Well after my Western band came back positive and bands 23 and 41 were positive too, I was sent to a Infectious doctor.
He felt I did not have Lyme and we did more specific testing through Igenex to see if in fact I did or did not have Lyme.
Got the results today from the DNA PCR blood test and Lyme in not detectable so the doctor said that he was right in that I DO NOT HAVE LYME.
I think this is great news but wanted the input of the very helpful and supportive folks here.
So, what do you make of this? Lyme or no Lyme?
Posted by Keebler (Member # 12673) on :
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What lab was used for the PCR testing?
What time of day and the day of the week was your sample taken? (Question is asked as if it sat on a hot truck over the weekend, that would not be great.)
It's very hard to answer as I don't know where you are in the research.
If you've not read much yet, we can post some links for you but as you have 69 posts, my guess is you've seen all that and need excerpts or specific articles.
I'll come back later and look up your history as some background information can help in the formation of answers.
I do think it will come back down to if you can see a LLMD. I would not trust the recent test to be the end-all be-all where a life is concerned, especially considering your previous tests.
There are authors and researcher who have said the same thing. It's just very exhausting to hunt all that down - so take a breath as you regroup and good advice is sure to come.
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Posted by lou (Member # 81) on :
Lyme is tissue trophic and not in the blood enough to ensure that a pcr will find it. Plus, not all borrelia stains/species will be found by such a test, just the kind that it was designed to find.
And if it is just there in low levels, the sample used to test might not contain it, but another one might. Think the pcr when positive is significant, but when negative is not proof that you don't have it. Might have a dozen pcrs before one will turn up positive and then the average ID doc will say it is a false positive.
Unfortunately, this is one of the reasons why it is a clinical diagnosis.
Posted by METALLlC BLUE (Member # 6628) on :
The DNA PCR isn't a reliable test. It's highly specific and accurate when it does find something, but finding something is very difficult, because ten samples can be negative, and the 11th can be positive. It's much like a blood smear in that respect. Borrelia Burgdorferi is not distributed homogeneously through the blood.
A negative test through Igenex, or any other test doesn't mean much and Lyme Disease is a clinical diagnosis. A patients history, symptoms, and the experience of the doctor are more valuable in helping to form a diagnosis of Lyme Disease. False negatives are very common. False positives are extremely rare.
Posted by cactus (Member # 7347) on :
Many years ago, a PCR test for Lyme was explained to me this way:
Think of a swimming pool.
Throw in a bucket of ping pong balls.
Now use your net and swipe through the water.
When you bring up your net, does it have ping pong balls in it?
If yes, then there are ping pong balls in the pool.
If no, does that mean there are no ping pong balls in the pool? No. There were just no ping pong balls in that sample.
So... Congratulations, there was no Bb DNA in the sample they took!
If you have Lyme specific bands on a Western Blot, then you need to see an LLMD!
Posted by cactus (Member # 7347) on :
I just re-read my response, and thought it sounded harsh. Not how I intended it.
This may help explain better than the ping pong ball explanation, from Dr B's 2005 guidelines, diagnostic hints:
"PCR tests are now available, and although they are very specific,
sensitivity remains poor, possibly less than 30%. This is because
Bb causes a deep tissue infection and is only transiently found in
body humors. Therefore, just as in routine blood culturing,
multiple specimens must be collected to increase yield; a
negative result does not rule out infection, but a positive one
is significant. You can test whole blood, buffy coat, serum,
urine, spinal and other body fluids, and tissue biopsies. Several
blood PCRs can be done, or you can run PCRs on whole blood,
serum and urine simultaneously at a time of active symptoms.
The patient should be antibiotic-free for at least six weeks
before testing to obtain the highest yield."
Posted by Karol (Member # 15831) on :
Cactus,
Thank you and I did not think you were harsh. I really liked the ping pong explanation.
I took Doxycycline for 4 days and stopped it on June 8th.
The blood was drawn July 3rd.
You are all so smart with this Lyme stuff.....sometimes I feel pretty dumb yet this is new to me. Posted by Lymetoo (Member # 743) on :
Karol, the negative PCR definitely does not clear you!!! Stay away from ignorant ID "doctors." They can cause you to be ill for the rest of your life if you believe their garbage.
Thanks for the info, guys! I would have never known this. "DNA test" sounds so official.
You really are an informative bunch!
I guess it really does come down to symptoms & clinical diagnosis. I had alot of blood tests & my doctor was able to tell things from other factors like fibrinogen, liver enzymes, etc.
I guess you have to take into account other body functions & put all the puzzle pieces together.
BTW - my Western Blot was negative by NY State standards.
Posted by Karol (Member # 15831) on :
Thanks for the link Lymetoo......your tu tu cute! Posted by Lymetoo (Member # 743) on :
It's a great link!
Posted by Keebler (Member # 12673) on :
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If The blood was drawn Thursday, July 3rd it just sat somewhere for at least 3 days, maybe more if it could not get shipped out until the 7th due to the 3-day July 4 holiday weekend.
If it did sit in a Fed Ex truck over the long weekend, was it on dry ice (which would not last for 3 days)?
The delay from you to the lab might have affected the outcome of the test right off the bat.
Igenex usually never accepts samples that have not been drawn early in the week so that they get them by Thursdays.
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Karol,
don't feel bad. you are getting all this information because others have gone through this, too.
We just hope that, by sharing experiences, fewer and fewer people will have to jump through the same flaming hoops.
You might look back over some of the links from your earlier posts for details on testing.
I'm pretty sure the SAVELY article discussed that and the NEWBIE links will have that, too.
and lymecryme.com for studies documenting the abominable
sensitivity of currently employed testing
Posted by Karol (Member # 15831) on :
Thank you all for invaluable information.
You guys ROCK!!! Posted by lymeladyinNY (Member # 10235) on :
I remember when my PCR test came back negative and my HMO doctor told me it was a "very accurate" test and if it was negative there was just no way I could have Lyme.
This is the doctor who a month and a half prior had removed an enormous tick from my pregnant belly and had observed a bull's-eye rash.
Even though I presented with symptoms despite amoxicillin treatment, she decided to diagnose me with "conversion disorder" based on the negative PCR test.
Wow, did that label ever follow me around!! I was on my way to the cemetery before I found out about LLMDs. And I found out about PCR testing.
I was told it was like fishing. If you don't catch any fish after an hour of fishing, does it mean there are no fish in the lake? Makes sense to me.
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