RE: Re: Got a call to go get another test done_LYME

[Guest guest]

Most insurance will not pay for the igenex testing. I looked and it is over $500 for all of it. It was more expensive than the other labs, but if you want the right testing done. Plan on close to a grand if you want some kind of DNA testing done.

From: Valarie <val@...>Subject: RE: Re: Got a call to go get another test done_LYMEhyperaldosteronism Date: Friday, May 18, 2012, 2:36 PM

CDC says its testing protocol should not be used for diagnosis. Sounds like your testing was from LabCorp or Quest. Both leave off two important Lyme bands and both require five bands. It says, "Per CDC guidelines, if ELISA test result is NEGATIVE, Western blot should not be performed." That is pretty disgusting given the ELISA has a 50% error rate, not much better than flipping a coin. Lyme is a clinical diagnosis, made by an LLMD. Testing at a good lab (www.igenex.com) can be confirmatory but false negatives are still a problem. You will not get proper testing or treatment from a regular doc. My WB was "IND." I had a positive band 41 and several "IND." Thank God, my doc considers even one positive band suspicious. I joined this group in 2005 and would have checked out by 2009

without the intervention. What else do you remember? Bulls eye rash? Sudden flu?

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lvasiliu@...Hi Valarie,Since you seems to be the "Lyme resident expert" here, I also did a Lyme Western Blot testing which they said was "negative".BTW, this was ARUP Igg/Igm Borrelia burgdorferi AB by WB, but this lab is using the CDC criteria for positive (for IgM, positive result reported when any 2 or more bands are present: 23, 39 or 41kDa) here:http://www.aruplab.com/guides/ug/tests/0050254.jspAnd my doctor is NOT and LLMD, so do you know if these results are relevant or I need to go to an LLMD for an IgeneX type result?Thank you for your reply.tiu>> Stacey, what Lyme tests? Most docs don't have a clue how/what to test and> how to interpret. The fact that you don't make antibodies makes most Lyme> tests even less likely to be correct. Mine was diagnosed by DNA in urine. > > > Val

[Guest guest]

Ticks like to get us where we can't see them - the nape of the neck, the hairline, behind the knees, and in various creases. So I bet we scratch alot of ticks off in the night and if we are getting Lyme disease I bet we often don't see the rash. I have had 2 ticks I KNOW of in my life on me. Both while living in the Texas panhandle. Lived on OK for 10 years before that and my wife had some on her, yet I never saw them on me, but we had some serious infestations in the yards and they killed 2 of our next door neighbors dogs. And we spent alot having the yards and dogs treated back then. Grew up in So Cal and didn't know what a tick was as we never saw one on us or the dogs. Fleas yes, ticks no.

Where are you? Do you have weird neuro symptoms you can't explain? Just curious.

as to ticks, mine were both behind the ear and I found them just scratching. I use cologne and they get mad, back out, and I can grab them head and all. I "learned" / found that trick in Texas as a physician assistant since I was all alone in this rural county and farmers and ranchers came in with ticks in strange places - I did this to get one off a 90 year-old mans ear drum. That was the first time I tried the cologne trick because it was hurting him so bad to pull it so I got wiley, after that cologne worked every single time, but that was the only in ear tick!

One of my tick bites had a rash develop and if I recall it was our nurse that saw the rash first, not me, but it was bullseye like and I did a short course of doxy until I could no longer take the nausea from it. I had a classic bullseye rash behind one of my knees during this same period, but I never saw a tick or took one off there. But.......if I could ever afford the testing I'd do it, but times are really hard for us. I have had some - many strange neuro things though - we've chatted about on here enough - that I have no idea about as my K is better so they should not be from that, like raynuads phenomenon, a trigeminal neuralgia, eye things, and I am always fighting some type of fungal rash somewhere.

My Conn's seemed to start before that, but I had been a sick puppy until 2010. Then 2011 was a great year physically (conn's fixed in 11/2010 finally), but 2012 has not gone so well. Got the flu in Jan, and then anemia that keeps worsening, thyroid acted up (hyper) for a very short, then am getting sick alot again. I feel feverish all the time again. Who knows, but can't even get a doc to write the order for lyme testing (they say let the rheumatologist do it, but I don't have one yet). Go figure.

From: lvasiliu@... <lvasiliu@...>Subject: Re: Got a call to go get another test done_LYMEhyperaldosteronism Date: Friday, May 18, 2012, 11:13 PM

Yeap, I've just checked my lab results and the test was an ELISA Igg/IgM Ab for Lyme (which you saying is wildly inaccurate)And I did had a presumably flu/viral illness prior to this but not rash that I can remember.Thank you for your reply.>> CDC says its testing protocol should not be used for diagnosis. Sounds like> your testing was from LabCorp or Quest. Both leave off two important Lyme> bands and both require five bands. It says, "Per CDC guidelines, if ELISA> test result is NEGATIVE, Western blot should not be performed." That is> pretty disgusting given the ELISA has a 50% error rate, not much better than>

flipping a coin. Lyme is a clinical diagnosis, made by an LLMD. Testing at> a good lab (www.igenex.com) can be confirmatory but false negatives are> still a problem. You will not get proper testing or treatment from a> regular doc. My WB was "IND." I had a positive band 41 and several "IND."> Thank God, my doc considers even one positive band suspicious. I joined> this group in 2005 and would have checked out by 2009 without the> intervention. What else do you remember? Bulls eye rash? Sudden flu? > > Val