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Posted 7/17/2015 10:09 PM (GMT -5)
I finally had the long awaited consult with the Dr. from NY at a very renown research center for lyme. I already had a positive from an Igenix IGM **31 kDa +, **41 kDa IND, **83-93 kDa * & an Igenix positive IGM - **23-25 +, **39 +, **41 IND, **83-93 +.

My LLMD (very well known) in Sam Fran said that was more than enough and swore to me it was proof I have it. I'm trying to make plans to find treatment in a place that beleives it exists and can help!

mad These guys were supposed to be good (and very expensive) and they said their tests from the East Coast from Stoney Brook labs came back neg with no CDC (I never had a CDC poss. anyway), and I can take their word based on lab results I don't have it. They say I am very depressed and should go on depression meds like symbalta and Prozac, etc.... Sorry, I'm rantim
ng. I just told my whole family, my church, my doctors, everyone that the cause of the illness everyone can see is lyme, now I'm supposed to beleive it's all in my head...depression?? They said that the positive titers all came from a lab that is known for it's mistakes and is unproven.

Also, the Spect study that found a great deal of neurological damage and inflamation is an experiment lab and not trustworthy either.

Meanwhile I spent all day in emergency on tuesday and overnight until weds night and almost coded because they did'nt give me proper treatment until almost too late!! There is something wrong now with my organs (poss. pancrease) and they don't want to see it. They keep calling it a heart problem and all those tests are normal! Some of the others for liver and pancrease and sleen are not...just not really high..

Sigh, sorry for ranting people. Has anyone else run up against this? What should I do? I'm getting sicker and in more pain.

Ruth
Posted 7/18/2015 12:11 AM (GMT -5)
Ruth…

I am so sorry you are struggling like this. Moderators will be along (maybe tomorrow, given the hour) to help. But they'll probably also confirm that you do have lyme. If you haven't already, please read the "New to Lyme?" thread at the top of the page… it has INVALUABLE info about the testing and what each of those bands mean.

I don't know which MD from NY you're talking about but he should lose his license for blatant misinformation, manipulating test results and refusing care. Seriously. Why use that lab if it's so faulty? My guess is he thought the test would be negative, because they usually are due to their reliance on a strong immune system, which we lymees don't possess. And declaring your "Spect" labs were also erroneous is ridiculous. Why does he order expensive labs if he is just going to dismiss results? He "b.s.'d" his way through these positive results… and I think he should be reported.

But I don't really need to know who this is. Based on his incredibly biased and purposefully misguided advice, my guess is he is not ILADS trained and has been seduced by the IDSA misinformation machine. Unfortunately, those are some lyme specific bands that were positive/IND and you cannot have a "little" lyme and not have lyme. It's like being kinda pregnant but not pregnant. Your body cannot produce antibodies to lyme fragments or lyme DNA without lyme being in your body and those tests cannot detect antibodies to the microbes if they are not there.

But you're in luck because there are better LLMDs out there, we just need to get you to one, if you are no longer seeing your SF LLMD (did you move to NY or did you just want a second consult?) If you are looking for a second opinion, I'm sorry but you need to continue looking. Just create a new post "Looking for LLMD in SF" and you'll get responses.

In the interim, can you go back to your SF LLMD to get some feedback on your heart and pancreas issues? this seems urgent.

Hang in there… help is on the way.

p
Posted 7/18/2015 12:24 AM (GMT -5)
Hi Ruth, welcome to our community! I'm sorry you've been treated so terribly....by a Dr. who should know better. He does not sound like a LLMD at all.

So, are you not wanting to be treated by the LLMD in San Fran? Are you moving?

You have an Igenex positive test, that is a given. So, if you want to find a LLMD, then as Pirouette suggested - start a new thread and we can help you find one.

And, I also think in the meantime talk to your San Fran LLMD about your pancreas.

Hang in there....we can help you with this...just need a little more information from you.
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