Igenex question for nanie46

Discussion in 'Lyme Disease Archives' started by kat0465, Jun 10, 2009.

  1. kat0465

    kat0465 New Member

    HI Nanie46,
    well my test finally came in today at my DR's office, but the receptionist said she hasent had time to look at it, but should call me tomorrow.

    my question is, if i ask them to Fax me a copy i can do that right?? i mean i paid for the dang test.

    No matter what it says i wan't to see it for myself.even tho i will still keep my appt with the llmd i will be seeing on the 30th, Even if she says it's negative.
    thanks, Kat
  2. Nanie46

    Nanie46 Moderator

    Hi kat,

    Yes, your Dr office must give you a copy (some charge for copying) of your test results if you request it.

    Igenex will not fax directly to patients, only to the ordering Dr.

    Remember that the neg/positive is only a reporting criteria, not for diagnosis....so don't even concern yourself if it says negative.

    My Igenex western blot was officially CDC neg and Igenex neg, but I had species specific bands present.

    Many, many people who really do have lyme are never diagnosed because 99% of Dr's see the "CDC negative" result and declare that the patient does not have lyme.

    They don't even know that lyme is never ruled out by just a negative lab test, or that it's really a clinical diagnosis.

    I'll wait for you to post your IgG and IgM band results.
  3. kat0465

    kat0465 New Member

    i'll post as soon as i can get them to fax me a copy, I'm sick to my stomach worrying about it. But no matter what the results are, im going for the LLMD Diagnosis.

    By the way, how are you doing?? have you felt any improvement? i know it's early in your treatment. they say you feel worse before you feel better, and i think thats what's scaring me.

    thanks again!!
  4. Nanie46

    Nanie46 Moderator

    Hi Kat,

    You're welcome!

    I am sleeping better which is very nice.

    I think the bioidentical hormones and the sublingual melatonin are responsible for that.

    My LLMD told me at my 4 month visit that it is usually at least 6-12 months before patients see any improvement in their pain.

    I am about to start taking Artemisinin, so I'm not sure how I'll feel on that. I hear that alot of people really herx from it....we'll see.

  5. kat0465

    kat0465 New Member

    Hi Nanie,
    Dr left me a message said my lyme was cdc& igenex Neg, also said there was no bands. i am still going to get them to fax me a copy, but can that be that there will be no bands show up & still have Lyme?

    im so confused at this point, i guess i just figured there would be at least something show up. i dont even want to tell my husband it was negative, i know he will poo poo the whole llmd idea.

    would you still go to an LLMD if you had no bands?
    thanks, Kat
  6. Nanie46

    Nanie46 Moderator

    Hi Kat,

    You are wise to get a copy of your test results ASAP.

    You can still have lyme and have no bands show up.

    Testing is not foolproof....if it were, many more people would be diagnosed.

    Sometimes a person's immune system is not making the antibodies anymore.

    Lyme is a clinical diagnosis. It is not based on a lab test.

    If I had a history and symptoms that sound suspicious for lyme, I would still see the LLMD.

    A good LLMD will do a thorough assessment and more testing, and will tell you if he thinks you have lyme and coinfections or not.

  7. bunnyfluff

    bunnyfluff Member

    Don't be too upset if you do not currently have any ++ bands- IND counts as a weak positive.

    My daughter's tests originally came back even CDC positive, and right now she is testing neg., although she is still very, very ill. She had the highest #'s my LLMD had ever seen in over 3000 patients he has treated.

    Lyme likes to hide out in tissue, and consume collagen, so don't be too stuck on it having to show up in great numbers in your blood on any given day.

    A good LLMD will help you with clinical symptoms, even the CDC says it is supposed to be Dx'd that way.

    Best of luck,
  8. kat0465

    kat0465 New Member

    i honestly am just tired and confused at this point, i tried to get my Dr's office to fax me my test. but after getting a very rude receptionist on the line, they wouldnt sent it to me.

    they are making me go up to the office & sign a paper & then pay for the copys, and i dont have a problem with paying, but the office is 80 miles one way, so this week ill have a 2oo mile drive to pick up my test & some bloodwork.

    it's almost like they don't want me to see the test.the message my Dr left for me was i am cdc & Igenex negative.so she said forget the Lyme. I love my DR she has helped me when no one else would or did.

    but im going for the second opinion, i just wan't to get better before it's too late to get better.ya know.

    thanks for your Post, i appreciate it

  9. Nanie46

    Nanie46 Moderator


    That is very frustrating, I'm sure, that you have to drive so far to get your test results.

    I would call back and ask them to fax the paper you need to sign because of the HIPPA laws, and you will fax it right back.

    After you fax it back, I would request that they fax you all the test results.

    How much are the copies? You could send the payment in the mail or ask for other options....I can't imagine it would be more than a few dollars.

  10. munch1958

    munch1958 Member

    You should be able to get a copy of the results by fax or mail. If for no other reason just so you can have a copy in your at home medical records file. Most doctors are willing to send the patient a copy of every test.

    This sounds very fishy to me. Please post your results when you get them. If you do go in person and there is something showing on the test you can then confront the doc so it may be a blessing in disguise to have to drive that far.

    My test results were Igenex negative and CDC negative. I had the Quest WB first but that came back with only one positive band or band 41. Then I had the Igenex WB while on Abx -- something like 9 days into treatment. I'm not what difference it would have made if I was off Abx.

    There seems to be a HUGE debate about what bands are significant too. I've gotten 95% better with Lyme treatment (as detailed in my profile.) I've had several tick bites yet my test results came back NEGATIVE. Given my history of exposure and hobbies it makes sense that it really is Lyme in my case.

    Reasons why the test can be negative:


    As it says in the movie "Under Our Skin"... even if you test negative that does not mean your Lyme disease is any less real. It still needs to be treated. See the interview with pathologist in the moview.

    If you have a history of tick bites and/or a rash it's almost certain that you have Lyme regardless of what the tests show. Nothing else causes the kind of rash that appears with this illness. The rash in and of itself is a hallmark sign. It would be like "being a little bit" pregnant.

    I'm not sure if I quit making antibodies a long time ago or maybe I never made them. I do have high AB titers to CPN and just got an equivical for mycoplasma pneumonia too. This is the typical Lyme pathogen soup.

    The Elisa test is 85% inaccurate. Many doctors will run the Elisa and think that's adequate because they have been misinformed. For info on the many problems with testing see:

    Be sure to read "How the test was spun"

  11. ChuckNBerkeley

    ChuckNBerkeley New Member

    Nothing pleases me more than blanket statements such as this; "If you have a history of tick bites and/or a rash it's almost certain that you have Lyme regardless of what the tests show. "


    "Lyme disease spirochete (LDS)"

    "Western Black-Legged Tick (WBLT). This tick is the primary vector of the spirochete to humans."

    "Lastly, we completed PCR testing of 5,431 WBLTs collected throughout Mendocino County for the presence the LDS. A total of 264 (4.9%) ticks contained LDS DNA."

    And why we Californians my be less likely to get Lyme even when bitten by a tick;

    "We hypothesize that the predominance of the novel LDS strain and the lack of two genotypes associated with severe disease on the East Coast, may contribute to the much lower incidence of LD among humans in California."

  12. ChuckNBerkeley

    ChuckNBerkeley New Member

    Focus on this part of my quote of munch1958; "tick bites and/or a rash". Now describe to me which part of "and/or" you do not understand in the context of my post.
  13. kat0465

    kat0465 New Member

    My DR's office help is a Joke!!! she's a great cfs/fibro/aids DR.but her staff sux with a capitol S

    she has had numerous complaints about them too, and your right my having to go there might be a blessing in disguise.i may not get to see her. but i see her for an appt in July and she is gonna get an earful.

    that woman was so mean & rude, it took all i had not to say some really ugly words.i wan't that test & a few others like you said if for no reason than to have them,we live on the gulf coast and are always running from storms.

    i wan't my records with me in case im displaced again.and i too think there's something fishy, cdc neg & Igenex neg dosen't always mean no Lyme. and i will definately post the results on here.

    Ohh and my cost for getting 12 months worth of Bloodwork, one mri, chest xrays,ekg's and the Lyme, will be about $50 so not only will i have to drive 2oo miles in Houston traffic to get it. i'll be broke after i do :(

    it's a shame good DR's are so hard to find, if it wasen't for her i'd tell em all to shove it where the sun don't shine!!

    Sorry.... Venting,lol.
    thanks for the website too!
    [This Message was Edited on 06/15/2009]
    [This Message was Edited on 06/15/2009]