Any testing available to lead to a Dx?

Discussion in 'Fibromyalgia Main Forum' started by anchor, Oct 26, 2012.

  1. anchor

    anchor Member


    Is there a difinitive test for ME that can lead to an actual diagnosis?

    I suffer from FM (with a Dx) and Migraines (with a Dx) and newly ill with Guillain-Barre (with a Dx).

    I have always suspected for the ten years I have had FMS that I also have ME (aka CFS, right?).

    Does adding this diagnosis help my case toward LT Disability?

    I have all the Sx for Lyme Disease as well - I get there's overlap of these others and LD, I've just never wanted to know :\...Should I try for a LD test too - would this help me get LTD?

    I work as a kindergarten teacher. I know what it takes to do the job and I barely could do it before I developed GBS this summer.

    thank you, Lisa.

  2. Hi... I am so sorry to hear all that you are suffering with!
    Unfortunately there is no "definitive" test for ME/CFS as of yet. Usually it is a process of elimination (ruling out more treatable and understood diseases like MS, Lyme Disease, lupus, cancer, etc) and then, if you can get to a doc who specializes in ME/CFS, they have diagnostic tests that they do in their office after going over your history extensively. There is usually a very long and exhaustive questionnaire about symptoms, etc that you must fill out before you talk to the doctor. And all of that put together will help the specialist determine whether you have ME/CFS or not.

    Some docs do bloodwork and if it shows that many viruses are active (like Epstein-Barr, herpes viruses and some others I can't remember) they will diagnose ME/CFS (or CFIDS... same thing). That is how I got my initial diagnosis, but then went to a specialist to have the diagnosis confirmed.

    Hope that helps a little. But I would def go ahead and get the Lyme Disease test and any others that have similar symptoms first. Then if those are negative, look into the possibility of ME/CFS. Just be sure its a doc who is VERY knowledgable of ME/CFS, or better yet, a specialist.

    I'm glad you found this board, because there are so many folks here who can empathize with what you're going through and want to support and encourage you.... including me! I will praying that you get some answers soon!

    God bless you! Keep us posted!

    Blessings and Gentle Hugs,
  3. Nanie46

    Nanie46 Moderator


    It is possible that all of the diagnoses and their related symptoms that you already received have been caused by tick-borne diseases.

    You said you have all the Sx of Lyme Disease as well. Lyme and co-infections such as Bartonella, Babesia, Ehrlichia, etc can cause migraines, muscle pain and stiffness, horrible fatigue, paralysis and many other symptoms.

    Lyme testing is very unreliable, so you do not want to rely on a test for a diagnosis...although many Dr's mistakenly do this all the time. Lyme disease is a clinical diagnosis (based on history, symptoms, exam and labs).

    Many people who do have lyme disease, only ever had a negative lyme test, yet they are chronically infected.

    Unfortunately 99% of Dr's do not understand the complexity of Lyme and other tick-borne infections. Many of those Dr's rely on the ELISA test which misses most cases of Lyme disease. Most of those Dr's do not even believe that chronic lyme disease exists.

    Even the Lyme western blot misses many cases of Lyme disease. They are antibody tests and many very sick people are not making the antibodies and the tests are not very sensitive.

    It would be best to be evaluated by a Lyme literate MD if possible. You can find a LLMD by going to, click on flash discussion, sign up for free, click on Seeking a Doctor Board, click on Post New Topic and create a post asking for a LLMD in your state/area.

    I found clues to my Lyme disease by having an Igenex Western Blot IgG and IgM. Even though it was read as CDC Negative, several Lyme specific bands showed + and IND results. Then I found a LLMD.

    Other regular labs do not even test for those lyme specific bands.

    There is also a new Borrelia (Lyme) culture test that actually looks for the bacteria itself. It is supposed to be more accurate, although it is possible that the bacteria might not show up in the blood sample. Advanced Laboratory Services near Philadelphia, PA runs that test.

    Because many Dr's do not understand Lyme disease and do not even believe chronic lyme exists, it makes it difficult to get disability for lyme. Many people have gotten disability for the other diagnoses they received that were actually caused by Lyme.

    I recommend watching the documentary "Under Our Skin". You can watch online for free. Just google "under our skin hulu" and you should find the link to watch. is also a good resource with message boards for Lyme.

    Also great info at:
  4. anchor

    anchor Member

    thank you for the responses.

    is there still a lyme board here on prohealth? i thought i recall one from before..?

    thanks for the links. i will check it out.

  5. Nanie46

    Nanie46 Moderator

    The Lyme board and some other boards were removed recently to focus on ME/CFS and Fibromyalgia.

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