What pathogens reside in the neck & spine?

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Aug 17, 2009.

  1. Elisa

    Elisa Member

    Hi all,

    I have noticed that when I ease up on the antibiotics - my neck and spine pain really increase. I have severe neck and spine pain at night (and a low-grade fever of 2 yrs - 99.5-100.5).

    Are there "bugs" associated with spine and neck pain? Which ones?

    Thanks so much for your help and wisdom!

    God Bless,

    Elisabeth
  2. Nanie46

    Nanie46 Moderator

    Hi,

    Yes, Borrelia burgdorferi (lyme) is a complex bacterial infection that causes neurological symptoms such as neck pain....and lots of other possible symptoms.

    Borrelia is often associated with other infections such as bartonella, babesia, ehrlichia, etc.


    Here's a great resource......


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

  3. Elisa

    Elisa Member

    Hi Nanie46,

    For me, Lyme is the lurking diagnosis - meaning I always wonder but I haven't found a doctor with knowledge.

    I did take an Ingenex test - but can't find a doc to interpret it. I even posted it here - maybe I will again.

    I was diagnosed with Lyme 20+ yrs ago and they treated me with a few weeks of antibiotics. They also thought it could be RA (I had a positive RA factor back then.) But who knows...I wish someone would come up with some definative testing methods.

    I did read about the CD57 test - as a possible determining test for long-term Lyme people.

    Anyway, thank you so much for your help and imput - I will read the link.

    God Bless,

    Elisabeth
    [This Message was Edited on 08/17/2009]
  4. jasminetee

    jasminetee Member

    The Epstein Barr Virus tends to reside in the tendons on the left side of the neck and HHV6 has been found throughout the Basil Ganglia and spinal fluid of some PWC. I'm sure there are more too.

  5. simpsons

    simpsons Member

    as well as the above you should consider chicken pox and or shingles and consider childhood virus.s reactivating perhaps
  6. munch1958

    munch1958 Member

    http://stanford.wellsphere.com/lyme-disease-article/lyme-disease-a-complex-illness/733631
  7. heapsreal

    heapsreal New Member

    I have asked similar questions in the past about back and neck pain in relations to cfs. I have also read that the english girl sophia who died of cfs, when they examined her spine it was extremely abnormal, supposedly infected with alot of herpes virues(ebv,cmv, etc).

    if cfs is a neurological illness, then the spinal cord and neves are apart of that.
  8. jasminetee

    jasminetee Member

    CfS since-- yep, I've had many episodes like that with my neck ever since I was a kid. Doctors would tell me I slept wrong. Yeah right.

    Heapsreal-- I also found it amazing when Dr. Peterson was restating this at the CFSAC meeting. He was saying how they didn't find HHV6 in her blood or spinal fluid but found it in her brain. Her ganglia was really infected.

    This is a big problem for us. They were saying at the CFSAC that they would have to do biopsies to find these viruses in us. I say, no thanks, I'd rather try the drugs, if they don't work anyway then what's the point of finding it and if they do work, hurray! you get your life back.
  9. jasminetee

    jasminetee Member

    Hi LonelyHearts -- Did you respond well to Valcyte? I was on it for 7 months but I never felt any better, only worse.


    tee
  10. richvank

    richvank New Member

    Hi, Elisa.

    I'm sorry to hear about this pain in the spine and neck. The fact that they get worse when you ease up on abx suggests that they are due to bacteria or protozoa, rather than to viruses or fungi.

    I hope you will pursue the possibility that Lyme disease or its coinfections are involved. You will probably recall that I suggested Babesiosis as a good possibility some time ago. I still think that is a good candidate, given the ongoing fever. Maybe you can find a doctor in your area who is familiar with these diseases from the ILADS website.

    There are other treatments beside abx that may be needed. I would suggest particularly looking into Dr. Lee Cowden's herbal treatments. In the new book Insights into the Treatment of Lyme Disease, by Connie Strasheim, he describes his experience in successfully treating a number of patients who had either Bartonella or Babesia. Abx failed to help these patients, but the herbal treatments worked.

    I would really like to see you beat this thing, Elisa.

    Best regards,

    Rich
  11. genevieve

    genevieve New Member

    Hi CFS since 1998, interesting to hear you are taking inosine, may I ask what sort of dose you are on and does anyone have any refernces on inosine as an antivial, I've read of Cheney recommending it but never heard of it being used in this way before.

    Just to be contrary, I had epstien barr in 1980 then later that year cosackie b3, an enterovirus, and both homed in very much in my spine and brain, still got painful next to my spine on both sides but worst on the RHS.Also I have a lot of problems with my back "going out" of alignement ever so slightly, ligamnets seem to be wonkey and I have to get ti repeatedly re[etedly manipulated as it is v painfulwhen out. Spial area is v sensitive and muscles round about in spasmm, agsin they were badly affected by these viruses.

    When I told my GP at the time of the EB infection that my spine was so painful and inflammed, with inflammation moving slowly but perceptably up my spine over a cuple of days and then round my brain with a feeling of my spine and brain being squeezed and v inflammed, then a load of weird syptoms relating to my perception of my body shape and temp control both of which I still have to a degree 3o years on, he looked at me as if I was completely bonkers, he didn't seem to beileve the severity of what I was going through and later was just appalling.

    Anyway I've found problems with both sides of spine and mostly RHS of brain and head, feel as if RHS of head is squashed in at my R eye near the top and that part of my face is all deformed. Not aware of this all the time just at times. Also feel one side of my body is different to the other. LHS feels much larger, RHS feels sort of darker, can't explain other way. What a strange body!
  12. genevieve

    genevieve New Member

    Hi CFS since 1998, interesting to hear you are taking inosine, may I ask what sort of dose you are on and does anyone have any refernces on inosine as an antivial, I've read of Cheney recommending it but never heard of it being used in this way before.

    Just to be contrary, I had epstien barr in 1980 then later that year cosackie b3, an enterovirus, and both homed in very much in my spine and brain, still got painful next to my spine on both sides but worst on the RHS.Also I have a lot of problems with my back "going out" of alignement ever so slightly, ligamnets seem to be wonkey and I have to get ti repeatedly re[etedly manipulated as it is v painfulwhen out. Spial area is v sensitive and muscles round about in spasmm, agsin they were badly affected by these viruses.

    When I told my GP at the time of the EB infection that my spine was so painful and inflammed, with inflammation moving slowly but perceptably up my spine over a cuple of days and then round my brain with a feeling of my spine and brain being squeezed and v inflammed, then a load of weird syptoms relating to my perception of my body shape and temp control both of which I still have to a degree 3o years on, he looked at me as if I was completely bonkers, he didn't seem to beileve the severity of what I was going through and later was just appalling.

    Anyway I've found problems with both sides of spine and mostly RHS of brain and head, feel as if RHS of head is squashed in at my R eye near the top and that part of my face is all deformed. Not aware of this all the time just at times. Also feel one side of my body is different to the other. LHS feels much larger, RHS feels sort of darker, can't explain other way. What a strange body!
  13. simonedb

    simonedb Member

    hey cfssince98, do you feel better now than you did in 08? Has it been worth it yet to go thru these hassles? I have been doing similar experimentation this year, not as focused as yours, and had flares from it too, and sometimes do feel better once go off the stuff than I did before I think, but not sure, and I want to know its worth it to take these antivirals if its making me feel worse, its hard to know how long to hang in there w/it.
  14. simonedb

    simonedb Member

    what does doc mikovitz say to do for inflammation?
    yes, I am going to keep playing with inosine, artesunate and wormwood in small doses once in while, as too much flare if too much too often.
  15. genevieve

    genevieve New Member

    Thanks for the info on your your inosine treatment and on immunovir.

    I've treid olive leaf and take if for cold/flu too and find it to be helpful

    Not tried lauricidin but am seriously thinking of using it as it sounds v interesting.

    BW,

    genevieve