Interesting Article on Root of Autoimmune Disease

[Sangye]

Though holistic physicians have been saying all this for decades, I thought the author did a good job of explaining it. We're not going to cure Wegs with these methods, but the imbalances he lists should definitely be addressed if possible.

Mark Hyman, MD: How to Stop Attacking Yourself: 9 Steps to Heal Autoimmune Disease (http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html)

[elephant]

How many doctors really do this? I have seen none. You have to ask for this.
Thanks Sangye, it was a good article. I often wonder do I have a weird allergy to something, even though I got check for allergies.

[JanW]

Leaving aside any comment about functional medicine, I will say that the researchers were VERY clear that all of the immunos that we are on are cancer causing, not just ctx, and there's nothing that can be done about that. Suppressing the immune system also means that it can't clean up the rogue cells that ultimately lead to cancer. That's part of the reason why there is a rethink about using these meds long term to 'maintain' remission, since that's not really what's going on. Of course, it's so clear to me that some docs would naturally think that if their patients remain on them without relapse, they are preventing the relapse. They aren't making the appropriate cost/benefit analysis once you are put into remission from your initial flare. The cost/benefit may well be treating the relaspe when it arises, and not causing you irreversible damage from the administration of drugs that aren't needed.

[Jack]

I think a health warning should be added to that article for those with Wegener's. I would not disagree with much of what is said, but the implication is that this is the cure. It is not a cure for Wegener's, although it may well help and it should be remembered that Wegener's can kill or seriously damage you while experimenting with alternative treatments.

[JanW]

I agree Jack.

The issue with alternative therapies, as I see it, is that even beyond the fact that they will not cure WG (as Sangye said upthread), most people aren't docs like she is and can barely begin to evaluate the conventional medical therapies far less alternatives ones that might really vary by practitioner. Sangye would know right away if someone is not making sense in this arena, but others may not. I met a guy at the conf whose wife had Takayasu's syndrome and because of where he lived (Alaska) and, at some points a lack of medical insurance, and because she was desparately ill they were willing to try all kinds of alternative therapies. She is no better. Of course this can happen with conventional medicine as well, but there is much more information on the kinds of drugs that we take, or even the standard of care for our disease than may be readily available on these alternative approaches.

As an aside, of all the people I met at the conference, I felt the sorriest for him. He was younger than me (probably under 40), there because his wife can barely walk to the bathroom and he has a four year old daughter. His wife has been sick since right after her birth and has already had major heart surgeries (Takayasu's effects large cells, so gets to the big organs right away). There were only six other of these patients even there (Weggies dominate VF, which was the WG Association until six or seven years ago). It was quite sad. He was looking for a miracle and was talking about Mayo AZ (I thought of you, Sangye!) and how he really liked the docs there but then could never get the guy to return his calls once he left AZ. We repeatedly (a bunch of us were at dinner) suggested a major center, but he was pretty resistant. He thinks it will be no different than AZ.

[Jack]

Jan, I think there is a lot of truth in what is being said about the dangers of the medication sometimes outweighing the possible effects of the disease. In my own case, I am suffering serious drug side effects, but have not had any major Wegener's symptoms for around 15 years. Since I have a transplant that must be protected and also become symptomatic when I reduce my medication I have little choice except to continue, but in most cases I'm sure this would not be justified. A Wegener's flare can be treated and stopped before causing more damage with careful monitoring and the willingness of the patient to report symptoms at an early stage.

[JanW]

This conference really changed my mindset. I think after diagnosis and being set on the right track I was just so happy that the disease was caught before I had serious damage that I didn't really care if I needed to be on meds the rest of my life. And, just a little, I thought my rheumy was likely overreacting talking about the danger of pred. I was a bit worried too, before we knew that the mtx was going to work, that he would not put me on any steroid (I remember you, Jack, in particular pointing out that this was not the standard of care, and you were, and are, absolutely correct).

However, while researchers at the symposium would all start their patients on pred and immuno, the speed with which they try to get their patients off both is not, I would say, the standard of care that people on these boards would experience. They know that right now we middle aged patients look good (and 50 years ago we would be dead), but I think they think they are likely looking at a lot of oncology patients another 20 years down the road (not to mention fractures, diabetes, etc.)

[Sangye]

I want to emphasize that holistic remedies cannot cure Wegs and can only be used with certain limits. With that being said, the majority of what this article lists as "cures" are things that can safely be addressed for Weggies by a holistic physician who understands our limits. Would it cure Wegs? No way. But it might help it stay under control, could certainly help prevent another AI disease from developing and would definitely make us feel better.

[Sangye]

Jan, I cannot thank you enough for going to that Symposium and getting us this info. It's really changed my thinking, too.

I'm fully aware of the long-term dangers of these meds and am often saddened by how cavalier many of us become about taking extremely toxic drugs like chemo and extremely damaging drugs like pred. When I was a new Weggie I was only looking at the long road-- how would these drugs and procedures (eg radiation exposure) affect me years from now. Now I'm more likely to look only at the short-term-- what do I have to do right now so I can stay alive and have a livable life?

Thank goodness Dr Seo always has his eyes on the entire road. I'd have us in the ditch by now.

[pberggren1]

Ya, my outlook has changed somewhat as well with what JanW has shared from the Symposium.

I am going to discuss with my doc about going off of Pred, Cellcept, and Bactrim altogether. I can better see now that I do not need to be on those meds. When I flared the first time I was on methotrexate and pred. The second time I was drug free for over a year. The third time I was on Cellcept and pred. So there is obviously no way of knowing or predicting when a flare is going to come.

I am definitely going to try and take better care of my health from a diet prospective.

Thanks JanW for sharing this with us.

[Jack]

Sound like you may be an ideal candidate for trying to go med free if you can manage to come off them without symptoms.

[pberggren1]

I am definitely going to try. I will print off all of what Janw said from the Symposium and show and discuss that with my doc along with tapering off the meds. Hopefully I am going to be symptom free.

[Sangye]

How many doctors really do this? I have seen none. You have to ask for this.

That's because MDs are not trained in this. They should leave it to holistic physicians. If you mention these things to most MDs--including our awesome Wegs specialists-- you can expect them to roll their eyes or shrug at best. It's just not their area of expertise.

[elephant]

Phil you flared alot! But it is worth a try....to get off the medicines. I am calling Dr Langford tomorrow, and need to ask her a couple of questions. Oh boy.