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Posted Dec 19 2009 3:41pm
I spoke with my ME/CFS doctor this week. I'm feeling very grateful for him. It really helps to have a doctor who gets it. We had a good laugh about the doc-in-the-box telling me that my gallbladder pain was a "muscle strain." Laughing about it felt satisfying. He had a couple ideas about what it could be. One was that it was Biliary dysfunction where the muscles in the biliary tract don't work correctly. It can be triggered by food allergies so I'll be going on a food allergy elimination diet to figure out if I have food allergies. He said the most likely culprits are dairy, soy, peanuts, gluten, and /or eggs. I'll eliminate all for three weeks then slowly add each one in (one at a time) to see what sort of reaction I have.
He also said that I could have chronic gallbladder inflammation in which case I need to have surgery to have it removed. The trick is how do I find a doctor willing to order the necessary tests to find out if my gallbladder is inflamed.

The third idea he mentioned was that toxins might be recirculating so I might try some sort of binder like cholestryamine ( I still have some leftover from the mold fiasco last year), chlorella, or bentonite clay. I decided against the clay because I already have enough trouble keeping water in my system so I'm chronically dehydrated. Apparently if one doesn't drink enough water the clay "can form a brick in the intestines."

I asked about XMRV but there is no other news. I don't have my results yet and it's unclear when the results will be in.

I've been wanting something to address all the inflammation in my body and this time remembered to ask so here is what he recommends: 1) kaprex from Emerson or 2) Zywobin Forte from Emerson Ecologies. I haven't tried either one yet so I can't say how either one works.

The early morning adrenaline like surges and subsequent anxiety is due to increasing autonomic nervous system dysfunction. He recommended a homeopathic remedy called "Coro Calm" and a supplement called "Phenibut." I'm trying to find the best source to purchase both.

We  talked about stem cells being my best chance at getting a big jump in improvement. He gave me the name of a company doing some stem cell stuff at a fraction of what Cheney charges. I plan on doing more research into stem cell treatment. It's still too soon to try it; Not enough information, too expensive and only 30-40% of people experience improvement,

He does neural therapy and trained under Bigelson so I asked if neural therapy can help autonomic nervous system dysfunction. He said "sometimes" and left it at that.

The not eating very much along with the toe surgery plus the regular ME/CFS stuff has left me quite weak. Most of my time these past 3 weeks has been spent in bed. My toes are healing extremely slowly and one looks like its battling an infection. The last thing I want to do right now is go back on antibiotics.

I've been doing some more reading on Jung. I'm hoping to start writing some articles next year. One of the things I did for my dissertation is read biographies about Jung and Freud (in Jung's case I read Memories, Dreams, and Reflections as well as the biography written by Diedre Baird). I found their personal experiences of death quite fascinating. Even more fascinating to me was how their experiences of death factored into (or not as in the case of Freud)  and influenced their theoretical formulations. My dissertation committee strongly encouraged me to start writing articles so I finally plan on doing just that. I need to focus on something other than this disease.
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