Lyme disease/fibro/cfs

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Mar 1, 2009.

  1. I am confused,, especially after reading the thread on neurological symptoms. Am I reading that all the symptoms we have with fibro/cfs can be lyme and mimic them? I am at my wits end with so much pain especially in shoulders and hip area. Walking gets harder and harder for me, somedays I want to sit and cry. Can lyme also make parts of your body shake also? My dr ran the typical lyme on a blood test, and I know that one doesnt show. So we suffer for yrs.

  2. gapsych

    gapsych New Member

    There is a lot of controversy over this topic, especially over the test and whether is shows an active infection or that you have been exposed. There is also controversy whether long term Lyme exists.

    There are also bitter feelings that the Lyme board is now separate.

    While I believe that Lyme is overdiagnosed in the population that go to LLMD's and get their test, I would suggest posting this on the Lyme Board or do a search on Lyme either on this board or google. You will probably get more replies by doing that.

    Seems like any symptoms are attributed to Lyme these days. Get as much information as you can before making a decision.

    True Lyme certainly exists. It is the diagnosis which can be controversial.

    What you might want to do is get the Ignex test and take the results to an infectious disease doctor.

    Take care.
    [This Message was Edited on 03/01/2009]
  3. Daisys

    Daisys Member

    There are 2 groups of doctors who treat lyme. One group consists of doctors from all specialites who have lyme themselves, or someone they love does. They are very motivated to cure lyme. They belong to ILADS (International Lyme and Associated Diseases Sociiety) and are called lyme literate doctors.

    Another group is Infectious Diseases Association, and consists of doctors who specialize in just that--infectious diseases.

    The controversy is that antibiotics are overused and there is fear that antibiotics will fail because of that and should be strictly used only when needed and for as short a time as possible. Some diseases, like Tuberculosis, Syphilis, some acne, and some gum diseases use long term antibiotics without anyone objecting.

    The insurance groups, and the IDS feel that lyme is not a disease that should need long term antibiotic use. They feel the LLMDs, who use long term abx use for lyme disease should lose their license to practice medicine.

    I'm here to say I doubt if I would be alive today if I hadn't found a LLMD, who started treating me about 1 1/2 years ago--I was going downhill fast. I'm still in treatment, but feel I at least have a life now, instead of the brain fog, painful bedridden existence I endured before.

    It stands to reason that the ones who have lyme and are motivated to cure it at the risk of losing their career are right. My LLMD gets patients back to living normal lives, but it takes long term abx to get the infection down once it's gotten to a chronic state.

    I know of a naturopath who tried to treat herself with herbs, and finally had to take abx herself, even though she's against using them in principle. She just wasn't getting better before she started taking abx.

    What isn't helping settle the matter is the lack of research. The tests that exist don't test for all the forms that are out there, and the spirokete that causes lyme disease disarms the immune system, so it doesn't even see the infection. So, there are many false negatives with the tests.

    The CDC says lyme disease is a clinical diagnosis, which means the doctor diagnoses the disease by history, symptoms, and hopefully tests to support it. One thing that helped my doctor is the way I reacted when treatment was started. If I didn't have lyme disease, I wouldn't have responded to the medication as if I did.

    One good way to find a LLMD (they are few and far between) is to go to lyme net flash medical questions. They have a private messaging system. That way, the names of those who will treat lyme are not made public.

    I was diagnosed with CFS and later with FM, and now believe it was lyme disease all the time. The pain got progressive with me--in fact, I didn't have pain with it for years.

    I hope I answered your questions clearly. It's a complicated disease, and the political controversy leaves us patients suffering while no progress is made in research, or education of the medical field in general.
  4. hopabout

    hopabout New Member

    Dear Fibrobutterfly,
    I spent many years in confusion over these "diseases" and "illnesses." Just so you know, there are 8 cases of fibro in my family, 3 full blown cifds, lupus, polio from the shot, post war syndrome, tons of neurologial items from bipolar to schizophrenia and alzheimers.... its a word game !

    I began studying genetics many many years ago because of all this. Many of my friends were getting sick and I was obcessed with answers. I went to support groups, ran support groups and attended groups for any disease available.

    What I noticed was that when I rubbed my left thigh in discomfort, so was everyone else... at the same time. When my MS friend was having a bad day, I was having a bad day. And, when the Post Polio group were to exhausted to go to the meetings, so was I.

    The medical establishment makes a fortune off us. Would you like to receive the checks that these docs make going to lecture. I just read on here that when you have an abortion you might get Fibro ... that would be a cause. Really grasping arn't they. I have read on here that rape and violation has caused Fibro... Digging I tell you..... if about 85% of the women in the U.S. have had some sort of terror sexually in their lives then ok, I guess we would fit in.

    There are several syndromes in our chromosomes from which we have received brain compartments that are the wrong size, kidney tubes that don't function properly and liver proteases that don't make themselves. One of these is a hypercalcium which would kill an infant that has it, but would create a life time of horrors for someone who has a microdeletion. Between phosphorus and calcium your kidney and the passage into and out of your cells is not functioning and it puts major major stress on your adrenal glands.

    And, guess what.... so does any stress like an abortion, violation, car accident, having a baby, bacterial pneumonia, fighting a war, killing someone in that war, strep throat , divorce or anything like the many Herpes Viruses that they find abundant in our systems.

    Its not about a Lyme.... that little tic is just an instrument to stress out the body. In the beginning CFIDS was supposed to be because of the Epstein Bar..... OK, fine. Now they find as many as 37 more live bacteria and virus in a Cifds patient compared to ordinary people.

    If I had to say there would be just one thing that would stop the madness we go through daily, it would be with a doctor that would fix all the hormones that are broken from the birth defect we were given, especially the adrenals. Our thyroids would function correctly, our female hormones work as they should and our central nervous system corrected.

    Sounds like that doc could only be God. Treat each symptom like is has a big title and not all those little names. Forget Lyme, Cfids,Fibro,Lupus,Bipolar,MS, ..... its all one underlying factor and depends on which amino acids your mom and dad had and passed onto you as to which ones you get "labeled with." Each body is different.

    My vote goes to Dr. Marshall who believes in fixing the Th1. If I could afford it, I would be right there in line for the treatments.
    Glyconutrients that keep bacteria from sticking to the cells. That will help your future. Making sure you have enough magnesium and malate in your system and stop trying to absorb phosphorus and calcium.... your muscles will change.

    Attack each symptom as though it was individual issue and stop looking for a "label." If you are not already in chat with us, come in, we share a lot of helpful hints that stop some of these symptoms from happening.

    Its all about money to them !

    I wish you well, will pray for you. Sincerely, Hopabout
    [This Message was Edited on 03/01/2009]
  5. Nanie46

    Nanie46 Moderator


    I can understand your confusion. I had a fibro diagnosis for 21 years. After reading a post on this board I started researching lyme 5 months ago.

    I was never satisfied with having a fibro diagnosis and not knowing what caused it. It only made sense to me that something did, and most likely an infectious disease in my case. For many years I thought it was purely viral. For me it all started with an "off-season flu-like illness".

    Lyme is known as the new great imitator. It is a bacterial infection. Different people can have different sets of symptoms because the possible symptoms are many.

    Yes, lyme can make parts of your body shake, jerk etc. Some people end up with a MS or Parkinsons diagnosis when it is lyme.

    My best advice is to do some research yourself and also post questions on our lyme board and because it is a very active board.

    A lyme screen/titer is not even recommended by lyme experts. A western blot through Igenex lab in CA is recommended.

    If you read the literature you will see that there are certain species specific bands that, if they are present, indicate lyme. That is because the Borrelia bacteria is the only bacteria that would cause the human body to make that antibody.

    A LLMD would look at your history, symptoms and your labs to determine if you have lyme.

    Many people with lyme have coinfections that must be addressed also.

    Many people who have lyme got well with treatment even though their lab tests for lyme were negative. There is no test that can solely be used to exclude or include lyme because it is a clinical diagnosis (history, symptoms, labs).

    There are also thousands of people with chronic lyme...just go to One of the biggest reasons people have chronic lyme is because it took so many years to discover that the cause of their symptoms is lyme. Another reason is inadequate treatment with only a few weeks of antibiotics.

    Dr's in general do not know how to recognize lyme unless it is fresh, with a bullseye rash. They also do not understand how to test, and interpret a western blot, and why that test needs to be done at Igenex lab.

    It is all very complicated. I really suggest you read as much as you can.

    Here are some papers/articles you might want to read:

    Post your questions on those lyme boards. You will get replies.