I can not tell you what you suffer from! I have to believe in what you tell us.
I can't tell anyone else, either. That's the thing about Lyme. It's very difficult to say positively, one way or the other. All the blood tests show is possible exposure. But my doctors, to this day, think it was Lyme. From what I have been able to learn, I think they are most likely correct. In fact, I think if you examine all the events in my case in detail, it really gets difficult to argue otherwise.
But, lets say some other person with chronic Lyme (that have had Lyme 2 years before any treatment) have 10 months of "pretreatment", and then have the same "IDSA-treatment" that you have had, the might (I only say might) experience the same thing as you did.
I am really NOT trying to suggest that my experiences should be interpreted as broadly representative...of anything, or anyone, at all. All I was trying to speak to is how we think
about the issues.
What I am saying...and ONLY saying...is that people who go online are told that they MUST have an "LLMD
". I am just responding to THAT.
I didn't have an LLMD and seem to have gotten better, anyway. And I am not broke. I am not sure what "pretreatment" is. I don't understand the term. I had 14-21 days doxycycline followed by the Donta clarithromyacin and plaquenil thing for about ten months.
There used to be a poster here, and on other forums, who would routinely say that she got better after months of iv therapy. And I am just saying that I got better, too. Just without any iv therapy. And the expense.
So...take that for what it's worth...and honestly, in my own opinion, it isn't worth much. I think some are still missing the point.
But, if they didn't suffer from the "American" type of Lyme (BBss), and instead, suffer the most common borrelia type in chronic Lyme in Europe (B Afzelii), and they maybe have had it for more then 2 years before any treatment, they maybe don't have the same "success" as you had.
Yes. I have read that the Amercian form of Bbss is supposedly nastier. Whether this is true or not, I don't really know. But I think there are definite problems making comparisons between European and American cases, yes. I wouldn't try that.
And, I don't think that "waiting för 10 years after treatment, to recover" is any success, at all.
Okay...? Success is probably in the eye of the beholder, also. A relative term. And I am certainly not recommending this to anyone, as I have said, now, several times.
It's probably somewhat better than dying, though...
What do you think happend during those 10 months of pretreament? Did your immune defence maybe improve a lot? Do you have a good immune defence now?
What is meant by "pretreatment"?
I don't understand.
If you are talking about the time I was on the Donta thing...so far as I can remember, nothing happened that stands out. As I say, all I remember is that Biaxin tastes bad.
What did you suffer from during the ten years of "late recovery"? Some "auto immune" conditon?
I don't know. That's the BIG question.
Part of it was probably undiagnosed hypothyroidism. And yes, in my case, this is an autoimmune condition. Probably triggered by the initial infection. Thyroid therapy has really helped me. Recognizing the problem and getting appropriate treatment allowed me to be able to start exercising again. Very dramatic improvement. My voice returned almost immediately when the thyroid stuff started.
But if people's mindesets are closed, locked, into believing that the problem is persistent infection? Then, perhaps, they won't look for the cause of what their continuing distress really is? "Chronic Lyme" or PLS, could be different for different people? If what we are talking about are the after effects of infection?
What I think that I can safely say is that the biggest improvements in my case, (after the cessation of the shaking tremors), did NOT come from antibiotics.
See, the tremors DID, very noticeably, improve with antibiotics. They're gone. Completely.
So whatever I had, did seem, initially, to respond to antibiotics.
But as I have said, before, after awhile, I noticed no addtional improvement.