Saturday, December 19, 2009

Update

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.

6 comments:

Toni said...

It's good to hear that you've found a doctor you can trust, Terri. And I it's exciting that you're reading and even thinking of writing again. It's been a tough year for you. I hope 2010 is easier -- it IS a new decade after all!

All my best,
Toni

cfswarrior said...

Thank you Toni. It's always wonderful to hear from you. It has been a tough year. I'm looking forward to 2010 and the next decade. Let's hope it brings us some answers...

JamesD said...

This doctor sounds encouraging! I know you can get phenibut through bodybuilding.com. I take the Now brand L-theanine and that seems to help me some, but I havent tried the phenibut yet. Please keep us posted if the phenibut and the coro-calm work for you. Id be interested in trying them if you find they work well for you. Good luck and I am glad things are looking up!

Joanne said...

Interesting to hear you talk about inflamation and the gall bladder problems. My ME/CFS was found to be Lyme Disease and on antibiotics has improved to nearly 100%.
One of my early symptoms and for a period of nearly 5 years was gall bladder pain especially soon after eating fatty foods. Two scans showed no sign of stones but interestingly whilst on Doxycicline the gall bladder pain went away and came back when I changed to amoxycillin (after photo sensitive reaction to doxy).
Later my sinus throat swallowing problems returmed and GP put me on Clarythromycin with amoxycillin within days Gall Bladder pain went and didn't return, along with many other symptoms.

Your comments about Inflamation and muscle problems were interesting because apart from arthritis, muscle weakness has been a major problem but now I wonder whether gall bladder and bladder problems were more to do with the muscles as too I wonder about the swallowing difficulties.

Who knows but vigilance and keeping a tab on symptoms and responses is a good aide to finding what treatments work for each of us.

Now after 2 1/2 years antibiotics I stopped 7 weeks ago and although initialy symptoms deteriorated things are picking up so fingers crossed my immune system will get in control.

Jo said...

Great! A doc with a sense of humour and a listening ear - what a fab combination. Wishing you peace and wellness in abundance in this holiday season.

Renee said...

Great to hear you like and trust your doctor Terri. That is half the battle isn't it. Sure hope you find something that helps with the early morning anxiety too....
Alleriges affect us so much don't they. I do okay eating kefir, but butter gives me stomach pain....so does peanut butter if I eat it more than once in a week. Gluten...nasty.
I sure hope that you find answers in the elimination diet too. Joel was surprised at what he was reacting to when he did it.
I think I read a few times that dairy increases inflammation too?
So much to remember!
It all sounds good, Terri and moving forward is so uplifting!
Wishing you the best here...