Can you heal the lyme still have CFS?

Discussion in 'Lyme Disease Archives' started by LISALOO, Mar 23, 2009.

  1. LISALOO

    LISALOO New Member

    I've had CFS for 5 years. I'm seeing Dr V. in MN in May. My Igenix Lyme had some pos bands.

    My question is can you sill have CFS after you irradicated Lyme? I started feeling ill in Feb, which is not a Lyme month in WI. I've never been an outdoorsy girl.

    Can you get CFS, then have it activate the lyme, treat the Lyme, then still Have CFS.

    I can't live the rest of my life if I have CFS and I read that you can still have CFS after Lyme is treated, which scares the crap out of me.

    Thanks![This Message was Edited on 03/23/2009]
  2. Nanie46

    Nanie46 Moderator

    Hi lisaloo,

    It just depends on the cause of the CFS. If your symptoms are all caused by lyme, then your symptoms could all disappear with lyme treatment.

    If some of your symptoms are caused by another coinfection(bacterial, viral etc), then they must be addressed and treated also.

    Make sure you find a good ILADS educated LLMD. He will be able to sort out coinfections.

    Read as much as you can from the ILADS website and others, so you will know what a good LLMD would do.

    Lyme and coinfections are complicated issues. You can recover, but it takes time. A good LLMD will know what to do.


    It doesn't matter if you got ill in the winter. You could have had the infection before that and it was activated by some stressor.

    Also, we used to think that ticks are not active in the winter, but that has been disproven. I just read something yesterday where live ticks were observed near the Delaware Water Gap in PA during the winter in subfreezing temps with snow on the ground.

    [This Message was Edited on 03/23/2009]
    [This Message was Edited on 03/24/2009]
  3. munch1958

    munch1958 Member

    I think what you are asking about is the constant unrelenting fatigue that comes along with Lyme Borreliosis. My fatigue is completely gone now. I think several things that I'm doing are working together towards eliminating fatigue.

    I was so tired before I would find myself calculating how many steps to the washer/dryer and then the number to the dishwasher and figuring out ways to conserve energy and take fewer steps. My to do list before Lyme treatment consisted of 3 things...feeding the pets, doing dishes and making dinner. Now I'm doing whatever I want to do.

    My FFC tests showed I was low in vitamin B-12 so my LLMD has me doing shots every day. If I skip a shot I feel it the next day plus my longstanding constipation issues are worse. B-12 does wonders for me in that area. The fatigue didn't go away until I added the B12 shots.

    I also had a LEAP test. Many with candida problems have reactions to every day foods like wheat, soy, and corn. These were taken out of my diet for 6 months. Then I took Diflucan, Nystatin and tons of probiotics.

    Please read the article here in the library about the P-125 pathway. My LLMD explained that these bugs in the "Lyme soup" all work together. Candida and Borrelia are often found in the same cell. They work together in a synergistic way.

    I was also low in growth hormone, my thyroid was out of whack and my adrenal function was poor. My IGF-1 was on the borderline. I'm now seeing a board certified endocrinologist to regulate growth hormone, thyroid and adrenals.

    I am sleeping better than I've ever slept in my life. This is key in fighting fatigue. I have a regular sleep schedule now and I took steps to change my behavior like not using my bedroom for anything but sleep and sex. I also turned my sleep clock back by 1/2 each night. Then added melatonin and 5-HTP along with the Ambien CR. I'd like to be able to sleep without it but so far I am not able to cut this out yet.

    I also believe I had a babesia infection that was just cranking up my brain. Then the poor adrenal function didn't help. With a lack of cortisol, I was waking up with the slightest noise at night.

    I've been on Abx for Lyme Borreliosis, Bartonella and anti-malarials for Babesis (parasite infection) for close to 3 years. It's been a long and slow road. It took about 2 1/4 years for the FM pain to go away.

    Many Lyme patients are low in magnesium. That needs to be taken away from Abx and calcium. Sometimes I think the Borrelia bacteria is stealing my nutrients to replicate.

    So far, I've been treated for many infections... CPN, Candida, EBV, Borrelia, Bartonella, and Babesia. With each treatment, I've gotten better and better. It was not an overnight process but I'm glad that I went down the LLMD road.

    All a diagnosis of CFS and FM get you is a one way ticket to the loony bin! They say there is no cure and no treatment so that means you are supposed to live with nasty symptoms. Or worse, I was told all of my symptoms were in my head. Or that I was a hypochondriac.

    I say all of this because all I ever did read for 28 years was material about CFS & FM. I never considered that Lyme Borreliosis could be the real thing at the root of my problems. If it is that way for you then possibly your LLMD can sort this out for you too.

    I was lucky to have found an excellent doc right off the bat after my FFC testing. Be sure to bring any lab results that you have with you when you see the doc. My doc poured over my labs from FFC. The initial interview took over 2 hours. I've never seen a more thorough doctor.

    Good luck!!!





  4. LISALOO

    LISALOO New Member

    I decided I really needed a dr that specialized in Lyme, not LYme CFS and Fibro, since CFS and Fibro drs don't do anything. So I looked up LLMD's in WI and one had a 4 month wait and one I got into in a week a dr. H.

    God I hope he can giev me some hope.
  5. Nanie46

    Nanie46 Moderator

    Hi Lisaloo,

    I am glad you are going to see the LLMD soon. Did you find out what to take?

    I had to take a typed history (my words). I just did it by date and made it to the point.

    I had to take a med list with dosages, last visits from Rheumy or Neuro Dr's and any labs I had recently.

    Make sure you have read Dr B's guidelines before your visit......

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    Be sure to take notes at your visit so you can remember what all you are told.

    Please be sure to let us know how it goes!

    Good luck!!!
  6. pw7575

    pw7575 New Member

    Hi Lisaloo,

    I am so glad that you are seeing an LLMD. I hope that they will be able to help you.

    I definitely understand your worry about getting rid of the Lyme and still having CFS. I think most people that were told they had CFS and then Lyme later on wonder about the same thing. I have wondered if I have CFS AND Lyme or if the Lyme is what is causing my CFS symptoms. From what I have read online it seems that a lot of people were just misdiagnosed with CFS (or FM) when really it was the Lyme the entire time making them sick. Lots of these people actually get well again when they finally get Lyme treatment. So I think it is possible to get well again. I think that I probably have had Lyme this whole time.

    Either way if you find a really good LLMD it shouldn't matter if you have one or the other or both. I found a great LLMD and she is treating my entire body. She doesn't just treat the Lyme. I have been sick for so long that I have a lot of other things wrong with me and other co-infections as well. My LLMD is treating all of those things...not just the lyme. She uses a combination of antibiotics and LOTS of natural supplements and vitamins as well.

    So maybe that is something you would want in your LLMD as well. If you are unsure or concerned about having both you could maybe find an LLMD like mine that will treat your entire system. That way if you have CFS AND Lyme you will have it all treated and taken care of.

    Definitely let us know how it goes with the LLMD. It is important to find one that you like and feel confident in.

    Take Care!
    Pam
  7. LISALOO

    LISALOO New Member

    I have an apt with an LLMD, a Dr. H in WI, not sure if he treats the whole body.

    I have IC which just came out of remission so I know I can't do natural supplements and vitamins. Plus I probably tried 100 supplements with no change in symptoms.

    I picked an LLMD who I didn't have to wait for 7 months to get into and who I had heard good things about.
    [This Message was Edited on 03/27/2009]
  8. pw7575

    pw7575 New Member

    Glad that you found an LLMD that you have heard good things about. Even if you can't do natural supplements or vitamins he should be able to treat any other issues with meds as well. Hopefully he will do that in addition to treating the Lyme.
    [This Message was Edited on 03/27/2009]
  9. LISALOO

    LISALOO New Member

    Thanks for your htoughts. I wish I could do the natural supplements and herbs if I have lyme, as I have yeast issues no matter what with Antibiotics. And I know what damage they can do to the gut.