Lyme Disease

Discussion in 'Fibromyalgia Main Forum' started by BethM, Jun 9, 2006.

  1. BethM

    BethM New Member

    I know this topic has been discussed at length, but I have recently been researching it, and increasing my own information level. This search started with a search for elevated body temperatures and what THAT could mean.

    I suddenly remembered that my sisters and I spent the summer of 1967 at a camp in upstate New York, prime Lyme tick country.

    The similarities in symptoms between Lyme and fibro is so close it's scary.

    When I start with my new doctor after I move to northern CA on the 17th, I plan to discuss this with her. My cousin, who also has fibro, sees her, and this doc is knowlegable about fibro. Hopefully, she will know about Lyme or will be willing to send me to someone who does.

    There was a thread here recently about Lyme, and I can't remember who started it. Thank you, though, for an article that was posted, from the Canadian Lime Disease Foundation. They have a great site. The link is http://www.canlyme.com/ Moderators, I hope this is ok to post!

    So, a ray of possibility and hope for me. Something has to be causing my chronic, daily temps of mid-99's to low 100's.

    Peace,
    Beth.
  2. mrdad

    mrdad New Member


    I think you're going to like it here in Northern Cal, welcome!! My daughter also has Lyme that she contacted here in Calif. I understand, if I'm corect, that the test for Lyme is different from "left Coast" and East Coast. If that indeed is the case, be sure they test for the Eastern Variety. Just a thought.

    There is also a Forum on this website devoted mainly to mainly to people with Lyme Disease. Best wishes,
    MRDAD
  3. BethM

    BethM New Member

    Hmmm. Guess they'd have to test for left coast and east coast, then, since when our boys were little we used to camp in the San Bernardino mountains, and lived in the high desert for 20 years.

    I think I need to educate myself, and go to the doctor armed with info to give her.

    Thanks for the welcome! I am looking forward to a much cooler summer than I'm accustomed to. We will be living in Pacifica, near San Francisco. Where are you?

    Peace,

    Beth.
  4. victoria

    victoria New Member

    make sure you are seen from the start by a 'LLMD' - lyme-literate MD - as the standard medical protocol is at best 4 or 6 weeks of abx, and if symptoms persist, it has turned mysteriously into an autoimmune disease - even tho they know the Lyme spirochete can hide out in cyst form and intracellularly and not be in the blood stream.

    You might also want to check out ILADS.org and Lyme flash net board as they have a section for off-board doctor referrals, as it is a medical/political 'hot potato'...

    My 18 yo son had all my symptoms plus worse - he has been positive on 2 Western Blot tests 6 months apart, still on abx therapy as research shows that it can take 18 months for oral or IV abx to penetrate cell-wall form of Lyme... the changes seen in certain band indicate he has had it for more than 2 years from a year ago (first test). I'd say symptoms have been present for 4-5 years from my observations...

    good luck, hope you get some firm answers, it really helps to KNOW.

    And hope to see you at the Lyme board here as well.

    all the best,
    Victoria

  5. jarjar

    jarjar New Member

    Beth I will be very surprised if you don't test positive for lyme. I was exposed to lots of ticks growing up as a child but the bacteria remained dormant or my immune system was able to keep it in check until I reached around 34.

    That is the reason so many people just presume they don't have lyme is that roughly 50% of people don't even remember being bitten by a tick.

    It would be my dream for all FM patients and CFS patients that don't seem to get much better to get the Igenex Western blot to rule out lyme.

    I was a classic CFS case with viral like flu attack but come to find out Lyme symptoms act the same way.

    I'm starting to get better...although it hasn't been easy dealing with herxing from die off but its all worth it.

    jar
  6. BethM

    BethM New Member

    ever being bitten by a tick, but it's entirely possible I was, living where we did and spending time in the mountains. I know I took ticks off my dogs from time to time. (ugly things... the ticks, not my dogs!)

    This is all very scary to think about, but I plan to pursue it. Maybe a light at the end of a VERY long tunnel. But I would like to feel better, be rid of the fevers and the aching and constant flu-y feeling. Would be good to have energy to do and be and have fun again!

    Thanks, all, for your input and suggestions!

    Peace,
    Beth.
  7. mrdad

    mrdad New Member


    Well Beth (BINGO)
    I'm in S.F. a fourth generation San Franciscan. I know the Pacific Area very well!! Bring a sweater this time of year as it gets real "soogy" down there. Did my student teaching in he early 70's in San Mateo co. Have two sibblings and a Sister-in-law down there! Can be beautiful in September for a couple of days. ----are you still gonna come?? Please keep in touch as I know the City very well.

    MRDAD
  8. BethM

    BethM New Member

    wild horses couldn't keep me away! I am so looking forward to a summer NOT spent dealing with 100+ degree weather and the constant threat of wildfires. I am thrilled to not have to deal with clearing brush 100 feet from the house, don't have to hire the neighbor with the tractor to do that. (We lived in High Desert for 20 years.)

    We have wanted to move to northern CA for more than 20 years. This is a dream come true for us. I also have cousins in San Mateo and in Novato.

    I hope I can deal with the fog and the damp. I think so. I hope so. Pacifica has a Fog Festival at the end of September, which says it all, doesn't it? Fog? We have fog??? Do we have FOG!!!

    I am moving up on the 17th, can't wait! It's been a long year of waiting.

    Peace,
    Beth.
  9. mrdad

    mrdad New Member


    Well Beth. Had to go off line for awhile to finish my laundry before the weekend starts and I still have the energy??
    Understand about the heat!! Spent ten years in the Sierra and 13 in Chico. At least in the Mountains it colded off when the sun went down. I think Dante got the inspiration for his book after a summer up there! Been back here ten years and I've enjoyed the Climate again much.
    Hope your husband and family will enjoy it here too.
    "Talk" with you latter. Have a good weekend.
    MRDAD
  10. mesmall

    mesmall New Member

    Hi Beth,
    I was diagnosed with Fibro,cfs,and brain lesions before being diagnosed with Lyme!!I'm so glad I did the research and dicovered that I had symptoms of lyme.In my case,I had low body temp.There are over 250 different strains of lyme,so I tested negative for the one they tested for.A LLMD diagnosed me and I have been on antibiotics since last august.I now have a clear head,my memory is back,and many people mention how great I look lately.I still have some pain and twitching,so I know that I need to continue on the meds.I'm so glad that I kept searching though, and encourage you to read all thet you can about Lyme and the co-infections.
  11. BethM

    BethM New Member

    250 strains of Lyme? That's pretty daunting. Guess I have some research to do. I'll start tomorrow, but for now, it's bedtime. Yep, tomorrow is another day...

    Good night, all!

    Beth.