How Many Been Tested for Lyme Disease?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, May 31, 2013.

  1. greatgran

    greatgran Member

    After years of being dx with cfs/ fm and had, had lyme test which came back negative. I was seeing a new doctor and she ordered a western blot lyme , trying to rule out MS etc.., it came back positive, was I happy to have a dx and treatment.

    After treatment with antibiotics I am still the same. I think the abx helped with the pain and noticed a slight improvement for awhile but didn't last.. No longer could afford seeing the Lyme Doc ,, now my Gp is treating me as I have fibro/ cfs. I am so confused and feel like I am going in a big circle and not getting anywhere on the road to feeling better. I know there is no cure for either of these diseases so guess I am just venting .

    Can anyone relate? tks
  2. Nanie46

    Nanie46 Moderator

    Hi greatgran,

    It is true that there is nothing simple about having chronic Lyme Disease. Treatment takes years and rarely do people just have Lyme. Often the chronic infections have played havoc with our hormones and other things.

    Autoimmune illnesses often result from the chronic, untreated infections.

    My adult nephew was just diagnosed with tick-borne diseases. I told him 5 years ago that I thought he had Lyme.

    He did nothing about it until recently when he was feeling so fatigued he could barely function, and his insomnia and pain were horrible.

    Today he found out that he has Lyme, Bartonella, Babesia and Protomyxzoa Rheumatica. He has a long road ahead. If he were just treated for Lyme, he would not get better.

    Besides many of us having multiple infections, there are many other factors that affect a person's response to treatment, such as detoxification problems and others. (some genetic mutations,etc)

    We are all affected differently too....100 lyme patients will have 100 different stories about their illness.

    I want you to know that it is possible to get better to the point where it makes a difference in your quality of life. It can take many different medications for a long period of time. In addition, other things must be addressed, such as adrenal stress, hormone deficiency, food sensitivities, heavy metals toxicity, electromagnetic fields from smart meters, routers and other sources, detoxification, exercise, etc.

    More and more people are being diagnosed with the recently identified Protomyxzoa Rheumatica discovered by Dr Stephen Fry from Fry Labs in AZ. I believe one of the drugs being used to treat it is Ivermectin, an anti-parasitic medication.

    I treated with antibiotics for 3 years and I consider myself 80% better. Bioidentical hormones also help me alot, along with eliminating gluten, sugar, HFCS, dairy, and soy. I exercise also.

    There are also many other Lyme treatments available for people who do not want to take antibiotics for any reason.

    Many are outlined in the book, "The Top Ten Lyme Disease Treatments" by Bryan Rosner.

    One LLMD doesn't call it Lyme...he calls it MSIDS: Multi-Systemic Infectious Disease Syndrome.

    I like Scott Forsgren's site. He has Lyme and co, and attends many conferences where he collects diagnostic and treatment information and posts summaries on his site,

    Please don't give up on getting better. It is possible. Keep reading, researching, and trying new things.

    Hugs to you!!
  3. vickiw

    vickiw Member

    Hi Greatgran,

    How long were you on antibiotics? If only 1 month after you've been sick for years, it is not enough. As Nanie46 said, she was treated for 3 years.

    I just came off of 4 months of heavy duty antibiotics after being sick for 10+years. I was feeling so much better, but after 10 days off the antibiotics, I crashed and completely relapsed. I'm taking banderol and samento (herbs) now. I'll see my LLMD on Tuesday and have an appointment with another LLMD on the 14th. After researching, thinking and praying about this, I'll decide who to stay with.

    It does get expensive...if you still test positive, will your gp consider extended treatment? I cannot believe there is so much controversy about this. A reliable test needs to be found and effective treatment needs to made available - we're living in the dark ages as far as these illnesses go.

    Best of luck with your healing journey...
  4. greatgran

    greatgran Member

    Thanks Nanie-46, I think you were the one that encouraged me to get tested. I feel I have tried and been tested for all of the above , maybe not. I am getting horrible bone, muscle pain in upper legs and thighs, thighs so tender to the touch.. This happens after activity.. Still the sinus/ ear problems among many others.

    I can no longer afford the LLMD but my GP does a lot of testing and feels something is going on besides lyme .. all the autoimmune test all neg. rhem. neg. plus hair testing for toxins, metals etc.. The next step will be the heart. I get so confused and feel after all the years , doctors and bills I have had enough.

    Happy to hear you are 80 % the LLMD told me to only expect 40 maybe I am there , I am on some days, then I have the days I spend in bed in misery.

    Not sure but think I have read the book but I am going to give it another try.. Yes, diet is so important I have found that out. Not as faithful as I should be..

    Sure don't want to give .. Thanks again
  5. greatgran

    greatgran Member

    Vicki, guess I have been on abx off and on for three years.. Have to stop and let the gut heal then on again. My GP is trying but he says once positive always positive, like mono. He does test but also agrees so little known about how to treat. All my test keep coming back negative except the IGG 23 band for lyme . Won't repeat what I just replies to Nanie..

    I wish you the best toward your healing. The not knowing is it Lyme or something else drives me crazier than I am.

    There are days I feel like my ole self then there are days I feel like I am dying. So try to enjoy the good ones.

    Keep me posted on how you are doing.. hugs
  6. Nanie46

    Nanie46 Moderator


    Have your been treated for systemic yeast/candida? Many of us have that problem also. I remember the horrible fatigue (a herx) I had one summer when I took one month of Diflucan.
    Chronic sinus issues can sometimes be linked to chronic candida.

    Mold can also be a problem.

    Protomyxzoa Rheumatica was only identified in recent years, so some LLMD's may not be testing for it. I know I was never tested for it.

    Have you tried any herbal protocols?
  7. greatgran

    greatgran Member

    Nanie haven't been treated for yeast , did the spit test and had a blood test, neg. but I think we all have yeast. I try to avoid sugar but give in at times. Gota ck on Protomyxoa Rheum.. never heard of it. Thinking of seeing my LLMD again
    she can ease my what ifs.. I recommend the llmd I was seeing to a church friend and she really liked her , the llmd was telling her something about folic acid not sure of the details but think this is something new in lyme testing, has to do with why some get better and others don't.. You probably know about it if so get back to me.. When I can comprehend what I was told will let you know.. thanks..
  8. Nanie46

    Nanie46 Moderator

    Hi greatgran,

    I wonder if your LLMD was talking about MTHFR mutations?

    MTHFR stands for the methylenetetrahydrofolate reductase gene.

    You can read all about these mutations, protocol, etc at the following link. Click on "Read this first", scroll down a little and you will see the articles that Dr Lynch wrote to explain all about MTHFR.
  9. greatgran

    greatgran Member

    Nanie, not sure but I have taken the rx vit. for that it starts with a methy.....I think.
    Have decided to give her a call and see if I can afford another visit ..Just need to rule out that something else is not going on especially at my age. tks