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I'm slowly recovering from a "bout" with demons...All week long, well, ever since Tuesday night's writing group actually, where I became suddenly distracted by numbers and letters from random sources -- license plates, book spines, letters popping off the pages of writing in seemingly significant combinations...All week long I have been in a state of increasing distress, culminating yesterday, during a migraine with a call to Dr L, my infectious disease doc. The spur to call him was 1) an extremely exaggerated startle reaction when the morning nurse Lisa, knocked on the door -- I screamed and jumped, though I'd known she was coming! 2) I was thinking I didn't want to live any longer, that it might be better, the world might be better off if I were dead 3) the sudden nagging remembering that -- wait a minute, I have been here before, haven't I...? And what came of it? Oh, yeah, it turned out to be, what? Lyme disease!
So, I called Dr L, first to ask for my bloodwork to be faxed to me -- it seems I have kidney malfunction that needs to be looked into. And then asked to speak to his answering machine. I told it that I thought the antibiotics were not working despite the increase, that my symptoms were worse than ever, that I didn't know what to do...
Well, forgive me if I crib an entry I posted over at the Schizophrenia Connection but here's what I offered over there:
I've written elsewhere that my worst "break" -- my Y2K meltdown -- coincided with, was actually caused by I believe, a case of neuro-Lyme disease. Not only do I believe this, but so does my twin sister, one psychiatrist in my life as well as the "famous Dr O," the other psychiatrist in my life. (I should mention that there is also my brother, Chip, who is yet a third psychiatrist and there are others beyond those, but you get my point...). The reason we could link the two, the infection and the psychosis, was that I had an MRI during the psychosis, and an MRI nine months later and it turned out there was a noticeable difference between them. The later one showed multiple patches of scar tissue where none was seen in the MRI nine months earlier. This would indicate that something had been going on in January 2000 that, being fresh, might not show up in a scan but having consolidated into scar tissue nine months later finally did. Furthermore, according to my infectious disease doc, the pattern this scar tissue took, these patches, is often seen in Lyme disease in the brain (neuroborreliosis).
In addition, I thrice tested positive for the bacterial DNA in my blood and urine. This is really the gold standard for a positive test in this disease. Sometimes getting a positive blood test is often impossible, even when a person is floridly ill. According to what I've read, this is because the Lyme bacteria, the spirochaetes, do not "like" the blood but prefer to lodge in tissue, the muscle or fat of the body, and therefore they are not easily found during a routine blood draw. Hence the difficulty obtaining a positive test for infection, even when you are riddled with them! So when they were able to find, if not the bacterium itself, at least its DNA in my blood, we had undeniable evidence of its presence in my body.
I go to all that trouble of proving I had/have Lyme disease in my brain for a good reason: there is a huge controversy, largely concocted and for political reasons I will not go into, surrounding whether chronic Lyme disease exists or not. Some, the so-called Yale school ie the "establishment" asserts that no such thing can possibly be, yadayadayada and so they set up guidelines for treatment that virtually, no, absolutely ignored the possibility of a chronic form of the infection...In fact they gave no consideration to the question even when setting up the guidelines, did not even look into the research suggesting it might in fact exist. The other school, that is, everyone else, believes the opposite, that either a chronic form does exist, having seen it, or that something else is going on in Lyme, that 3 weeks of antibiotics does not in fact seem to cure it once and for all at all. If you do not believe that this is so, take a look at the charges of Richard Blumenthal Attorney General of CT, who is forcing the Infectious Diseases Society of America, through anti-trust law, to reassess and if necessary rewrite the guidelines, this time taking the chronic Lyme disease research and researchers into account.
Argh, this is so important to us Lyme sufferers, but I think I am digressing a bit from my point...My point? That this week I suffered a relapse of my psychotic symptoms, from which I am only slowly recovering. I still hear some voices -- a woman crying, some singing, hauntingly, with a message for me, other things -- and I feel very weak and sad and even suicidal. Yesterday I wanted to die, plainly speaking. What kept me going was holding on for dear life to the one hint I had that I thought just might be true: that it was Lyme that had put me in this place and state. I knew people were threatening me with the hospital, and that I was suicidal and non-functional. I knew I'd been that way before...And I knew this time, or thought I knew, suspected I knew, what the problem had to be. Dr L, my infectious disease doc had already suggested it when I called him that afternoon, worried that I had Lyme symptoms again.
"No, I think you are herxing from our increase of the antibiotics last week. We went up too fast and you are having symptoms from it," he told me.
Yes, that could explain it. It made sense. A Herxheimer reaction is one that happens in Lyme. It could happen in any bacterial infection but notably in Lyme where when you start ABs or increase them you have a temporary increase of symptoms suddenly once the bugs in you start to die, or so they think. Whatever the cause of the reaction, if your symptoms are physical, as in Lyme arthritis, you have an increase of aches and pain and such, but if your symptoms are essentially psychotic, whoa! So I think that is what's going on, I am reacting -- to be expected, but unexpected by me -- to the sudden upping of my ABs. And the weird thing is, we were upping my ABs to treat break-through Lyme symptoms that were worrying me to begin with!
So for today I am AB-free, and slowly feeling better, but tomorrow I have to start them up again, at the lower dose. I will up them much more slowly. I do want to go to the higher dose, as I do not like having this breakthrough symptom of exaggerated startling...I feel like the infection is just too close to the surface to be really safe. But I cannot afford even a temporary breakdown, certainly not if it produces such extreme symptoms!
You see why I entitled my entry as I did? It never ceases to amaze me how the little critters in my blood can change my emotions and thinking so completely. I will no longer go along with anyone who tries to tell me that there is a psychological component to schizophrenia: I have done and felt and thought too much and too many different things under the influence of 1) bacteria 2) medications 3) without either to not believe that it is ALL biochemistry in the end.
That does not make us less human, by the way, it simply means that we are less "guilty" than we believe we are for our various everyday foibles and follies. Knowing that, we really ought to forgive not only ourselves but each other a lot more than we do...
Posted by pamwagg at May 24, 2008 06:38 PM