Discussion in 'Fibromyalgia Main Forum' started by rocky76, Jul 6, 2010.

  1. rocky76

    rocky76 Member

    YOU WROTE....

    The bacterial infection Borrelia burgdorferi infects the central nervous system and can commonly inflame any of the cranial nerves.

    When this happens to the trigeminal nerve, trigeminal neuralgia results.

    It can often be just one symptom of many, in people with chronic borrelia burgdorferi infections....lyme.

    Usually Dr's do not see the "big picture".

    Instead a person is diagnosed with many individual things like fatigue, fibromyalgia, arthritis, insomnia, headaches, trigeminal neuralgia, etc..when it is really a serious bacterial infection (Borrelia burgdorferi) causing all of these problems.

    please read the symptom list in this booklet...

    and the symptom list on pages 9-11 of the following paper...and coinfection symptom info on pages 22-27....

    I just wanted to say thank you for this info...I beg my Doctor for Lyme test
    But its like they think I'm nuts...
    Now I'm going to go in with all kinds of leverage...
    I always feel fantastic on antibiotics and she says that can't be...

    So I just want to say Thanks ....

    I have Trygeminal Neuralgia..TMJ...Diverticulitis...MS....Fibro...Thyroid Disease...
    Heck everytime I go to the Doc they put another label on me...

    So Thanks again...I always suspected lyme....

  2. Nanie46

    Nanie46 Moderator

    You are very welcome!

    I urge you to go to on flash discussion...sign up for on Medical Questions board and post a new topic to ask what ever you want and also read alot of posts.....there's soooo much to learn.

    You can also post on the Seeking a Doctor board there to find a Lyme literate MD. Other Dr's will not help you.

    Let me know if I can help you.

    check out....
  3. Nanie46

    Nanie46 Moderator

    Hi again,

    Get a western blot done through Igenex lab in CA.

    Request a free test kit. It comes with a prepaid fedex label.

    You need test #188 and #189, Western blot IgG and IgM.

    You need a Dr to order the test.

    The Dr's order form and info for the lab drawing the blood is included in the kit.

    Have blood drawn on a Monday or Tuesday morning. The lab will prepare the blood and should fedex it out the same day (check to make sure they will do this).

    It will arrive via 2 day fedex at Igenex BEFORE the weekend if you do this.

    It takes about 2 weeks to get results. Igenex will fax results to your Dr.

    If your Dr doesn't get results in 2 weeks, you can call Igenex to see if the results are in.

    Igenex will not give you the results but will then fax them to your Dr.

    Now this is important:...... Get a copy of your results immediately....even if/when your Dr tells you that it was NEGATIVE.

    Many, many people with lyme have an overall negative result, but still have a + or Indeterminate result on at least one Lyme specific are looking for clues.

    Igenex is the only lab that tests for 10 IgG and 10 IgM bands.

    Other typical labs will only test for 3 IgM bands, leaving out some VERY IMPORTANT LYME SPECIFIC BANDS.

    IgM typically reflects recent infection, however, with lyme, people with chronic, longstanding active infection very often show IgM bands more than IgG bands.

    Cost for the test is about $200. Igenex accepts Medicare. Otherwise, pay up front with check or credit card and later submit to insurance to see if they will pay.


    A negative Lyme test should NEVER rule out lyme because even though the best lab, there are many reasons why a person may test negative....

    Lyme is a clinical diagnosis based on history, symptoms and exam, NOT a lab test.

    Most Dr's do not understand this and mistakenly rule out lyme with a negative test.

    Since typical lyme testing in very unreliable, that means that many, many people who actually have lyme are testing negative and are told they do not have lyme.

    So, my advice to you is this...

    If you can get the Igenex western blot through your regular Dr, go ahead.

    In the meantime, find a Lyme literate MD like I mentioned above and make an can take awhile to get in for an appt since there are not alot of LLMD's.

    You need a very good eval for Lyme and common coinfections like Babesia, Bartonella, Ehrlichia, etc.

    Then take your test results with you if you had the test.

    If you did not have the test, the LLMD will do it and order other labs also.

    Don't waste too much time on your regular Dr...sadly, they are uneducated about chronic lyme and how to recognize, diagnose and treat it.

    It is a huge clue that you feel fantastic on antibiotics.

    All of the diagnoses that you mentioned can be symptoms actually caused by a chronic Borrelia burgdorferi infection.

    Here is a link to a great presentation about Lyme. Scroll to pages 48-50 to compare Lyme vs MS....,_LIA.pdf

    Here is info regarding why you need an ILADS educated LLMD:

    [This Message was Edited on 07/07/2010]
  4. victoria

    victoria New Member

    I agree it is an indication you have some kind of infection since you feel better on abx.

    The thing to remember is that, if you have Lyme or similar infection, it can be what many LLMDs call a 'honeymoon' effect - the abx is suppressing the bacteria enough to feel better, but ultimately it will prevail as it's not a high enough dose to actually kill it.

    If one has Lyme or similar infection but don't take a high enough dose to cause the jarisch-herxheimer effect, you won't get better over time.

    Some say they didn't have to herx to get better, but LLMDs don't agree, given the science of how Lyme and other stealth bacteria work...

  5. rocky76

    rocky76 Member

    I'm down with the flu....

    Bad headache and vomiting...

    So please don't delete any of your post...

    I need to copy all of them...

    Take to Doctor...

    Its boiling hot in my office so I will catch you guys tomorrow...


  6. Theresa

    Theresa New Member

    Hi Nanie,
    Thanks for all of the information you have provided re: the Lyme and Fibromyalgia link. I recently went to see Dr. Bhakta in Orange County, CA. who was recommneded by Richvank. I just had the Igenex Lyme test done and got my results back. According to the Igenex standards they are positive:
    Western Blot
    18 -
    22 -
    23-25 IND
    28 +
    30 -
    31 IND
    34 +++
    39 -
    41 +++
    45 -
    58 +
    66 +
    73 -
    83-93 -

    My question is, what is the point of the 188 and 189 tests? It was going to be more expensive to test for anything else which is why this was the only one I had done.

    I'm still in shock and not completely convinced this is what's going on. The doctor also recommends testing for the XMRV virus.

    How are you doing on your treatment? Hope you are feeling better.

    Thanks, Theresa
  7. Nanie46

    Nanie46 Moderator

    Hi theresa,

    Thanks for the message! You are welcome for the lyme/FM info. I am glad that I could help you.

    Is this your IgG or IgM result?

    What is the result of the one you did not post (IgG or IgM)?

    It is very common for people with chronic lyme to have postive and IND bands on their IgM because the infection is active although it is longstanding.

    Regarding your results:

    IND results are significant, because as my LLMD told me, they are like a fingerprint, they may be light instead of dark, but it is still the same fingerprint.

    Band 23-25 is Outer surface protein C (specific only to Borrelia burgdorferi...lyme)

    Band 28 is also an outer surface protein specific to lyme

    Band 31 is Outer surface protein A, which is specific to lyme

    Band 34 is Outer surface protein B, which is specific to lyme.

    Band 41 is the flagella or tail of a bacteria

    Band 58 is a heat shock protein

    Band 66 is also a heat shock protein and the 2nd most common Borrelia antibody seen.

    You have a very significant test result!!!

    You have several results that are specific to lyme. In other words, you would not make these antibodies if you were not exposed to Borrelia burgdorferi.

    The point of test #188 and #189 (western blot IgG and IgM) is to look for clues...antibodies that you may be making as a result of exposure to lyme.

    It is great that you actually are producing some antibodies.

    Ironically, it is the patients who are the sickest that usually are not producing antibodies anymore....and then the Dr says, "your test was negative, you don't have lyme"....which is very wrong.

    Is this Dr a Lyme literate Dr who will treat you according to ILADS guidelines using long term combination antibiotic therapy?

    I am improving with treatment. It is a very long road back from many years of undiagnosed chronic infection that has completely infiltrated every body system.

    It is about quality of life, so I will continue treatment until my symptoms are gone.

    Most of us do not just have lyme. You may have some of the very common lyme-related coinfections like Babesia, Bartonella, Ehrlichia, etc.

    That is why you must see a LLMD to make sure he also evaluates you for those other infections, because they require different meds.

    You should start reading as much as you can about lyme...there is MUCH to learn.

    Here is where you can start..... has a great Medical Questions Board, Seeking a Doctor Board and other boards too.

  8. Theresa

    Theresa New Member

    Hi Nanie,
    The results I had posted were my IgM results. My IgG results are:
    18 +
    31 +++
    34 IND
    41 ++
    The rest of the bands were negative for my IgG results.

    In the last few months I have been having flare ups of my symptoms (traveling muscle pain, joint pain in hands, feet, hips, chronic sinusitis, neck and shoulder pain, pain in teeth) plus new symptoms such as cystitis, numb feet and hands and I'm also testing positive for Sjogrens disease. I've had a fibromyalgia diagnosis for 12 years but always suspected a chronic infection of some sort as the root cause. Also, I was tested for Lyme 12 years ago when I first started having symptoms but it was negative - not sure what test it was.

    Dr. Bhakta does treat Lyme and is familar with Dr. Burrascano and other experts. I assume she treats according to the ILADS guidelines but am not sure. I will ask to be tested for the coinfections as well.

    I am concerned because I don't tolerate antibiotics well. I recently had to take Cipro twice in the last few months and was in such pain. Previously when I took Zithromax, the 3rd day in I get short of breath, and rib pain. The doctor mentioned it could be a herx reaction because that is one of the antibiotics used to treat Lyme.

    In future, I will post anything related to this on the Lyme board. Thanks for the links to the lyme websites. I think I need to do some research.

    Again, thanks so much for sharing your experiences. I will keep in touch.
    Take care, Theresa
  9. Nanie46

    Nanie46 Moderator


    The symptoms you mentioned when you took antibiotics before do sound like a herx.

    Shortness of breath could indicate Babesia and rib pain could indicate Bartonella.

    Sometimes LLMD's start the meds slowly to help reduce the severity of the herxing, but it is usually going to happen with each change of antibiotics.

    You would benefit from going to on flash discussion.....sign up for on Medical Questions posts and post your questions. There are lots of intelligent people there to help support you and the board is very active.

    Your IgG also has some very positive results. I think you have found your answer.

    All the symptoms you mentioned can be due to lyme.

    You do need to find the coinfections though and treat those also. Please remember that testing for those coinfections, like lyme, is not that reliable. It is very possible to have Babesia etc and test negative. Lyme symtpoms will not improve much if coinfections are not treated.

    I'm glad you already have a Dr. I will look for any future posts from you on the lyme board. I hope to see you on where I am Dekrator48.

    Good luck!