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Author Topic: confused
cmiller
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I was diagnosed with lyme disease 2 weeks ago, and started oral antibiotics. But yesterday, my doctor called to tell me that a more conclusive test was negative. So, I stopped my antibiotics, but what about the way I feel, and the origional rash I had, should I call back and demand a retest?
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NCLymie
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Whay kind of test were you given? If it is just a simple Lyme Teeter, that is not good enough. Is your doctor LLMD - Lyme Literate? or just a regular physician.
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cmiller
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he's just a regular physician, and I was given a western blot test, after my lyme tider was positive.
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groovy2
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Hi cmiller
The lyme tests are wildily inaccurate--
as you can see because you have had
differnt results already
This is why lyme is dignosed by symptoms--
(clenical diagnosis)
Look on the newbie pages on this site-
there is much info
Dr Barricsco {not spelled right) on the
newbie pages has good info that seams
to be the standard--check out list
of symptoms-do you match them?
How long ago was rash --discribe better-
discribe symptoms you have now give
give details
--Jay---

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janet thomas
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The Western Blot is subject to interpretation. Get a copy of it and post it here, we'll help. THIS IS IMPORTANT.

LYME DISEASE IS A CLINICAL DIAGNOSIS and lab tests shopuld not be used to rule it out, your test may be positive if interpreted differently. Here's some info-

Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, and more...
Last updated November 4, 2003

Interpreting the IgG & IgM Western Blot For Lyme Disease


Melissa Kaplan

WORK IN PROGRESS!!!

The IgG and IgM Western Blot provides results in a way that lets us visualize the patient's antibodies. It is more sensitive and specific than the ELISA and EIA (that is, it is more likely to show positives where the ELISA/EIA showed negatives). The IgG and IgM WB should always be used when the Lyme IgG/IgM antibody serology has returned an equivocal or positive result.

If the patient is highly symptomatic of Lyme, there is actually no point in doing the ELISA or EIA serum tests, as they do not have the sensitivity or specificity of the Western Blot that is needed to have a prayer of detecting Borellia burgdorferi (Bb), the organism that causes Lyme disease.

In a sane world, wherein the CDC and AMA really did their jobs in protecting the public health and ensured the quick and proper diagnosis and treatment of patients infected with tick-borne infections, they would not bother with the ELISA and and similarly worthless tests and would, as you will read about below, pay attention to all the Bb specific WB bands when it came to Lyme testing. Alas, we live in this world, where, despite the publication of research from around the world, the CDC and AMA continue to ignore them, and recommend treatment protocols that result in undertreating active and latent or chronic infections, resulting in more people being sick and disabled by this disease.

Contrary to what many insurance companies believe, the IgG and IgM Western Blot for Lyme disease are not the same test. Some companies will deny one and pay the other, claiming they are the same test or duplicative of one another. IgG and IgM are two completely different antibodies.

IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved.

IgG antibodies are produced once an infection has been going on for a while, and may be present after the infection has been resolved. Generally speaking, the presence of IgG antibodies to an organism when accompanied by a negative IgM test for the same organism means that the person was exposed to that organism at one time and developed antibodies to it, but does not have a current active infection of that organism. When it comes to Borrelia burgdorferi (Bb), the organism responsible for Lyme disease, that is not necessarily the case.

To recap, depending on the numbers,

IgM is a sign of a current infection.
IgG is a sign of a current infection, or of a past exposure to or of a past infection by the organism.
Bb can hide in the brain and cerebral spinal fluid (CSF) andm by altering its surface proteins, can remain invisible to the immune system for a long period of time. Once the immune system figures out what it is and starts making antibodies to it, it shifts is surface proteins once again, fooling the body into thinking the infection is over.

Bb can also turn itself into undetectable cysts and various other forms (called L-forms) which also help it elude the immune system. If the immune system can't see it, the immune system can't make and, or only insufficient antibodies, which all contribute towards making the organism impossible to detect by any testing methodology, including WB. Thus, blood and urine tests for Bb can be negative, even if the patient is "challenged" by being given high dose injections of antibiotics to try to trigger a reaction from or partial die-off of Bb that will cause it to show up in the blood or urine.

When a false negative is returned on a blood sample, it is called seronegative. There are many reasons why a seronegative result may be obtained. A seronegative result does not mean the person does not have an active or latent Lyme infection. It just means that this particular test was negative. that is why all the symptoms presented by the patient must be taken into consideration when making a clinical diagnosis, and why other appropriate testing should be done to rule out other causes for the wide range of symptoms being presented by the patient.

As can be seen from the table below, The CDC's criteria for what constitutes a positive result is very conservative. As a result, it is believed by those who have been treating Lyme patients for years, and by those developing other, more sensitive tests, that the CDC criteria miss most cases of borreliosis and, as a result of that underreporting, grossly understate the incidence of Lyme in the United States.

IgG considered positive if at least IGenex: 2 @ bands present CDC: 5 # bands present
IgM considered positive if at least IGenex: 2 @ bands present CDC 2 #bands present

Band IgG
IgM


18 kDa
.#
p18 flagellin fragment
22 kDa Immunogenic integral membrane lipoproteins. Cross-reactive with other spirochetes/bacteria. Depending on source, may be specific for Bb or cross-reactive. [Coleman]
23-25 kDa @ # @ # OspC. 25 kDa is specific for Bb
28 kDa .# OspD, Oms28. Specific for Bb
30 kDa # OspA substrate binding protein
31 kDa @ @ OspA
34 kDa @ @ OspB. Specific for Bb
37 kDa . . p37, FlaA gene product. Specific for Bb
39 kDa @ # @ # BmpA. Specific for Bb
41 kDa
@ # @ # FlaB
45 kDa .# [Flisiak]; appears for HGE [Ravyn]
58 kDa #
66 kDa # p66 Oms66 Hsp outer/integral membrane protein
73 kDa .. ..
83 kDa . . p83 high molecular mass protein. Specific for Bb
93 kDa @ # # an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Specific for Bb

Abbreviations:
Bb Borrelia burgdorferi
Bmp Bacterial membrane protein
Fla Flagellin
HGE Human granulocytic ehrlichiosis
kDa kilodalton = molecular weight
Oms Outer membrane-spanning
Osp Outer surface proteins
p Protein

Limitations and Notes
The bands in the above table apply primarily to the U.S. species/subspecies of B. burgdorferi. For band information on European and other species, please see Art Doherty's And The Bands Played On.

Positive (+ or +/-) IgGresults on Bands 31 or 34 kDa may occur after vaccination in otherwise uninfected people.

IGenex considers the IgM equivocal if only one of the @ bands are present.

Band Markings
When reporting bands, the reporting laboratory marks each band with the following indicators of intensity:

- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)


--------------------------------------------------------------------------------

References

Art Doherty. And The Bands Played On

IGeneX, Inc. Lyme Disease Western Blot

Coleman JL, Benach JL. Characterization of antigenic determinants of Borrelia burgdorferi shared by other bacteria. J Infect Dis. 1992 Apr;165(4):658-66

Flisiak R, Wierzbicka I, Prokopowicz D. Western blot banding pattern in early Lyme borreliosis among patients from an endemic region of north-eastern Poland. Rocz Akad Med Bialymst. 1998;43:210-20.

Ravyn MD, Goodman JL, Kodner CB, Westad DK, Coleman LA, Engstrom SM, Nelson CM, Johnson RC. Immunodiagnosis of human granulocytic ehrlichiosis by using culture-derived human isolates. J Clin Microbiol. 1998 Jun;36(6):1480-8.

Tylewska-Wierzbanowska S, Chmielewski T. Limitation of serological testing for Lyme borreliosis: evaluation of ELISA and western blot in comparison with PCR and culture methods. Wien Klin Wochenschr. 2002 Jul 31;114(13-14):601-5


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Aniek
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I had many, many negative tests resulting in it taking 17 years for my Lyme to be diagnosed. A negative test never means you don't have Lyme.

There is another forum on here for people searching for doctors. I'd recommend posting in there for a doctor who really understands Lyme. If you had a rash and you have symptoms, you want to continue treatment.


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janet thomas
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I just noticed, you have a rash-take a photo with a ruler in the pic, save it.

Is it a bull's eye rash? That ALONE is diagnostic for Lyme.

You need to do some serious reading fast.

If it was a bull's eye rash I think you may reconsider stopping the antibiotics after you learn a bit, and checking with your doctor.
www.ilads.org
www.canlyme.com

Janet


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cmiller
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thank you for the information, my Igm was positive, while my Igg was negative. Some of my sympptoms are, sore jaw, stiff neck, enlarged lymphnodes, joint pain in my left elbow, achyness, extremely tired, fever, chills, that's just to name a few. My rash was behind my right knee, black in the middle, and redness around the outside, no bullseye. I've been treated with three different antibiotics, and my symptoms keep reoccurring. What do you think?
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Kara Tyson
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Get a copy of that test.


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Mo
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Hi -

If you read Dr B's Guidelines to Diagnosis and Treatment (found on the ILADS link above)

You will see the rash is absolutely diagnostic of the disease..that and/or symptoms means the disease is disseminated.

The guidelines also give you an idea of reccommended dosages and length of time, as well as an overview of possible tick-bourne co-infections, and a symptoms list.

You have a good chance of eradicating the illness with early, aggressive treatment..
I think it says minimun of six weeks with rash, longer with symptoms..plus you have to track synmptoms as you go and monitor for co-infections.

Best bet would be to get in with a Lyme Literate physician asap. and continue antibiotics until then. They know how to read and evaluate tests and symptoms combined.

You need to educate yourself because many MD's who do not specialize in Tick-bourne disease (members of ILADS do)..
many others do not have experience treating Lyme to efficacy, and later...various misdiagnosis can complicate the picture and delay treatment for the infection.

Good Luck with all,

Mo

[This message has been edited by Mo (edited 11 June 2005).]


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trueblue
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Hey cmiller! Haven't we met?

Stay on the antibiotics until you get to a Lyme Literate doctor. Please, you have a lot of symptoms similar to me when I first realized something was wrong.

It took me 10 years to get diagnosed. (I didn't have a postitive test until much later.)

And get a copy of the test, like Kara said.


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trailsgrl
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Dont stop those antibiotics! It is your best bet to regain health in a shorter period!

When was your rash?

You have classic symptoms for lyme and a classic place for a tick to lodge and create a that rash.

Even if you feel WORSE keep taking those antibiotics and keep researching. I know we must all sound like crazy loons to you to say that, but we have documented proof that there is lyme with negative testing and that stopping antibiotics too soon created extremely dificult strains to kill. If you get worse on ABX (antibioitcs) then you are killing the lyme disease and will eventually get better if you can keep it up!

Keep posting and researching. I am not a doctor, just someone who has been with lyme and treatments since 1991.

Trails


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