AP, Just treating inflammation not the Auto Immune side?

[Rockin Annie]

[user=664]davew[/user] wrote:

Great thread and great responses by all.

Thanks!

Dave

Dave,

You have taken the words right out of my mouth …………Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Maz]

[user=851]tbird2340[/user] wrote:

Doctor's are only book smart, however, they do get to treat hundreds of patients so they do get to see the effects / treatment which the prescribe so that is added experience.. That also goes to say for the AP doc's though! If it didn't work, I doubt they would keep prescribing it!

Yup, exactly, Tom! 😀 I think this is what makes it all the more ironic that the rheumies who pooh-pooh AP are probably the ones who have the least experience in using it. This is speculation, but if a doc doesn't believe in infectious causes, then they won't understand the whole herxheimer dynamic and why patients often worsen on AP before improving. This is probably why AP is seen as being a weak DMARD at best…because they don't keep patients on it long enough to gauge its longterm effects. It's like getting partway through the carpentry manual, but giving up on making the chair before it's completed, because the new carpenter doesn't have the experience to see that the wood glue needs time to set.

Okay, I'm making myself laugh at this inane carpentry metaphor now! That's not a good sign! :roll-laugh:

Peace, Maz

[Maz]

[user=20]Joe M[/user] wrote:

It would be interesting to develop minocycline with only antibacterial properties and no anti-inflammatory properties and redo the MIRA trials.  That would answer the question once and for all how mino works for RA.  For now, the docs who think it is the antibacterial properties and the ones who think it is the anti-inflammatory properties are both right, maybe.

Hi Joe,

Paratek pharmaceuticals is currently in the midst of just such research, only they are doing it in reverse from your suggestion above. They are creating a tetracyline without antibiotic properties and just immune-modulation properties. What I will be interested to see is to see the results from trials of such a med. No doubt there will be some improvement in symptoms due to the immune-modulation, much like any other DMARD, but I have to wonder if patients will experience the same type of progressive improvments over time and how many actually reach a point of medincine-induced remission. The whole theory behind Dr Brown's AP revolves around the herxheimer and initial worsening as being evidence of pathogen die-off.

We'll have to keep our ears and eyes peeled for further developments with this.

Peace, Maz

[Lynne G.SD]

Hi Orchid;
     A lot of us are born with a predisposition that we have inherited.Me,for example.My grandmother died of Huntingdon's Chorea and it only showed up when she was in her fortiesIt is a well known fact that these people should never have childre as 50% will get it or some similar disease.Instead my mom got Altzheimer's that we now know is a TH1 immune disease also.I have SD and my sister has Lupus or possibly MCTD. the other 4 kids are just fine.All you need is a trigger to set off whichever disease you are genetically predisposed to.For me it was stress and,chemicals and aircraft(GP4) fuel.For my sister it was stress and lack of fresh vegetables and fruit as she lives in the far,far north .I am hoping that nothing happens to my girls but they are taking as much precaution as they can by avoiding anything that can be a trigger.Both were in the arts,one with the Royal Ballet and the other a Baroque music clarinetis and terribly poor so now both are aircraft mechanics and exposed to a lot of baddie.You would die laughing at the sight of them covered head to toe and wearing respirators to avoid breathing chemicals.
      AP works by weakening the micoplasma and as you know our immune cells are colonised by micoplasma just as much as our other cells.However we are always formg new ones and these newuncolonised immune cells are the ones that fight off the infection.Hope this simplified bit of info helps.

[richie]

Hi
Everyone is totally overlooking the anti collaganese properties of minocycline —when this first came out and Wyeth was the manufacturer they published an informative brochure –mentioned prominently was the anti-collaganese properties of minocyline –since we are fortunate to have a microbiologist among us –perhaps she can explain how this factors in —-
i am sensing that just as mainstream doctors are dogmatic in their view of the cause of RA –so too are many people right on this board who are very rigid in their view that RA has an infectious cause —which of course is both un proven and unsubstantiated
Richie

[marg]

Well, I have a few degrees, but not in the areas of medicine or science.  I am well read on AP and a family member is using it successfully, so take my comments in that light!

I don't subscribe to the concept of “autoimmune”. I believe these diseases have an infectious basis. I think many of us harbour all kinds of “bugs” but they get the best of us when there is a trigger – such as stress, trauma, environmental ( like chemicals etc.) It seems possible to me that genetics  could play a part here in some people being more susceptible to certain infections ( ie, the body is not as equipped to fight off the infection.)

Why some get a disease and others do not is a complex question, but we see this in many diseases as well as the so-called autoimmune ones. ( For example some kinds of cancers “run” in families but we are not surprised that only some family members contract the disease.)

It's hard to stay confident in your decision, when well-respected doctors try to convince you otherwise. Do your research and decide for yourself. Good Luck!!

[Maz]

[user=16]richie[/user] wrote:

i am sensing that just as mainstream doctors are dogmatic in their view of the cause of RA –so too are many people right on this board who are very rigid in their view that RA has an infectious cause —which of course is both un proven and unsubstantiated

Hi Richie,

Your point is well-taken, although to reiterate a scientific principle, “Absence of evidence is not evidence of absence.” That said, however, there is actually plenty of evidence to connect RA with an infectious cause. You just have to browse the articles on the main website, but there are plenty on PubMed and elsewhere, too. Or just ask some of the RAers here who managed to get a tick bite, severe intestinal, chest or other infection, like H Pylori, and then wound up with RA right on its heels. It's like a connect-the-dots type of puzzle. We may indeed have compromised immune systems from environmental toxins, poor diet or stress, as Marg said, but these factors may also just be the scene-setters for voracious infections that seize the opportunity to take advantage of their compromised host. So it's not necessarily one thing or another, but a whole mess of things chucked into the bucket. 

Having spoken to countless Lyme patients who have received a diagnosis of RA, I have to pipe in and say there is no doubt in my mind that pleomorphic organisms not only trigger this disease, but have a hand in its persistence and chronicity. In fact, this was how Lyme was discovered…because a cluster of children in Lyme, CT, came down with JRA. Even the medical community acknowledges Lyme as a proven cause of RA and JRA….and now it is becoming increasingly clear that many other immune diseases, such as Lupus, Scleroderma, ALS, Parkinsons, Alzheimer's and MS are all triggered by borrelia and its hitchiking friends.

Additionally, there is also the herxheimer phenomena…this would not be occurring if there was no die-off. And, why do other classes of antibiotics…other than the tetracyclines….also work for rheumatic diseases?

All in all, I guess it's not too surprising that so many of us here believe in infectious causes. After all, it is a site dedicated to preserving the legacy of a doctor whose career focus was that of treating what he believed to be was the infectious cause of rheumatic illness. 😉 So, not sure why that makes this belief rigid in the context of this discussion forum… If one were to join an environmental toxin discussion forum, then it wouldn't be surprising if the discussion was largely centered on environmental toxins as a cause for various illnesses either.

Just a few random thoughts…it's late and the ol' brain cells are telling me its time for bed. Marg makes another great point…after doing the research for one's self, each one of us gets to make our own decision about this and it's really okay for us all to draw our own conclusions.

Peace (not war :roll-laugh:), Maz

 

[JBJBJB]

[user=851]tbird2340[/user] wrote:

This sure did scare me into thinking about the conventional stuff again.. 

Tom,

I have some rashes, too after on AP.It comes and goes. I noticed each time when I have seafood, I got rash. I did not have this problem before.

I had this same conversation with other conventional doctors, too, including my own mother (MD).  I understand how you feel.

My take is that I am better off to be on minocycline even if it just brings down the inflammation. My other choices from the conventional rheumatologists are very toxic.
In addition, if mycoplasma theory holds, mycoplasma bacteria may be contagious. Minocyclin can control that. JMO
JB

[richie]

Hi
Just to extend this interesting discussion —i definitely submit that SD Lupus and possibly RA have at their root causes a defective immune response —whether its an immune response to bacteria –stress –environment –one can definetly reason that the base root cause is a defective immune response —the variable is lyme –as it is well documented that lyme can morph into RA —but what about the millions who dont have lyme and have RA

---

I submit to substantiate my reasoning the following —it is a well known fact that mycoplasma is a very common bacteria that is present in the general population at almost the exact same percent as folks with RA –app 55% –now the question beckons –why arent  more people sick from the general population and why are the remaining 45% of folks with RA who dont test for myco not  sick ???

---

My comments should definitely not be mis interpreted or cast any doubt on the effectiveness of the antibiotic therapy –I personally have been on minocin 2 X daily for over 10 years and completely better from a nasty case of systemic scleroderma —I know of many many people who had RA and lead normal lives now with either remission or dramatic improvements —I just feel minocycline works in ways that quite frankly many AP doctors and regular rheumys do not comprehend —-Part of the problem is very similar to regular rheumys —A reluctance to rethink old dogma !!!!!-

It is interesting to note that the doctor I used up in Boston does not test for mycoplasma nor treat the illnesses similar to so-called conventional AP doctors –rather minocin is used as a subsitute  instead of the biologics –and in scleroderma as the first line med

---

the results are readily apparent
richie

[Susan LymeRA]

Tbird,

Avoid doctors that say such things.  Whether we want them to or not, what they say to us does carry a lot of weight in our minds.  Find doctors that give you hope.  Even my family physician who is not my RA treating physician has to be supportive in what I do.  I can't afford negative imput. 

My treating physician is a rheumatologist.  She believes in infectious causes and runs tests to identify the bacteria/parasites and treats them.  She switched me from minocycline to doxycycline because I too developed a rash that was frighteningly similar to the lupus rash.  I test negative for lupus.

I test positive for babesia, Mycoplasma Pneumoniae (off the charts until recently.  Now I am “on the chart” infected) CPN, H. Pylori, QFever.  She is also convinced I have strep although bloodwork has not confirmed it so far.  She aggressively goes after the buggers.  So, no one can tell me that my RA is not driven by active infection.

A genetic test for detoxing abilities found that I am very defective in my ability to produce glutathione.  It is this flaw that causes me to back up with inflammation.  Keeping my glutathione levels up keeps me up and running.  The solution to pollution is dilution…..Dr. Sherry Rogers, MD

As for genetics, what a stupid thing for your doctor to say.  Genetics do not make you sick.  They just determine how your body will respond if you encounter the right set of triggers.

The genetic test showed me high risk for bi-polar disease, but I never got it.  The only member of my family who ever had rheumatoid arthritis was a distant cousin.  Her children are my age and even though they have the genetics, neither of them so far has RA. 

I am sure my RA cousin's (twice removed no less) DNA didn't skip everybody else and just land on me.  Plenty of my family shares my genetics but not my disease. 

I'm doing 100% great under my doctor's care.  If one thing isn't working for you keep trying until you get the right combination.  Mino alone was not enough for me.

Susan

[Lynne G.SD]

Hi Jb;
     I have no doubt anymore about micoplasma but I did for a quite some time.I can't remember which site shows pictures of them actually inside immune cells.It was either the MP or more likely the Immed site.One needs Dark field Microscopy to see them.

[Susan LymeRA]

My mycoplasma test is just a regular bloodtest run by Quest Labs and Labcorp.  Both labs found me to be infected >5.  <.90 is normal.  My last test I was 368 so improving.  Bloodwork was drawn this week but it will be a couple of weeks before I get results.  

[JBJBJB]

Susan,

Does Labcorp do mycoplasma test? I need to recheck my m. pneumonia again and see if I still have it. My insurance covers labcorp. Do they also do Lyme Disease, too? If so I'd better go back to my doctor after new year.

Good information!!! Thanks! JB

 

[Susan LymeRA]

Yes they do both.  My doctor prefers Quest.

[Maz]

[user=16]richie[/user] wrote:

Just to extend this interesting discussion —i definitely submit that SD Lupus and possibly RA have at their root causes a defective immune response —whether its an immune response to bacteria –stress –environment –one can definetly reason that the base root cause is a defective immune response

—the variable is lyme –as it is well documented that lyme can morph into RA —but what about the millions who dont have lyme and have RA

---

I submit to substantiate my reasoning the following —it is a well known fact that mycoplasma is a very common bacteria that is present in the general population at almost the exact same percent as folks with RA –app 55% –now the question beckons –why arent  more people sick from the general population and why are the remaining 45% of folks with RA who dont test for myco not  sick ???

---

My comments should definitely not be mis interpreted or cast any doubt on the effectiveness of the antibiotic therapy –I personally have been on minocin 2 X daily for over 10 years and completely better from a nasty case of systemic scleroderma —I know of many many people who had RA and lead normal lives now with either remission or dramatic improvements —I just feel minocycline works in ways that quite frankly many AP doctors and regular rheumys do not comprehend —-Part of the problem is very similar to regular rheumys —A reluctance to rethink old dogma !!!!!-

It is interesting to note that the doctor I used up in Boston does not test for mycoplasma nor treat the illnesses similar to so-called conventional AP doctors –rather minocin is used as a subsitute  instead of the biologics –and in scleroderma as the first line med

---

the results are readily apparent

Hi Richie,

I split your post into 4 points above, because all are good points and deserve addressing. I know you, Joe M and John McD have batted this around a number of times, but here's my take for what it's worth.

Referring to the first box above…

Is it a defective immune response, though? I beg to differ on that…it could be seen as dysfunctional, as per Joe's comment above, in that the immune system has been compromised by environmental stresses, but essentially the immune system is probably doing exactly what it's supposed to be doing. The trouble is, as Susan and Lynne_G pointed out, these organisms are known to have cloaking systems. I'm no expert of molecular mimickry, but what they have learned about the Lyme organism is that it has the ability to change up its outer surface proteins (OSPs) into countless permutations, some of which closely match the host's own cells. This drives the immune system into hyperdrive, searching out these foreign bodies that have quickly changed up their OSPs to hide behind these cloaks. Lyme is just one example and I think it's a good one as there seems to be more research coming out now about all this. However, according to some microbiologist's estimates, we have only named about 1 or 2% of pathogens in existence. This alone, besides there being a lack of research, justifies the scientific principle that absence of evidence is not evidence of absence. Scientists know these organisms are there, but they just haven't been able to fully identify them all yet. They also know that many of these organisms have lots of pleomorphic forms. Borrelia can change from spirochete, to speroplast L-forms, to cyst, and to Bleb (fragments) and this organism exists in bio-films with other pathogens with a veritable communication system going on between them all. Dr Brown knew this about mycoplasma, too, as did the researchers that worked alongside him. They just didn't have the technology to visualise these morphed forms in their entirety. Dark Field Microscopy has helped with this today.

So, my question in response is this, “Is the immune system defective or is it really doing it's intended job and just unable to locate these pleomorphic forms?” Or, is it a bit of both? Perhaps the immune system is compromised by environmental stressors and these organisms that have co-existed with us peaceably until this point, suddenly decide to seize their moment to get the upper hand? My money is on the latter.

Box 2:

I think I probably already mentioned what my answer would be in the last paragraph above. My take is that we're all swimming in a pea soup of pathogens from birth. We co-exist peacefully, unless or until such time as the immune system becomes compromised. Genetics may or may not play a role in this, but the stats seem to demonstrate that those with specific genes tend to respond to a convergence of different circumstances and are triggered. One thing is clear, some people may carry these genes but may never present with the disease that's been associated with it. So it may well be that a combination of things need to occur to awaken those genes…ie. environmental stressors (like stress, shock, diet, candida, leaky gut, celiac, environmental toxins/poisons, heavy metals…and pleomorphic pathogens).

So why are those with mycoplasma not sick? Probably because they have strong immune system that are able to keep some semblance of control and balance in the body. Or possibly they aren't fully well – prone to colds, flu, asthma, digestive troubles or other things – but their myco populations just haven't manifested as rheumatic disease. What seems to be happening with Lyme is that there are many different strains – 100 in the US and 300 worldwide – and that some of these strains are more virulant that others with a proclivity for hitting certain body systems…the joints, or the nerves, or the skin, or the brain, etc…and while the majority of people seem to get over Lyme quite well, even if they don't get early treatment, about 20% of those who do get to the chronic stage (some who have received early treatment and some who have not), they will go on to develop some “autoimmune” type manifestation. This is now pretty much an accepted fact. So, if Lyme has evolved in this way, why not mycoplasma? We know there are different strains of mycoplasma, so why wouldn't some strains be more virulant than others? If one organism has evolved in this way, then why wouldn't others evolve in the same way?

And why aren't some of those with RA testing positive for mycoplasma? Good question and I don't know, except why do some of those with Lyme also not test positive for it? Could it be that the tests are faulty or inadequate? Are they missing certain strains that could be quite virulant but not showing up on these tests? Absence of evidence is not evidence of absence.

Box 3:

I am in complete agreement that minocycline probably has properties that are well beyond our current scope of knowledge to understand. I think this is probably true of a lot of medications – statins, for example. These, too, have been shown to have some effect as disease-modifiers on people with rheumatic disease. Don't get me wrong, I think these are dreadful drugs and I really wouldn't touch them with a barge pole unless I had no other option. Question is, why are they having some effect? My suspicion is that cell-wall deficient pathogens rely on a ready lipid source to maintain their outer lipid layers. When lipids are reduced, mycoplasma lose their food source and their outer membranes become compromised. There is no doubt in my mind, either, that minocycline has disease-modifying properties. Studies have shown that it has some effect on protein synthesis and calcium uptake by T-cells. However, pathogens also rely on certain proteins and enzymes to function. So why wouldn't mino also be affecting the these pathogen processes needed for survival, too? I don't necessarily think it needs to be a one or the other question with all this…to exclude one thing makes no sense, because pathogens are living things, too. So if we are affected in terms of immune-modulation, then why wouldn't pathogens also have some of their vital processes altered? I also agree there is a lot of dogma surrounding the science of our diseases. We need more research in this field and we should not put blinders on and exclude all possibilities. A – that's not good science, and B – until we start accepting that there are many things that contribute to our diseases we probably won't progress. For now, though, we do have minocycline, which does work in a great many cases very well, thank goodness.

Box 4 – With regard to Dr T in Boston, he is a very good AP doc. We all have a good deal of respect for the man who stepped out of the box and worked on the MIRA and mino in sclero trials. He's done great service to us all. However, he is but one physician and every physician will have their own persuasion and philosophies on treatment. No one is saying Dr T's methods aren't kosher or better or worse than any others. It's a fact that he's helped thousands of rheumatic patients to get well again, including you. He just has a different focus from some other AP physicians who believe it is important to get to the infectious root of these diseases. From a practical standpoint, those who choose IV therapy, for instance, will have mycoplasma testing done purely and simply in order to get insurance coverage. I personally never had myco testing done, but this doesn't mean I don't believe myco don't play a role in my disease. I believe they do and I also believe they work in synch with the other pathogens in my mix. For some people, it's important to know why they aren't responding to minocycline and they may get tested for this reason. Some strains respond better to other antibiotics. I just didn't feel it was necessary in my own case, because I was on a number of different antibiotics, anyway, that were hitting lots of possibilities. For those who don't respond to minocycline, though, they may need to find a different physician who is willing to look outside of the minocycline box to try other classes of antibiotics.

The thing is that we know that not all sclero patients herx like RA patients do, but many do experience worsening before they get better. You may have been in this catagory, but I can't remember. Herxing seems to be directly related to an inflammatory component. The more the inflammation, the worse the herx that may appear as disease progression. Again, this is likely due to whatever may be at the root of the disease for each individual. It may well be that a person with a heavy toxic load, but a smaller pathogen load still gets sick and vice-versa. I don't think it's necessarily a question of excluding one thing over another, though. It's very possible that you, for instance, were exposed to some chemical in the environment that severely compromised your immune system. It's also likely you have mycoplasma, but not necessarily a heavy load. Nevertheless, a smaller pathogen load may be just as virulant to a severely weakened immune system.

What is clear…and I don't think we're talking from opposite poles here…is that we just don't have a definitive, conclusive answer to each and every individual's case. This is why we all have to seek out our own answers for ourselves and try different things.

We are on a discussion board, however, that focuses on infectious causes for rheumatic disease, so it's not really all that surprising that the discussion is centered on this topic. 😉 Nor is it surprising that we'll all have our own areas of focus…my focus is on Lyme, others may have their focus on candida, others on diet, others on toxins…we all have our own boats to ride in and we can only offer a perspective based upon what has worked for us.

Sorry for the long answer…seems pretty funny that I'd respond in such depth to you like this, of all people, as you are always so succinct! Sorry if you're yawning now…just thought others who might have the same niggling questions might be interested in another perspective.

Peace, Maz

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