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    Old 01-04-2006, 07:52 AM   #1
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    How long have you had lyme?


    Just wondering how long you all have had lyme? And, how long did you have it before you got diagnosed? When it comes to neuro-lyme, I would love to hear some success stories....


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    Old 01-04-2006, 08:40 AM   #2
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    Re: How long have you had lyme?

    I have had bladder symptions since dating my DH 11 years ago 1994 (it was past off as problems from being sexually active) In 2001 I had a healthy pregnancy but delivered 4 weeks early to my son who at about a month old was "failure to thrive" He had GI problems, reflux, food allergies, ear infections, RSV.... you name it...

    In 2002 I had Bi Lateral Bells Palsey, which started my onset of nerve/joint pain and in late 2002 I was DX with IC a Bladder Disease. After my bi Lateral Bells Palsey we knew something wasn't right, but it took 2 years (2004 now) of seeing every Dr that I could through our PPO and with the help of our chriopractor I was able to get my GP to write me a WB test....I tested + on a WB through unilab. All other tests through MDL and Igenex confirmed it also. IN 2002 when I had bells Palsey my Elisa was + but no further tests were done. Just think, I could of known in 2002 and been treated 2 years sooner....

    It wasn't until December 2004 did I find a LLMD and start treatment. Of course 6 months later, my DH and son were tested, both + for lyme. My son got it in utero and my husband probably had it from his childhood. He has known tick bites.... I have no idea how I got it.... only other thought is sexually transmitted or tick bite.

    My husband has neuro lyme.... it seems to get worse when he is herxing or stressed out. We always joked he has the beginnings of alztimers, but its sad that its almost worse... its neuro lyme. His pain, back pain, groin pain and muscle pain, has gone while on treatment for lyme... he still has a lot of brain fog.

    Last edited by fotomom; 01-04-2006 at 08:45 AM.

    Old 01-04-2006, 09:31 AM   #3
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    Re: How long have you had lyme?

    igot bit with the classic bull's eye in june of 2005, primary did not believe in lyme. finally got a llmd in december who sent to igenex for tests. will get results today and let ya'll know.

    primary still in denial.

    Old 01-04-2006, 09:36 AM   #4
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    Re: How long have you had lyme?

    I'm sorry to hear what you've been through fotomom. I hope you and your family will get better as time goes.

    I got my Lyme in 2000 when I went for a camping trip here in Canada. I had a rash (not bullseye though) after the trip on top of my foot and it was spreading up to my lower leg. It was scary. MD prescribed some antifungal drugs and I took it for 10 days. The rash went away and I thought I was good.

    I was 22 then. My concentration and focus started to go a few months afterwards. I was fatigued all the time; had to yawn through out the day to catch enough oxygen for my body. I knew something's wrong but didn't know what. Lyme disease is not very well known here in Canada.

    The brain fog and shortness of breath really set in 2 years ago when I started working. I went to numerous doctors and everybody told me I'm fine, as supported by various test results. It was not until the beginning of last year when somebody brought to my attention something called Lyme disease, and that's when I actively went after my doctors for a test.

    ELISA test came back negative, but one of my doctors heard of a new DNA test here they have in downtown Toronto, so I went for it and sure enough, it came back positive.

    So it took me 5 full years to find out exact what was making me sick. I think the general public and the medical community should be educated on this terrible disease, which is the 2nd fastest spreading infectious disease after AIDS/HIV.

    My treatment started 1 month ago and so far I haven't felt any better. I hope this would change, however.

    Old 01-04-2006, 10:08 AM   #5
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    Re: How long have you had lyme?

    I was diagnosed after a pos titer in 1987. My husband & I had just returned on Canada from a Hunting trip during black fly season. I do not think mine was a tick. I was 37.

    I had a rash with lymph node involvement and big red spots on my neck where the black flies had bitten. My fam dr placed me on meds for lyme but I was taken off med that weekend because the ER Dr thought I was reacting to meds. (I got worse and the rash spread) I now know that was not the case, it was a herx). Several weeks later in hospital with cardiac problems related to lyme. I was treated then for 10 days. It was several weeks later that the test came back positive. That is the only pos lyme I have had. All others come back neg.

    From FM 1993 to possible MS 2002 and cervical surgery twice in between, it has been an ongoing battle. Not ever sure. I would ask my RM how I could have FM over just one side mainly arm and face, he would say thats possible. But, you know yourself, they are missing something.

    I have alot of neuro problems that have gotten worse since I began treatment. Feet numb, memory, expanding foam in my head feeling, vision, face pins & needles that goes into arm. so much more....

    I started seeing a LLMD this summer. Found Lyme still present (surprise) Babesia, Mycoplasma. I won't say I am better, but I am only into 8 wks of IV treatment. (Had a few setbacks along the way) I Will get better..........

    My Lord has carried me through 18 yrs, I know he will see me through the treatment.
    Footprints in the sand was made for me. Prayers............Marsha

    Last edited by Pearlscale; 01-04-2006 at 10:15 AM.

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