I signed up for an account on the forum of one of the larger Myalgic Encephalomyelitis/Chronic Fatigue Syndrome sites and posted there asking for some suggestions on where I might look for answers to my issues. I am not sure if that’s the right place to be looking, but a lot of my research on dysautonomia points to ME/CFS or to Lyme disease. I’ve tested negative for Lyme twice, by the way, including with the Western Blot test; I know that doesn’t rule it out but finding answers in that direction is like stepping on a wasp nest.
Here’s what I posted – I thought I’d put it up here as it explains a lot of the things I haven’t really gone into detail about here before:
I am new here and I’m not sure if I am in the right place – I haven’t been diagnosed with ME/CFS or Fibro or, well, anything specific yet. All I have is an ever increasing list of bizarre symptoms, and medical bills, and frustration. The most recent developments have been POTS and orthostatic hypotension, which led me to looking into dysautonomia (that matches a bunch of other symptoms I have as well) and I thought “aha! that’s what I have!” except I dug a bit further and realized that’s not really an illness either, more of a set of things that go wrong when something else is out of whack, and one of those something elses is ME/CFS, so here I am.
About ten years ago I had some sort of illness with extreme fatigue, fever, aches – I was flat out for days. I didn’t have insurance at the time, but my boss at the vet clinic I worked at paid for me to go to a doctor, who said it was probably a tick or mosquito borne illness and wrote me a prescription for doxycycline. No testing was done because of the aforementioned ‘no insurance’. I also had to vacate a mold infested house that had caused me some respiratory issues a few month before that. I did get better, but the symptoms returned periodically over the next few years – it felt like coming down with a terrible flu, but the flu never came, just the aching joints, sore skin, fever, and fatigue. I’d also get a rash around my temple area, large painful bumps that were not pimples. Several times I was so weak I could barely get out of bed. I did have insurance by then, and actually worked for a lab company so got free bloodwork. My doctor wrote up lab orders for everything she could think of including blood cultures – nothing specific came up.
More time passed; the episodes still come and go but have slightly lessened in severity over the years, at least as far as the aches and fever. But new symptoms came. I started to have terrible issues with night-time insomnia and daytime drowsiness. This led to a sleep study and a diagnosis of Narcolepsy with Cataplexy but I’m not sure that’s accurate, or at least not as a primary condition. My eosinophils are always slightly high but my neutrophils and overall white count fluctuate at times, one time so low that I was sent to a hematologist who wanted to do a bone marrow test, but then the next count was low normal and he said to just watch it. It was low again on my last annual bloodwork. I could not take the medication they put me on for the narcolepsy (a central nervous system depressant, basically the legal version of GHB) as it affected me so badly I think it damaged my nervous system (nothing found on an MRI) and since then I’ve added bladder issues, gastrointestinal issues, orthostatic hypotension and tachycardia, and a host of other oddities. My primary care physician dutifully shuffles me off to whatever specialist seems appropriate for each new symptom but no one seems to want to work together to assemble the various pieces into whatever whole they are all part of.
I am not sure what direction to go in next. It’s been over a decade now, and the doctors I work with agree that there’s something going on, but since they haven’t been able to identify it, it seems like they are content to sit back and wait and see if it turns into something they recognize. In the meantime, I am slowly watching my quality of life eroded steadily. The fatigue, fog, and dizziness are making it hard to do my job. Sometimes, I have good days, and that makes it even worse, because the contrast reminds me just how small my world has gotten.
Anyway, any suggestions of where I might look for some answers would be greatly appreciated. I am in Western NC.
It took me over a week to build up the nerve to post there, and to assemble my thoughts into something that (hopefully) was reasonably concise. I have my fingers crossed that someone in my region might be able to recommend a provider that is better able to help me than the current ones.
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