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Discussion in 'Lyme Disease Archives' started by glory69, Aug 5, 2006.

  1. glory69

    glory69 New Member

    HI!

    very interesting to read what you all are going through! much like myself. i was diagnosed with Lyme April 2005. I was on antibiotics for 2 months and went on natural stuff - Samento, probiotics etc. felt better for awhile - the last 3 weeks i'm feeling bad again - fatigue fatigue fatigue. do i start all over again? any suggestions? does this ever go away????
    -glo
  2. hopeful4

    hopeful4 New Member

    Sorry to hear you're not doing so well. Were you diagnosed with chronic lyme? Or was it a recent bite back in April '05? And then, why did you go off the antibiotics?

    Another question: are you working with an LLMD?

    I think that chronic lymies are in for a long haul with treatment. And, we have to treat for the possible co-infections, even if we test negative for them. Were you tested for co-infections? Treated?

    What exactly is the protocol you're using? We have to hit the lyme and co-infections so that it's all thoroughly treated, including the cyst form of lyme. Sometimes the lyme is being treated, and then the co-infections flare.

    What about other factors: nutrition, supplements, detoxing, stress, any exercise possible? Are you building up your immune system? Do you have low thyroid? If so, is it being treated? Do you have other infections such as EBV, mycoplasma, chlamydia pneumoniae? Or heavy metals?

    I've found that this board is kind of slow-moving, but I still come here now and then. If you haven't already, try the lymenet dot org message board. It's a lot busier and has many experienced lymies and info.

    BTW, I've been sick at least 6 years, just got diagnosed in the fall '05. On treatment since Dec. '05, and just in the last 3 weeks am experiencing some improvements! It takes time.

    Take care, and best wishes,
    Hopeful4
    [This Message was Edited on 08/06/2006]
  3. glory69

    glory69 New Member

    Thanks! Hopeful 4,

    lots of questions! #1 What is an LLMD?

    I changed my diet to make it more nutritous and also did some detox but not heavy metals. Yes I'm working on my immune system and excercising some.
    I've been getting help from an M.D. and a certified health nutritionist who is a retired R.N. She has been very helpful(she was cured from fibramyalsia 12 yrs ago and got her treatment from the M.D. I go to.) Anyway, maybe I'm just too impatient? But my legs feel like jello and are very weak the past 2 weeks. I have some pain also.
    I will take your advice and check out the other message board.
    Hope you keep feeling better, -Glory69
  4. victoria

    victoria New Member

    Minimonkey is about the only one I know here who has felt a whole lot better relatively quickly, so there are some. For most it does seem like a long haul. My son has been treated with abx since May 2005, and while he has made some progress, he has a long ways to go.

    From what I've read, the herbal approach alone does not help most. People even such as JoAnn Whitaker PhD who invented the Bowen test uses abx in pulses, with samento etc in between, to keep the lyme at bay. Google her website, it is interesting reading.

    My son was off all abx once for up to 3 weeks while we debated about his doing IV abx... he felt better initially then started to go back downhill.

    Right now his system seems to be in an uproar, and is only pulsing abx one week out of every 4. One thing he added for a while is the Salt/C Protocol, he finds he herxes to it. But it was at that point he was advised to give his immune system a rest, so he has quit it for a while too.

    It sounds like it is debatable whether or not it can ever be totally eradicated, especially if one has had it a long time. Remission is probably a better word sadly.

    Always nice to meet someone new... I lurk at the other board but don't post much there.

    all the best,
    Victoria
    [This Message was Edited on 08/07/2006]
  5. glory69

    glory69 New Member

    Thanks Victoria,

    Sorry about your son! I have 5 kids and 3 are diagnosed with Lyme along with myself, and I'm suspecting the 4th one has it now too. My 2nd son is back on antibiotics, the rest of us are on the "natural" protocol. (samento, probiotics,liver support, lymphatic system support)
    How did you find out about the Bowen test? That test is what saved my 11 yr old daughter!
    take care, Glory69
  6. minimonkey

    minimonkey New Member

    Hi all --

    Glory -- I think we chronic folks are always going to have to stay on top of our health. My LLNP is of the belief that while Lyme can't be eradicated completely (at least not with current treatments) that it can be put in long-standing remission -- the idea being to do treatment to kill the spirochetes and also supplements/life changes, etc. to build the immune system, balance out imbalances, etc.

    I have made a remarkable recovery so far, and I'm only 6 months into treatment for lyme that I've had for years and years.... that said, I'm sure I'll be on the abx for at least another 6 months at a minimum. I still have my rough patches, but I'm SO much better than I was!!!

    are you being treated by a lyme literate doctor?
  7. kellyann

    kellyann New Member

    Welcome!
    It sounds as if you and your children need to be on a antibiotic program under the care of a Lyme Literate Doctor!
    That is just my thoughts on the matter though, haha, take it as such!
    I don't think you will get well off the natural stuff.

    Take Care and Hope to see you post often!
    Kellyann
  8. glory69

    glory69 New Member

    Minimonkey,

    What does your treatment consist of? We've tried a lot of different avenues and it comes back to making sure your immune system is built up....etc! But at the same time you have to "trick" the spyro by changing the meds every so often.
  9. nyssagirl

    nyssagirl New Member

    Hi,
    Since I am really new to treatment and have been wondering about how long it might take to get some results, I got hopeful when I saw that you are doing better. That is great news. I have only been on my antibiotics for two weeks and he said I would be on them for three months. I have had it for a long time, as well, I wonder why he only put me on them for 3 months. Hope it is long enough. I went to a LLMD in California. I feel like heck, I hurt like crazy and feel so confused. I am irritable as I can be...I am bearing with it in hopes that I will be better off in the long run. One thing that surprises me is I am not nauseous and I thought for sure I would be with the antibiotics...I am on Nexium, but sometimes that doesn't even work. I am feeling much better in that respect.
    Thank you for letting me go on and on, I love this place..I love being able to converse with People who can relate and being able to give support to each other is fantastic!!
    Good Luck!! Keep feeling better.
    Nyssagirl
  10. victoria

    victoria New Member

    most LLMDs agree with the protocol of doing abx 2 more months after all symptoms are gone, so I'm a bit confused as to why and how your doctor thinks you only need 3 months worth...

    also, the first abx used may not work well, there are over 100 strains of Bb in US ... my son has had to try a few different ones. Plus there are often co-infections like bartonella that may require other specific abx.

    Have you read the posts here? Also you may want to go to ilads.org or LDA.org, both sites have a lot of information with which to educate yourself and discuss with your doctor.

    all the best,
    Victoria


    [This Message was Edited on 10/31/2006]