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A word of warning about Lyme

#1

Hi guys…a word of warning about Lyme…I just had a western blot done at a private lab who are, I believe, FDA approved, not a single positive band on the 15 tested on either Igg or Igm antibodies…whereas Igenex found loads of positive ones…just do UR research and think it over…not sure what it means but clearly there is disparity between labs. Xx

#2

hi lizzie how are you doing these days? are you still on the doxy? are you on any mav meds?

#3

Hey I’m off the antibiotics as I took a break and felt no worse…I’m so confused! Xxxx

#4

Oh God Lizzie. I really don’t know what to do now! What will you do? How are you feeling? xxx

#5

I am so so confused…inclined to scrap Lyme!!! But I’m not 100% sure. How are u? Xxxx

#6

I’m up and down Lizzie. Not quite as bad as last few weeks but not great to be honest. I had to give up on the gabapentin so I’m just on the nori alone again. I feel like I should add something else now.

Do you think the antibiotics weren’t doing anything then… was it like a placebo effect? Will you see Dr S for another MAV med then? xxx

#7

Hi DL,

Thank you so much for posting this and letting everyone know. Just unreal how many are being led down the garden path because of that Igenex test.

Hope you are feeling well even though this appears to be a red herring.

S

#8

How can the Igenix testing company get away with this? It just smells more like a scam trying to rope in desperate people looking for answers. I don’t understand how in the U.S. with all our regulations this is happening. It would be nice if some of the folks that are being treated for lyme and originally were diagnosed with MAV would share their stories, good or bad. It is so very confusing.
Thanks for posting.

#9

One of the great things about hearing information like this from our own members is that we know who they are, know about their history with vertigo and migraine and get a more accurate picture of what is really going on. Anecdotes on the internet such as Facebook really doesn’t tell us much of anything unfortunately and is usually more misleading than anything else.

#10

— Begin quote from “rockergrl”

How can the Igenix testing company get away with this? It just smells more like a scam trying to rope in desperate people looking for answers. I don’t understand how in the U.S. with all our regulations this is happening. It would be nice if some of the folks that are being treated for lyme and originally were diagnosed with MAV would share their stories, good or bad. It is so very confusing.
Thanks for posting.

— End quote

Someone correct me if I’m wrong, but I believe I read on the Igenix website that they can not test for Lyme for residents of New York. I wonder what the background story is as to why this restriction is in place??

#11

Old news, but still interesting articles:

http://www.nytimes.com/2005/08/23/health/policy/23lyme.html?pagewanted=all&_r=0

“The company has been in hot water for more than two years, since the New York state health department charged that its Lyme disease tests had failed a series of experimental challenges. California regulators also have been watching the company, citing it for inadequate training and quality control.”

#12

Hi Jem
Sorry to jump in have you thought about maybe giving pregabolin a go you might be able to tolerate it better and it’s supposed to be very similar to gabapentin?

#13

Great thread. Thanks DizzieLizzie1. Also Kennedy for the two articles - very interesting read.

#14

— Begin quote from “shenay.e”

Hi Jem
Sorry to jump in have you thought about maybe giving pregabolin a go you might be able to tolerate it better and it’s supposed to be very similar to gabapentin?

— End quote

Hi Shenay, yes I had thought about it and would be up for trying it if Dr S prescribes it as I know a few people who are having some success on it. I believe it is more expensive than gabapentin so that is why Dr S seems to prescribe gaba for people who are already on another med I think x

Re Lyme I can confirm that the Igenex form does say that certain tests are not available to residents of New York - it struck me as odd when I read that! It is all so confusing though!

#15

what is the differerence between igenex and western blot?