LLMD wants to try penicillin and then do an IgeneX urine challenge to test for things coming out of the urine. This almost sounds hoaky, but IgeneX is doing it...does this sound cheesy or what?
Posted by WildCondor (Member # 434) on :
That test has been around for years, it used to be called the LUAT. Patients are given a dose of antibiotics, then the urine is collected a day or 2 later and tested. Since Lyme is a clinical diagnosis, that test doesn't make much sense now.
Posted by massman (Member # 18116) on :
But...isn't part of lymes job to spread ?
Animals and humans urinate often, so wouldn't that be a good way to spread it ?
And I agree for sure that it is a clinical diagnosis but many if not most seem to be really uncomfortable without an "official" test.
Posted by Lymetoo (Member # 743) on :
It's easy for that one to come back falsely negative but if it comes back positive it means you have it!
and Yes, lyme is a clinical dx .. Did your dr dx you with Lyme already?
Posted by treepatrol (Member # 4117) on :
I would be on the abx at least 2 days before starting the 3 day urine test and amoxicillin and say biaxin xl should do the trick. High dose are needed 1000mg aday biaxin xl and moxy at least 1000mg I think when I did it it was a combo of ceftin and amoxicillin around combined abx ar 5000 mgs.
Posted by sutherngrl (Member # 16270) on :
That dot blot test is $400. I was going to do it; but the kit is still in my closet. It is only about 50% accurate. Decided I didn't want to throw that much money in the toilet. I might a little later!
However if it comes back positive, it is complete proof of LD, since it is testing for the DNA of the spirochete. In that case I wouldn't feel like I threw my money away. But most don't get positives with it.
I think if this test is used properly then it is not only used to prove you have LD, but to see if you are actually killing the ketes. If you urinate the dead ones out that is a good sign that your antibiotics are doing the trick.
I think this was the point my LLMD was trying to make, not to use it as a diagnositic but to see if your antibiotic is working. In that case you wouldn't do a challenge, you would just use it while on your regular antibiotic treatment.
Posted by mark kennedy (Member # 17426) on :
I had the luat test and it came back positive. My LLMD told me that is about as good of proof I could get that I indeed have Lyme. So I don't think its a completely useless test but I do understand its possible to get a lot of false negatives.
Posted by sutherngrl (Member # 16270) on :
Mark, were you taking antibiotics at the time? How long were you on them, etc? Need more details!
Posted by Abxnomore (Member # 18936) on :
It's not a useless test and it appears to be different or "improved" from the one that was used years ago.
While we know Lyme is a clinical diagnoses, a positive test is helpful not only because it can help settle our own minds (and unsupportive family members) when dealing with this illness but it is useful for insurance purposes and if one is applying for disability and the like.
There's a big difference in knowing that Lyme is a clinical diagnoses and the practical need to try to acquire a positive test given the climate those of us who have the illness have to work within. LLMD's know it's a clinical dx but continue to order tests even when treating and we all know the reasons why.
So just saying that Lyme is a clinical dx. and testing is worthless really does not help us much in practical terms when dealing with the system.
In a perfect world, yes, it's a clinical diagnoses but that does not mean that testing should not continue to be done while being treated.
Posted by JamesNYC (Member # 15793) on :
I agree, BUT, there are a lot of people who, even with the clinical diagnosis, will feel more confident with some kind of objective test.
With all the "controversy" surrounding lyme, there has been enough misinformation to cause doubt for many people with symptoms. Of course a neg test means nothing, but a pos can give peace of mind.
Personally, I would be hesitant to have a port installed and start taking IV drugs without some objective criteria. (Of course if I was debilitated and been given the run-around by dozens of Drs, I might not care).
Posted by sutherngrl (Member # 16270) on :
You are right Abxnomore, I see the importance of these test, but at the same time, money can be a problem for some. Also, I hate waiting for test results knowing the majority of them come back negative. So sick of the stress of that.
I am already convinced that I have LD. The reason I considered doing the urine test was simply to see if the spirochetes were actually dying off. That would be helpful to know and encouraging. But spending that extra $400 is a concern.
Not sure if my insurance will reinburse. Also constantly testing just brings more attention to yourself where insurance co is concerned.
I still may do the test later. Maybe after Christmas. Just depends on how my treatment progresses over the next few months.
If you have plenty of money, then I say test away. Sooner or later you might get lucky. Not that a clinical diagnosis is not good enough; but proof is nice for the mind and everything that Abxnomore said.
Posted by mark kennedy (Member # 17426) on :
Sutherngrl I was on doxy and flagyl before the test. The 5 days of the testing my doc increased the dosage of both and added zithro. I was in so much pain I assume from the herxing or maybe from from so many strong antibiotics but made it through the 5 days.
Posted by lpkayak (Member # 5230) on :
i went un dx for 15 yrs cuz of elisas
my daughter got sick and showed pos on luat
a month later i did -off the chart-huge number-and finally-after 15 yrs started tx
Posted by treepatrol (Member # 4117) on :