Then last year my dad's reoccurence of prostate cancer was misdiagnosed. It spread to his bladder causing his bladder to throw blood clots. He ended up in ER 5 times and was misdiagnosed each time. Luckily for him he switched doctors(and states for that matter) and is responding to treatment.
So I have good reason for not trusting doctors. I must confess this clouds my judgment at times.
This morning I spoke with my local doctor's nurse who told me my liver enzymes were normal. Unbelievable. He even said they could be caused by drinking. I told him I haven't had a drink for 18 years. I said that I've seen the results and they don't seem normal to me. He said he would bring it up with the doctor. Did he ask if my liver hurt or that I've had weight loss? Nope. It also turns out they never sent over the request for the Brain Spect Scan nor had they contacted my insurance company to get prior authorization (thank goodness for the technician I spoke to at the Spect Scan Dept). This doctor is so sure I have a fatal neurodegenerative disease one would think they would have made sure they followed through. I realize doctor's offices are busy and frankly the test is unnecessary because I have ME not ALS or the other things they mentioned. I want to see what's going on in my brain and, these other things have never been ruled out so I think its important to get the test done. I understand why the ALS concern though because they are seeing some of the symptoms (slurred speech, muscle weakness).
In the meantime I received an email from my ME doctor's office saying they wanted to speak to me asap. They called me shortly after I spoke to the nurse at my local doctor's office. My ME doctor said that in their experience with Valcyte they have not had people's liver enzymes go up after 7 monthsh on Valcyte. He wonders if something else is going on with my liver or maybe it was a randome spike (just like my mom). He advised me to restart Valcyte and retest my liver function in one week. If it has gone up then stop Valcyte. Or, if I start feeling nauseaus or have pain in my liver. I interrupted him to say I'm having pain in my liver. Last night it felt like it was throbbing. It was a really weird pain. I'll restart Valcyte and retest in a week. I actually start feeling worse when I'm off Valcyte so I'm fine with going back on.
Even though I'm determined and a fighter there's a part of me that almost doesn't care anymore. So I get cancer and die or I have a heart attack and die. At least I won't have to fight all the time for everything. Or feel the loss of my past and my future. Or feel the friggin exhaustion, the cognitive impairments, the silence of family and friends, the marginalization this illness creates. I won't have to experience the pain I feel when trying to reconnect with people and then tell them about this illness only to never hear from them again. Unfortunately this has been my experience of late with three people, maybe four (I'm hoping the fourth person is just busy). So while I'm fighting hard, at a deeper level I'm getting kind of tired of fighting on my own all the time. I'm actually no longer afraid of death. Sometimes, as I'm laying awake at night unable to sleep I think of what it would be like to be free of this body that no longer works. Sometimes that's what calms my mind down-the thought that I don't have to live this way forever. Really though I don't want to die. But I can't help but thinking about it. After all, my dissertation was about the death experience (both literal and psychological) and its relation to transformation. I went through all of Jung and Freud's writings, took notes on everything they said about death, and analyzed it.
But I digress. I got more test results in the mail. This time it was my C4a and VIP (vasoactive intestinal polypeptide). My C4a was 8232. The high end of the range is 2830. Last year it was in the normal range. My VIP levels were so low they were undetectable (reference range is 23-63). I asked my ME doctor about them and he didn't have much to say. C4a has been used by some ME and LLMD's as a diagnostic indicator for mold or lyme. I would have liked it if my ME doctor would have said "aha, this is what this means" but instead he said "we really don't know what it means but I fully expected this to happen." Well, I didn't! Something is needing to be treated. If lyme is running rampant I'd like to treat that. If it's mold then I need to do something. If its something else...I'd like to figure it out. This is what Dr. Shoemake has to say about it:
Patients with certain HLA genotypes (immunity related genes) may develop inappropriate immune responses which may include antibodies to: myelin basic protein (often from fungal infections), gliadin (wheat-like allergy), and cardiolipins (affects blood clotting). Most devestatingly of all, the complement immune system becomes chronically activated resulting in high levels of C4a.
My level of functioning is getting better in some ways but my neurological functioning is getting worse. My anxiety is skyrocketing again as is sound sensitivity, smell, and my insomnia is really, really bad. I wake up everymorning around 5am with anxiety pounding away (that is if I'm lucky enough to be able to sleep until 5 am.)
So I'm trying to figure it all out. Every ME patient is really on their own to figure this stuff out. Thank God we have each other to talk to, bounce things off of each other, and learn from each other.
More and more I'm coming to the conclusion that ME is primarily a neurological disease that affects the hypothalamus, pituitary gland, frontal lobe, brain stem, and other structures in the brain. Because the brain isn't working right it leads to other problems like low cortisol, low hormones in general, immune system problems which cause infections to reactivate, inflammation to develop, the dysuatonomias, etc...It's just an uneducated guess. But then how does the methylation cyle fit in? I've been doing the simplified protocol for over a year now....with little to show for it. Does the methylation protocol really help anyone? I've heard it does but I'm not seeing it nor are my friends.
In previous entries in my blog I'd write about ME using either ME/CFS or when I'm particularly struggling just simple CFS. From now on I'll be using ME for Myalgic Encephalomyelitis. Because this is what I have. I don't have CFS I have ME.
In the meantime I'm waiting for a packet from Dr. Peterson's office and I'm trying to find contact information for Dr. Kogelnik who was the post doc fellow working with Dr. Montoya. Apparently he has opened his own practice and has started a database to input info from ME patients.
In peace and Wellness,