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Re: Harold, I have a question

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this is what I do - I listen and try and see what works for me - keep those and toss out the rest.

I'm interested to know why you think RA is like that?

*settles back to listen and learn*

kins

-------Original Message-------

From: Harold Van Tuyl

Date: 04/11/05 12:12:41

Rheumatoid Arthritis

Subject: Re: to D.

I believe that RA is not a single disease but a syndrome or collection of symptoms that are similar from a multiplicity of diseases. I think that is why any attempt to find one solution for all RA is doomed to failure. Some medications work for some people, other medications work for others, and for some no medications seem to work well. The same is true of diets or of antibiotic therapy. I also think there is enough overlap of the various types of RA that some approach may help many types of RA and other approaches may be helpful to only a few types of RA. Remember, this is my theory and not based on specific discussions by others.

The immune system is very complex so that if one part is underactive the body will react by making another part more active to try to achieve some sort of balance. I don't believe that things either enhance or suppress the total immune system. They affect some parts of the immune system and that effect will ripple throughout the body by causing other changes in the immune system to compensate. Again this is my theory and I have not heard others say the same thing.

Although Dovey and I have chosen different ways for handling our RA I don't think we differ greatly in our beliefs about RA. God bless.

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There are seven criteria for diagnosing RA and any four qualify for a positive diagnosis. No single thing distinguishes RA. Some people say seronegative RA is different from seropositive. Some people are benefitted from one medication and others from a different medication. There seems to be no uniformity in response to medications. The Roadback Foundation lists various mycoplasms to select what antibiotics to try to help combat RA. With all of these differences I doubt that RA is a single disease.

If you have questions about my views on the immune system, please let me know what they are. I'll try to supply whatever information I can. God bless.

----- Original Message -----

From: kins, learning to love my 40's

Rheumatoid Arthritis

Sent: Monday, April 11, 2005 3:00 PM

Subject: Re: Harold, I have a question

this is what I do - I listen and try and see what works for me - keep those and toss out the rest.

I'm interested to know why you think RA is like that?

*settles back to listen and learn*

kins

-------Original Message-------

From: Harold Van Tuyl

Date: 04/11/05 12:12:41

Rheumatoid Arthritis

Subject: Re: to D.

I believe that RA is not a single disease but a syndrome or collection of symptoms that are similar from a multiplicity of diseases. I think that is why any attempt to find one solution for all RA is doomed to failure. Some medications work for some people, other medications work for others, and for some no medications seem to work well. The same is true of diets or of antibiotic therapy. I also think there is enough overlap of the various types of RA that some approach may help many types of RA and other approaches may be helpful to only a few types of RA. Remember, this is my theory and not based on specific discussions by others.

The immune system is very complex so that if one part is underactive the body will react by making another part more active to try to achieve some sort of balance. I don't believe that things either enhance or suppress the total immune system. They affect some parts of the immune system and that effect will ripple throughout the body by causing other changes in the immune system to compensate. Again this is my theory and I have not heard others say the same thing.

Although Dovey and I have chosen different ways for handling our RA I don't think we differ greatly in our beliefs about RA. God bless.

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this is all just very interesting to me - I'm willing to listen to whatever you want to share :)

kins

-------Original Message-------

From: Harold Van Tuyl

Date: 04/12/05 13:46:29

Rheumatoid Arthritis

Subject: Re: Re: Harold, I have a question

There are seven criteria for diagnosing RA and any four qualify for a positive diagnosis. No single thing distinguishes RA. Some people say seronegative RA is different from seropositive. Some people are benefitted from one medication and others from a different medication. There seems to be no uniformity in response to medications. The Roadback Foundation lists various mycoplasms to select what antibiotics to try to help combat RA. With all of these differences I doubt that RA is a single disease.

If you have questions about my views on the immune system, please let me know what they are. I'll try to supply whatever information I can. God bless.

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This is long and should probably be sent to you privately instead of posting it. I can be reached at hvantuyl@... if you want to continue this discussion.

I think a lot of us expect RA to have some predictability to it and I don't think that is possible. In my opinion RA is not a single disease but a syndrome or combination of symptoms that can come from a variety of diseases that we do not understand. For want of a specific name for each variant of RA we just call them all RA (but some people do differentiate seronegative RA). The Roadback Foundation says that antibiotic therapy needs to be tailored for the specific organism causing RA and identify several with different antibiotic treatments for the different organisms. Some people respond well to antibiotic therapy and others do not. Likewise people react differently to different RA medicines. On average the TNF biologics are more effective than Kineret but for some people the TNF biologics do nothing but Kineret is their wonder drug.Unfortunately medical studies generally lump people into large categories and do not look for fine structure that might show differences in the diseases. If a drug helps half of the people with RA the drug manufacturer who runs the clinical trials does not care about what characteristics the group has who are not benefited by the drug. This group that is not benefited might have a different disease from those who are benefited.Likewise for clinical markers such as SED rate and CRP. Some people have very active RA without elevated markers. This might really be a different disease than with those who have elevated markers but studies are not run to find out about this.I think people talk about early damage to encourage early and aggressive treatment. If left untreated I think damage will continue until joints are destroyed but with proper treatment there is little continuing damage after the first year or two. Of course, a few people can't seem to find the proper treatment for them and so damage continues.I think doctors learn certain things and accept them as facts regardless of other information to the contrary. I got RA after a flu-like problem that started shortly after getting my annual flu shot. Doctors say that flu shots cannot cause the flu but I have heard of others also getting flu after a shot. I think doctors hear the conclusion that flu shots cannot cause flu so they never report cases of this. Flu shots are different each year because of different variants of the flu that they are designed against but doctors stick by the conclusion that was reached in the studies of earlier flu vaccines and never realize that a new flu vaccine may be different. I still believe in annual flu shots and still get them.

This same bias (bigotry?) applies to rheumatologists. Some were taught that a positive RF in the blood was required for a positive diagnosis and refuse to diagnose seronegative RA. Others were taught that damage only occurs when there is swelling so they wait for swelling before beginning treatment. Some want to avoid side effects of medicines so they wait for irreversible damage to occur before starting medicines. Everyone has biases and preconceived notions (yes, your truly included). I truly believe that the collective evidence from this board conveys a more accurate picture of RA than that held by any single doctor. Of course, our doctors know a lot of other things that we do not glean from this board so we must rely on our doctors but we should also be knowledgeable and question our doctors (or change doctors) if we are not being treated in an appropriate way.

I am struck by the variety of drugs that are used successfully to treat RA. Some are apparently fairly broad-spectrum drugs that benefit many people (Methotrexate?) and others seem to benefit fewer people but are the only one some find useful (Kineret?). Also the mechanism of operation of many drugs is not really known. This is one of the reasons why I think RA is a syndrome rather than a single disease. The immune system is an amazingly complex system of interrelated components. I think in RA some component of the immune system is out of order and this affects other components of the immune system. When we treat the anti-TNF with Humira, Enbrel or Remicade we may not be treating the primary cause of RA but we may be treating something that is a secondary effect of the real cause. In fact, there may be several different real causes that all trigger the TNF, perhaps to different extents. Then others are not helped by the anti-TNF biologics but are helped by Kineret that acts on IL-1 or something like that. This was brought home to me forcefully when I read about the Phase III clinical trials on Rituxin (Rituximab) that is being worked on primarily by of London. That has been successful when nothing else was. Also the immune system is so complex that I doubt that any of the strong drugs acts on a single component of the immune system. (I know nothing about the immune system but that doesn’t keep me from having opinions.)

I make more mistakes than the average person because I try to plow new ground instead of sticking with conventional wisdom. If anyone sees mistakes in any of my posts please let me know. I can learn when someone disagrees with me and I like to learn. God bless.

----- Original Message -----

From: kins, learning to love my 40's

Rheumatoid Arthritis

Sent: Tuesday, April 12, 2005 8:00 PM

Subject: Re: Re: Harold, I have a question

this is all just very interesting to me - I'm willing to listen to whatever you want to share :)

kins

-------Original Message-------

From: Harold Van Tuyl

Date: 04/12/05 13:46:29

Rheumatoid Arthritis

Subject: Re: Re: Harold, I have a question

There are seven criteria for diagnosing RA and any four qualify for a positive diagnosis. No single thing distinguishes RA. Some people say seronegative RA is different from seropositive. Some people are benefitted from one medication and others from a different medication. There seems to be no uniformity in response to medications. The Roadback Foundation lists various mycoplasms to select what antibiotics to try to help combat RA. With all of these differences I doubt that RA is a single disease.

If you have questions about my views on the immune system, please let me know what they are. I'll try to supply whatever information I can. God bless.

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