Mycobacteria? Support/Promote the Research

brucath
6 Recommendations

NOTE: THIS NEW DISCUSSION WAS SPAWNED FROM nickmd's discussion -
"David R. Moller M.D./Johns Hopkins Sarc Researcher"

Is Dr. Moller onto something??? Well, he's not the only one. Dr. Wonder Drake at Vanderbilt is looking for infectious agents related to sarcoidosis as well. The emerging research seems to support the premise of microbial involvement in the etiology of sarcoidosis. This, by the way, is the premise that the Marshmellow Poopadol is based on. He, Dr. Marshmellow, believes that there are cell wall deficient bacteria that are difficult to detect and to treat with conventional antibiotics and that THEY may be at the center of ailments classically and historically habitually labeled "autoimmune" diseases. As we all know, Marsmellow's views are highly controversial and NOT confirmed by medical science and the treatment he suggests is radical and potentially dangerous.

Here is an abstract of Dr. Drake's paper. She is conducting another survey study and needs sarcoid patients as subjects. If you are near Vanderbilt University, perhaps you can join the study.

This physi1: Emerg Infect Dis. 2002 Nov;8(11):1334-41. Links
Molecular analysis of sarcoidosis tissues for mycobacterium species DNA.

Drake WP, Pei Z, Pride DT, Collins RD, Cover TL, Blaser MJ.
Vanderbilt University School of Medicine and Veteran Affairs Medical Center, Nashville, Tennessee 37232, USA.

wonder.drake@mcmail.vanderbilt.edu

We performed polymerase chain reaction analysis, for Mycobacterium species 16S rRNA, rpoB, and IS6110 sequences, on 25 tissue specimens from patients with sarcoidosis and on 25 control tissue specimens consisting of mediastinal or cervical lymph nodes and lung biopsies. Mycobacterium species 16S rRNA sequences were amplified from 12 (48%) rpoB sequences and from 6 (24%) of the sarcoidosis specimens. In total, 16S rRNA or rpoB sequences were amplified from 15 sarcoidosis specimens (60%) but were not detected in any of the control tissues (p=0.00002, chi square). In three specimens, the sequences resembled Mycobacterium species other than M. tuberculosis. All specimens with sequences consistent with M. tuberculosis were negative for IS6110. We provide evidence that one of a variety of Mycobacterium species, especially organisms resembling M. tuberculosis, is found in most patients with sarcoidosis.

SO...the question is...what IS it going to take to prod the research world into this direction in a more fervent way?

How can we as patients effect this movement? How can our community correctly and politely inquire and perhaps help researchers in their quest for the resources to continue promising directions?

I offer these questions in order to start a discussion on how we can become involved in the process instead of just waiting and sighing for the news of a cure to come raining down from heaven.

Who's with me?

brucath

22 replies

brucath

MORE Mycobacteria Information:

From Current Opinion in Pulmonary Medicine
Mycobacterial Antigens May Be Important In Sarcoidosis Pathogenesis
Posted 10/18/2006

Wonder Puryear Drake;
Lee S Newman

http://www.medscape.com/viewarticle/545168_5

Conclusion

Recent molecular and immunologic studies have revitalized interest in the causal role of mycobacteria in sarcoidosis. Future molecular studies should include positive and negative controls with close pathologic phenotypes to sarcoidosis specimens. Future studies of immunologic responses to mycobacterial antigens by sarcoidosis subjects should also include genetic correlations with antigen recognition, as well as correlations with particular clinical phenotypes. Isolation of mycobacteria from sarcoidosis specimens or the use of pathogenic mycobacteria in the development of an animal model which reflects some aspect of sarcoidosis pathogenesis (advanced lung disease, cutaneous sarcoidosis, neurosarcoidosis, etc.) will aid in defining the role of these organisms in sarcoidosis pathogenesis. The studies published to date support continued investigation of the role of mycobacteria in sarcoidosis pathogenesis.

harmles2

For you medical wizards, could mold contaminated anti-biotics have played a role in sarc? See the recall notice below ...
RECALL
PRODUCT:
Trimox 250 mg/5 mL - 150 mL (Amoxicillin for Oral Suspension, USP), NDC
0003-1738-45, HDPE bottle (200 mL) with child resistance cap. Rx only.
ANDA-61-886. Recall #D-210-1.
CODE:
OC31128, OC31131, OC31133, OD23895, OD23899, OD23901,
OD23903, OD23914, OD23919, OD23925, OD23930, OD23943,
OD23945, OD23948, OD23950, OD23951, OD23952, OD23954,
OD23955, OD23959, OD23967, OD23968, OD23969, OD23971,
OD23983, OD23986, OD27582, OD27587, OD27592, OD27602,
OD27607, OD27619, OD27626, OD27723, OD27727, OD27750
Exp. Date for all lots is October 2002
MANUFACTURER:
Apothecon, A Bristol-Myers Squibb Company, Plainsboro, NJ.
RECALLED BY:
Manufacturer, by letters dated 4/5/01. Firm-initiated recall ongoing.
DISTRIBUTION:
Nationwide.
QUANTITY:
831, 267 bottles.
REASON:
Microbial contamination (mold).

Seems to me if we have taken an antibiotic that was contaminated, perhaps thats why our immune systems have gone bug wacky???

harmles2

PSALM27

I was exposed to mold in my house when I started getting sick.

nickmd

Dear brucath, re your question,"How can we as patients effect this movement? How can our community correctly and politely inquire and perhaps help researchers in their quest for the resources to continue promising directions?

I offer these questions in order to start a discussion on how we can become involved in the process instead of just waiting and sighing for the news of a cure to come raining down from heaven.
Who's with me?"

I AM WITH YOU!
I find it hard to believe that a web site supposedly dedicated to finding the cure would be so adamantly opposed to discussion re: the possible benefits(or dangers) of antibiotic treatment. (Especially since it is obvious the current treatments are not "The Cure",and this is a terrible disease.)
But....before I had ever heard of the protocol, the folks at Team Inspire, deleted a discussion question I asked re infectious etiology of sarc warning me not to talk about something I had never even heard of!!

I would suggest that the members of this discussion group, ask for a change,i.e all topics are Ok. Anecdotal patient information has informed researchers and resulted in many medical breakthroughs. Discussion of a topic does not mean we are selling a particular approach nor that we are qualified to critique complicated research findings, but dang!, we are also not so dumb that we need to have our questions re these issues deleted.
Perhaps an area on the site inviting experts on the subject to give their pros and cons of various treatment regimes would be of use.

Paradox

Ouch - sounds like things are getting fairly anti-physician on this thread, but I'll hoist the target back onto my chest and wade right in as both a scientist and a physician.

There is no lack of historical cases of patients who had both tuberculosis and sarcoidosis. Interestingly, treatment for tuberculosis or not has never been shown to have any influence on the course of sarcoidosis... go figure.

Minocycline is not the drug of choice for tuberculosis, there is a reccomended 4 drug regiment for it that lasts for 9 months. It's not the most fun combination you could dream up.

For other mycobacteria, minocycline is not the antibiotic of choice - at least not according to medical science. If you really want to put stock in anecdotal evidence, though (and even anecdotal evidence has some data, not just "I knew a guy who heard of a guy...") then consider how many people on this forum have ever taken zithromax/azithromycin/Z-pack - that would be the first line drug for most mycobacteria and sure never made a difference for my sarc.

The worst pseudo-science is when people - humans who have their ego invested in the answer - try to find data to fit their preconcieved ideas rather than seeing where the data actually leads. Me, I'd like to see where the whole body of data goes and not just pick and choose what fits the answer I want it to.

As for H. pylori, I think that story has been embellished so much over the years that I have to keep looking back to the original studies to make sure I have it straight again. Ah, nothing like watching the myth evolve in front of my eyes.

Now, I have to go stand on the roof of the hospital and wave the black helicopters in. Don't worry, it should keep me busy enough as to not have time to check in on this thread again.

TeamInspire

nickmd,

Your previous post was deleted because you linked directly to one of Trevor Marshall's sites, not because you asked about antibiotic therapy. That is against the group rules as explained here:
http://www.inspire.com/Beth/journal/change-in-community-rules/

That said, our sponsor, the Foundation for Sarcoidosis Research, is going to ask Dr. Moller for a lay summary of his research, as they are as interested as you.

It is important to point out, finding mycobacteria is not the same as proving that Mr. Marshall’s theories about using a tetracycline derivative for treatment.

I'm sure the FSR will make the information available as they receive it.

Beth, TeamInspire

nickmd

Dear Beth of Team Inspire:
You are correct when you say, "It is important to point out, finding mycobacteria is not the same as proving that Mr. Marshall’s theories about using a tetracycline derivative for treatment."

I must say, I am not an advocate of Marshall. I find his protocol very arcane.
On the other hand, I don't understand the decision not to allow information to be shared, no matter how off base it may be, if the writer is sincere and wants help, which is the case for me.

TeamInspire

Nick,

I believe that is answered in the post that I link to. This decision was not come to lightly. In fact, we used to allow the topic but every time, without fail, it would degenerate into a flame war of personal insults and name-calling. Then there was some behind-the-scenes shenanigans that further underscored the need to ban the topic all together.

Unfortunately, that sometimes means that new members fall into the situation you were in. If you want more information please send me a message.
Beth, TeamInspire

nickmd

Paradox,
No one here is going to shoot at the target you are putting on your back, doctor. You have done yeoman's work helping folks on this site; in fact I would say you have been THE most helpful for the greatest number of sarc suffers. You deserve nothing but kudos!!
I do not see this discussion as "anti-physician" but as a plea for open discussion.
Keep up the good work. n

jmaze

I heard about this particular discussion from somebody who read the thread I posted this morning re: my bronchoscopy results. Besides showing sarcoid, the results also found bacteria. Doc wasn't sure from what or why but he immediately put me on an antibiotic called Avelox. I go back on 9/10 so he can see if the Avalox helped how I was feeling or my breathing issues. My doc doesn't understand how I could be in remission for the past 7 years and now have problems again. Particularly since it is much worse this time round than it was when I was first diagnosed 9 years ago. I hope he is right and treating the bacterial issue (infection??) takes care of my breathing issue. But I didn't understand most of what you guys were talking about on this site other than the fact they are trying to connect sarcoid with bacteria. Can somebody, anybody explain a bit more? I'm a complete idiot when it comes to medical terminology.
thanks,
jmaze

brucath

Dear jmaze:

The overwhelming historical medical view of sarcoidosis is that it is an autoimmune disorder.
Automimmune diseases like rheumatoid arthritis, lupus, Chrohn's and so many other disorders are very poorly understood. What they all seem to have in common is a severe inflammatory response when the actual reason for the response is not apparent. Our immune system atttacks otherwise healthy tissue in our bodies without apparent reason. It's sort of like having a bad infection without any evidence of bacteria or virus or fungus or any other factor being identifiable that is actually causing the inflammation.

A LOT of research has gone into trying to find infectious culprits that have a part to play in the development of autoimmune disorders. Drs. Moller and Drake (and many others) are both trying to isolate possible connections between sarcoidosis and mycobacteria by looking for their genetic foot prints in the tissues of patients with sarcoidosis. They are not finding the actual bacteria and they can't point the finger at these bacteria as causing sarcoidosis. But, after a lot more research, bacteria and other infectious agents MAY be found to play a role in the development of sarcoidosis and perhaps (hopefully) other autoimmune diseases as well.

jmaze, about the information in your post about bacteria found in your lungs from your bronchoscopy.
I cannot say, but I am guessing these bactreria may or may not be causing a current infection and are secondary to the sarcoidosis, NOT the cause of it. Avalox (Moxifloxacin) is used to kill a broad spectrum of bacteria (that is susceptible to Avalox) including, but not limited to:

Staphylococcus aureus
Staphylococcus epidermidis
Streptococcus pneumoniae
Haemophilus influenzae
Klebsiella spp.
Moraxella catarrhalis
Enterobacter spp.
Mycobacterium spp.
Bacillus anthracis

So, your MD is using antibiotics to kill whatever bacteria the culture from your bronch samples showed was in your lungs at that time.

Bernie Mac was said to have died from pneumonia and NOT from sarcoidosis. But, we all need to know that those of us with compromised pulmonary function and especially those of us on prednisone are more susceptible to lung infections. Fortunately, most "lung bugs" do respond to antibacterial actions
once they are accurately identified through culturing of sputum or bronchoscopy samples. Bernie Mac had been suffering from pulmonary sarcoidosis for I believe more than 20 years. I don't know this as a fact, but it seems reasonable that his compromised lung function had to have been a major factor in his inability to overcome whatever complications from pneumonia he had was battling when he succombed.

So, I hope this helps a little. I hope otehrs will chime in too!

brucath

Two_Labs

For what it's worth...my biopsy grew out a brevibacterium.

brucath

Hello Two_Labs:

Brevibacteria? Interesting. These gena are common on cheese and are what gives cheddar it's tangy odor and flavor as well as limburger and other surface-ripened cheeses. Brevibacteriim epidermis is common on human skin and is responsible for human body odor.

I would appreciate knowing what the docs said about culturing brevibacteria from your biopsy samples. Contamination may be the likely reason. Did they tell you if brevibacteria can live in lung tissue and if so does it actually cause any problems?

Tell me more!

brucath

Two_Labs

After a while they decided it must have been a contaminate. They did put me on an antibotic right away after they discovered it as well as prednisone. Since I got better with the prednisone, they declared I had sarcoidosis. My biopsy also showed casating granulomas.

unique64

My biopsy to retrieve sample between lungs was first determined benign. Then it took several days and I got called by doctor saying they found an unidentifiable bacteria and he would call in a few days. Then when he called he said sarcoidosis and they decided the bacteria was from cross contamination because it was not capable of living in the human body. Makes me wonder. Have requested copy of biopsy report and will post when I find what bacteria it was.

RuthfromOz

To backtrack a few weeks and address harmles2's question about any link between sarcoid & contaminated antibiotics - interesting theory, but doesn't really explain the world-wide incidence, or the fact that sarcoid diagnoses pre-date modern antibiotics, or the fact that it occurs in other species apart from humans (horses for one). So, as far as I can see, the chances of sarcoidosis being caused by contaminated antibiotics are pretty slim.

trevor

L-form bacteria are small enough to avoid the filters used to filter vaccinations. And so vaccination is one of the possible sources of infection.

The BCG vaccination against tuberculosis is accepted as being able to cause sarcoidosis.

harmles2

RuthfromOz,
I agree with your reply, sarc has been around for a while, yet I thought it would add to this discusion .....

I'm no medical dude, and I only down loaded 1 case of anti-biotic mold contamination, perhaps 100's if not 1,000's of medicines over time have had some kind of contamination in them. In this one case, it was nearly a million bottles. Certainly mold contaminaion in drugs,elixers, and medicines had to be prevelent yet un-noticed for the last 1,000 years.

I did have a skin reaction (rash and hives) that never went away unless I was on prednisone. And my sarc only became evident after getting taking the Trimox (which I had taken before) One has to wonder what mold in our medicines does cause??? If nothing, why recall them?

While not a medical dude, I do have some expereince in chemistry relatated to industrial applications, and have expereinced bacteria that only populate under certain conditions or they otherwise remain in check. For instance, they need a food source, they are dependent on proper pH conditions and also temperature conditions, when these various condtions are lined up, mass production can occur. I suspect it is also true with some of these in our body. This is why the culture tests must be controlled so exacting .... only under the right conditons will the bacteria grow.
Yet some bacteria are not killed outside of ideal conditons and thus more resistant to changes in pH, temp, poor food sources, etc, and live (while not in the best enviroment) to sustain their growth. (again, I'm talking industrial applications, which may or may not be simular to human bacteria applications)

Also interesting to note, ...... while on pred this spring, (about 4 months into pred treatment) I developed an chest/sinus infection, (go figure, no immune system to fight it off) after 2 different antibiotics over about 3 weeks, I felt far better than I had in years. I really feel the anti-biotics did more than just handle the infection as I felt way better than I had in years. after about 3-4 weeks, and during the pred taper phase, the sarc symptoms came back.

I do not know what to make of it, just thowing it all out there.
harmles2

priscurl

Here's a thought. The bacterium which causes Lyme Disease is known to morph into three differing forms. A bacilli, a spirochete and a minute coccoid L form.

Perhaps Mycobacterium Tuberculosis does the same thing. Perhaps the bacillus causes TB, but the minute coccoid form causes Sarcoidosis.

This would explain why genetic material from M. Tuberculosis is found in people with sarcoidosis. It would also explain why both diseases can coexist in the one person. It would also explain why the antibiotics of one wouldn't help the other disease. Antibiotics used to attack cwd bacteria are useless against cell walled bacteria and vice versa. It may also explain why bacilli are present in necrotising granulomas but nothing appears in non caseating granulomas. There is no cell wall to stain, so there appears to be nothing present.

I wonder if anybody has done any research into this. Perhaps they could take their pointers from Lyme people.

Just a longshot.
Pris

priscurl

Hi NickMD
I can vouch that other forums I belonged to used to break down into argument and invective when the MP was ever mentioned. Some of them had to shut down altogether, so I can understand Team Inspire's desire to keep things nice. It is difficult to discuss things sensibly when people have made their mind up one way or the other. I wondered Paradox, whether those people on marshmellow p came in with kidney failure or adrenal crises. I have read some stuff about this on a CFIDS/CFS/ME site.

Pris

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