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So Frustrated UUUUGGGHHHH !!!!!!!

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Posted 6/7/2016 3:05 PM (GMT -5)
Went to a Well respected clinic for second opinion ILADS trained and MD told me he wasn't impressed not sure I have Lyme with Immunoscience's lab report so now I got retested with Igenex lab.

He said I can stop Antibiotics. *** Also ordered PCR sleep study etc. labs ...

wont being on antibiotics for the last 6 weeks skew the PCR ????

I can't believe I'm in this situation, feel like crying. All I know is I'm 59 years old and I feel my body and brain are in trouble.
Posted 6/7/2016 3:10 PM (GMT -5)
Oh my, I would also be so frustrated and probably saying bad words.

Not to fret.....

As a last resort you can do like I did and fire all your "ah hem" doctors and do an herbal protocol!
Posted 6/7/2016 3:28 PM (GMT -5)
Hi Kct--

I'm sorry - I'm frustrated for you.

So he's doing IGeneX WB test? That's good, especially since you've been on abx (in some people the abx can help stimulate the immune system to be more responsive, hopefully producing a larger and more detectable volume of antibodies and generate a more accurate test result).

I'm not sure wha ta PCR sleep study is or why you're concerned about abx? Maybe someone else can respond to that.

Hang in there... and have a good cry - I swear crying is a solid detox mechanism! We're here to help.

-p
Posted 6/7/2016 3:47 PM (GMT -5)
P - I think the PCR is separate from the sleep study.

PCR for detecting lyme bacteria dna I'm assuming?

I don't know about the antibiotics skewing the PCR .
Posted 6/7/2016 3:56 PM (GMT -5)
So, so, so, sorry for your aggravation. If I were in your lymie shoes (which I'm not) I'd consider beginning an herbal protocol - just to have something in the flow in the understanding of lyme - basics of cats claw and japanese knotwood - and supplement with all the things nutritionally that help. The naturopath I saw, who had lyme, was convinced from his experience that anti-biotics weren't enough. So, if they are stopping your from anti-biotics, and are going in another direction, if there was even an inkling of thinking it might be a bacterial infection - herbs, herbs, herbs while Western medicine tries to figure it out. My observation is, you'll be quicker to intuitively know what to do safely than waiting for the ultimate diagnosis from a Dr. Hope it is alright to say this...
Posted 6/7/2016 3:58 PM (GMT -5)
You might be right, Girlie.

Kct -
As opposed to the serology tests, which are looking for antibodies, the PCR is looking for the microbe or DNA, not the immune response to it. It's usually a bodily fluid tested and as we know, lyme doesn't hang out long in the blood and probably not the urine. I know spinal taps are rarely even done anymore.

So, one way to look at it is that depending on when the test is run, the spirochete can be hiding in tissues, or out galavanting in the blood trying to reproduce. But I doubt this can be timed appropriately.

There have been reports on false negatives on these tests just like the others, etc. So I kind of agree that the abx are going to have already killed the spirochete or have run it into hiding, but the DNA could still be left behind.

I'd definitely as the MD to explain his approach to you.

-p
Posted 6/7/2016 4:55 PM (GMT -5)
My first LLMD said my lyme test was not positive "enough." I am guessing he wanted CDC positive. He said how about you quit antibiotics for a month and we retest.

I freaked but said calmly, "I will think about it."

There was no way in heck I was going to do nothing for a month and have bugs duplicating inside of me.

Herbs to the rescue.
Posted 6/7/2016 6:15 PM (GMT -5)
Yes, I have been told multiple times you need to be off antibiotics for six weeks at least to test for the bugs. I did that early February. (At least I knew I had to go off antibiotics anyway because my stomach was so torn up from an allergic reaction to rocephin. Later I went back on antibotics and was fine.) But you could start some herbal therapy that shouldn't mess around with the tests. Herbals work pretty well for me too.
I know you don't want to stop antibiotics but if you're worried about confections I would stop antibiotics and take the tests. For two years I've been trying to treat Lyme when I've been Ignoring Babesia and Bartonella because the doctors thought I didn't have them. It might save a lot of wasted time and aggravation.
If you're just testing for Lyme though...I'd say screw it.
Posted 6/7/2016 6:29 PM (GMT -5)
There seems to be differing opinions on taking antibiotics prior to testing.


My cousin's LLND had her take antibiotics to provoke a response for a positive test...but I've also read that you should be off them.

My cousin's was negative...and I don't know if she had any positive bands because she didn't ask for her results. shocked
Posted 6/7/2016 9:14 PM (GMT -5)
My LL D also told me she knows several LLMDS who use abx to provoke a stronger immune response prior to testing but I think this is mainly for serology tests. I can check with her.
Posted 6/7/2016 9:25 PM (GMT -5)
I was tested in March. The day I was tested I was off antibiotics for Diverticulitis for two days. I called Igenix to ask if it would make a difference and the girl said that it does not matter with the Western Blot test though she said that it can make a difference with some of their tests. My test came back a pretty strong positive.

I am not sure if it actually made them show up more or if it would have been even stronger had I not been on antibiotics. But I know that the two Elisa tests I had previously were negative.
Posted 6/8/2016 3:11 PM (GMT -5)
I forgot one important finding my liver is enlarged and tender when he palates it !

He said to stop the Zithromax, Rifampin and Nystatin. I agreed . Getting ultrasound of liver tomorrow and liver enzymes etc.

Freaking scary even for me a 34 year veteran of medicince !

My a couple of teeth started hurting too . Hope the antibiotics didn't create a secondary infection.
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