Could ME/CFS/FM actually be undiagnosed Lyme disease?

Discussion in 'Lyme Disease Archives' started by zoster, May 2, 2008.

  1. zoster

    zoster New Member

    There is so much going on with Lyme disease and it's diagnosis and treatment. It seems to be a disease which is not very well understood yet and it is still very early days with regards to reasearch into it's effects and treatment.

    Is is possible that ME/CFS/FM is infact Lyme disease? It appears to cause so many symptoms and there are so many different strains.

    There is still no reliable diagnostic test for Lyme disease yet and it seems doctors find it difficult to diagnose. Are we slipping through the net of diagnosis for Lyme?


  2. mollystwin

    mollystwin New Member

    Thats' what happened to me. I was first told MS, then CFS with possible FM.

    Years later found out it was lyme. I wish everyone with CFS/FM would consider a lyme diagnosis. Testing is not accurate, it's true. So many of us here are in recovery thanks to the lyme diagnosis.

    Take care,
    dar
  3. zoster

    zoster New Member

    I have read many stories now of CFS being found to be Lyme disease.

    I had 2 negative tests (2 weakly reactive bands on one test, inc band 41)

    I'm looking into seeing an LLMD and considering antibiotics as I have pretty much tried everything else.

    very best wishes
    Z
  4. bunnyfluff

    bunnyfluff Member

    that have found out about the poison of Lyme and it's dirty cousins tend to agree. I lost 10 yrs of my life to a "trashcan Dx", when ANY of those Dr's could have checked for Lyme. I blame the rheumy and neuro the most. They should know better.

    I think that a lot of people that have been given the death sentence of CFS probably actually have Lyme. It is amazing on the Lyme sites how many had been given that crap Dx, and later found out that it had been Lyme all along.

    The statements that we "probably just don't handle stress well" are a slap in the face to every woman out there.

    Sorry, I'm "gettin' the vapors" and need to go lie down.
    Bunny
  5. bunnyfluff

    bunnyfluff Member

    Sorry, I am just a real smarty pants sometimes. :)

    B.
  6. wld285

    wld285 New Member


    I also have my own theory. I think I've had Lyme since I was a kid. Going untreated, my poorly functioning immune system let all these other critters in.

    MY question, do you all have EBV, mycoplasmas and all the other good stuff too?

    Linda
  7. yes,i feel that CFS could be undiagnosed lyme,but my doctor wont test me for lyme.

    he said to me, just this year,,,theres currently no test in the uk for lyme,and i dont THINK you have lyme anyway.

    ive got big news for him...ive got parasites in my blood vessels,and poo,and now feel 100% better in my health while on pumpkin seeds,for sure.

    ive been on the seeds seven weeks now,and started to feel well,and different after the first night.that was very supprising to me,let me tell you.and very welcome too.

    im talking about this next week when i go to hospital for my face/jaw problems,which by the way,are much more improoved now.but im keeping my hospital appointment anyway.

    kind regards fran
  8. buttercakes

    buttercakes New Member

    I was also told it was MS, Lupus, FM, cfs,hypocondriac, depression this went on for years. 1/08 I finally seen a llmd who said it was lyme right away, did an Igenex test and came out positive(even CDC positive). Have you been tested? good Luck, sandie
  9. klutzo

    klutzo New Member

    I agree with the last poster. The cost of admitting the truth will be enormous to the reputations of the IDSA controlling docs at Yale, to the govt. for their laxness at Plum Island, and to the insurance companies that pay the Yale ducks fat consulting fees and don't want to pay for our long-term treatment.

    Thank God for the Connecticutt Attorney General, who has finally exposed those IDSA liars in a big way, and taken the Lyme treatment guidelines out of their hands.

    I was diagnosed with MS for 4 years, then FMS for 17 years, before finally getting the Lyme diagnosis in 2003. It had destroyed my body and brain by the time I found out. In fact, it was the onset of the sudden, drastic change in pesonality known as "Lyme rage" that finally scared me into getting tested.

    Before that, I had no temper at all, and did not want to believe the increasing number of people in the FMS support group I ran, who told me they were positive for Lyme and that I should be tested. I understand the fear of many people....it took me 12 years after I was first told of the connection to get tested.

    I think the most convincing test for those who doubt is a trial of treatment. For about $45, you can get a bottle of the strongest, most studied herbal treatment, Samento. This is much cheaper than seeing an LLMD, if you are straped for cash and doubting the connection.

    I used my healthy DH as a "control" guinea pig. In only 3 days, I had him all the way up to the treatment dosage of 15 drops of Samento. I kept him there for a week and he had no symptoms at all.

    On only one drop per day, I herxed so bad I thought I would die. It took me over a year to get up to 9 drops per day, which is not even treatment dose, and at that dose, I broke out in 3 classic Lyme EM rashes in a row, all in the same place on my body. Even my PCP said: "that looks like a tick rash". I've still never been able to get up to the full dose of Samento.

    Then, I had cutting-edge testing to confirm it (Bowen QRiBb), which was highly positive, twice.

    I am not convinced that all CFS/FMS is Lyme, just most of it. In 10 years of running my support group, before I'd ever heard of Lyme, I at first thought I was seeing two distinct stages of illness in the group.

    However, over the years, the milder group did not progress to the type of illness the rest of the members had. One group had the relatively mild illness described in the Arthritis Foundations' booklet on FMS that Rheumy's hand out, while the other group clearly had something more serious that was progressive.

    The milder group made up about 1/4 of the support group as a whole, and I now suspect they have other, less serious intra-cellular infections, or just a genetic inability to detox from all the chemicals in modern society.

    Genes that prevent adequate detox, like the DR4 gene, are part of susceptibility to these infections, since Lyme puts out potent toxins, which was the reason it was being studied as a bio-weapon at Plum Island, directly upwind from Lyme, CT. If not eliminated, these toxins recirculate endlessly, causing organ damage.

    I see FMS/CFS as just a list of symptoms now, not an illness on it's own.

    Klutzo