HA, so get this...I'm still a hesitant lyme patient. I've read all the stuff, and I know all the controversy and I guess I haven't come down on the side of THIS IS LYME AND YOU ARE WRONG yet. Mainly because my treatment hasn't kicked in yet (if it ever will) so I can't say that I have even anecdotal evidence that my abnormal route to lyme diagnosis is "true."
For the record, my hesitancy isn't on the side of "quackery" or "lunacy." I am worried about the long term use of antibiotics--mainly because I have a degree in environmental microbiology and I know what the deal is out there with the super bug worries. Taking these heavy duty antibiotics for a long period of time is scary for me--so I keep second guessing whether or not this treatment is the right choice.
So here's the story (the other part is pertinent). I went to a psychiatrist yesterday--because my regular primary care doc thought all these symptoms are "all in my head" and referred me and I figured I might as well follow-up on all angles. The psychiatrist turns out to have started as a family practitioner MD and later moved to psychiatry. He has stayed current with his MD licensure though, so he looks at his patients with a balanced eye. So I go in and the paperwork asks what meds I'm on and I felt myself hesitate in telling them about all the antibiotics and probenecid because of the judgement I assumed I would garner. "You don't have lyme, why would you think that? That's all a bunch of nonsense etc etc etc." But I put it all down anyway--no point lying.
Well--when it came time to discuss the meds, I go on this stupid backtracking rant about how I know that mainstream medicine doesn't necessarily agree but I had all these weird neuro symptoms and no answers so I went to an LLMD and was tested and the tests came back positive for Lyme proteins and cytokines for the bacteria and so, not having any other answers I'm undergoing treatment. I braced for the onslaught--and it never came!!!!! He looked at me and said, well, regardless of whether you "actually" have lyme, this doctor is treating you appropriately, and you don't want it to go untreated if you do have it because it would cause you major problems down the road!!!!
I was floored. Here was a medically trained non-llmd who agreed that the treatment was the best course of action under the circumstances and I should come out on the other end no worse for the wear!!! Well I felt so vindicated I could have danced (but he probably would've locked me up).
I still don't know if this is active lyme or an old and already fought off case that I'm fighting for no real reason, but at least I feel like the fight is worth fighting and that it is medically warranted and generally supported--this is the SECOND non LLMD doctor who has said that under the same circumstances they would do the same thing!!!
So, no more beating myself up--I'm all in now (let's just pray that this is the cure and I finally get out of this stupid fog I've been living in for the past 8 months!!!).
Yay!! I love stories like yours, well, at least the part about the psychiatrist, not the part about struggling to get a diagnosis.
I, too, have qualms about long term antibiotics. But I know a woman who was so afraid of antibiotics, she wouldn't give any to her 12 year old daughter. They spent a fortune on hyperbaric treatments, supplements, ionic therapy and a bunch of other "alternative" treatments. Three years later, the poor girl is still miserable and missing out on adolescence because she's isolated at home in pain. The dad finally stepped in a few weeks ago and insisted on heavy duty abx.
So, my conclusion is that the long term abx might be hard on me, but whatever harm it might do, it would surely be a whole lot less than what Lyme was already doing to me. And my system can recover from abx use, whereas it would not recover from permanent damage done by ongoing Borrelia infection. (Note-I am still taking $$ of supplements to help me through the treatment process,)
Isn't it amazing how the disapproval of a doctor weighs heavy on us? Even when we aren't satisfied with what that doctor is saying?
Check out the movie "Under Our Skin." it will probably help you feel better about your treatment. :)
And I know how you felt, apologizing and hanging your head explaining to the doc. I did that with my ophthalmologist, and he had about the same reaction your doc did: yes, it's serious, and good that you're taking treatment. YAY! VALIDATION!!!
You say above: "I still don't know if this is active lyme or an old and already fought off case that I'm fighting for no real reason"
If the bugs were dead, you wouldn't be having symptoms, imo. I don't buy the theory that the nonLLMDs have, about 'post-Lyme syndrome' -- which is the theory (or to the nonLLMDs, the correct view) that if you still have symptoms after a couple weeks of treatment for Lyme, then it's your immune system OVER-REACTING to bacteria that are no longer there.
The rule of Occam's razor says that one should "select among competing hypotheses that which makes the fewest assumptions and thereby offers the simplest explanation of the effect." My view exactly: if you still got symptoms, you still got bugs.
yipee hurray,one for the good guys. I love hearing that because I have been where you were and validation is the best. Many of us have been there. I was told, despite all my symptoms, that I was in remission because of the western blot. wrong.....
Good attitude, Good Luck. keep us updated.
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