Okay, I'm gearing up for Lyme testing

Discussion in 'Lyme Disease Archives' started by desertlass, Jan 6, 2008.

  1. desertlass

    desertlass New Member

    It's a new year, so time to reassess.

    I had a Quest Western Blot early last year. It showed that the IgG for band 41 is "reactive". Everything else is nonreactive, including the IgM bands.

    Does this seem like it's suspicious enough to have band 41 (are these the same bands used on the Igeneix blots? This is the band that shows up flagellons (correct word)?

    Anyway, do I order the test from Igenex and just have my doc sign a form?

    If I do this, is there any reason to seek out a LLMD, or can I just get my own doc to try me on doxy, no matter what the test says?

    Or can I use the herbals to see if they provoke a herx?

    I can get to Michigan fairly easily, where my grandmother with Lyme lives.

    Is this necessary, if I get a correct dx using my own doc? Or is this something that absolutely requires an LLMD specialist?

    I have read the website by Dr. Crist, Dr. Shoemaker, the paper by Dr. Harvey on ILAD, and have tried to look at Lymenet, although I find that site confusing, I have to admit.

    Any considerate comments would be appreciated.

    One detailed question: I understood from Lisa Petrison that doxy moves bacteria out of hiding, but doesn't kill it. If that is so, then why isn't doxy used as a challenge, before the blood draw for the Western blots?

    Thanks,
    Lisette
    Lyme Kindergarten
  2. mollystwin

    mollystwin New Member

    You can have your regular dr sign for the ignenex test, but I would advise having a llmd review the results if there are any bands showing IND or +. Regular doctors do not know how to interpret the results.

    I have an excellent doctor in Michigan. We are lucky in that we have several LLMDs in our state.

    Some doctors do prescribe doxy for a period then have you stop a week or so before taking the test. That way more antibodies may show up for a more accurate test.

    My doctor didn't do it and mine was still positive. My twin sister Molly had the 41 band show on the quest WB and her ingenex was positive. I'm betting you will be positive too. Showing anything on a quest test seems suspicious for lyme IMO.

    Good luck Lisette. Please keep us posted.

    dar
  3. munch1958

    munch1958 Member

    Anything showing at band 41 means either Lyme, syphilis or gum disease. Lots of posts on Lymenet about that. It's often the only band that shows up.

    Read Amy Tan's Lyme story. I'm pretty sure she has this one band only. It's for the tail of the bacteria.

    The only band on my Quest WB was 41. Igenex showed more bands. They report on 3 bands more than Quest. How silly is it that those were the 3 bands where I showed some positives? or INDs?
  4. desertlass

    desertlass New Member

    Still a little confused about the Doxy, though.

    But I will look that up for myself.

    Wow-- I guess I should have really moved on that band 41. I didn't realize it was significant to have only one show up. But after the reading-- erg. I know I don't have gum disease because I have been seeing my dentist regularly over the last couple of years.

    I don't think I have syphillis, so...

    I had an exercise therapist (for the FM) who worked out of my osteopath's office who told me about Amy Tan. I think this was back in 2002 maybe?

    She was trying to persuade me to get tested, because her own partner was dxed with FM, but it turned out to be Lyme. But she acted so "hush, hush" about it-- told me not to tell my doctor so she wouldn't get in trouble for trying to dx patients.

    I guess that's why I didn't consider it, until a few years later, when I came on Prohealth.

    It's probably because my grandmother has had it for so long, that I just couldn't face the idea. I had the erroneous idea that CFS was just some vague immune collapse caused by trauma (which I had had-- a severe injury), and that it would get fixed up with rest and vitamins.

    Well, spiraling downwards years later, here I am on the Lyme board.

    Life is just a bowl of ticks, eh?

    BTW, I was thinking of all of you guys a few months back when I was watching an old movie on AMC.

    It starred Errol Flynn as a doctor who goes out West to Montana and encounters Rocky Mountain Spotted Fever. He purposefully infects himself from a tick so that he can create a vaccine. I don't know if it's a true story, but it seemed like it was one of those "based on" movies.

    It seems like the Babesiosis is a smarter bacteria, if it doesn't kill its host. But the level of suffering seems to be similar.

    Well, Lyme needs to DIE whether I'm in the club or not.

    I'll be posting over here again, I'm sure.
    Lisette
  5. victoria

    victoria New Member

    look for Dr. Burrascano's 2005 guidelines, they're on ilads.org and elsewhere. If you've had it a long time, its unlikely doxy will be enough... flagyl is needed to break up the cyst form, in which they hide waiting for the 'right' time to break out again.

    Wow, some old movie about the Rocky Mtn Fever! - I sure hope they portrayed it as he ALREADY had a vaccine? Cuz one doesn't have much time after symptoms appear. (My daughter had it at 9 and almost died, was in ICU for 10 days, 2 IV abx and orals for a good while after. Thankfully she appears to have no after affects 15 years after.)

    Interestingly, there are more cases reported in NC now than anywhere in the US...

    all the best,
    Victoria

  6. spacee

    spacee Member

    I can't think of his name,maybe one of the ones Victoria mentioned. Anyway, it seems to me that he thought any little bit of a positive was extremely signiticant and needed to be treated.

    You can find him by googling Boston Univeristy lyme.

    Spacee
  7. desertlass

    desertlass New Member

    I will be pursuing this, at my typical glacial pace.

    I will keep pursuing and posting.

    Thanks all-- you know where I'm at with all this, I'm sure.

    Trying to wrap my mind around the possibility, etc.

    It is bizarre to try to have faith in one's illness, as well as faith in anything else-- there's a point at which you just kind of have to go with what seems reasonable, even if not entirely provable.

    I just can't forget the dream that I had last fall where all these friends and family from all times in my history, were coming to tell me "you have Lyme Disease." or "It's Lyme."

    But, it's hard to tell this to anyone, as being my "reason" for looking into. But, because I have not once had any dream about my health-- not even acknowledgement that I am sick-- I feel that I should listen.

    Even if there is no "outside source" of this information, at least my subconscious may be trying to tell me to at least take some action.

    Thanks again.
    Hang in there, everyone,
    Lisette

    P.S. The old movie about Rocky Mt. fever is called "The Green Light". It isn't available on DVD. So, you can only catch it on old movie channels from time to time. The doctor apparently used the whole tick to make the serum, because there wasn't enough tick blood to create a vaccine. He infects himself, uses the serum, and is cured. Voila.