posted
I was told that there was no cure for this.My md said I would test positive until my anti- bodies could keep this under control. whats the deal? I'm a phone call away from getting blood work done to see if its still around. I'm not like alot of you. I got this in aug 2005, and my physical symptoms havent appeared since treat ment. But im still not right in the head. what gives? Please dont send a link to some whatever telling me how to build a better rocket....Is there a cure? Will I foreever lose steam at 11:00 a.m.? Will I always be on the verge of blackout after driving more than 5 miles? I'm sorry for being so crass...especially since alot of you are probably mad i can still drive....or walk. So, forgive me. I just read ipkayaks post on death by lyme and its made me nervous.....
Posts: 17 | From viginia | Registered: Dec 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
well-the info is in the on-line library here as well as some of the others who organize good links for newbies...but i understand what it is like to just want an answer - not a lot of medical jargon.
i'm in bad shape cognitively right now for a lot of reasons-but i think i can give you a simple answer...just remember, i'm not a doc and my brain is messed up right now-but i have been thru a lot and studied a lot and i do know alot.
first-in some cases lyme can be cured. when it is caught and treated correctly early in some people they are cured.
the main problem is when it isn't caught early and it gets into the tissues where it is harder to kill it. often because there is misinformation out there people don't thinkthey have it or docs don't agree they have it so appropriate treatment is not begun for a long time and the bug(or bugs if there are co-infections)get really deep into the tissue. they like brain and eye and connective tissue a lot and it is hard to get abx in there. you need iv or huge oral doses. then you get into gi and infection and detox problems etc etc like i said its complicated.
then there is the whole thing about the bug knowing how to hide from abx and the immune system. it hides-goes dormant-but still reproduces...so when it senses the abx threat is gone it comes back even stronger.
then about testing-i really like the way tom grier explains it-someone on here may be able to tell you how to find his writings-he is so easy to read but also very scientific with everything documented. testing is not good yet.
-it often isn't in blood so if you test blood you don't see it -if you test tissue you have to test THE EXACT PIECE OF TISSUE THAT IS INFECTED-or you won't see it...a positive test means something...a negative doesn't. -some labs are much better than others...igenex is best imo and my docs -but mdl i think is one of the best "mainstream" labs...and people on here seem to like bowen a lot but my doc questions it because as far as we know they have never had a negative test.
then there are people who test positive and supposeably have no symptoms---but it may be they just don't realize they have symptoms...they may not know it includes psyc problems or insomnia or the rest. or they may have been sick their whole life and not know how it feels to be normal. my daughter-in-law had a positive pcr---more positive than anyone in the family-and she thought she had no symptoms until she went on treatment and now she is in college and can't do her classes if she goes off treatment.
whoops...rambled there.
so-your doc was right - testing isn't good enough to be the reason to treat or to stop treatment.
there are so many variables you really need to work with an experienced llmd to coordinate abx and other treatments and support for the treatments and when to change and stop treatment. there are no easy cookbook answers for this everyone is different-how long you had it -how you respond-what genes you have-your other health problems
different llmds do different things. some are focused more on one treatment or the other. some are more alternative. some are great with knowledge and have awful"bedside manners" so all llmds are not the same and its important to find the right one for you. i changed 3 times in 7-8 years. its most important to me to have a doc who will really talk to me -consider what i say and think and tell me when i'm wrong and also be able to say he doesn't know but be willing to try stuff if it makes sense.
i'm sure this is all more blah blah blah than you wanted and it is only the tip if the iceberg. pick your topic and search on here and you will find lots more.
the last thing i want to say is in my experience talking to lymies for a lot of years almost everyone that starts to get better has to do a couple years of abx. after that there are alternative ways to keep the lyme down and it may only come back when you are stressed in some way. i think most docs agree once you ahve it you won't totally get rid of it...but thats the way it is with most bugs.
i probably shouldn't have written this. i know how bad it sounds. if you want good info i would read tom grier and dr. burrascanos 2005 guidelines. good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
lpkayak sure gave you a lot of good information.
One thing though... many people have said over and over that Bowen never has a negative test, but I know two people personally that tested negative on Bowen. So, this statement is a bit misleading.
quote:Originally posted by lpkayak: -some labs are much better than others...igenex is best imo and my docs -but mdl i think is one of the best "mainstream" labs...and people on here seem to like bowen a lot but my doc questions it because as far as we know they have never had a negative test.
posted
ipkayak, thank you. that was the clearest answer Icould have hoped for! Ive read books, gone to some links, but you just said it perfectly.
Posts: 17 | From viginia | Registered: Dec 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
well thanks for saying thanks. i'm glad it helped. no easy answers here.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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