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Lyme Disease ForumsGeneral & SupportIgeneX test results - doctor says negative??
10/08/2011 01:25 PM
gatormama
Posts: 6
New Member

I have been battling strange symptoms for nearly a year and have even seen a LLMD. He said my IgeneX test results were negative and sent me on my way.

I recently asked for a copy of my test results, and I'm shocked that there are positive bands yet he wasn't concerned. I would love some input from those of you well-versed on the western blot test results.

IGM Test Results:

**39 kDa: IND

**41 kDa: +++

58 kDa: +

IGG Test Results:

**41 kDa: ++

45 kDa: +

I made an appointment to see a new LLMD but cannot get in until December. I have a feeling these results mean I'm positive and I hate doing nothing until December. I feel so dizzy that I can barely drive or walk.

Thanks for any help.

Reply

10/08/2011 02:31 PM  Top
waxby
waxbyPosts: 4128
VIP Member

~~~Hello gator, Welcome!

~~~Yes, Wrong Dr. and yes, you are positive for Lyme Complex.

~~~Ask this Dr if he would get you started on abx, despite his opinion, until you see new Dr.

``` ~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread ~~~waitin for a butterfly~~~under the moon~~~Lovey Dovey~~~Mitchell ```

~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
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10/08/2011 03:38 PM  Top
GWB
 
Posts: 798
Member

Yes, your test indicates that you are most likely positive for lyme. Did you get bit by a tick that you can recall? If so, when would that have been? Any rash of any kind show up after the bite?

Like waxby said, getting put on abx asap would be a good thing. Try to find a doctor who who Rx you some doxy until you see you LLMD.

Gary


10/08/2011 03:43 PM  Top
Bettyg
 
Posts: 26614
VIP Member
I'm an Advocate

gator, YOU'RE POSITIVE ALRIGHT!

you just will NOT BE COUNTED IN CDC'S LYME STATISTICS FOR YOUR STATE since you didn't have enough positives to meet cdc/idsa's criteria.

you said you have an llmd, but why not POST FOR LLMD IN YOUR STATE; see who else is there andMIGHT have any opening; who knows?

post in LLMD REQUEST FORUM; read directions in my brief welcome i sent you a few minutes ago in PRIVATE MESSAGES RIGHT SIDE.

******************************************************

the rest of info below is in LYME FACTS, DR. C'S WESTERN BLOT EXPLANATION; must more there; this is numbers only:

On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C.

The following is a brief explanation of the test results.

Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

23-25: Outer surface protein C (osp C).

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A).

34: Outer surface protein B (osp .

37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella.

This is the most common borreliosis antibody.

45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

58: Heat shock protein.

66: Heat shock protein.

This is the second most common borrelia antibody.

73: Heat shock protein.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi.

The committee proposed limiting the bands that could be reported in a Western Blot for diagnosis of Lyme disease. Out of a possible 25 bands, 10 specific bands were selected as being reportable.

An lgG Western Blot must have five or more of these bands: 18, 21,28, 30, 39, 41,,45, 58, 66 and 93 kDa.

An lgM Western Blot must have two or more

of the following three bands: 23, 39, 41.

[b]Conspicuously absent are the most important bands, 22, 23, 25, 31, and 34, which include OSPA, OSP-B and OSP-C antigens - the three most widely accepted and recognized Bb antigens.

These antigens were the antigens chosen for human vaccine trials. In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

10/08/2011 04:50 PM  Top
gatormama
Posts: 6
New Member

Betty,

I was afraid to hear you say that , but thamk you for your reply. i actually posted for doctors in my state previously, and there was only one semi-specialist in lyme in my state, and he also has a month or so wait.

I am hoping that I might be able to get treatment before my appointment since I have the test results.


10/08/2011 05:40 PM  Top
Jensen16
 
Posts: 747
Member

It doesn't sound like your first LLMD was a very good LLMD....

I think Betty is right, you are +.

What??

10/08/2011 05:41 PM  Top
Jensen16
 
Posts: 747
Member

gatormama,

Also be sure to check for co-infections like Babesia, Bartonella, Erlichia.

What??

10/08/2011 05:44 PM  Top
gatormama
Posts: 6
New Member

This doctor definitely wasted precious time of mine, but I do think I remember him testing for co-infections. I just feel so hopeless.

10/09/2011 02:31 AM  Top
Bettyg
 
Posts: 26614
VIP Member
I'm an Advocate

gator, yes, sorry to be the bearer of news, BUT NOW YOU CAN GOFORWARD with your results.

GET HARD COPIES OF ALL TESTINGS/LABS DONE; file them away in a safe place.

now you can start reading using myWELCOME LETTER at top of support and print off what i recommend. then in 1 monthyou'll be more familiar with the medical terminology, etc.

perhaps you personal dr. can get youstarted on antibiotics until you get can get intothe llmd.

check outthe dosages/meds for adults/kids link in mywelcome letter posted bydr. burrascano, our llmd guru!

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

10/09/2011 09:26 AM  Top
SVH
 
Posts: 12
New Member



Post edited by: SVH, at: 10/10/2011 04:46 PM

Previous discussions I participated in:
Babesia testing
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