Thanks
@SOC - yeah this is such a mystery. And I often don't know if I belong here. But you guys are without a doubt the most intelligent, informed people in medicine I've ever interacted with. And that includes all my doctors. They may be smarter, but they rarely communicate or invest much time. Which renders their knowledge somewhat useless to me.
Rey basically gave me 1 liners, and left me to figure out the rest. I did not feel like I had much clear communication from her, and that may be because she wasn't sure what to make of the numbers she saw. She suggested Valcyte to address the CMV, but I was just finished taking AZT and other antivirals associated with cancer risk, which are what got me in this situation in the first place (Post exposure prophylaxis). So the last thing I needed to be doing was taking another drug associated with Cancer. Yes I know - most people here feel its not an issue.
Plus, with a negative CMV PCR twice, I wasn't sure what to think. I have researched the possibility of false negatives with CMV PCR and its simply unheard-of. It doesnt exist. You definitely hear about false negatives with other tests. But for example, HIV PCR is never wrong. And nobody could confirm that CMV PCR is ever wrong either. Especially in the presence of a high IGM (current/acute/active). They rely on it heavily for pregnant women as well.
More importantly, doctor after doctor after doctor told me CMV does not cause all these problems I was having. (months of neuropathy, neuromuscular symptoms, nerve pain, severe fatigue, chills, crawling sensations, spine pain, migraines). Most of this resolved with exercise and eliminating gluten (!!!).
Explain that one to me.
Today my picture is a bit different. I get inflammatory symptoms all over when I am run down. Skin issues. Mucoseles. Chalazions. Inflamed lungs. GERD. Lupus-like mask (very mild, derm said it was rosacea) etc. Inflamed armpits, groin, and neck in the glands area, but I don't feel any large swollen glands. It just aches and burns.
Its all so non-specific that it reminds me of people who ultimately ended up with autoimmune diagnoses.
The most upsetting element is this impossible-to-describe sensation. If I do not exercise, after several days, something begins to "build up" inside me and my whole body feels like it is getting very very sick. I can't even describe the sensation. I get inflamed glands (but they dont swell) ... inflamed armpits, inflamed groin tendons (again no ability to feel swollen glands) inflamed lungs .... fatigue. Skin issues.
But I get worse and worse ... until .... I go to the gym and lift weights. ?!? It doesn't make any sense. I must flex my muscles, and I must run on the treadmill and get my lungs inhaling deep ... then this inflammatory monster just "drops off" and becomes subdued. For at least 3-4 days. Then it starts to creep back.
As long as I get good sleep, consistently work out, and avoid gluten, sugar, and stimulants, I can bring myself almost to the point of 100% recovery.
I guess its great that im being forced to eat right and exercise, but it really scares me that whatever this is comes on like a freight train if I stop. My continued increased lymphs and WBC is also a concern as it seems to be steadily rising. Just now past the top limit. Nothing crazy.
I don't know. I can't even communicate to a doctor whats wrong in the 30 second "speed recap" im forced to do when I first see a doctor. Im sure I sound like a complete idiot, and im sure they think im a hypochondriac. But something inside me is happening. Maybe its just the CMV. I know that virus saturates every cell in your body and infects it .... but man this has been 3 years, and whole-body insanity.