Re: Interpreting lyme test results

[Guest guest]

P.S. I'd also be interested in hearing from lyme patients who've tried herbal

protocols vs.

(or in addition to) abx. Thanks! Glomer

>

> I received the Igenex lab report today, and (it looks like) I tested positive.

I will make an

> appointment with Dr. Metzger to discuss the results and treatment, but, in the

meantime,

> I'm wondering if anyone on this list who is experienced with/knowledgeable

about lyme

> can help me understand the basics of my results:

>

> IGENEX IGM Result: Positive

> CDC/NYS Result: Positive

> (four positive bands, including two with a double star; two indeterminate

double-starred

> bands)

>

>

> IGENEX IGG Result: Positive

> CDC/NYS Result: Negative

> (three positive bands, including two with a double star--and one of these is

listed +++;

> one indeterminate double-starred band)

>

> How do I interpret that last (negative) result in the face of the others? FYI,

if I do indeed

> have lyme, it is of the chronic variety, not from a recent/acute tick bite.

>

> Thanks so much any help anyone can provide,

>

> Glomer

>

[Guest guest]

glomer -- tomorrow, when i'm more awake (i hope) i'll be happy to give youmy take on your results and tell you about my experiences using herbs.hollisP.S. I'd also be interested in hearing from lyme patients who've tried herbal protocols vs. (or in addition to) abx. Thanks! Glomer > > I received the Igenex lab report today, and (it looks like) I tested positive. I will make an > appointment with Dr. Metzger to discuss the results and treatment, but, in the meantime, > I'm wondering if anyone on this list who is experienced with/knowledgeable about lyme > can help me understand the basics of my results: > > IGENEX IGM Result: Positive > CDC/NYS Result: Positive > (four positive bands, including two with a double star; two indeterminate double-starred > bands) > > > IGENEX IGG Result: Positive > CDC/NYS Result: Negative > (three positive bands, including two with a double star--and one of these is listed +++; > one indeterminate double-starred band) > > How do I interpret that last (negative) result in the face of the others? FYI, if I do indeed > have lyme, it is of the chronic variety, not from a recent/acute tick bite. > > Thanks so much any help anyone can provide, > > Glomer >

[Guest guest]

Thanks, Hollis! Sleep well!

Glomer

> >

> > I received the Igenex lab report today, and (it looks like) I tested

> > positive. I will make an appointment with Dr. Metzger to discuss the

> > results and treatment, but, in the

> meantime,

> > I'm wondering if anyone on this list who is experienced

> > with/knowledgeable about lyme can help me understand the basics of my

> > results:

> > IGENEX IGM Result: Positive CDC/NYS Result: Positive (four positive

> > bands, including two with a double star; two indeterminate

> > double-starred bands)

> >

> > IGENEX IGG Result: Positive CDC/NYS Result: Negative (three positive

> > bands, including two with a double star--and one of these is listed

> > +++; one indeterminate double-starred band)

> > How do I interpret that last (negative) result in the face of the

> > others? FYI, if I do indeed have lyme, it is of the chronic variety,

> > not from a recent/acute tick bite.

> > Thanks so much any help anyone can provide,

> > Glomer

>

> VulvarDisorders >

>

[Guest guest]

glomer,i don't know if i'm all that much more rested, but here goes:any way you slice it, you are VERY POSITIVE. remember, lyme diagnosis is ultimatelya clinical one, based on symptoms and history (of rash, possible exposure, etc.) butthe tests can aid in that determination -- kind of the icing on the cake --falsenegatives being much more of an issue than false positives (though they can exist).there's a lot of confusion about the difference between the igenex and cdc/ny statetesting results. i can't give you every technical detail (if you want quite a fewof them and also want to read an extremely well-research and written, probing,horrifying, depressing, and generally excellent book that, among other things,elucidates the geneses of these tests and the ramifications of them in diagnosing/not properly diagnosing people, i highly recommend pamela weintraub's brand new book, cure unknown: inside the lyme epidemic), but the bottom line is thatthe cdc tests were never intended to be for diagnosis, but only for surveillancetracking purposes. they don't include (partly for reasons of politics and greed, sadly)some of the most important of the dna bands that are lyme-specific. the igenexIgG and IgM tests, on the other hand, DO include these important bands and, therefore,provide more detailed and tailored information. so, the fact that you tested positivewith igenex for the IgM (indicating more recent infection, though supposedly often activated in chronic cases or, of course, if you're re-infected) and IgG (indicates past infection) BOTH would say, in my opinion, that you are definitely dealing withborreliosis infection. And the fact that your IgM cdc result was also positive makes it that much more emphatic. the negative on your cdc IgG test doesn't somehow undo the results of the other three and, in fact, many people who haveraging lyme symptoms clinically may only test positive by igenex's criteria in one category (the case for me -- my IgM is positive, IgG negative) or sometimesnot test positive at all. That's the problem with blood testing: the spirocyte is so ingenious in its ability to quickly evade the immune system by corkscrewing its way into collagenous tissues like ears, bladders, brains, tendons and ligaments, eye balls, etc. etc., by reverting to cyst form, and by hiding out inside componentsof the immune system itself that, often there's not enough concentration of activebacteria left in the blood to mount the antibody response necessary to give a test result. So, to me, the fact that you HAVE produced three positives out of four is pretty darn conclusive.About using herbs:I've been following the Buhner herbal protocol and have opted, at least for now(though i'm starting to reconsider a bit) not to use any antibiotics. My issues are,at this point, largely and seriously neuro-muscular, more than brain fog/cognitive(though i have my moments). In all honesty i can't say that i've sprung up frommy wheelchair and started running marathons. . . YET (it's been less than a yearthat i've been doing it), but then again i've been infected, most likely, since a classic bull's eye rash i developed (but whose significance i was clueless about,unfortunately, this being before Lyme was in the public consciousness) my first week of college in New England in 1973 -- so i have several decades' worth of accumulated illness and damage to contend with. Many people whose stories i'vefollowed on the yahoo Buhner Lyme support group have had very good success with the protocol -- some with it exclusively, some combining it with antibiotics. In somequite dramatic cases, people who had had terrible problems tolerating the drugsand/or not responding, switched to the herbs and have had tremendous improvements/healings. The thing that is becoming increasing clear to me is that, no matter whatapproach is taken -- herbs, drugs only, a combo, rifing, whatever -- it is absolutelycrucial that there is attention paid to serious detoxing, as well as excellent nutritionaland dietary support. When these organisms die, if the detox pathways are notopen, the neurotoxins released can really create serious issues.From everything i've heard, Dr. Metzger is quite knowledgeable about Lyme. I'llbe interested in hearing what she suggests for you.Oh -- if you don't already have the yahoo Buhner Protocol link and are interested, i'd be happy to post it for you.HollisI received the Igenex lab report today, and (it looks like) I tested positive. I will make an appointment with Dr. Metzger to discuss the results and treatment, but, in the meantime, I'm wondering if anyone on this list who is experienced with/knowledgeable about lyme can help me understand the basics of my results: IGENEX IGM Result: Positive CDC/NYS Result: Positive (four positive bands, including two with a double star; two indeterminate double-starred bands) IGENEX IGG Result: Positive CDC/NYS Result: Negative (three positive bands, including two with a double star--and one of these is listed +++; one indeterminate double-starred band) How do I interpret that last (negative) result in the face of the others? FYI, if I do indeed have lyme, it is of the chronic variety, not from a recent/acute tick bite. Thanks so much any help anyone can provide, Glomer

[Guest guest]

oh -- something i forgot to mention: apparently a few of the bands are so lyme-specificthat even if there isn't a positive or an indeterminate anywhere else to be found, a positivewith it will cinch a dignosis. i can't remember the number(s) off the top of my head, butpeople at lymnet could certainly tell you. (anyone on this list know?)i do know that i had at least two stars for the biggie diagnostic one. . . hollisI received the Igenex lab report today, and (it looks like) I tested positive. I will make an appointment with Dr. Metzger to discuss the results and treatment, but, in the meantime, I'm wondering if anyone on this list who is experienced with/knowledgeable about lyme can help me understand the basics of my results: IGENEX IGM Result: Positive CDC/NYS Result: Positive (four positive bands, including two with a double star; two indeterminate double-starred bands) IGENEX IGG Result: Positive CDC/NYS Result: Negative (three positive bands, including two with a double star--and one of these is listed +++; one indeterminate double-starred band) How do I interpret that last (negative) result in the face of the others? FYI, if I do indeed have lyme, it is of the chronic variety, not from a recent/acute tick bite. Thanks so much any help anyone can provide, Glomer

[Guest guest]

Hollis,

Thank you so, so much for your reply and all your insight!

I have really been freaking out about this. I'm going to see Dr. Metzger

tomorrow, but with

my long, difficult, and ongoing struggle with systemic yeast, I am inclined to

go the herbal

route for now and see if I get any relief. I am glad to hear that you are on the

path to

healing, and will hold good thoughts for your complete recovery!

A couple of months ago, I _may_ have found a tick on my scalp/in my hair, but

because of

the location, I never saw if a rash developed. A homeopath also suggested lyme

more

than 10 years ago, however, so I don't know if the infection is recent, chronic,

or both. My

main symptoms are chronic yeast, fatigue, difficulty concentrating (not good for

a PhD

student), occasional heart palpitations, and slow healing from a whiplash

injury. The

trouble is, I've also been diagnosed with severe allergies, gluten intolerance,

hypothyroid,

and insulin resistance, so I'm not sure what's what, if lyme is but one

constituent part of

my immune dysfunction, or if it underlies everything.

I ordered Buhner's book from Amazon and joined the yahoo group, but have had a

hard

time locating a simple online synopsis of the protocol--please send me your

link!

I will definitely let you know what Dr. M suggests.

Take care,

Glomer

>

> I received the Igenex lab report today, and (it looks like) I tested

> positive. I will make an

> appointment with Dr. Metzger to discuss the results and treatment, but,

> in the meantime,

> I'm wondering if anyone on this list who is experienced

> with/knowledgeable about lyme

> can help me understand the basics of my results:

>

> IGENEX IGM Result: Positive

> CDC/NYS Result: Positive

> (four positive bands, including two with a double star; two

> indeterminate double-starred

> bands)

>

> IGENEX IGG Result: Positive

> CDC/NYS Result: Negative

> (three positive bands, including two with a double star--and one of

> these is listed +++;

> one indeterminate double-starred band)

>

> How do I interpret that last (negative) result in the face of the

> others? FYI, if I do indeed

> have lyme, it is of the chronic variety, not from a recent/acute tick

> bite.

>

> Thanks so much any help anyone can provide,

>

> Glomer

>

[Guest guest]

glomer, you're very welcome. i'm far from the most knowledgeable about this, but it's amazing how much you can pick up in the way of information when you yourself get a positive diagnosis! for years i highly suspected that i was dealing with lyme, but seeing those positive bands staring at me in black and white were certainly motivating in finally doing something about it. i completely understand about the freak out factor. i think the way to give it a positive spin (or at least try!) is telling yourself that at least now you may well have a underlying root cause for all these disparate symptoms and that there are things you can do that can help. another book i would highly recommend -- also quite recent -- is The Lyme Disease Solution by B. Singleton, M.D., M.P.H., which lays out a whole coordinated integrative approach, using antibiotics judiciously, herbs (he says nice things about Buhner), diet, exercise, detoxing, emotional and spiritual support. about your maybe scalp tick bite: while the rash is confirmation of infection, the truth is that only a minority of people develop one, so its absence doesn't necessarily mean that you were not infected -- or reinfected. also, while the classic bull's eye rash is what everyone thinks of (and what i had on my leg way back when), it can take different forms that are far from bull's eye-ish in appearance. my link would have been the one to the group, so you've already got that. as far as a good synopsis goes, i think you'll find the book to be quite user friendly in spelling out the protocol. the first part of the book is a quite technical and extremely detailed discussion of the borrelia bacteria and how it operates and the rest gets into the nitty-gritty of the herbs. Buhner gives what he considers to be the core protocol and then a number of various other support herbs, depending on the symptom cluster. there 's even a nice outline of everything discussed in the last chapter for quick reference. oh -- i just thought of something else that could help if you haven't already found it: Buhner anwers questions submitted to him on the Planet Thrive site. Looking at those can be quite helpful. The link is: planetthrive.com and if you scroll down the pageyou'll see a blurb on Buhner and a link to his q & a page.hollis Hollis, Thank you so, so much for your reply and all your insight! I have really been freaking out about this. I'm going to see Dr. Metzger tomorrow, but with my long, difficult, and ongoing struggle with systemic yeast, I am inclined to go the herbal route for now and see if I get any relief. I am glad to hear that you are on the path to healing, and will hold good thoughts for your complete recovery! A couple of months ago, I _may_ have found a tick on my scalp/in my hair, but because of the location, I never saw if a rash developed. A homeopath also suggested lyme more than 10 years ago, however, so I don't know if the infection is recent, chronic, or both. My main symptoms are chronic yeast, fatigue, difficulty concentrating (not good for a PhD student), occasional heart palpitations, and slow healing from a whiplash injury. The trouble is, I've also been diagnosed with severe allergies, gluten intolerance, hypothyroid, and insulin resistance, so I'm not sure what's what, if lyme is but one constituent part of my immune dysfunction, or if it underlies everything. I ordered Buhner's book from Amazon and joined the yahoo group, but have had a hard time locating a simple online synopsis of the protocol--please send me your link! I will definitely let you know what Dr. M suggests. Take care, Glomer > > I received the Igenex lab report today, and (it looks like) I tested > positive. I will make an > appointment with Dr. Metzger to discuss the results and treatment, but, > in the meantime, > I'm wondering if anyone on this list who is experienced > with/knowledgeable about lyme > can help me understand the basics of my results: > > IGENEX IGM Result: Positive > CDC/NYS Result: Positive > (four positive bands, including two with a double star; two > indeterminate double-starred > bands) > > IGENEX IGG Result: Positive > CDC/NYS Result: Negative > (three positive bands, including two with a double star--and one of > these is listed +++; > one indeterminate double-starred band) > > How do I interpret that last (negative) result in the face of the > others? FYI, if I do indeed > have lyme, it is of the chronic variety, not from a recent/acute tick > bite. > > Thanks so much any help anyone can provide, > > Glomer >

[Guest guest]

Thanks so much, Hollis. I actually happened upon the planetthrive Q&A as a

result of a

google search--Buhner seems very knowledgeable and also reasonable (a rare

combination). I will check out The Lyme Disease Solution as well. I don't know

which/whose treatment model Dr. Metzger is working from, but some quick Internet

sleuthing suggests that she and her former partner Dr. Cook suspect a lyme-

endometriosis-vulvar pain connection, which certainly makes sense to me! It is

overwhelming to have yet another diagnosis of chronic disease, but if this is a

lynchpin to

my suffering and eventual cure, I'm certainly glad to have found out about it!

Thanks again,

Glomer

> > I received the Igenex lab report today, and (it looks like) I tested

> > positive. I will make an appointment with Dr. Metzger to discuss the

> > results and treatment, but, in the meantime, I'm wondering if anyone

> > on this list who is experienced with/knowledgeable about lyme can help

> > me understand the basics of my results:

> > IGENEX IGM Result: Positive CDC/NYS Result: Positive (four positive

> > bands, including two with a double star; two indeterminate

> > double-starred bands)

> > IGENEX IGG Result: Positive CDC/NYS Result: Negative (three positive

> > bands, including two with a double star--and one of these is listed

> > +++; one indeterminate double-starred band)

> > How do I interpret that last (negative) result in the face of the

> > others? FYI, if I do indeed have lyme, it is of the chronic variety,

> > not from a recent/acute tick bite.

> > Thanks so much any help anyone can provide,

> > Glomer

>