Blah. I've had such a hard time motivating myself to get this post written and I'm not entirely sure why. Part of it, I'm sure, is how crappy I have felt of late. After a wonderful vacation week over Thanksgiving with remarkably little incident, I returned home and promptly found myself in a puddle on the floor all over again. Mostly I just feel so disoriented all the time. I can't hardly figure out where I am or what I am supposed to be doing. The good news (rather, great news!) is that my sleep schedule has improved dramatically since Thanksgiving break. I have to assume that this has something to do with some of the new supplements I am on because, even though it also required an enormous amount of discipline, willpower, crappy moods, and sleeping pills to start forcing myself to sleep at "normal" times and wake up feeling mostly rested, I know there have also been numerous times when I invested all those things in trying to re-set my internal clock and accomplished nothing. For those who don't know, over the last several months I have struggled immensely with various hormone imbalances that affected my ability to sleep. It got to the point where "normal" for me meant falling asleep sometime between 6-8am and waking up around 3-4pm. I would lie in bed for hours, too tired to think straight and yet something in my body was convinced it was time to be awake. If I ever did manage to fall asleep early (meaning 1-2am usually) I would wake up the next day feeling like I hadn't slept at all, despite having gotten 10 hours of sleep. All that to say, being able to be asleep by midnight most nights now and waking up by 10 or 11 feeling rested feels like nothing short of a miracle. Unfortunately, last night was the first night in a couple weeks that broke this cycle--I had my old insomnia until about 3:30 this morning and couldn't get out of bed until 1pm--but I am hoping this is just a fluke incident brought on by stress or something.
But I didn't meant to start ranting about sleep. I am determined to finally explain the results of my last doctors appointment. I think I mentioned that we were reviewing some blood test results and that, for the first time in years, they actually contained some semi-definitive results! Some context: we are searching for what kind of underlying cause is preventing me from being able to get better, and what may have started the chain reaction of problems in the first place. The last set of tests we ran tested for some rare genetic disorders and 2 of them came back positive--however they don't fully explain my symptoms and, frankly, I don't think one of them fits at all. If it weren't for the bloodwork clearly showing otherwise, I would be certain we were wrong, and I hope to discuss the possibility of a mistake more with my doctor soon. I have been treating these two conditions for the last 8 weeks and, though I have seen certain small improvements (such as in my sleep patterns) very little has changed.
The new tests we ran were testing for certain markers of a "biotoxin"--something in my body or blood that doesn't belong and is invisibly attacking my system. This could be anything from a fungal infection to a parasite to a viral infection. One of the tests (the Fibrinogen) came back normal, but the other two (MMP9 and MSH) were both radically high, clearly indicating that I DO have some sort of biotoxic infection! I'm sure I have never been so happy to learn that I am infected with some mysterious disease before as I am now. We are still a long way from a technical diagnosis, but at least now we know we are in the right ballpark. This fits very elegantly into my medical history as well, since all this started with an unknown viral infection (remember the "mono-like virus" I contracted in Jan 07?) and Epstein Barr (the mono virus) is commonly known to sometimes remain in the body and continue attacking, causing Chronic Fatigue.
So here's the bad news. #1: It is incredibly difficult to test beyond this point. There are some blood panels we can run for some of the more common viral infections--such as Epstein Barr or Lyme disease--but they are very expensive and usually inconclusive. From what I am learning, latent infections like this are just beginning to be identified by the scientific community. Not long ago, all that existed were tests that test for antibodies in the system; however these tests can only determine if the person has ever had the virus, not whether or not it is still present. There are tests starting to be developed, my doctor called them "PCR tests," which test for the genetic presence of a virus, but they are not well known and can only test for certain viruses. With so many different possible infections, each with unique strains and mutations, many of which may still be undiscovered much less measurable, it is an impossible task to try and test for them all. According to my doctor, testing in this way is basically stabbing in the dark hoping to hit the right one, and only gets a definitive answer about 20-30% of the time. Bad news #2 is that in most cases like mine, because the initial virus so severely weakens the immune system, it is very likely that there is more than one infection present in the system. We can guess that it started with some mutation of Epstein Barr, but given how many years have passed since then with a practically non-existent immune system, who knows what else I may have contracted. So, even if we did stab in the dark and happen to hit something, we couldn't be certain whether or not that is all there is.
So what now? While we make a decision about how much testing we want to, and can afford to, do right now, my doctor's office has a unique alternative method of diagnosis and treatment. Another reason I've had a hard time motivating myself to write this post is because I don't feel confident that I can explain how this works very well yet, so I will probably postpone many of the details until after I learn more. One week from today I am going in to try these "muscle tests" that my doctor believes is likely to be a more effective way to determine how to treat me. It may or may not explain exactly what kind of infection I have, but it sounds like it will help narrow down the range and hopefully provide information on what kinds of treatments will be effective. I know it has something to do with testing my muscle strength during exposure to certain compounds or medications to learn what my body "likes" or "dislikes," as it were. Hopefully I will know more after next week. I am (obviously) a little unsure about this process, but my doctor seems confident and optimistic about it and I am very excited to see what kind of results it produces.
Sorry this was so long. I am wrestling to find the balance between enough detail to be interesting but not so much that it becomes tedious. If anyone has questions or wants to hear more, please ask!
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