Post by itsybitsyone on Sept 24, 2007 11:34:13 GMT -8
Hi,
I have posted to other boards and groups, but what I found interesting here is that you all do not automatically buy into anything specific.
I like that.
A little about me...
Um, 30+ years undiagnosed or treated. I had the bite and the rash at age 4 in NJ, I am currently 37. I won't bore you with the many misdiagnosises I have had over the years.
Anyway, I got dx'ed accidentally a few months ago. Started out at 100mg doxy 2x a day
Then, into LLMD-land. Just went through 4 hellish weeks of 500 mg of tetracycline 3x a day. Now excuse me, because I just got new scripts this morning and I do not have them at my desk with me. Now I will be on clarthyromycin (or something like that...is that biaxin?) and hydroxychloroquin (aka plaquenil) and one of the binding cholesteral meds (not cholestyramin but something similar that starts with a W for both toxins and my high cholesterol) and prilosec because my acid is unbelievable.
I am also on Lyrica for pain and my cataplexy symptoms.
Other than the prilosec, I am supposed to take a week off the meds before starting again, and also see an opthamologist before starting the plaquenil (again, I was on it for my misdiagnosed primary sjogren's years ago) because of the eye symptoms/side effects and I already have sjogren's-like eye problems from the Lyme...in addition to the massive floaters.
I keep my sense of humor most of the time. I do admit to being a bit bitter after all this time. What I have learned...Lyme symptoms wax and wane...even without treatment...if you have it long enough. You can be in 'remission' for YEARS without any treatment what-so-ever...but it is progressive...meaning, remissions get fewer and father between as you age and the pain eventually doesn't go away, and the long term damage becomes permanent. Even so, during my last remission of almost two years, I was able to ride a bike with my kid and didn't have heart palps.
I am a skeptic at heart. I am going to question every treatment that comes down the pike. The truth is, they know less about Lyme than they do autoimmune disease, which also is pitiful.
Do I believe that jamming myself full of antibiotics will work? No, actually, I don't. However, it is worth a shot if nothing else. IF the bugs can and do hide in cyst form, and nothing is proven to kill them there (its only assumed, is it not, that Flagyl can do this, no? Seems a big drug to take for a 'maybe'!), and most of these antibiotics do not cross the BBB anyway.
I watch what comes out of Columbia because I really do think they may find something....at least they are trying rather than making sweeping accusations on either side. The truth lay somewhere inbetween, and the truth may be that there is not an antibiotic created yet by man that will kill these buggers completely.
Anyway...I like the idea of a board where I am not going to get (I hope!) chastized for saying something outside the spin or the "side". I don't really care about controversies...except that we as patients are effected by it....what I care about is getting well enough to live long enough to watch my kid grow up.
I have posted to other boards and groups, but what I found interesting here is that you all do not automatically buy into anything specific.
I like that.
A little about me...
Um, 30+ years undiagnosed or treated. I had the bite and the rash at age 4 in NJ, I am currently 37. I won't bore you with the many misdiagnosises I have had over the years.
Anyway, I got dx'ed accidentally a few months ago. Started out at 100mg doxy 2x a day
Then, into LLMD-land. Just went through 4 hellish weeks of 500 mg of tetracycline 3x a day. Now excuse me, because I just got new scripts this morning and I do not have them at my desk with me. Now I will be on clarthyromycin (or something like that...is that biaxin?) and hydroxychloroquin (aka plaquenil) and one of the binding cholesteral meds (not cholestyramin but something similar that starts with a W for both toxins and my high cholesterol) and prilosec because my acid is unbelievable.
I am also on Lyrica for pain and my cataplexy symptoms.
Other than the prilosec, I am supposed to take a week off the meds before starting again, and also see an opthamologist before starting the plaquenil (again, I was on it for my misdiagnosed primary sjogren's years ago) because of the eye symptoms/side effects and I already have sjogren's-like eye problems from the Lyme...in addition to the massive floaters.
I keep my sense of humor most of the time. I do admit to being a bit bitter after all this time. What I have learned...Lyme symptoms wax and wane...even without treatment...if you have it long enough. You can be in 'remission' for YEARS without any treatment what-so-ever...but it is progressive...meaning, remissions get fewer and father between as you age and the pain eventually doesn't go away, and the long term damage becomes permanent. Even so, during my last remission of almost two years, I was able to ride a bike with my kid and didn't have heart palps.
I am a skeptic at heart. I am going to question every treatment that comes down the pike. The truth is, they know less about Lyme than they do autoimmune disease, which also is pitiful.
Do I believe that jamming myself full of antibiotics will work? No, actually, I don't. However, it is worth a shot if nothing else. IF the bugs can and do hide in cyst form, and nothing is proven to kill them there (its only assumed, is it not, that Flagyl can do this, no? Seems a big drug to take for a 'maybe'!), and most of these antibiotics do not cross the BBB anyway.
I watch what comes out of Columbia because I really do think they may find something....at least they are trying rather than making sweeping accusations on either side. The truth lay somewhere inbetween, and the truth may be that there is not an antibiotic created yet by man that will kill these buggers completely.
Anyway...I like the idea of a board where I am not going to get (I hope!) chastized for saying something outside the spin or the "side". I don't really care about controversies...except that we as patients are effected by it....what I care about is getting well enough to live long enough to watch my kid grow up.