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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme Dot Assay question, appreciate help

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Author Topic: Lyme Dot Assay question, appreciate help
ivebeentricked
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I had a positive Bowen test for lyme and babs, but no matter what anyone says, I do not trust their test yet, I am not claiming they are definately unreliable, but I don't think that anyone should be claiming they are definately reliable either...anyway

I had a western blot through igenex that came back neg on the IgG and only a few equiv bands on the IgM

two weeks ago I sent in a LDA test and today my doc called and said that there was a positive catch on the second of the three samples I sent in. I guess they are now doing a reverse western blot and will finish with a PCR after that. Does anyone know how accurate the LDA test is? Or how long the next step will take?

I am desperate to know if I am taking all of these meds in vain, I really want to believe without a shadow of a doubt that I do have lyme so I will have faith in my treatment. Not that I want lyme, but I am sick with something and am desperate to know what. How would some of you view a positive catch on the LDA? Any response would be appreciated. Thanks

-C


Posts: 99 | From California | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Tincup
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Hey there tricked..

Sorry to say....

Sounds like a more cut and dry disease would be better for you to deal with.. but you may have to get use to the fact that Lyme and coinfections MAY be your problem and you will just have to learn to deal with it.

You seem to require or desire all positive tests in a world where that just ain't gonna happen. Having it spelled out in black and white isn't the norm around here unfortunately.

Wish I had better news for you.. but no use beating around the bush.

You said...

"How would some of you view a positive catch on the LDA?"

Well.... I'd view it the same way I'd view a positive catch on a pregnancy test.

I don't figure I could be a "little bit pregnant".

------------------
If you get the choice to sit it out or dance...



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ivebeentricked
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I

[This message has been edited by ivebeentricked (edited 27 May 2005).]


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ivebeentricked
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I think a more cut and dry disease would be easier for anyone to deal with personally. And in reality, I am dealing with the fact that lyme and coinfections may be what is wrong. I am almost positive that that is exactly what my problem is, or at least part of the problem.

What I was asking for was if anyone could give me some insight on the Lyme Dot Assay. I know that no lyme test is fullproof and I want to know more about the one I just took. I am only looking for as much peace of mind as I can get considering the circumstances. And I am pretty sure that the LDA is not the same as a urine test for pregnancy because ( I really could be wrong and sorry if I am) if a pregnant woman were to take three urine tests for pregnancy, wouldn't they all three come back positive? If you were a woman and took three urine tests and only one came back positive, wouldn't you question the results? I sent in three urine samples and only one showed a response, and now they are testing what they found further.


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Tincup
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Back at ya tricked...

Actually, I was using the pregnancy test as an example. Sorry it was not as technical of an answer as could have been provided.

This is the way I see it.

If you have a bucket of urine.. and you dip into it and pull out a cap full to test.. the little amount you captured may not contain the substances needed to be picked up on the tests.

Kinda like when you are in a boat in a lake. If you stick a dip net in the water and pull up nothing.. that doesn't mean there are no fish in the lake... it simply means you didn't "catch" one that particular time.

If I remember right.. the urine test has three samples total. If one sample was positive.. and the other two weren't.. my thought would be directed to the fish story above.

If you are in the boat and do pull up a fish in the net.. it is a positive "catch".

I would expect the same thing actually if.. like in your example about the pregnancy tests.

If the 2 tests were negative but one was positive, it would indicate to me there was a muffin in the oven. Same principle in my mind.. but I could be wrong and sorry if I am.

Keep in mind.. even the CDC insists Lyme disease is a "clinical diagnosis" and negative tests are NOT to be used to rule out Lyme. Also.. according to ILADS... up to 90 percent of the people with Lyme are missed using the standard testing procedures.

Then we have STARI. Another nightmare when depending on tests to be positive.

This may help explain some things. Hope it helps!

If you can.. perhaps use the symptom list and the fact you are or aren't herxing on meds as another piece of the puzzle... as well as history of exposure and eliminating other possibilities.


STARI- THE OTHER LYME DISEASE


Master's Disease (aka STARI) was described in the early 1990's by Dr. Ed Masters of
Cape Girardeau, MO, when a number of people were bitten by lone star ticks and
developed Lyme disease symptoms. Many patients had a classic rash, nearly identical to the one described in people infected with the more well known strain of Lyme, however, the standard Lyme disease tests were not able to detect evidence of the infection in humans.

Recently DNA evidence of a strain of spirochete similar to the one that causes Lyme disease was detected in lone star ticks collected from nine different states, according to the US Army Center for Health Promotion and Preventive Medicine in Aberdeen, MD.

Borrelia lonestari, or STARI, the nick name used to describe this strain, was also
detected in the blood of white tail deer, in Sika deer skin samples, and in ticks removed
from wild raccoons. In 2004, visualization of live lonestari spirochetes were reported for the first time by researchers at the University of Georgia using dark field microscopy.

According to the CDC, a skin biopsy from a rash resembling the one that can appear in
Lyme disease patients was tested for the Borrelia lonestari. The patient reportedly had exposure to ticks in Maryland and North Carolina. The biopsy of the Lyme-like rash,
along with the tick that was removed from the patient, both showed evidence of the
lonestari strain. Standard blood tests for Lyme disease again failed to detect the presence of infection from this strain of Lyme disease.

People who have been told they do not have Lyme disease and/or who were denied
treatment based on negative blood tests should be re-evaluated by an experienced
physician if they remain ill, have fluctuating symptoms, or developed additional
symptoms. Anyone who has been denied treatment because the tick that bit them was
not a ``deer tick'' may want to take a closer look for the source of any ongoing or
worsening symptoms they may be experiencing.

Lone star ticks are able to transmit STARI to humans, as well as a number of other tick
borne diseases, such as Erhlichiosis (various strains), Rocky Mountain Spotted Fever, Tularemia (rabbit fever), and possibly additional, yet to be discovered, bacteria and viruses. Some of these infections can become chronic or fatal if not promptly or properly treated.

Lone star ticks, Amblyomma americanum, have been found in approximately half of the
states in the US. They have also been collected from migrating birds returning to Canada from southern locations. The ticks current known range in the US extends from Texas to Oklahoma, eastward towards the Atlantic coast, and northward to Maine. These ticks are extremely aggressive and actively search for blood meals. Residents from areas with high tick populations have reported removing over 100 of these ticks after a single outing.

Adult lone star ticks are larger than deer ticks, however, the nymph stage ticks can be as small as the period at the end of this sentence. A light colored patch, or star, is displayed on the back of adult female ticks, giving the tick their common name.

Ticks infected with STARI have been found just outside major city limits, posing risks to rural residents and city dwellers alike. Cardinals, wrens, sparrows, woodpeckers, brown thrashers, wild turkeys, bobwhite quails, and other birds are known to transport ticks from site to site. Raccoons, opossum, fox, squirrels, rabbits, mice, and deer are also hosts to this species of tick and provide necessary blood meals during their various stages of growth.

People infected with STARI may develop the rash that may also be seen in
approximately 50 percent of the patients who have the more well known strain of Lyme
disease. Other STARI symptoms can include fatigue, headaches, possible fever, muscle
aches, stiff neck, and joint pains. Untreated or under treated STARI has not yet been documented by the CDC to cause the same debilitating effects found in chronic Lyme
disease patients with the similar strain, however, research is ongoing and by no means,
complete. The International Lyme and Associated Disease Society (ILADS), has noted in the past, ``surveillance studies show that these patients [seronegative] may have a similar risk of developing persistent, recurrent, and refractory Lyme disease compared with the seropositive population.''

The CDC has recently been requesting samples of blood, urine, and skin biopsies from
suspected STARI patients in order to study this specific strain. Unfortunately, the current standard Lyme disease tests on the market were not developed to detect evidence of infection from a variety of strains of spirochetes found in ticks. As experienced
physicians know, these tests are very limited in their ability to aid in a proper clinical diagnosis of tick borne diseases. The discovery of this specific strain of Lyme may help explain why ILADS states that up to 90 percent of people with Lyme disease are being missed using the current two-tier testing procedures recommended by the Centers for Disease Control and Territorial Public Health Laboratory Directors and approved by the Food and Drug Administration.
According to Dr. Nick Harris, the Western Blot and PCR Lyme tests developed for use at
IGeneX Lab in California are broad enough to be able to detect various Borrelia strains
across the US, rather than just one single strain. "IGeneX tests are sensitive to the
lonestari variety of Borrelia, as well as burgdorferi,'' explains Harris. Patients with
various strains of Lyme have been detected in a number of states. IGeneX Lab offers
testing for other tick borne infections such as Babesiosis, Erhlichiosis, and Bartonella.

Lyme disease is the fastest growing infectious disease in the nation. The CDC and state health departments admit considerable underreporting of Lyme disease, with as many as 7-12 cases being missed for each one reported in some states.
A knowledgeable doctor, use of a high quality lab for testing, and proper tick borne disease diagnosis and treatment would be especially important to people in endemic
areas who continue to have fluctuating or relapsing symptoms and/or have developed late
stage neurological, arthritic, psychological, or other related Lyme disease symptoms.

Untreated or improperly treated Lyme disease (Borrelia burgdorferi) can become a
devastating chronic illness that can severely affect individuals, as well as entire families.

Late stage or chronic Lyme disease symptoms can mimic other conditions such as
Parkinson's, Alzheimers, MS, Lou Gehrigs (ALS), depression, arthritis, Scleroderma,
Lupus, heart problems, chronic fatigue syndrome, Fibromyalgia, ADD, panic attacks,
pain syndromes, thyroid disorders, or other conditions.

Although no official treatment protocol has yet been standardized for this specific strain of Borrelia, antibiotics normally prescribed for acute or chronic Lyme disease have been provided to patients suspected of having STARI, and the patients have improved.


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ivebeentricked
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Thanks for the resonse again, I see what you mean about the bucket of urine. Anyway, that whole stari thing sounds as awfull as lyme, maybe even worse. Thanks again, I'll just keep my fingers crossed.

The other reason though that I really want a positive test is then I would feel more justified in going after my insurance to pay for some of my meds. Anyway, I'll just keep on keeping on for the time being.


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