Finally found Dr to order Igenex lyme testing and recommended readings

Discussion in 'Fibromyalgia Main Forum' started by Nanie46, Dec 19, 2008.

  1. Nanie46

    Nanie46 Moderator


    I just got a call from Dr Dantini's office in Florida. He is my FM Dr who treats me with antivirals and did the viral testing and delayed food allergy testing. He has agreed to order the Igenex lyme testing for me.

    I tried to get a couple local Dr's here in PA to order it but they wouldn't. My PCP ordered the lyme screen last December, which was negative, so he would not go any further.

    I went to a Rheumatologist and she ordered a Western Blot through Lab Corp. They do not test all bands. It showed band 41. We all know that other labs are unreliable and incomplete.

    The only thing I will probably get out of the Lab Corp testing is a bill for over $900 that my insurance didn't cover.

    Who knows if my Igenex Western Blot will be positive or not, but at least I'll finally know. I plan to have it drawn on Monday and FedEx'd to Igenex. I called Igenex and they are open on Wed, Dec 24, so she said it was ok to have it drawn Monday.

    I have had classic FM symptoms for 22 years. Until recently I thought there is no way that I have Lyme disease. After reading alot of posts on this board from people just like me who tested positive I decided to do some research.

    I was astounded by the information that I read. I recommend that everyone with FM or CFS read Dr Burrascano's paper entitled "Advanced Topics in Lyme Disease-Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick-Borne Illnesses" Sept 2005.

    It can be found online at:

    I also recommend that everyone read "When to Suspect Lyme", an essay by Dr John D Bleiweiss. It can be found at various sites. You can Google the title and his name or go to:

    That article mentions alot of symptoms that my daughter and son-in-law recurrent sinus infections, twitching, heel pain, trigeminal nerve problems, headaches, bladder problems, carpal tunnel, prone to muscular injuries, history of Osgood-Schlatter's, disturbed sleep, etc.

    A few years ago my Son-in-law's Dr thought he had MS. He does not, but I read that Lyme can mimic MS.

    Even if you don't think you have lyme as a co-infection, I recommend that you read those 2 papers. The information may help someone you know.

    [This Message was Edited on 12/19/2008]
  2. Nanie46

    Nanie46 Moderator


    Thanks for your reply. I am glad that you found out what was wrong and are getting treatment. I am happy for you that you have good days and I hope you will have many more good days to come.

    I probably won't have my blood drawn now until Jan 5 due to a delay in getting the order and the holidays. Band 41 was present on the first western blot I had done through LabCorp. Since they don't test all bands and don't have the sensitivity that Igenex does, I know it is imperitive that I have it done again through Igenex.

    I am hopeful that it will show that I have something (lyme) that actually has a treatment, so I can have hope of getting better.
  3. kd25

    kd25 New Member

    I just got LabCorp test results in the mail. It lists different IgG and IgM numbers. Most say absent. IgG P41 and IgM P23 antibodies are present. Does that mean I have and or had lyme disease?
  4. Nanie46

    Nanie46 Moderator


    I believe the LabCorp interpretation follows the CDC guidelines which require 5 of the 10 IgG bands to be present and at least 2 of the IgM bands to be present. Technically your Western Blot would be considered negative.

    Dr Burrascano, a leading lyme expert, states that Lyme disease is a clinical diagnosis. That means it is based on history, symptoms, etc and sometimes supported by lab tests. Just because your western blot is negative does not mean you don't have lyme disease.

    LabCorp does not test all bands like Igenex does, and does not have the same sensitivitiy as Igenex. It would be a good idea to try to get an Igenex Western Blot. You can read alot on the Igenex website about what tests to order,etc. You just need a Dr to order it.

    They also require pre-payment and then you can try to turn it into your insurance co. Presently, the Complete lyme panel #6050 that they recommend starting with is $475.

    I also recommend reading some of the best lyme literature such as:

    Dr Burrascano's paper titled "Advanced topics in Lyme Disease- Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick-Borne Illnesses".......take a look at the symptom list in this is found at:

    also on the ILADS website....look for the "Evidence Based Guidelines for the Management of Lyme Disease." the essay "When to Suspect Lyme" by Dr John D can Google it to find it.

    Too bad lyme is not easier to diagnose, but it's just not black or white...that's why there are so many people who are just finally being diagnosed after many years, or have not been diagnosed at all.

    Hope this helps a little.....don't give up...keep looking for the answers.
  5. kd25

    kd25 New Member

    for the info. I will look into the igenex test, not sure I can afford it right now. How do I find a local LLMD?
  6. Nanie46

    Nanie46 Moderator


    One way you can try to find a LLMD is go to, click on flash discussions, then scroll down to the topic "find a Doctor" and click on that. If I remember correctly you have to register your info and then you can post your question. Someone will then send you a private email with names.
  7. kd25

    kd25 New Member

    I tried the website, and apparently they have no doctors local to me. I'm in SW Ohio.
  8. Nanie46

    Nanie46 Moderator


    That is too bad that you had no luck with the website. Did you post a message on the "seeking a Doctor" site asking for a LLMD in SW Ohio?

    It seems that LLMD's really are few and far between.
  9. Nanie46

    Nanie46 Moderator


    Thanks for the reply. I pay $321 per month just for my health insurance and it doesn't cover nearly as much as I think it should.

    I will now be having my blood drawn for the Igenex lyme testing on Monday, Jan 5, 2009. The order was delayed and I don't want the test to get screwed up over the holidays.
  10. aftermath

    aftermath New Member

    I saw Dr. Cameron (President of the ILADS--the LLMD association) earlier this year.

    He, too feels that Lyme is a clinical diagnosis and does not appear to put much stock into tests like IgeneX.
  11. victoria

    victoria New Member

    So glad you all are taking care to get tested. Just don't forget that ticks carry many other diseases, including mycoplasma - something that many here have found they have. You can have one or more of these other diseases with or without lyme... and of course when your immune system is depressed for any reason, viral &/or other bacterial infections can take the opportunity to flourish.

    On the Lyme board here, there's a sticky at the top that I started that gives the names/websites of many good places to check for reliable info...

    To find a good LLMD, one usually has to travel. I know my son's LLMD, who is 200 miles from our hometown, sees people not only from every state in the US, but from overseas as well. It saved us a LOT of money to just go directly to him despite the distance, as soon as I put 2 + 2 together (after our local internist agreed that there was something really wrong with him but he didn't know what, or even to what specialist to refer him)...

    it's estimated the 'average' lyme pt spends about $60K trying to find out what's wrong. The one good thing about getting tested is if you do come up + to the CDC's required 'tracking' bands, it's very obvious... but all the LLMDs AND the CDC agrees that it IS a clinical dx. IGenex has at best a 70% reliability, the best because they specialize in it; tests for other tickborn infections are very much less reliable, and again they remain totally a clinical dx. That's also why it pays in the long run to see someone who has seen a lot of cases.

    all the best,