Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Aug 13, 2009.

  1. I see you post about having lyme, what were your symptoms?
  2. Nanie46

    Nanie46 Moderator


    Here is a quick rundown of what happened to me (different people have different courses of symptoms that can differ alot).....

    Late summer 1987 had a flu like illness with very, very sore throat.....told by Dr it was viral.

    Weeks later developed an ache at my right greater trochanter (where thigh bone meets hip) that lasted for many weeks.

    Weeks later developed throbbing joint pain in every single joint in my body that lasted for about 2 weeks.

    When that throbbing stopped, I was left with a fibromyalgia syndrome......all the muscle pain and stiffness...especially lower back and neck, all the tender points, fatigue, sleeping difficulty.

    Over the years, a long cascade of negative events in my body have just made it all worse. My insomnia became severe.

    In Feb 2008 I developed severe neck pain and stiffness...much more than I had ever had before.

    I also have many less noticable symptoms..... mild light and sound sensitivity, mild muscle twitches, headaches, pain around but not usually in my joints, floaters, forgetfulness, barin fog, tinnitus, mild tingling/pins and needles/stabbing pains, hot flashes, food sensitivities, stomach issues, cold intolerance, and itching.

    3 Dr's told me I did not have lyme based on a negative lab test.

    I did my own research and thank God I did. I was diagnosed with Lyme and coinfections in Feb 2009.

    I have talked to people with lyme and coinfections that have some of the same symptoms, but some of their symptoms are different.....could look like MS, RA, lupus, ADHD, Parkinson's, CFS, FMS, bipolar disorder, depression.

    My daughter has anxiety, depression, frequent sinus infections and sore throats and occasional swollen glands (bartonella), granuloma annulare, trigeminal neuralgia, migraines, and fatigue, among other symptoms...and she also has lyme and coinfections

    Lyme is a neurological illness, and you see neuro symptoms like twitching, headaches, nerve pain, and sometimes symptoms related to cranial nerve irritation such as bell's palsy, trigeminal neuralgia, vision problems, etc.

    Lyme presents is so many different ways. Some people just notice being dizzy or headaches, other people become disoriented, others have muscle tremors or spasms.....I could go on forever.

    Let me know if I can give you any more info.

    [This Message was Edited on 08/13/2009]
  3. thanks WOW it sounds so familiar, so it did take a long time to get diagnosed!? My dr did a lyme but who knows what lab. I see a neuro dr next mo and will mention it to her. Everything gets blamed on fibro, but I have too much pain in soo many places, stiffness, tremors, joint pain, muscle pain, no sleeping. The dr said I am a severe case but wonder if they aren't missing a part of the puzzle. thanks again. are you getting better since diagnosed and what treatment?
  4. Nanie46

    Nanie46 Moderator


    The piece of the puzzle they are missing is the CAUSE of your syndrome.

    They are giving your symptoms a name but saying they do not know what caused it.....that is a total copout.

    Everything has a cause.....and it will be up to you to find it.

    Don't expect any non-LLMD to know how to recognize and diagnose chronic lyme.

    They think they understand lyme but nothing is further from the truth.

    Lyme is a bacterial spirochete that is very complex. It is a neurological illness and can also affect every organ, every body system, every tissue.

    I would insist of a western blot IgG and IgM from Igenex lab in CA. Test #188 and #189.

    You can send for a free test kit with a prepaid fedex mailer.

    Then post your results on the Lyme board here and on

    When the official result is read as "CDC negative" or "Igenex negative", you should totally ignore that.

    The important part is the individual band results.

    Many, many people with lyme have never had a positive test....but they often have some lyme specific bands present.

    However, it is very important to note....and I cannot say this enough.....Lyme is NEVER ruled out by just a negative lab test.

    Testing methods are just not good enough to solely rely on them.

    LLMD's know that a Lyme diagnosis is based on history and symptoms.

    Do you herx on antibiotics?

    So far I am sleeping much better, having very few hot flashes and sweats and on a recent car trip, my neck was not nearly as stiff, sore and achey....usually the pain is nearly unbearable on car trips.

    If I can ever help you further, I would be willing to meet in a private chatroom.

    I also urge you to go to on flash discussion....sign up for free like you did here.....go to the Medical Questions board and post your questions.....there are many intelligent people there who will answer them for you.

    On it is requested that posts are broken up into paragraphs that are no longer than 1-2 sentences, with double spacing between paragraphs because so many people with lyme have trouble reading long paragraphs without spacing.

    I have been on different combos of antibiotics, plus bioidentical hormones and supplements.

    Remember, Dr's can call your symptoms whatever they want...FMS...CFS, etc, but they are not trying to find what caused it and that is what really matters.

    Borrelia burgdorferi (lyme) is a bacteria and can cause your symptoms.

    You are a severe case because they are not trying to treat the cause, they are only trying to medicate you to cover up your symptoms.

    It took 21 years for me to get a diagnosis and I am diagnosed only because of my own research and persistance.

    99% of Dr's really know next to nothing about lyme.
  5. gb66

    gb66 Well-Known Member

    I have a question for you. I had a website saved in a folder that you had reccommended in a previous post and my hard drive recently crashed. I lost all my folders and wonder if you could post it again. It's a really good definition of Lyme and how to test for and treat it. I just can't remember where I found it. Thanks so much for all your information. GB66
  6. Nanie46

    Nanie46 Moderator


    It was probably this one.....

    If that's not it, let me know.

    Also, lots of great info at:


    I can provide you with lots more if you want it.
  7. gb66

    gb66 Well-Known Member

    Thank you for the information. I'll check these out later on tonight. I'm having to replace lots of things that were lost when my hard drive crashed. I think it's time for a new laptop! It's the second time this has happened. GB66
  8. munch1958

    munch1958 Member

    In my profile there's a running diary of how I got diagnosed with Lyme, what treatments that I've done and what symptoms were improved in my case. I need to update it even tho it's crazy long already.

    Lots of things cause Fibro type pain but the biggest culprit is undiagnosed infections and the resulting hormone deficiencies. I do believe that these infections damage the hypothalamus causing horrendous pain, sleep issues, pituitary, thyroid and adrenal issues.

    I'm seeing a husband and wife team of doctors now. They've been looking into FM for 19 years. They have come to the same conclusion so it is very refreshing to find doctors who are on the same page.

    I hope you are able to find some answers in your case. Most neurologists don't know much about Lyme. I saw 4 different ones who looked at the EM rash on my leg after a camping trip. They didn't make the connection to Lyme disease because "we don't have ticks here". They said it was a spider bite. Even the pictures of tick bites online are mislabeled as spider bites on some popular dermatology web sites.

    No matter where you live it seems they claim we don't have ticks! Ticks are everywhere and loaded with nasty bacteria and even viruses. Why else is your pet's vet pushing those flea and tick collars or the once a month treatments?
  9. jole

    jole Member

    I'm severely allergic to antibiotics...nice, huh? What exactly could they do to help me? I found a doc who really thinks Lyme is what I have, but wouldn't look further into it. Since I can't travel very far, I'm not sure if I could make it to any LLMD's. Would it be even worth it for me since I can't take abx?
  10. Nanie46

    Nanie46 Moderator


    I would urge you to go to on flash discussion....sign up for on Medical Questions board.......create a post asking this question........

    there are alot of experienced, intelligent people there with lyme and associated coinfections who can give you more info....especially about naturopathic treatments.

    You can also post on their Seeking a Doctor board for a Lyme literate Naturopathic Dr in your state and see what responses you get.

    All the best to you.....I'm dekrator48 on