I understand you do a lot of research and appear to be well educated on the disease and treatments. I personally most likely do not know as much as you on the topic but I would like to add the following information as food for thought.
Dr Brown spent a lifetime doing research as well as being a practising Rheumy.
http://en.wikipedia.org/wiki/Thomas_McPherson_Brown
Here are some facts from his and other Scientists studies which are all referenced in the book I have mentioned.
The mycoplasma has been isolated from synovial fluid of arthritic joints and transferred across to other animals and induced arthritis symptoms on the other animal. That alone blows apart the "auto immune disease" mechanism theory in my opinion as being the cause of the disease. The antibiotic treatment works on other animals with inflammatory arthritis. Google mycoplasma and arthritis and you will find a lot of information about animals. Logically if we were to have a mycoplasma infection as a human it would have some sort of similar effect.
Mycoplasma itself is not just a simple bacteria that is easily killed within a few weeks of antibiotic treatment. It is very difficult to reliably isolate with blood testing. It has been shown to sometimes be protected by a biofilm and be able to migrate and hide in the body and be resistant to antibiotic treatment, hence the long term and ongoing antibiotic treatment.
Some of the websites you mention have information from people like me who are not highly trained medical professionals, but they have their own experiences.
Logically for me NSAIDS can cause a lot of stomach problems over the longer term. If you have food sensitivities which result in gut inflammation then I can see logic in the combination causing more damage than to someone with a healthy gut. Which is why I went for scientific testing to ensure the food allergy type thing is not part of my puzzle, but I am certain it is for some.
Even within the Antibiotic treatment world there are two distinct theories being the "lumpers" and "splitters". The lumpers believe all arthritic types (except osteo of course) originate from a mycoplasma infection and can be treated with tetracyclines. You will see they just simply refer to Rheumatoid Arthritis for all the arthritis types. The "splitters" believe each type of arthritis is from certain mycoplasma/bacteria types in combination with genetics and environment of the person.
We know that a person with a HLAB27 genes most certainly can get reaction from an STD or other infection throughout the body as shown in reactive arthritis.
There is a lot of controversy regarding Lyme Disease for example, which has been proven to be from a borrelia from ticks. There are several different strains found. Obviously it is treated with antibiotics, but there is a lot of controversy regarding the long term treatment with antibiotics and most treating doctors are either being sued or closing their practices due to complaints from insurance companies. Anyway very political but Lyme disease is not always resolved within two weeks which is what the guidelines state, so doctors can be sued or licenses revoked if they do not obey. (In the USA). The bacteria in question has been proven to be a combination of different bacteria and mycoplasmas and proven resistant at times to initial antibiotic treatment.
I encourage everyone to watch a documentary called "under our skin" on Lyme disease.
My belief is that although the DMARDs and Biologics which most certainly provide wonderful relief from the symptoms and slow down joint destruction are not looking addressing the root cause of the disease or getting us any closer to a cure. So again I am not anti drugs, but I believe that they are not addressing the cause of the disease.
As a very oversimplified model, I believe that Inflammatory arthritis is a response a a mycoplasma/virus in which due to our genetic predisposition triggers the inflammatory response. The mycoplasma can lay dormant for years or decades but be triggered when encountering another infection, stress etc or other things observed which seemed to trigger flares. Similar to an allergy where most persons can be exposed and have no reaction but others react in a multitude of different ways. Instead of suppressing the immune system as a whole, killing the mycoplasma responsible and therefore lowering the inflammatory response is closer to a root cause than suppressing the immune system and therefore inflammatory response alone.
I am open to learn more and I may change my mind totally on this model as I learn more. I hope someone does prove me wrong and find a cure.
It isnt our job as patients to find the cure!
I strongly urge you to find a copy of The New Arthritis Breakthrough and come back to me with flaws in his methodology as I cannot go into detail or spend the time referencing it correctly.
I encourage these healthy debates/discussions on the different treatment types, that's what these forums are for to help us all learn how to manage this disease as best we can.
tntlamb said:
I don't think most consider it quackery - by itself. there are a small group who think the disease despite overwhelming evidence to the contrary is strictly bacterial. The evidence shows that Minocycline is effective as a DMRD (at least with RA, the PsA testing studies are not complete - doesn't mean it isn't being used sucessfuly with PsA)
The quackery comes from support groups such as KickAS who believe that NSAIDS contribute to the problem. Or that there are any other number of co-conditions that cause it or that all of these conditions have a common cause that is treatable with anti-biotics.
Apparently you are not in that group or you would be gluten free despite the tests..... You would also not be taking any NSAIDS - ever (they make the gut leak.)
DMRDS are used in conjunction with NSAIDS and occasional steroid treatments VERY succesfully for most treatments. There are a number of DMRDS of which MTX is only one. Keep in mind the vast majority of people using MTX have few to no side effects and good treatment results, and never move to the biologics. Minocycline is a newer one in common use and it has a number of uses beyond the basic antibiotic but then the other DMRDS have uses beyond treating inflammatory disease.
What is interesting is there are now groups claiming assorted STD's cause PsA along Lymes disease (as well as other tick borne diseases) skin diseases such as MRSA etc. and even peridontal diseases and acne. I find it interesting because these are all diseases treated with Minocycline.
HOWEVER there are a few problems with the antibiotic thing. First if it is a bacterial disease antibiotics should cure it. If not then they will become ineffective in time. After all once the bugs are gone the havoc they cause should leave with them. Of course if the bugs alter the immune system and cause all these problems then even if they leave the building, the damage remains and we are back to treating the immune system. Empirical research/evidence is what it is. In this case its what we see. Whether Minocycline is effective because it is an antibiotic or DMRD depending on observations of it in the 80's BEFORE DMRD's were understood or later obersrvation when theywere is irrelevent. It works for some people
I am glad its working for you what ever the reason. Please keep us posted.