October 11, 2006

Infectious Disease and SZ?

Today, Joe and I drove to New York state to see my infectious disease specialist, Dr L,, who is treating me for something that many such physicians believe does not exist: chronic Lyme disease. No matter that he keeps finding the Lyme bacterium -- or its DNA -- in my blood or urine, proof that I am still infected; no matter that I become symptomatic in a month or two when taken off the antibiotics, or that the symptoms disappear within 48 hours of being put back on them. No, according to the Establishment, which is commanded by Yale University so you know it must be Right, right? (HAH!) according to the Establishment the disease is always curable by 3 weeks of antibiotics and there is no such thing as a recurrent or chronic Lyme disease. You have continuing symptoms? Well, they are simply "residual symptoms" (ie symptoms without a cause, because there is no infection anymore!)

Anyhow, my Lyme disease has taken many forms, from causing hip disintegration that looked for all the world like avascular necrosis, but which healed by itself instead of getting worse and necessitating a hip replacement and immense weakness and fatigue due to nerve damage in my muscles, to central nervous system symptoms ranging from memory deficits to increased psychosis.

Lyme, though known at first as Lyme arthritis, is a neurotropic disease, meaning that it is directed first and foremost at neural tissue, at least according to what I have read. This means not only the CNS but also peripheral nerves, and neurons of all sorts. Because of this, manifestations of the disease are legion; in fact it has been called the Great Imitator, because it can mimic so many different diseases while being none of them. (It has even been known to masquerade as ALS, at least before the differential diagnosis.) For me, the first symptoms seem to have been gastrointestinal but soon multiplied, after the initial tick bite and rash (which I ignored, not knowing a thing about Lyme ticks or rashes); I wound up in the ER at least twice for dehydration, having spent the day vomiting for no known reason; I was found to have a chronic B-12 deficiency and resultant neuropathy; there were clear changes on my brain MRIs nine months apart, one with scar tissue, one without. I also startled way too easily. I startled when someone knocked on my door or called my name, I startled when someone jostled me or touched me, I startled even at thoughts that "surprised" me. I couldn't anticipate everything, so almost everything startled me, most especially lightning, which made me scream involuntarily each time it flashed, though I wasn't the least bit afraid of it, only embarrassed by my screams.

Eventually, a Lyme-knowledgeable psychiatrist heard about this from Lynnie, who was doing her best to find out what was wrong with me, and said she had never seen this sort of reaction, a kind of startle reflex you mostly see in infants, except in CNS Lyme disease. We made an appointment for me to see her ASAP and she confirmed her suspicions, telling us that I should make an appointment with a "Lyme literate physician" at once, so that antibiotic treatment could be initiated. That's how I cam to see Dr L.

I have seen him now for about 3-4 years and have been on and off antibiotics, the last time off from April 2006 to August 2006, which is when I was in the hospital. The reason this is so significant is that I believe that the only reason I had my relapse, the only reason that the voices overwhelmed me, that my father's illness overwhelmed me, was because the Lyme disease had started creeping back by then (July) and had lowered my resistance to stress. I think this because I also experienced rage reactions in the hospital, which characterized the first episode of Lyme disease as well, and has done so since, and because as soon as I was put on antibiotics both the rage and the startling ceased within 24 hours, about the time it takes for antibiotics to start working. The brief but extraordinarily vivid and detailed paranoid plots that sprang up and then popped almost daily were also reminiscent of those that characterized my initial bout with the disease, quite separate from the underlying unchanging theme of paranoia that runs my life.

Since then, I have not had a problem with startling once, nor any episodes of rage or the brief outlandish plots whatsoever. Sure, I've gotten pissed off, but I haven't screamed and thrown things and gotten out of control the way I did in my Lyme-induced rages. I honestly believe that if I was paranoid and psychotic anyway, the Lyme disease made it ten times worse, and probably made the hospital necessary rather than avoidable. It surely extended my stay and exaggerated my native paranoia.

Lyme disease is in fact epidemic in this country, despite what the Establishment says. Lynnie has seen a great deal of it in her practice, with patients who do not get better and do not get better until she has them tested for Lyme, and they come back floridly positive, start on ABs and finally respond to treatment, both psychiatric and medical. Now, the tests are not very good, in that a negative test means NOTHING. The negative test does not mean you do not have Lyme, it merely means that the test did not detect it this time for some reason or another. Some people with Lyme never test positive. But a positive test is gold, because it is the proof the Establishment needs in order to justify treatment. It's a lousy situation, but the fact is, there is no way to directly test a person for Lyme disease, so the diagnosis is often iffy and often derived more from clinical observations than from test results.

Nevertheless, I am convinced that Dr L knows something the establishment is in denial about, because whatever they choose to believe, longterm ABs have worked for me and every time they have been interrupted, I've had a relapse of one sort or another.

Posted by pamwagg at October 11, 2006 07:30 PM


Oh Yaya, that was so similar to my symptoms and very common in Lyme from what I've read: I developed a weird sort of dylexia, if that is what it is when you start misspelling words and writing E as 3 and getting all sorts of easy words confused. I am an extremely good speller but when I first had Lyme and this last time too, I couldn't spell for beans, and it shows in my notebook where the spelling mistakes are rampant...UNTIL I started the ABs, when very very quickly they were eliminated and my very handwriting got better. Just thought you might like to know. I also suspect that my rather gruesome suicide attempt in the hospital was a result of the screwy Lyme-related thinking, rather than the real "me."


Posted by: Pam W at October 12, 2006 09:38 PM

Dear Pam,

I’ve shared with you that my former husband mother suffered from Lymes disease. She was infected, noticed a rash but didn’t get help until months after the rash. I'm not sure why she sought medical help after such a long time after the rash.

Since I was divorced from her son I didn’t know too much about her life. The things I did notice was when she wrote her granddaughters (my daughters) she had a very difficult time with her writing and spelling. She was once an extremely bright and creativie woman and her letters to my daughters showed a woman who could barely put a sentence together. She also became delusional, paranoid and suffered from psychotic spells. My ex tells me his mother was taking antibiotics but then stopped taking them. Sadly she took her own life. She did it in a manner most women wouldn’t think of and that is----- she shot herself in the head. She was about 75 years old when this happened.


Posted by: Yaya at October 12, 2006 08:05 PM

Actually, that classification scheme may have changed in the years since I learned it, so that spirochetes may no longer be considered bacteria because of their tissue-seeking behavior...Can't say for sure. But when I was in med school, back in 1978, we were still being taught that they were. Paula, does Pox talk about this?

Posted by: Pam W at October 12, 2006 05:13 PM

Hi Paula,

There are three basic shapes that bacteria come in, spheres or cocci, rods - bacilli - and corkscrews aka spirochetes. Thanks for all the additional information about Lyme. I learned much from this comment myself. I sometimes wonder if some cases of SZ do not have Lyme as an etiology, ie Lyme-induced SZ. After all, Fuller Torrey et al are looking for an infectious origin for the illness, maybe they just haven't thought of this one... BD

Posted by: Pam W at October 12, 2006 05:08 PM

Dear Pam,
Your blog revealing the little known serious implications of Lyme disease, which I believe most people consider to be a trivial, easily treated infection, is the best piece of expository writing I have yet to read on the subject.Although I have read many fine articles by physicians(including our mutual pal Dr. L.), yours is the first article I have read from a patient's point of view. It is especially noteworthy because your life, like mine, has been radically affected by this disease, and your examples should certainly make your readers sit up and take notice that a tick bite is NOT innocuous and should be treated IMMEDIATELY and taken seriously. One bit of information I would like to add comes from a book entitled "Pox" which Dr. L. suggested that I read after it was finally evident that my disease was incurable. Lyme disease shares the dubious honor with syphilis of being the only two diseases that are caused by a spirochete. All other infections are caused by either a virus or a bacterium. The significance of this cannot be overstated. Spirochetes are tissue seeking, rather than blood borne as are viruses and bacteria. As such, they burrow into human tissue where, if not treated promptly with the correct antibiotic,they take up residence, live, die, and reproduce in a never ending cycle which produces an unending list of symptoms, as you so accurately reported. The testing is so unreliable because at this stage the spirochetes actually have the ability to coat themselves with the protein of other cells to escape detection. To me, this is the most ominous characteristic of the disease. If I allow myself to think about it(which I avoid doing assiduously)it's almost as if I have something living within me that has a brain and a purpose, a thought which I find truly horrifying.
In any case, as with ALS, another disorder that has received far too little press, you have enlightened your readers on yet another disorder that is much more prevalent and misdiagnosed than most might have thought. I wish you could write about this in a way that it could reach more people, but your readers owe you a great debt for your excellent review of the seriousness of infection with Lyme disease. It happens to be one of the topics I suggested to you when you asked for subjects you could use when writing your blogg. Thank you, thank you, thank you, Pam. No one could have produced a better or more enlightening article on this subject than you, who suffers from it. The only positive thing I can say about this devastating disease is that,with Dr. L. acting as an unwitting mediator, it is this that was the catalyst from which our enduring friendship began.
Bravo once again on a fine piece
of writing, Lovingly, T3

Posted by: Paula Kirkpatrick at October 12, 2006 09:45 AM

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