These fuctional medicine docs rock my world

[Zizzle]

I was looking up Dermatomyositis lectures on youtube and got redirected to functional medicine docs talking about the root causes of autoimmunity. So many take-home messages for us MCers. We truly are ticking time-bombs. I know we concentrate on relief of our symptoms, but the larger battle against mounting autoimmunity should be our larger concern. There's Dr. Hyman in MA of course, but also a woman in Texas with a thoughtful approach. I've had nearly all the testing they recommend, except for heavy metals testing, which I plan to pursue next. Anyone ever do it? Are there more than one type?

I also need to find out my CD4 to CD8 ratio, to help determine whether my autoimmunity is antigen-caused or internal disregulation (metabolic). I also want to find out if low-dose naltrexone might help my case.


http://www.youtube.com/watch?v=A1nGfowaih4

http://www.youtube.com/watch?v=THddIqz9zRk

Then there's this theory of Nucleic Acid Deficiency deficiency that I read about on earth clinic (as a root cause of lupus). See comments by Ted from Bangkok. So many avenues to explore!

http://www.earthclinic.com/CURES/lupus.html

I get my blood results on Tuesday from the rheumy (and probably start Plaquenil). I hope there are pearls of knowledge there to help me find a direction.


I'm not giving up on natural approaches without a fight!

[MBombardier]

Zizzle, this probably has nothing to do with anything, but you are still consuming soy from time to time, right? It just makes me wonder... could soy be exacerbating your symptoms?

[tex]

It just makes me wonder... could soy be exacerbating your symptoms?

I've wondered the same thing, because in addition to the GI issues that can be connected with it, soy has powerful hormonal (mostly estrogenic, I suppose) effects. To my way of thinking, that makes it a prime candidate for causing or contributing to skin issues.

Tex

P. S. Wow! This makes the third in a row, for me — a new record.

[Zizzle]

With my daughter's soy allergy, my soy consumption went down drastically. I have food with small amounts of GF soy sauce maybe twice a month and have no ill effects. Very little soy lecithin now too. Supplements are soy-free. I hear you, but I just don't see a correlation.

IN FACT, (you're not gonna like this theory) I noticed that the rash really started to take off this fall when the MC symptoms were largely under control, and when I was eating the healthiest diet to date -- rarely eating out, much less soy exposure, very little risk of gluten cross-contamination, etc.

I'm wondering whether my immune system didn't have enough to keep it busy in my intestines and decided to move on to the skin in earnest? Maybe small doses of offending foods could keep the lymphocytes busy and away from my skin and muscles??

Frankly, I'd gladly trade this skin rash for some D.

[Zizzle]

The only sure-fire thing that turns on the rash is alcohol in all forms. Even just a couple of sips, but it's transient. Probably a histamine or yeast or vasodilation reaction.

[tex]

I'm wondering whether my immune system didn't have enough to keep it busy in my intestines and decided to move on to the skin in earnest?

That's probably true, but the question is, "Why is your immune system running amuck in the first place?" Everything happens for a reason.

The only sure-fire thing that turns on the rash is alcohol in all forms. Even just a couple of sips, but it's transient.

IMO, this pinpoints the problem. The fact that your immune system would respond so radically to a couple of sips of alcohol, suggests to me that you still have a major leaky gut problem, and this is what is driving your immune system to attack various parts of your body. Your intestinal permeability has never been resolved. If it had been resolved, a sip of alcohol now and then would not trigger such a potent response.

IMO, stress and alcohol are by far THE most prominent triggers for leaky gut, and leaky gut initiates a cascade of events that includes the degranulation of mast cells and the production of other pro-inflammatory mediators. Either stress or something in your diet is maintaining a chronic state of increased intestinal permeability, and this is the reason why your immune system continues to wage war on your body, in one location or another. You can consult with every medical expert out there, and do all the tests they can think of, but until your intestinal permeability issue is resolved, your immune system will continue to take out it's wrath on selected parts of your body (one at a time, of course).

And the "something in your diet" that I referred to might be nickel, for example.

Tex

[Zizzle]

I hear you Tex, loud and clear.

My DO stressed the leaky gut issue too -- despite normal digestive tests, my intestinal permeability screen was still terrible. My hubby and I are working on decreasing my stress burden, and I've eliminated alcohol from my diet, much to the dismay of my husband's entire semi-alcoholic family. In some respects, it's almost harder to say no to a glass of wine with a meal than to gluten!

In addition to a rediculously clean and healthy diet, I'm now debating about which remaining MRT foods to eliminate. Of the 29 moderately reactive foods, I've dropped all but 7, which I try to eat sparingly -- onions, garlic, potato, cucumber, pork, vanilla, and apples. If I have to go further, garlic will still be a deal-breaker. Just not gonna happen.

I've reduced my high-nickel foods too.

I called my dentist today. I will have my 2 amalgam fillings replaced in early January, if not sooner. I'm trying to stick to the facts, not the fad, but I honestly am blown away by the research studies demonstrating that the people who get the most relief from removing metal fillings are the ones with metal allergies. Duh, why didn't I think of that? I wasn't correlating the nickel sensitivity to mercury and other metals, but apparently, once you are sensitized to one metal, you're really sensitive to most of them.

I guess my approach is to eliminate every possible trigger and fuel for this disease and hope for the best.

[CathyMe.]

I was looking up Dermatomyositis lectures on youtube and got redirected to functional medicine docs talking about the root causes of autoimmunity. So many take-home messages for us MCers. We truly are ticking time-bombs. I know we concentrate on relief of our symptoms, but the larger battle against mounting autoimmunity should be our larger concern. There's Dr. Hyman in MA of course, but also a woman in Texas with a thoughtful approach. I've had nearly all the testing they recommend, except for heavy metals testing, which I plan to pursue next. Anyone ever do it? Are there more than one type?

Hi Zizzle,
I too have been researching functional medicine and have made an appointment with a FNP that is certified in functional medicine in early January. I debated going to Dr. Hyman's practice in Boston but decided to stick closer to home and his waiting time was too far out for me. I have forwarded all of my test results to her office and I'll be interested to see what she wants to do for further testing. I also look forward to having one person look @ the entire system rather than piecemeal. This approach makes so much sense to me. I work as a School Psychologist and my philosophy is a systems based approach, looking @ at the environment, parents, etc.etc., rather than just focusing on the child. Good luck in your quest!

[tex]

Zizzle,

After your leaky gut heals, you may be able to reintroduce wine and other drinks (in moderation) back into your diet, so that's something to look forward to.

I wasn't correlating the nickel sensitivity to mercury and other metals, but apparently, once you are sensitized to one metal, you're really sensitive to most of them.

That had never occurred to me, either, and presumably that's something that no one is likely to realize, unless they see the research data. This strikes me as being analogous to the situation with gluten sensitivity. Once we become sensitive to gluten, then we are suddenly also sensitive to other foods (such as dairy, soy, etc.).

Hopefully, the dental work will bring instant improvement.

Tex

[Gloria]

Zizzle,

One food that you probably eat that is very high in histamines is tomato. I hope that replacing the fillings takes away any need for you to eliminate more foods. Tomato was hard for me to give up. It seemed like it was part of every favorite recipe of mine.

Gloria

[Zizzle]

I actually eat very little tomato. My kids have an aversion to them, same as I did when I was a kid, so I rarely buy them. We sometimes eat tomato sauce on GF pasta, but pasta is rare in my household now too.