having a tough time dealing with this after all you cant replace a father and most people have no knowledge about this condition
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-05-03 02:46

Every antibiotic is a little different. Similarly there are a lot of species of microbes.

When the Penicillins (eg Amoxicillin) are used to attack an infection they create the type of resistant microbe that causes sarcoid inflammation. If they are in the joints they can cause Rheumatoid Arthritis. It's often all the same cause, but widely different effects on the body.

There are only three antibiotics that we know can kill these resistant bugs. The most useful is Minocycline, used mainly for tropical diseases and Acne. Doctors often don't use this one, and so the patients don't recover. You will need to go through the list of antibiotics your dad was given and make sure that Minocycline or Doxycycline was on it.

These two are so effective at killing the resistant bugs that the endotoxins from the dying bugs can cause a Herxheimer shock reaction. There is a discussion thread about this at SarcInfo. You get very sick for a week or two, and when it goes, you are recovering.

Anyway, spend time reading all the microbe related stuff here at SarcInfo. The most common resistant microbes are the ones without the cell walls, as the penicillins attack the cell walls, and the penicillins are the most commonly used antibiotics.

..Trevor..
 
 Re: Lung transplants
Author: Kirk (---.sd.sd.cox.net)
Date:   03-06-03 20:29

Hello,

Haven't written in a long time. I go to the VA pulomonary tomorrow morning for a check up. I have had really bad news the last few times I've gone. The VA here in San Diego as well as the Phoenix VA say I'm at the point of either a lung transplant of a very short life. I have kown I had sarc since 83, and I'm sure I had it long before that, probably the late 60's. It has left a tremendous amount of fibrous growth which has hardened up over time to where I now am down to .88 of a liter lung capacity. It was about 2.46 liters 2 years ago, so is droping fast. Last month the doctor gave me a prescription for minocycline, but I have been very busy closing my business down because I can't work anymore etc, and I have been actually quite afraid to take it because of the testimonials on the herxheimer flare. I live alone right now, so don't have anyone in case of emergency. He also started me on 20mg of prednisone a day, which I have fought for a long time. His thinking is at this point I should just make myself feel as good as possible with the time I have left. I have mentioned this before, but didn't get an answer, is there any way that the capacity can be halted, or better still reversed to a point? I know I can kill the bugs, but at this stage of the game, is it going to make a whole lot of difference in the life I have left? I understand there aren't many that reach the point I have. The last CT scan of my lungs showed a tremendous amount of damage.

My arthritis is a lot better since being on the pred, but don't notice any difference otherwise. Have been on it for over 3 weeks, and have lost about 5 pounds since starting. Haven't had any increase in appitite or water retention etc.

Kirk
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-06-03 20:36

Kirk,
Are you on Oxygen?
Do you have your other PFT data? The FEV1 and the FVC, for example?

Yes, pulmonary function can be regained after remission. Not all of it, but a little. I have regained over a decade, being back at my 1989 PFT levels. Moving around is a heck of a lot more comfortable now. I can even climb staircases again.

..Trevor..
 
 Re: Lung transplants
Author: Kirk (---.sd.sd.cox.net)
Date:   03-06-03 20:58

Hi Trevor,

Yes, I have oxygen. I don't have it on all the time. I often use it when doing chores around the house and have it on for several hours during the evening while watching TV etc. I do take a tank with me when I travel etc. I can do stairs if I take them slow. I carried a computer monitor out to someones car this afternoon, and I had to set down and catch my breath for a min. afterwards before I could carry out the CPU.

I have the PFT results for 1996 and 2000, but I don't have the results I don't believe from the last one. I will ask to get a copy tomorrow morning. Let's see, in 00 the FVC was 2.13, % ref was 52, FEV1 was 1.07, %ref was 35. In 96 it was FVC 2.35, ref % 56. FEV1, 1.24, ref % 39.

Kirk
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-06-03 21:10

Kirk,
My FVC was about the same as yours, FVC 2.28, (57%) but my FEV1 was 1.62, (50%). My FEV1 jumped 25% within a few weeks of the Minocycline kicking in. Try to get your last set of PFT data, it is hard to believe that your FVC had dropped to 0.88L

Don't forget to ask your pulmonary how many years he thinks you will have after a transplant - you can read the details further up in this thread, but 2.5 years is a typical 50% survival period after a lung transplant.

If you can still carry computer monitors, even with distress, I would doubt that a transplant is the best way to go.

In any case, the transplanted lungs will also develop the CWD bacteria, if you survive that long (that is meant in the medical clinical sense, not in any personal sense). You can read about that if you get a copy of the full paper by Johns Hopkins' Dr David Moller from the VA Med library tomorrow. The short reference is here. Print it and take it to the librarian to see if they can get you a full copy. That article talks about how the bacteria spread to transplanted organs.

..Trevor..
 
 Re: Lung transplants
Author: Kirk (---.sd.sd.cox.net)
Date:   03-06-03 21:27

Trevor,

I did ask him last time I was there, about 4 weeks ago, and he said maybe 5 years. He said that is longer than I am going to live if I don't do it. I'm not convinced!!! I can be rather fiesty and determined to prove someone wrong! I still want to do the minocycline and get to exercising again, and I have confidence that will help a lot. I just don't have the space in this dinky condo, which I just sold. I am moving back to my house in Phoenix next week and will have a whole room to do that in. Just bought a soloflex machine on ebay.

I will let you know what those last tests were. He is very good at listening to me, so sure he will let me have them.

Kirk
 
 Re: Lung transplants
Author: Susan (206.74.142.---)
Date:   03-07-03 06:47

Hi, I agree with Trevor. If you get a lung transplant, not only will you be on Prednisone, but also harmful immunosuppressives (from what I've read), not to mention the other risks involved. I would see another pulmonologist or GP. From what I've heard from other sarcoid patients, your lung functions are really not that bad -- my pulmonologist says that she sees patients who have between 14 and 16% lung function - all smokers!!
 
 Re: Lung transplants
Author: Kirk (---.sd.sd.cox.net)
Date:   03-07-03 08:31

I've seen at least 4 doctors so far, and will see another in Phoenix in April. As I said, I'm not convinced it's the thing to do. It's not like having your tonsils out in the first place!!! I have had several people tell me of friends and coworkers that in the last several months had transplants, and they are back to work and functioning well. One was out and about driving around within 4 weeks, which I thought was amazing. The other was back to work shortly.

I'm off to the pulomonary doctor right now.

Kirk
 
 Re: Lung transplants
Author: Kirk (---.sd.sd.cox.net)
Date:   03-07-03 15:09

Trevor,

Well, got the results on the last PFT. FEV1 was .88, FVC 1.84. Not so good.

The CT scan impression was: 1) End stage sarcoidosis with left upper lobe conglomerate masses. Pericicitritial emphysema, bulloy changes, traction bronchiectasis, and right basilar pleural parenchymal scarring.
2) Marked retraction of both central pulmonary arteries cephalad.

Stage IV Sarcoidosis

The doctor did say that, no, at this point I wasn't ready for a transplant, but that I should consider putting myself on the list. It will take maybe several years, and then I can determine if it is something I really want to do at that point. A lot of changes take place now in a 2 year span in the medical field.

In the meantime, I'm retired and I'm going to travel and do what I can to prolong my life, and what I "want" to do and enjoy!!!

Next is exercising and minocycline!!!

Kirk
 
 Re: Lung transplants
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-07-03 15:13

Kirk,
Yup. Minocycline sounds like the minimum risk approach to me.

..Trevor..
ps: didn't you even coax any ARB's out of him?

 
 Re: Lung transplants
Author: Kirk (---.sd.sd.cox.net)
Date:   03-07-03 15:25

Trevor,

Actually, I didn't even think of it! I was feeling so good this morning I wasn't focusing I guess. I have an apt Apr 24 I believe, so can hit them up for that then.

Kirk
 
 Re: Lung transplants
Author: Margie Comstock (---.dialup.mindspring.com)
Date:   03-12-03 17:08

Kirk,

I am taking a wonderful Pulmonary rehabilitation Class at my local hospital. Our teacher just was discussing Sarc and O2 use. She suggested that a person should use it all the time and not just when you feel like you need it. The O2 helps heal the lungs and give them the strength to continue breathing. It also gives your right ventricle a break because it doesn't have to pump so hard to get what oxygenated blood you have to your body. Talk to your Pulmonary doctor and see what he says about that........Good Luck....... Margie Comstock
 
 Re: Lung transplants
Author: Kirk (---.sd.sd.cox.net)
Date:   03-12-03 19:41

Margie.

Thanks! I do have it on in the evening for quite some time. I have 50' of tubing so can walk all over. They suggested I keep it on during the night, but haven't done it yet. I do feel a LOT better since using it. I have more energy, and just feel better in general I think. I will ask about rehab classes again when I go next time. They were supposed to start them here in San Diego but didn't. I'm moving back to Phoenix this Friday so will ask them there about it. I stay as active as I possibly can. I'm going and doing all the time. Some of my friends are amazed. They don't have these problems and can't keep up with me sometimes. To me the key is keep moving and doing!! Enjoy everything possible.

Kirk
 
 Re: Lung transplants
Author: DONNA (---.mts.net)
Date:   06-06-03 23:36

Hi My 10 yr old grandson has just been diagnosed with bronchiactosis. His lungs are functioning only 38%. He just come back from the hospital in the city, and they said there is not much they can do for him. He will be on heavy antibotics, as he has staff infection, also has bad acid reflux, so has to sleep sitting up, and has asthma. He is struggling so to breath, it breaks my heart. I wonder why the Dr. hasn't said he should be on oxygen. They have to pummel his back three times daily. We are beside ourselves at the thought of losing him, Can you give me any advice on the oxygen thing? any info would be appreciated.---Grama Donna
 
 Re: Lung transplants
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-07-03 03:17

Hi Grama Donna,

You are probably referring to bronchiectasis. You should ask the doctor about supplemental oxygen. She/He may have a reason for not prescribing it, but it's a question worth asking.

Best wishes,
Belinda
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This is an archive site, membership and posting are no longer allowed.

Historical perspective on Sarcoidosis:


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

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