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.

Friday, December 11, 2009

Doc In A Box

My computer went down again so I'm borrowing one but only for a little while so this will be another brief entry. It's a bit disorienting for me to be without a computer as its my only link to the outside world. Having contact with other ME/CFS patients is vital for me.

Thank you for all of your comments. They have been very helpful.

I spoke with my doctor. I'll be finding a new one. I really wish Dr. Scott and Dr. Kliman hadn't died. Anyway, this new soon to be ex doctor told me my ultrasound was normal and that I probably have a muscle strain! That's probably one of the silliest comments a doctor has made to me. I have classic gallbladder symptoms: bad pain between my shoulder blades after eating certain foods, pain that radiates to my right shoulder, some nausea, localized gallbladder pain, etc..... Maybe its me but I don't think that muscle strains cause these symptoms. She told me to take Advil and that was it. End of conversation.

I made an appointment with my ME/CFS doctor for Monday thank goodness. I'll bring up the suggestions that everyone made in my last post. I'm hoping he can order a HIDA Scan to see if my gallbladder is functioning. Something is wrong and its not a muscle strain. I know it.

I just want to get this dealt with whatever it takes so I can get on with figuring out the next step in my healing.

Brief Update

My computer has some sort of virus and hasn't been working. For some reason it is working now but it's shaky and I'm expecting it to go out again.

I had the ultrasound Weds and am awaiting a call back from the doctor. The tech said my gallbladder, liver, pancreas, and kidneys looked fine. It doesn't make sense. It hurt when she scanned the gallbladder area. I said "that must be my gallbladder because that hurts.

For some reason I wake up every morning around 5am filled with anxiety. It's very strange and seems to be physiological. My heart is racing etc....I'm not sure what's going on with that.

No news from the WPI. They have been very silent lately which makes me a bit nervous. I wonder what has changed from all the news to silence. I was going to donate some money but have decided to hold off until I learn more info. I'm beginning to wonder if the XMRV was a bit hyped up.

Monday, December 7, 2009

Gallbladder Woes?

It is quite cold outside which means it's also cold inside. The insulation in this place is quite poor so in the Winter I'm holed up in the bedroom with a heater. It's too expensive to heat the rest of the place so when I leave the bedroom its as if I'm leaving to go outside. I have to bundle up. I'm grateful for a warm bedroom though.

Last Monday I had the procedure done on my toenails where the podiatrist removed part of the nail down to the quick and then put a solution on them that would prevent the nail from growing back. It's strange that is was almost a year to the day that I had the same procedure done. At one point the doctor was giving me a shot between my toes. It hurt. I found myself thinking "he is not giving me a shot between my toes" and "isn't that what they do to torture people?" I didn't remember it being as painful last year. The rest of the procedure was a breeze. So far they are healing nicely and I find myself feeling proud of them. At least something in my body is going right (knocking on wood).

I did crash from it and spent the rest of the week in bed. It's been only today that I've been up and about a little more.

But it seems that my gallbladder problems have worsened. I don't know for sure that it is my gallbladder. I've stopped eating anything with any fat in it for the past week and today it seems a little spasm was triggered just by drinking water so I've basically stopped eating. Thankfully I'll see a doctor tomorrow. Hopefully she'll order tests right away so I can find out for certain what is going on. I've been stressed at the prospect of possibly having to have another surgery. I keep trying to find that inner place of knowing everything will be okay but find I have all these thought of what could go wrong. I worry about the POTS, my adrenal functioning, etc....It seems that the secondary complications of having this disease never end.

I've been feeling a lot of anxiety in the early morning hours. That's when I have all the worst case scenarios play out. I'm utilizing the amygdala retraining techniques to combat them. I need to watch the video again to remind me. It does help though not a cure.

I'm grateful that some neurological symptoms I was struggling with a few weeks ago have eased up. I'm not having the vertigo feeling or the sensation that I'm on the verge of a seizure. Nor am I having the nausea thank goodness.

Now its just the gallbladder, liver, pancrea section that is really troubling me (along with my regular disease). I'm a little nervous about getting weighed tomorrow. I think I've lost maybe 25 pounds now? I know that weight gain and loss are part of this disease but I can't get my mom's words out of my head. A couple weeks before her diagnosis of stage IV cancer she remarked at having lost 26 pounds. I remember her saying "I've lost 26 pounds now! Whatever I have I'm glad I'm losing weight!" She said it with pride but I could also hear the concern in her voice. She'd been on weight watchers but the 26 pounds was lost in a very short period of time.

Has anyone had their gallbladder out or had chronic pancreatitis? Any tips or suggestions?