Lyme

Kimenem

Kimenem

Cathlete
Would anyone who has had or knows of someone who has had this illness please share your experiences? I've posted before that I was dx'ed in 2001 and took oral abx for 9 months. Well I think it's back. I've been reading Lymenet.org and it's so "doom and gloom." The ones affected here didn't seem to really have it that bad. Just looking at posts here re: this, it seems many people are knowledgeable. Thanks.
 
Hubby and I both had it, him in 1995,me in 1996...he took 4 weeks of 500 mgs of amoxicillan 3 times a day...poof....he had the rash....Me, gardening got poison ivy all over my body and as it resolved there were some paramecium looking like things (3 on me)doc took a look, said,"lyme"- was tired, felt some numbness and tingling on my face...the first week on amoxicillan (500 mgs 4 times a day,since I had it for awhile)-the spyrochete releases it toxing and you really feel like crap...then it progressively got better, I was on it for 2 months....got pregnant that year, they did a titre and it was well under the "diseased" state....

Almost everyone I know in northern NJ has had it or was exposed to it...NO ONE had any long term effects....only the people who had it before it was diagnosed as a disease...they had to have long term treatment and one had cardiac rhythm disturbance.

The worst case - I did home IV on her, was a young woman who remembered a wacky rash in the 80s,paid it no mind...then was diagnosed presumptively(before MRI was used) with MS.....she broke her engagement, and went back for a doctorate.....a couple years go by, she gets pneumonia....goes to hospital where they give her IV penicillan...and guess what? The symtoms pf MS diminished - RAPIDLY....docs were hip to lyme by 1995, and ran a titre- it was through the roof!!!!! So , home with what turned out to be one YEAR of weekly IV antibiotics......fast forward 13 years....a Phd.,married, kid, home, and hiking,biking and running!!!
 
Wow....that last story sure had a happy ending. :D I have no idea when I got it. I took Flagyl and Zithromax for 9 mos and I thought that was the end of it. I don't remember a rash but I did get some hives anytime I used bug repellant so I don't know if that was related or not. That happened after tx anyway. So after 8 years, I'm thinking I need more abx. I'm worried I contracted it as a kid and went until age 18 without being dx'ed, even though I had no symtpoms and wasn't a sick kid. I'm sure people in NJ have had this happen. Anyway, I DO NOT want IV abx. I want to keep doing aerobics and be able to continue with STS. I can't be homebound because of an IV. Sounds like you and hubby caught it pretty quick. Thanks for sharing. One more thing, what do you mean "only the people who had it before it was dx'ed as a disease?"
 
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I'm surprised on the choice of anti-biotic - are you allergic to penicillan or doxycycline?Those are cheap and work in the right dose(1.5-2grams a day for amoxycillan and I don't remember the doxy dose..)

If you are having symptoms now, you may have contracted it again...if you were treated before, it was likely killed off...

What I meant above,was that Lyme wasn't identified until the late 80's I believe, even early 90's before it was taken seriously...so there were lots of people who had the rash, it faded over time and lyme sat around hatching without treatment or diagnosis because no one knew what it was.....but the number of people with lifetime effects after treatment seems small.....have they positively identified that you have it with a titer????
 
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My LLMD did a test in 2001 and it was positive but I don't know which test (I didn't ask :p because I was so freaked). I thought about re-infection as well but again, no rash and no tick found and most of the same mild symptoms? I talked to their office today and she's going to speak to the dr. I told her I want abx anyway :p

I just keep reading stories about heart complications, paralysis, etc. I do have Mitral Valve Prolapse (dx'd at 17), 11 years prior to the Lyme dx and now am wondering if Lyme caused THAT!!!! Anyway, I don't know why Flagyl and Zith. They worked I guess...or so it seemed, and I tolerated them with zero problems. I guess neither you nor hubby had any co-infections??

Btw, thanks for responding initially and now for answering all my questions.
 
I'm pretty sure WWWendy over at VF was diagnosed several years ago... You might want to go PM her over there.
 
Mitral Valve prolapse...RELAX!!!!! Almost EVERY woman has it to a degree after having kids!!!The valve just doesn't close slap dunk, it click clock closes....I have it with Regurge (backward blood flow, so the valve doesn't even close all the way!)....and a gyn found it at 32...cardiologist can't hear it verywell - but its pronounced in echo! Had to take antibiotics for dental for a long time until studies showed it isn't necessary.....UNTREATED LONGTERM lyme is implicated in atrial fibrillation, but haven't heard about eroding a valve- ...you've been TREATED!!!! At this point, without a positive titer, they are going to hesitate on anti-biotics for fear of you developing super bugs that we ALL are exposed too,but our normal internal bacteria keep at bay (like C-Diff and MRSA).....I would look at a battery of other labs including lyme titer or whatever they use now before rushing for an antibiotic.....

Truly, be calm...many of those doom and gloom web sites are run by hysterics...lyme is treatable and curable.....if you are not high positiveby whatever the current test is(back in the day it was titer,or Western blot,but I was treated presumptively by rashes alone -had 3 of them,doc accused me of rolling around with the ticks), then there are lots of other tests...and improved diet, vitamins,relaxation,increased sleep, to help you beef up what seems to be, for whatever reason, a big case of adrenal fatigue!!!

Finish it through...get the lab work...BEFORE any antibiotics (that would suppress the spyrochete).....and let us know....
 
I'm sorry to freak out. It seems like the LLMD's nurse said that once you test positive you always will. I'm not going to read that forum anymore because they will all say that Lyme is not curable if not caught almost immediately and stays in your system forever, just in remission. I'm waiting on a call back from the doctor and will go from there. In the meantime, I'm just continuing everyday life.
 
Don't be sorry! We all freaked out in the 90's too,when it seemed the ticks went on a feeding frenzy! But chicken pox (varicella),fever blisters (herpes ), hep B (if you have the vaccination) will all come back as in your system, along with plethora of things.....mine is positive but in a non infected state- the bug doesn't strengthen -the reproducing part was killed by the antibiotic....
 
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