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 The material here provides useful background, but most of this site is now out-of-date.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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 Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (207.175.253.---)
Date:   04-04-02 16:20

(Update: See also latest info on Minocin dosage, etc, at "Minocin found to treat Lymph, Skin & Lung Sarcoidosis "

30 paraffin-embedded biopsy slides from sarcoidosis patients were examined in Sweden. Although these slides had previously been declared to be 'empty' of any sarc-triggering substance, they found that 26 contained fragments of an infectious bacteria, 'Rickettsia Helvetica'.
[Here is the PubMed summary of the study)

http://www.sarcinfo.com/rickettsia.gif

This is an image from a scanning electron microscope of a cell in a granuloma from the autopsy of a Swedish sarcoid patient. You can 'clearly' see two Rickettsia bacteria in the process of replicating (by dividing into two)(the arrows). They are living and replicating in a granuloma, the most inhospitable environment in the human body! The dead nucleus of the cell is the red mass at the bottom. Magnification x84,000.

This discovery is significant for several reasons
1. There had been no clinical sign of the bacteria in the patient's blood. They had been hiding inside soft tissue where they couldn't be discovered by normal technologies.
2. It is the first published use of forensic DNA PCR techniques in a sarcoid biopsy
3. The success rate for Rickettsia in old, paraffin, biopsy slides is very high
4. The presence of Rickettsia indicates the use of minocycline to treat the active stage of sarcoidosis

This seems to prove that sarcoid can be caused by a hypersensitivity reaction to a blood-borne organism, and the trigger does not need to be inhaled.

Folks, this is an exciting time. Print out the above two references, and discuss them with your doctor. Remember that this bacteria is a 'gram-negative' bacteria, and is difficult to treat ("The disease can recur for years, so patients may need to be monitored")

Update: Other bacteria have now been implicated as a cause for sarcoid inflammation, including Mycobacterium Tuberculosis

..Trevor..

More info on these bacteria are at
http://www.merck.com/pubs/mmanual/section13/chapter159/159a.htm

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: elaine emmi (---.client.attbi.com)
Date:   04-04-02 20:55

wow Trevor!

How interesting! I lived in southern Indiana from the age of 6-29 and used to pull the ticks off my body by the handful! Especially as a kid, it was a way of life. Play in the woods and get ticks, run in the creeks and get leeches.

Wonder how many of us have ticks in our lives?

Elaine

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: pages2 (---.kc.rr.com)
Date:   04-05-02 12:51

re: R. rickettsi giving Rocky Mountain spotted fever > >

This makes since, our son had Rocky mountain spotted fever years ago.
Now that I look back on it I wonder. Also I am sure that I have cared for patients with this. Not sure if a recluse spider bite would also apply I had some kind of bite and had a tetenus shot after that. Also I cared for a patient who had multiple admissions from RS bites.

Today Dr. J wrote to me that the same products that have been found in others with lung cancer are the same products that are found in others lymph nodes such as mine.

SS

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (207.175.253.---)
Date:   04-06-02 19:47

"Molecular tools in the epidemiology of tick-borne bacterial diseases"
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11282521&dopt=Abstract

"Approche moléculaire de l'épidémiologie des maladies bactériennes transmises par les tiques"
http://www.john-libbey-eurotext.fr/articles/abc/59/2/177-82/fr-resum.htm

[Molecular tools in the epidemiology of tick-borne bacterial diseases]
[Article in French]
Parola P, Raoult D. Unite des rickettsies, CNRS UMR 6020, Faculte de Medecine, 27, bd Jean-Moulin, 13385 Marseille cedex 5, France.

{Amplified gene PCR tools} have been used to detect rickettsiae in ticks. In Ixodes ricinus ticks collected in France, we detected for the first time there an emerging pathogen, Rickettsia helvetica, and an Ehrlichia sp, closely related to the agent of human granulocytic ehrlichiosis...

(It would have been nice if Medline had translated the French correctly instead of discarding the words "gene PCR")

..trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-06-02 21:02

The Rickettsia helvetica were identfied as a separate species of the spotted fever rickettsiae only about ten years ago, and described as having "unknown pathogenicity."
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8102245&dopt=Abstract

Rickettsia helvetica was identified in Ixodes ricinus ticks in Sweden in this 1997 article.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8968916&dopt=Abstract

Association of Rickettsia helvetica to disease in humans (perimyocarditis, causing sudden death) was documented in the Lancet in 1999. Note that chronic interstitial inflammation was identified, and genetic material from R. helvetica was detected in the pericardium and pulmonary hilum. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10513711&dopt=Abstract

In 2000, this report from France says that near the area of one patient who tested positive for Rickettsia helvetica, a survey of forest workers showed a 9.2% seroprevalence against R. helvetica (9.2% of the population had antibodies to the bacteria in their blood, ie, they had been bitten). This organism may pose a threat for populations exposed to Ixodes ricinus ticks, according to the report.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10905974&dopt=Abstract

Not to confuse you, but consider that Lyme disease, which is also a tick-borne disease, was identified only a few years ago. It was thought at first to be an uncommon disease.

Belinda

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (207.175.253.---)
Date:   04-06-02 23:58

Belinda,
Yes, in my case at least I feel I can now move on. There were a number of things that were most likely to have caused my stage III pulmonary damage - I had a tiny contact with beryllium, I had a BCG, and I had a terrible cough for 6 weeks after returning from an army camp.

I am in no hurry to confirm it (I can wait till the DNA PCR becomes more widespread), but I am now certain it was the latter. There was a disease called "trench fever" going around the camp, the medical tents were so full that I was confined to my own tent for treatment. At the time they thought this was caused by a "Rickettsia quintana" infection, but in the early 80s the bacteria's name was changed to "Bartonella quintana". A fine point, the two organisms are so very much alike.

So now I also know why I have to disinfect scratches from my cats so diligently - they carry "cat scratch disease", another Bartonella strain.

Mayo Clinic gave a second opinion on my biopsy slides, no beryllium, so that is not an issue. Most likely the infection.

OK, so much for that. That paper from Sweden about the 30 biopsy slides was extensively peer-reviewed, took nearly a year to get it published. And it withstood the firestorm of criticism that I bet was levelled at it during that year. So, coupled with the tetracyclines paper from France and the sarcoid caused by tuberculosis, I am accepting as fact that there almost certainly really is something at the center of my granuloma, some DNA material that my body has mistakenly encased in granuloma. So now I can concentrate on the other issues affecting our lives while the medical profession takes its customary decade to "get the word out".

I am working on getting rid of the dental inflammation that has hung around in the background for all my life - am in the middle of a week's antibiotics course right now. Knock it down, keep it down, and move forward. And knock down any other infection as quickly as possible.

Seems easy enough to stay out of further trouble...

It's like a huge load has gone from my shoulders. Does anybody else feel the same?

..Trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Ken (---.proxy.aol.com)
Date:   04-08-02 17:03

Some precautions if I may. This acknowedged and acceptable study in the form that we have seen it does and does not answer some of my questions. First I am extremely excited that there are reputable studies being conducted. If the tick-borne bacteria was the only thing they were looking for and having found it, does not include what else may have been there that may or may not have had an influence as to the granuloma formation. Was this bacteria primary or secondary to the formation? What I appreciate most about this study if taken as written is the acknowedgement that there is more than one causation trigger as they did not find the bacteria in 100% of the samples. And if accepted as written could explain the source of the "pine tree" myth that has confused the issue for so many years. Great information. Let's keep up the debate and discussions.

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (207.175.253.---)
Date:   04-08-02 19:34

Ken,
There are at least two known bacteria whose dead fragments have been shown to cause sarcoid granuloma (trying to encase the foreign DNA). Those are Rickettsi Helvetica and Mycobacterium Tuberculii.

Since the Swedish researchers were using PCR techniques looking for the foreign DNA from Rickettsi, the four slides that did not have the Rickettsia DNA may have been Mycobacterium Tuberculii or another bacteria whose DNA had not been sequenced into the PCR test.

Or they might have had a heavy metal in them, although I think that is unlikely since the Swedish group used a scanning electron microscope to verify the shape of some Rickettsia fragments.

There are lots of things that can cause sarc granuloma to form, but now we know that granuloma which were previously thought to be "empty" in fact contained foreign DNA material rejected by an overactive immune system.

In a typical sarc patient's body it is reasonable to expect to find some granulomas having been formed after inhalation of a foreign body and (now) other granuloma formed by biological challenge.

No longer does sarc have to be "auto-immune" in order to make sense. We now know that there is some foreign DNA in sarc granuloma that we couldn't see before and which PCR now enables us to see. Sarc is a true "immune" reaction. That discovery in itself is a comforting thought "Auto-immune" is a concept which has previously worried me a little

Since no metals were found in the granulomas from my biopsy, or in the second opinion examination of the slides by Mayo, the question has always been "what caused my body to react in this way" and "how do I stop it happening again".

Now I know how it most probably happened. For me, at least, this is closure.

Sincerely,
Trevor

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Ken (---.proxy.aol.com)
Date:   04-09-02 10:04

Trevor- You say that almost as if you are retiring from your work and investigation? If I had your abilities to understand all this "stuff" boy would I be asking some questions. Like...1) Not everyone exposed to 'Rickettsia Helvetica' bacteria has a sarcoid-like illness. Why? 2) What is the genetic and ethnic history of those studied 3) Could the blood-borne bacteria explain the multi-systemic forms of sarc versus only pulmonary? 4) What were the ages and sexes of those studied? 5) Could this discovery lead to an inocculation as prevention? 6) Could a skin reactive test determine exposures? And many more. So come on dude, get back on that keyboard and get busy!!

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (207.175.253.---)
Date:   04-09-02 10:43

Ken,
Retiring? Nothing is further from my mind right now. Heck, it took me 50 years to shake off this sarc monster, I deserve at least another 50...

There have been a number of loose ends in my understanding of how sarc appears, remits, and progresses, and this new data, in a period of about 3 months, has tied up all those the loose ends. First there was the TB data. That was interesting, but we know most sarc patients have not caught, or been exposed to, TB. Then came the Minocyclin reports about Acne bacteria. And finally the study showing yet another bacteria (rickettsia) present in the granuloma.

Mycobacterium Tuberculii
Propionibacterium acnes
Rickettsia

Taking your points one by one.
1. Not everybody exposed to the bacteria has illness.
Answer: only those who have a particularly sensitive immune system fail to assimilate the bacterial DNA after the organisms have been killed by antibiotics.

2. What are the genetic factors
Answer: still to be defined. I am confident the ACCESS study and the Genome computers will solve this problem within the next few years

3. Could we now be seeing why sarc can be systemic?
Answer: Yes, and also why it progesses in some patients and not in others. The research on Lyme disease shows how hard it is to prevent recurrence of infections such as these. At least Lyme patients are being treated with tetracyclins, whereas most sarc patients only get medications which reduce the body's ability to fight bacteria (pred and mtx).

4. Ages and sexes
Answer: I am guessing they are probably not relevant.

5. Preventative Innoculation?
Answer: probably not. I think there are many triggering organisms that will be found once the PCR testing becomes more widespread. More importantly, if the sarc patient's body rejects the DNA from dead bacteria, there is a chance that it might become inflamed from the "killed" bacteria that are usually part of an innoculation procedure. The BCG has been suspected for some time as a cause of sarc for this very reason.

6. Skin reactive test?
I have no idea. I never believed that they worked reliably. Never studied them.

The biggest thing, however, is that once the dust settles, I expect that physicians will have an alternative default treatment to prednisone therapy. Pred is often prescribed because the doctors are concerned that they need to be "doing something" to help the patient. Giving antobiotics is much safer than prednisone, and, at this point, looks to be equally as likely to improve prognosis, IMO. It will take a while to develop the therapeutic regimes, especially as I sense that many in the medical profession will delay such a huge change in medical thinking about sarc for as long as they can. They will want to be "absolutely sure". While their patients continue to suffer...

Based on what we already know, I believe a course of Minocycline, Doxycycline or Erythomycin ought to be part of the treatment regime for every sarcoid patient. What harm is it going to do? Heck, they freely give out Erythomycin to help kids control zits...

..Trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-09-02 21:15

Trevor and Ken,
I can't pretend to know what all these studies mean, but I wanted to add that there have been studies to identify a (TB myco)bacterial source of sarcoidosis. Here are some:
A search for mycobacterial DNA in granulomatous tissues from patients with sarcoidosis using PCR
Detection of M. tuberculosis DNA in sarcoidosis
Experimental inoculation of laboratory animals with samples collected from sarcoidal patients
Belinda

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (207.175.253.---)
Date:   04-16-02 10:24

I have now read a copy of the full text (10 pages) of the Rickettsia article, and it certainly seems to have been well done. They used a scanning electron microscope to view the Rickettsia organisms, and even have a photograph showing two Rickettsia DNA cells in the process of dividing (replicating).

After looking at the electron microscope photographs it certainly appears very likely (IMO) that the granulomas were triggered by the Rickettsia DNA fragments.

The authors pose an excellent question in their final sentence: "whether sarcoidosis is caused by a number of agents, and, therefore, is no longer a classic 'disease' but rather a 'syndrome'"

That would seem to make sense...

..Trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Ernst Achterkamp (---.adsl.xs4all.nl)
Date:   04-27-02 04:46

Hello,

Trevor can you tell me why symptoms seem to become the disease in this discussion?

Isn't it safer to say we can't get TB, ACNE or Lyme as sarcoidosians?
A survey of how many of us have or have had these bacteria related diseases could tell us more, I think.
I am the editor of the boeck site here in Holland and one of our sarcoidosis patient members was treated for ACNE on her chest with no result!

On this matter can we predict what the next DNA finds will be in granulomas on the basis of these coexisting of illnesses we still have with sarcoidosis?

Greetings,
Ernst

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (207.175.253.---)
Date:   04-28-02 07:22

Ernst,
For three decades we have known that Tuberculosis can progress to Sarcoidosis. This review paper from 1998, "Can tuberculosis cause sarcoidosis? New techniques try to answer an old question" references some of the old studies, together with some studies that were the first to use DNA PCR techniques to examine why such a progression is possible.

The logic goes thus: "The Mycobacterium Tuberculii infections causes a Tuberculosis infection. After the TB has run its course, and the bacteria have have been killed off, then the sarc patient's body continues to refuse to accept the (now safe) foreign DNA from the (killed) TB bacteria. The patient's immune system creates a granulatomous reaction trying to encase the remaining bits of bacteria. On biopsy, granuloma characteristic of sarcoidosis were discovered".

Researchers hoped that they had found the "cause" of sarcoidosis and many biopsies were performed on patients, who had never had TB symptoms, looking for the telltale signs of dead Mycobacterium. A very small proportion of sarcoid patients were found to have any signs of Mycobacterium Tuberculii, and so the researchers went back to the drawing boards.

Other bacteria has been clinically found in sarc patients, including Propionibacterium granulosa, Propionibacterium acnes, and Herpes zoster.

Additionally, we must not forget that sarc granuloma are commonly found to be encasing man-made substances, such as Titanium and Silica.

My current thinking is that there is no single "cause" for sarcoidosis. A sarcoid patient has a genetic pre-disposition towards an over-active immune system. This genetic pre-disposition may be developed late in life as a result of gene mutation, or it may be present from birth. When faced with a variety of immune challenges, the sarc patient's body produces macrophages and granuloma which try to encase and immobilize the foreign substance.

The significance of the new results from Sweden is that a new bacteria has been found, in the actual sarcoidosis granuloma, and it has been found with a very high frequency (36 out of 40). This is suggestive that the Rickettsia actually caused the granuloma to form.

Suddenly a whole new spectrum of possible events which can trigger sarcoidosis is emerging, and it looks like sarc will soon lose its unknown status as a "disease of unknown etiology" and become an immune condition that we more fully understand.

Although such discoveries open up new options for treatment of patients whose sarc is active and progressing, it is important to note that these bacteria are very virulent, and very hard to kill. Some researchers have reported that a combination of the anti-microbial Plaquenil with the Tetracycline antibiotics has proved quite effective. In any case, it cannot be expected that a 'standard' course of 'standard' antibiotics is going to have any long term effects on active or inactive infections that may cause a sarc patient to relapse. It is going to take a concerted effort to get rid of these bacteria, just as concerted efforts are usually needed to get rid of Lyme disease and Bacterial Meningitis.

Additionally, this paper notes that "Patients who had received intraarticular steroids".. and probably prednisone tablets .. "prior to antibiotic treatment, required significantly more courses of antibiotic treatment"

I expect that an active bacterial infection will only be found in a minority of long-term sarc patients (even though this paper suggests that tetracycline can be effective against skin lesions). In my opinion, the symptoms that most patients are experiencing are bio-chemical in nature, and seem to be due to the over-production of macrophages and cytokines by the over-active immune system istelf.

Finally, some researchers suspect that a number of common skin diseases might also be related to the Propionibacterium acnes bacteria. Only time will tell whether other diseases with symptoms very like those of the tick borne disease (MS, Parkinson's, RA) will be traced to a bacterial genesis.

..Trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Rick (---.in-addr.btopenworld.com)
Date:   05-12-02 14:45

Rick from the UK sarc mailing lists here...
We don't have the prevailance of ticks or Rickettsia here in the UK, but I guess that bed mites or fleas could carry a similar bacteria.
But are we talking about a bacteria that our bodys are killing and we are getting reinfected or a bacteria that we have for ever?

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-12-02 16:21

Rick,
Probably both types. Some patients with just dead DNA to be encased and other patients with active (but undetected/undetectable) bacterial disease.

If you look at the photographs in the fuill text of the Rickettsia paper you will see both cases in the Electron Microscopy of the granuloma. One granuloma (figure 2) has a Rickettsia in the act of replicating. Other sildes are just isolated fragments.

..trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Caroline (---.win.org)
Date:   06-20-02 10:35

Trevor,
I REALLY need your opinion! I will be calling my doc as soon as I gather some information and assure myself I am not crazy. I have been following this bacteria thread carefully because I groomed dogs. (well actually all of the threads). I have somewhat focused on my exposure to fleas and ticks. But now I remember something else. This is the story as briefly as possible:

I have had neuro sx. for a number of years dating back til around 96, this is when I was first treated for Iritis and at that time I already had the gimpy walk but no where as severe as i have now. My sx. continued to worsen until pulmonary problems appeared. The breathing led to a broncoscopy/biopsy in May of 2001. After the procedure and a diagnoses was made of stage 4 sarc., my pulmonary put me on 60mg/day of pred. About 10 days later she called and told me to stop immediately, that something showed up in a culture.

I was then sent to a infectious disease doc. (ID) The ID doc said the bacteria (?) found wouldn't be affected by pred and go back on it. I oonly saw the ID doc once. I had forgotten completely about it but had a 'nagging' feeling while reading about bacterial causes. I had no record of the ID doc's name or even remembering her name.

I called the pulmonary doc to get the ID doc name and if possible the name of the bacteria she found. well, the pulmonary doc is no longer in practice in this group. the doc who now is in charge and has my records, shows no copies of records or a referral that i ever saw this ID doc. they suggested that i call my primary. maybe he has a copy of the record. No such luck -- no copy or note that i even saw an ID doc.

i then called my insurance co, surely she got paid! the ins. co gave me the exact date, phone number and address. I called her office and the gal in records gave me the name of the bacteria. it is: geotrichum.

while 'searching' on google, i have found that geotrichum can cause CNS neuromuscular disorders, iritis and vasculitis. I am fighting back tears that this could be the cause of my problems. if so - maybe there is help for me.

in my previous house we had water in the basement on occasion which caused mold. also i loved working in the soil gardening. I just can't find anything of a nature that i can send my neuro. maybe i am totally off base here. just plain being to hopeful. please, please tell me what you honestly think of this. i need a knowledgable opinion of geotrichum as a potential culprit.

thank you so very much, caroline

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-20-02 13:27

Caroline,
Isn't life amazing. It just goes to show that we should NEVER give up until we lick this affliction, the syndrome called sarcoidosis.

Cutaneous geotrichosis in a dog... hmm...

If you were diagnosed with a fungal infection (such as geotrichosis) it would have immediately nullified the sarcoid diagnosis of your primary doctor. That is probably why the files are missing from his records (IMO).

It sounds as though you were never given an extended course of antifungals or antibiotics. This article explains that the organism is hard to kill, and that it is most virulent in immunocompromised patients (such as those taking corticosteroids). The steroids allow the bacteria to multiply in the soft tissue, while suppressing the body's immune response so as to hide symptoms of the problem. It later becomes much harder to select drugs that will reach the soft tissue and effectively kill the organism.

And that leads us to the next problem. You have probably seen the thread linking concurrent use of prednisone and cipro to muscle damage, so make sure that whatever you are given for the geotrichosis doesn't interact with other drugs you are on. Google is a good resource, but the Pubmed search engine is better for this kind of study.

Caroline, a brilliant piece of memory and detective work. You are close to having this thing licked... Work on eliminating any active organisms, and then you should be able to more easily deal with the remaining sarc symptoms (if any) from dead DNA.

..Trevor..
ps: If you send me an email (click on the 'Trevor' at the very bottom of the page) I will send you a full copy of the Rickettsia article for you to give to your doctor (so that you don't get too many blank stares)...

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Caroline (---.win.org)
Date:   06-20-02 14:06

Trevor,
THANK YOU! I feel a ray of hope. I had forgotten about a previous neurologist, called her and she has no record either.

As an aside; the pulmonary doc who initially diagnosed sarc from lung x-ray is the same who performed the broncoscopy/biopsy. She left the group practice supposedly to work in the ER. My records were passed to a colleage in the same group. There is absolutely no record of my seeing this ID doc and she is the referring doctor!

now am i being paranoid? why is she no longer part of this group? i really wonder at the true reason.

i have called my neuro at the university hospital and he is supposed to call me back tomorrow am. i also called my internist and have a face-to-face with him monday. i want a course of antibiotics. i feel my internist will be much more open to my opinions and thinks a bit more 'out of the box'.

i will keep you posted on this current mystery. i have been reading all afternoon. some sx. that can be caused by this fungus is: iritis, lung infections that mimic TB, small vessel disease/vasculitis, and neuromuscular disorders. I have every one of them!! As an aside that i stumbled on although not looking at vetrinary medicine, is that upon autopsy of calves infected with geotrichum they were found to have granulomas of their vital organs.

caroline

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-20-02 18:04

Caroline, It seems that these organisms become especially resistant to the normal anti-fungal drugs. Nevertheless you need to have some good ammunition to show to your internist as to why you may want antibiotics rather than a specialized antifungal. If you are bent on that course, I would recommend emphasizing some of the reports (print them out) of favorable sarc outcome in patients treated with tetracyclines. I would also note that the anti-microbial Hydroxychloroquine has been used on sarcoid patients with some good results. I can find no systemic biochemical reactions that would make it effective, so I am assuming that its effectiveness comes from treating infections in the occasional patients who have undiagnosed ongoing infection. It can have more serious side effects than the tetracyclines, however.

I would note that there are many new antifungal drugs, and that if the diagnosis of the fungal organism is unequivocal, you might be better following the advice of your doctor if he/she recommends treatment with a specialist antifungal rather than either of the above two 'sarc drugs'.

..trevor..
ps: Can you give us the link to the granulatomous autopsy of calves?

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Caroline (---.win.org)
Date:   06-21-02 10:58

hi Trevor,
I have been looking through my 'history' to find many of the articles i mentioned in my searching. I want to show them to the doc. i am kicking myself that i didn't bookmark them. i was reading so intently and very upset at what i was finding. i will keep looking for the 'calves and granulomas' and post it. i also want it for my records!

so far i haven't heard from my neuro. i am re-reading all of the records that i have. I found it interesting from a radiologists report on a CT i had; he states on of the differential diagnoses to consider: 'atypical' sarcoidosis. atypical to my knowledge means un-typical -- am i wrong about this?

i will keep looking for the granulomas paper.

caroline

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-21-02 13:34

Caroline, You may also want to look up this paper, it describes how Vit D abnormalities can cause neuromuscular problems.

Make sure you get both Vit D hormones measured, and then get the raw values from Doc.

Have a great weekend,
..Trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Caroline (---.win.org)
Date:   06-22-02 07:45

Hi,
I spoke to my neuro yesterday regarding the finding of 'Geotrichum' in a culture from my broncosopy/biopsy about a year ago.

He seemed ambivilent that this fungus could cause any problems and prefaced his comments stating he wasn't familiar with geotrichum. He really didn't think something found a year ago is relevent to my current state of health - that I should discuss it with my new pulmonary doc.

Of course I will do that and I also have made an appt. with my primary to discuss this with him monday.

I am unable to find any research or abstacts that address the length of time and progression. i.e., that this could cause a slow (years) progression of sx. But immunosuppression would not be what to give one with an active bacteria or fungus. I will keep searching.......life must have hope!

Caroline

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-22-02 10:04

Caroline,
Figure 2 of the full Rickettsia paper shows a replicating Rickettsia organism inside a destroyed interstitial cell from one of the Biopsy slides. The authors commented briefly on it, but did not waste words on explaining what any moderately intelligent doctor should realize - that there was a living Rickettsia organism inside the cell at the time of the biopsy, and its replication (by splitting into two) was frozen for all time on the biopsy slide.

But the authors of this study did not hit you in the face with it. Just one sentence was used to point out that the nucleus of the cell had been destroyed by ongoing undetected infection in an area of lung tissue that clearly was not being reached by any antibiotic agents.

They assumed that the reader had some knowledge about infection, and that he/she had enough intelligence to be able to deduce the implications of this finding without the authors wasting space explaining them in detail.

Unfortunately, as you are finding with your neuro, very few doctors have been able to comprehend the implications of these findings. In some cases it will take decades for the light to dawn, IMO.

Prednisone allows the organisms to 'escape' into the lung tissue.This paper notes that "Patients who had received intraarticular steroids prior to antibiotic treatment, required significantly more courses of antibiotic treatment"

No it doesn't specifically talk about the etiology of fungal infection, and doesn't hold the reader's hand while spelling out the similarities and differences. After all, doctors are supposed to have gone through years of schooling so that they instinctively "know" these things without being spoon-fed.

..Trevor..
ps: Tick Borne Pulmonary Disease contains a lot of information your doctors should already know. Print it out for them, will you?

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Caroline (---.win.org)
Date:   06-22-02 15:00

Trevor,
Yes, I am taking copies! You had emailed one to me before which I had printed. Thank you so much for this forum. It gives the encouragement that 'they' don't know it all by providing so much information and education.
Caroline

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Caroline (---.win.org)
Date:   06-23-02 22:52

Trevor,
I finally found 'one' of the links that specifically mention granulomas from geotrichum.
http://education.vetmed.vt.edu/Curriculum/VM8334/TomInzana/Lecture7.html

Caroline

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Caroline (---.win.org)
Date:   06-23-02 23:35

Yet another fungal cause of granulomas
http://path.upmc.edu/cases/case211/dx.html

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: pages2 (---.kc.rr.com)
Date:   06-25-02 12:20

Geotrichum penicillatus

When I looked up Geotrichum one article mentioned penicillatus that made me think of penicillin, which then made me want to look up Geotrichum and penicillin. his is what I found. My question is does this mean that this company uses enzyme mixtures of bacteria to make a crystallized medication?

penicillin Geotrichum

Scientists at Altus have invented a breakthrough technology that transforms crude enzyme mixtures into pure, stable, heterogeneous catalysts with high activity. This is accomplished by crystallizing the target enzyme, then chemically cross-linking the molecules to form a CLEC® (cross-linked enzyme crystal). Crystals of lipase from psuedomonas cepacia (left) and penicillin acylase (right). (250X).

Lipases Candida rugosa, Geotrichum candidum, porcine pancreatic, Psuedomonas Cepacia, Penicillin Acylase E. coli

The majority of other mycoses (fungal infections) do not give rise to spontaneous diseases in the most common laboratory animals. In order that they should, they must first be inoculated into very sensitive organs like the peritoneum or hyporeactive ones like the central nervous system.
Nocardia, Blastomyces dermatitidis, Balstomyces braziliensis, Coccidioides immitis (very pathogenic for man), Histoplasma capsulatum, Criptococcus neoformans, Geotrichum candidum, Sporotrichum Schenkii, and the Mucorales behaves in this way.

Another thought is that healthcare workers care for many people who have yeast infections. Maybe this is an issue?
S.S.

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: pages2 (---.kc.rr.com)
Date:   06-25-02 12:42

Then look at google

many articles

crystal penicillin aluminum silica

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Thomas Matz (---.mis.stn.net)
Date:   08-03-02 06:58

Halleluya:

When I read this info I sat for a few minutes immobilized in stunned silence as the information slowly absorbed into my "relief" data bank somewhere deep in my brain. Words cannot describe how much this means to me ....to finally put a "face" to the word Sarcoid .... a "disease" that has occupied my time, my life and my thoughts for the past 25yrs (I am now 60). I have suffered with all the imaginable traits of sarcoid but the most rewarding here is to finally go into a doctor's office with something in hand....... something now that cannot be ignored......and I did just that yesterday.....I have a new computer and I "burned" this web site and the other two web sites that are "links" in this story onto a CD rom disc, and took it into my doctor. His reaction was stunned.....he was unaware of these developments and his whole attitude changed right there.... although he couldn't use my CD at that moment, he tried, but his system is a Mac and was not running the software to open it, but I was able to tell him, in layman's terms, what the discovery was and his whole demeanor was more or less restrained shock.......he couldn't wait to get home last night to get into the CD and see the details on his home computer and from there put me on the Tetracylcine therapy for the many lesions that are on my legs. This is unbelievable.....and I have e mailed another friend who has Sarcoid and told him.....he was unaware as well of this news and he is our President of the Canadian wing of Worldwide Sarc. Society and even he didn't know.......so .... as you can see.....again words cannot describe what this means to me and I am sure thousands of others who now can do the same and now let the medical science "focus" on new and better treatment of this now "exposed enemy." The relief is enormous....... thank god for this forum......we have all stepped out of the tunnel of darkness today into the "blinding" light of hope and renewal.

Thomas M.
Orangeville, Ont.

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-03-02 10:22

Thomas,
It has been several months since I started this thread and a lot has happened in that time. For 20 years I have been trying to figure out why some Sarc patients have their Sarc Inflammation disappear and others do not. Nobody has ever tried to figure out the biochemical processes that might be causing remission. The discovery that bacteria is common in granuloma has now made the whole thing clear to me, and I am busy writing it all up.

Show your doctor this link (click here) on how to prescribe Minocycline so as to make sure that the bacteria hiding in your soft tissue are given the biggest headache it is possible to give them

At this point every sarc patient must assume that bacteria is causing their inflammation, as you have done. From a scientist's point of view sarc inflammation is unlikely to be caused by any inhaled irritants, despite the fact we have assumed that for over a century. There just is no evidence that inhaled Titanium or Silica or whatever causes the hyper-immune reaction that physicians say it does. There is ample evidence of hyper-inflammation, but that is different from hyper-immune. The latter implies you have lots of extra antibodies floating around, and you dont, or at least nobody has ever found any... And it sure as heck isn't pollen, woodsmoke, or the host of other old-wives tales I hear from time to time. Focus on the bacteria that has learnt how to hide in your soft tissue, causing relapse from time to time...

Oh-- why didn't someone figure this out before? well, pathologists look at biopsy slides with a microscope giving x10 to x200 magnification. To see Bacteria, the Swedish scientists used x84,000 magnification in a scanning electron microscope. I would hate to have to try and focus something like that...

..Trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-03-02 21:14

Some of you have expressed concern that I am assuming that bacteria cause sarcoidosis without enough proof. The argument goes "If Bacteria and Silica and Beryllium are all found in granuloma then they must all be able to cause sarcoidosis".

So here is my detailed reasoning.

1. An immune response starts when T-lymphocytes (T-cells) are activated into CD-4 or CD-8 states by an immunogenic agent.

2. Nobody has managed to get Th1-cells to be activated by adding Beryllium to a BAL lung sample in a lab. Pathologists found Beryllium granules in the biopsy samples just like they found the bacterial samples, but that doesn't prove that Beryllium is an immunogenic agent which can directly cause inflammation. Every Berylliosis biopsy report that I have seen also found granuloma without any beryllium in them. These empty granuloma could be secondary to the Berylliosis or primary. Beryllium has been studied in a lot of detail, without any firm biochemical explanation emerging of exactly how it causes the run-away inflammation.

3. Silica, on the other hand, does induce a fibrotic response in normal people, but without the tendancy to the run-away inflammation of sarcoidosis. It typically increases the number of activated lymphocytes by a small factor of (approx 3 in the studies I reviewed). But it has a different biochemical mechanism, stimulating different cytokines, the ones causing fibrosis, different from those we normally attribute the typical Th1 response of sarcoidosis.

4. Titanium seems to be somewhere in the middle.

5. However, many studies have shown that Lipopolysaccharides, the outer 'skin' of gram-negative bacteria, do directly induce Th1 cytokine release and 1,25 dihydroxyvitamin D3 release. No dispute.
(The beryllium doesn't, the bugs do)

6. Inhaled particles should only affect the lungs. It is puzzling why other organs can be affected by inhaled particles. Bugs, on the other hand, make perfect sense, hiding in any soft tissue anywhere in the body and causing relapses from time to time.

Just becuase there are beryllium particles found in the biopsy sample from a sarcoid patient doesn't mean that the patient has berylliosis, in fact the opposite is usually the case. The lesions are similar, but not chemically identical (see Scadding, BMJ, 1950, p745)

And the disease Silicosis is a fibrotic disease, totally different from sarc. Just because you have a few silica particles in your lungs it does not mean that you have Silicosis.
"The Presence of Foreign Bodies Does Not Exclude the Diagnosis of Sarcoidosis "

That is why I believe the bugs are primary and the inhalants come into play later, either by chance, or by acting as a nucleation point for the granuloma to form around. Usually the pathologists manage to find "empty" granuloma in a sarcoidosis pathology report, this is the obvious signal to look for a bacterial infection.

Asbestos is quite a different problem, depositing a very nasty needle-like particle into the lungs, one that can cause significant bleeding without any inflammation at all. The response is often a mutagenic one (carcinogenic). I do think this may be a totally different 'particle'. In any case, it has a different outcome, progressing fairly rapidly.

I hope this is a help in understanding why I formed the opinion I did - that every sarc patient should assume that their sarc was caused by bacteria, and institute Minocin or such other anti-biotic treatments that their doctors might recommend.

..Trevor..
"The Use of Tetracyclines for the Treatment of Sarcoidosis"



(C)Copyright 2002

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-04-02 13:54

Belinda has just called my attention to an authoratative review of sarcoidosis which concluded "It is concluded that one or more microbes behaving in a non-infectious fashion in a genetically predisposed individual trigger the sarcoidosis granulomatous response"

Darn - somebody else figured it out before me
Still, I did work out why.

..Trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Mark Morse (---.sanmina-sci.com)
Date:   08-05-02 15:27

Trevor,

As I stated in another message, for the better part of the last decade, I managed to contract bronchitis or pneumonia year after year like clockwork. Various doctors gave me various antibiotics including some of the newer super antibiotics. The only thing that knocked out the problem was simple erythomycin 333. None of the others did anything.

In light of this new info, I can't help but wonder that all those diagnoses of bronchitis and pneumonia were really pulmonary sarc flareups being brought back under control with erythomycin.

Mark

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-05-02 16:09

Yes, I have also heard that the "super-antibiotics" do not do the job. And at least one of them, Cipro, interacts with Prednisone to give DANGEROUS side-effects.

The only antibiotic which seems to work reliably is Lederle Minocin. Not another brand, apparently, It has to be Lederle. There is more info at this link.

Many bugs have developed resistance to Erythomycin. It might be effective on your bugs, if they could identify and culture your bugs then you could test their resistance. Since that seems well nigh impossible with current medical technology, I strongly recommend you try the therapy at the link above.

I have used Septra for the last decade, and have been amazed at how it can perk me up from being down in the dumps to perky again within hours of taking half a tablet. Now I know why. But I am taking the Lederle Minocin anyway... There might well be more than one species of bug hiding in the tissue...

..Trevor..

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Mark Morse (---.sanmina-sci.com)
Date:   08-07-02 15:47

Where is the connection between arthritis and Sarc? It's interesting, a rheumatologist diagnosed my Sarc back in '85. He had suffered with it himself. Are you suggesting that I use Minocin the next time the sarc or bronchitis or whatever it is flares up?

 
 Re: Tick-borne Bacteria Causes Sarc in lungs
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-07-02 16:07

The best way for you to tell the granuloma load on your system is to measure the ratio of 1,25-dihydroxyvitamin-D to 25-hydroxyvitamin-D. This ratio gives you an indication of the amount of 1,25-D that is being produced outside of the kidneys, in the sarc granuloma.

I am suggesting you get those measurements done, and then decide whether any prophylactic use of low-dosage minocin would be worthwhile. You can wait for a flare-up or you can try to treat it in advance of the flare-up, depending on your current inflammatory status.

Now, as for the connection between Arthritis and Sarc, it is very, very close (IMO). The same inflammatory biochemistry, in fact. This paper, for example, measures the 1,25-D to 25-D ratio in synovial fluid as a measure of arthritic inflammation. Yes, I know it is RA, the jury is still out on osteo.

..Trevor..

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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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