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Old 03-30-2005, 02:23 PM #1 (permalink)
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Default ALS-Lyme Disease Connection

Hi eveyone,

i tHougHt long and Hard before deciding to post, but given tHe information out tHere i tHougHt tHat i sHould.

i am 33 female, witH lyme disease. i Have been undiagnossed for a long time, and am now on treatment. no one would listen, no one wanted to test me, and wHen i was tested it was negative seven times!

tHe last tHing i want to do Here is give anyone false Hope.
lyme disease is denied in canada. tHey don't want to believe we Have a problem witH it Here, and docs are misinformed and are non-believers of lyme in general.

lyme disease is a clincial diagnosis, tHe blood tests can just Help back it up. many witH lyme Have been misdiagnosised witH als and turn out to actually Have lyme and see improvement witH treatment. only one person i know of in canada Has tested positive witH tHe canadian lyme disease test. majority seem to test negative and end up testing in tHe states witH a more accurate lab. tHe sicker you are witH lyme, it seems tHe bigger tHe cHance you Have to test negative as tHe bacteria are deeper in tHe tissues and are less likely to be found in a blood sample.

if you searcH tHe lyme boards-you will see some wHo Have been misdiagnosed witH als and Have lyme. not everyone diagnosed witH als get better witH treatment, but many Have.

my figHt Has been long and Hard to recognition tHat i Have lyme. if i would Have continued to deteriorate, god knows wHat kind of diagnosed i would Have been given, but know it would Have been sometHing tHey'd say "cause unknown, cure out of tHe question" and been given toxic drugs etc. not even my Husband could beleive i Had lyme wHen tHe doctors kept saying i didn't cause my test was negative.

tHis is a tragic situation in canada. it is almost like tHey are scared to start admitting it is a real problem Here, wHen tHe ones responsible for addressing tHis situation and protecting us canadians are not stepping up to tHe plate and doing tHeir job, more concerned witH How tHis would affect our tourist industry etc. tHere are many tHeories wHy it is ignored. it is Happening all over tHe world.

many Have to go to states for treatment. even tHose wHo Have tested positive Have been denied treatment over and over.

lyme is tHe new great imitator and tHeir are co-infections tHat come witH it, and tHe testing for tHose are even less accurate.

if anyone tHinks tHey may Have lyme, or want to learn about it, my advice is researcH, researcH, researcH! knowledge is power witH lyme disease as it is very complex and so is trying to get someone to listen and get Help, it is not easy by any means.

again, i don't want to give false Hope, it is just if lyme is to be eliminated as tHe cause of als tHen it needs to be done properly.

take care and good luck to you all.

lymiecanuck
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