has anyone had lyme for a long time and are you getting treatment?

Discussion in 'Lyme Disease Archives' started by nyssagirl, Jul 9, 2009.

  1. nyssagirl

    nyssagirl New Member

    I took some treatment for a while and didn't see improbement and herxed so bad on the antibiotics, I gave up. Now I just feel as though the disease is eating me up. I am curious to see if any of you that have had lyme for a long period of time are receiving any help from treatment.
    Thanks for your input!
    Lynda
  2. victoria

    victoria New Member

    My son has, to a degree, but we agree with his decision at this point to stop oral abx and try other alternatives.

    He was dx'd in 2005 (CDC+) twice, 6 months apart with abx treatment in between); from other symptoms such as sweating and neurological problems, he likely also has babesiosis and bartonella.

    He continued on cycled abx and flagyl and also mepron & artemesinin for the bab. until last year (2008). His pain has mostly disappeared, tho it can flare, so was worth taking the abx for as long as he did - it receded VERY gradually tho, same with his profound fatigue. He still sleeps 12 hours/night, however, likely because his neurological problems have not gotten much better. SSD agreed and disabled him.

    It was suggested that, since by the time he was dx'd he'd obviously been having symptoms for several years (neuro symptoms first), that he use IV abx, but he refused so used the oral abx instead. I'm not certain that was the correct decision,we really debated it; but ultimately, because it was 2 months prior to his 18th b'day, we had to really let him make the decision.

    And yes, he went thru some really bad herxes... especially in the beginning, for many days he barely got out of bed.

    I have gone about things in a different way, using the Marshall Protocol (yes I know its pros/cons and that it's controversial), and also experienced herxing. I also saw gains however, 90% of them have not reversed, even tho I've taken a lot of time off between phases.

    I think the key to sanity for both my son and me was being able to cycle with the RXs. His doctor only had him take abx 3 weeks/month, 4th week 'off' as a 'vacation', also every weekend. His idea is it allows the body's immune system a bit of time to recover... he also had my son ocassionally take a month or 2 to 'wash out'/detox.

    One good resource is publichealthalert.org - there is a good interview in there with my son's doctor, Dr. Jemsek, as well as others, plus they talk about mycoplasma being overlooked. All of their articles are free :)

    I hope that helps. I know the hell of herxing, but, unfortunately it has to be endured no matter what protocol one does, it's the nature of Lyme and apparently other stealth pathogens. (Herxing was first observed when they treated Syphilis, it's also a spirochete).

    all the best,
    Victoria






    [This Message was Edited on 07/10/2009]
  3. Renae610

    Renae610 New Member

    Dr. J. in KS !!!!!!!!!!! My daughter has been chronicially ill for 10 years and now went to Dr. J's clinic for 2 weeks and has made incredible improvement!!! Totally natural approach to wellness! (Antibiotics are NOT the answer for Chronic Lyme). This is the BEST!!!! It is the unfolding of a miracle for my daughter, and I hope that for you too! He has helped many with chronic illness and other disability to get a new life! Read his books, Beating Lyme Disease and Every Day Miracles, and then go to him!! You will have to figure out a way to finance this approach but it is sooooo worth it!!!!!!!! If your M.D. could write that you've tried other approaches with no success, so making this referral to Dr. J. for treatment --that might gain you some insurance coverage. Drop me a note when you're getting better, o.k.? <smile>

    God bless you,

    ~Renae



    [This Message was Edited on 07/14/2009]
  4. munch1958

    munch1958 Member

    I've believe that I got bit for the first time by a tick in the Ozarks in 1969. Then again in 1974 in either MI or NY. Then again in 2001. I had EM rashes 2x and a strange hand rash that didn't clear up with prescription strength cortisone creams but did clear up with Abx for ear infections. It looked a lot like the ACA pictures on Lyme disease websites.

    I have kept a running record in my profile of my meds. I didn't get better until I got on HGH (I flunked the stim test for HGH release) and heparin for hypercoagulation. Those two treatments took me from 60% functioning to 95%. I'd say 100% but I'm struggling with osteoporosis spine compression fractures and SI joint dysfunction. I hope to be done with physical therapy in 4 more weeks and be at 100%.

    I'll always have to watch out for relapses due to stress but it sure beats a non-diagnosis or incomplete diagnosis of "fibro" and "cfs".
  5. Nanie46

    Nanie46 Moderator

    Hi,

    I have had lyme for 21 years. It was diagnosed as fibromyalgia in 1987. It wasn't until early 2009 that I figured out that I had lyme.

    I have been treating for 5 months with a LLMD.

    I am sleeping much better so far.

    It will be a long road after going untreated for so long.

    Lymenet.org's Medical Questions board could be very helpful to you.
  6. nyssagirl

    nyssagirl New Member

    I haven't been on here for a few days and was delighted to see that I had some reply's. Thank you so much for your input.
    Unfortunetly I can't see how I could get to KC, darnit. I am so glad he is helping your situation, though!!!
    Nanie 46, I wish you the best. I hope your treatment works for you!!
    To all of you, I wish the best and my prayers and hopes for a bright future are with you!
    Regards,
    Lynda
  7. ginnyw

    ginnyw New Member

    had it 20 years or more, lots of new remedies without repeating large doses of antibiotics - symptoms come and go, research on www.bing.com and try them all until something works for you at the time you flare. Biggest one is to avoid major stress whenever possible. Grape juice works for me if my symptoms get really bad. Noni juice with blueberry juice and grape juice worked for about a year and a half (very expensive) then just stopped working, like the bacteria built a resistance to it. I am now researching and trying new stuff - oxygen therapy, salt, vitamin c, meso silver, an herb called samento - just remember you always feel worse during die off before you feel better. Nasty little bacteria. Good luck
  8. farradaymcg

    farradaymcg New Member

    I was dxd CFS & Fibromyalgia 21 yrs ago. Many years bedridden on O2, port in chest for IV lidocaine for pain. In 2003 had severe septicemia, in hospital for 6 wks. with 2 IV's daily of strong antibiotics. Walked out of hospital! Soon walking a mile, talking well, much better! Most CFS symptoms gone.

    Past 2 yrs. have relapsed. Speech bad again, back in bed. Just got PCR Lyme positive. So will probably have to have IV antibiotics. But am hopeful that it will work again! Meanwhile having some good results with Chinese medicine...but even he says I need antibiotics.