Sassy, I do not know the answers to your questions (even the Drs don't!) I can only share my own opinion/theory, which has not yet been tested. And firstly, I believe every body is different.
Late summer of last year I took 3500 mg/day Amox for 60 days. (LLMD did not claim that would cure me, but I was not able to ever go back to him because he did not accept insurance (or vice versa).
A lot of the pain improved while on Amox. But anxiety and depression were unbearable. (Amox can cause depression). I do not know if this was all a herx or if side effects of Amox.
After the 60 days on abx, I experienced a lot of improvement, along w/ the hope that my dose could have been high enough to cure me.
However, very slowly and very surely, the old, crappy symptoms started creeping up on me. I was able to deny some of it, but I now realize I am right back to where I was. Well, some of my old symptoms are not as severe, but several of them are now more severe.
After being on a ID Dr's ( who is an LLMD) waiting list for over a year, I finally have an appt w/ him Tues, June 29. He comes highly recommended, however, as an ID, I noted in his medical papers, he refers to 'Lyme Syndrome'. So I do not know what this will bring, tho I've chosen to have a lot of faith in him, until I have reason not to. At least he IS researching this.
ANYWAY, IF he is a Dr who believes in putting patients on very long term abx, then I have decided to ask him about 'pulsing'. (Dr Burr has a paper on this). Not exactly per Dr. Burr, but I'm thinking of asking to take a couple of months high dose abx, then take a break for about a month, then hit it again, and so forth, over and over. Somehow this makes good sense to me.
Partly because I feel that long term abx (like 2 yrs) is not good. And partly because of what we know about this bacteria. So I"m thinking about something like a double whammy on those danged spiros for a couple of months, take a one month break, allowing them to come out of hiding, and then hit them again, and so forth, over and over.
And if this Dr is of the mind that it takes a couple of years of abx, I will especially be interested in following THIS pattern, as opposed to no breaks in abx for 2 yrs..
I also plan to ask him about LDN because of all that I have read, as well as other health issues I am concerned about.
So, anyway, I tend to agree w/ Jeminij, above, except that I might consider a longer break in between to give my immune system a chance to jump in there.
GOOD LUCK TO EVERYONE HERE!
PS: I neglected to add that I sure do not know about those of you who are not able to tolerate the abx. But maybe this could help some? The LLMD that I went to last summer, and to whom I could not afford to continue going, had mentioned that he might have me take 1 big shot of penicillin per week. For how long, I do not know. And he'd said he would teach me how to do it myself.
HIs reasoning here is that w/ an injection, there's no hardship on the stomach, etc.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia, chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
Post Edited (+Lyme) : 6/23/2010 9:46:34 PM (GMT-6)