Lyme testing- how to go about it

[BENNY07]

Hello all! So i apparently am a medical mystery (31 yo female with weakness- clinical on hands/fingertips, hips and slurred speech when tired, fasiculations (for three years)  everything else started 3 months ago after some physically traumatic events/surgery misap ending up in hospital with blood transfusions etc. )
  Anyhow THey have done a western blot test on me once it was negative, they ordered another one today and are sending it to MAYO..   I had a lumbar puncture last week, and we are goign to try to add lyme to it as well, however my question is how many of you used the IGENEX lab??? and if so how do you go about getting tested through them?   Does your dr have to request a kit, or do I?? We are at a point where we are about to try IVIG or high dose steroids for my issues, but I have been bit by mutiple ticks in the northeast in the past, so I could see iI would be at risk for Lyme and would like to make sure its not lyme before starting treatment that could make it worse! thanks again.
   Oh, and what were yalls symptoms that lead yall to your lyme diangosis?? anyone have loss of dexteriity/Muscle atrophy, slurred speech, GI issues?? I have numbness tingling neck back and joint pain sometimes as well- fun fun ! : )

[JackieCalifornia]

Your profile doesn't say what area you live in, so just generally, if you lived in say Memphis, I'd search for:

Lyme tennessee

Lyme memphis

and look at various Lyme-related websites that have referral functions, such as:

lymediseaseassociation [dot] org

ilads [dot] org

There are others too, but just be sure keep your suspicions up to avoid getting pulled into the kind of docs that make me uneasy -- the ones who want sell you a boatload of vitamins and supplements and want to see you every week.  Supplements and vitamins definitely have a place, in my opinion, but not as a means of making a doc wealthy.  Lyme is on the frontiers of medicine, and like any fast-developing area, it has its oddballs.

[BENNY07]

THank yall so very much!!! I really appreciate your replies!!!   How would I go about finding a LLMD? I know we had one in the area, but I want to say he got shut down recently.    
  Did either of yall have muscle weakness that never went away? My hands/finger tips never improve.. many of my symptoms incluiding slurred speech come and ago, but the weakness in my hips and fingers stay constant at all times..  

Thanks again so much!!!!

[carrie235]

Hi Benny:

My plathora of lyme symptoms came into my life suddenly, literally overnight with numbness in face, feet, toes, tingling/vibrating/pulasating of legs & feet, pain in feet and hands, trembling, anxiety, you name it.  Two weeks prior to my symptoms starting, I had had surgery to remove my gallbladder.  

My Doc suspects that the surgery was a stressor to my immune system which is what caused the my immune system to not be able to keep the lyme in check any longer which is why I had a sudden onset of symptoms.

I had both a negative labcorp test and lumbar puncture for lyme.  I did test positive through Igenex with a co infection though.  Started treatment 10 months ago and today, feeling probably 70 percent better.  I am still testing positive for both lyme and coinfection, but I am making SO MUCH progress!!!

Anyhow, sorry for spelling errors.  I am in a hurry to leave and just wanted to post to you.

Carrie

[JackieCalifornia]

Greetings.  Sorry to hear about all you are going through -- here are some quick thoughts on your questions, which are good ones.  No one here is medically trained that I am aware of (I'm certainly note), so take the following with a big grain of salt, but many of us have learned through trial and error, so this distills those lessons:

"So i apparently am a medical mystery (31 yo female with weakness- clinical on hands/fingertips, hips and slurred speech when tired, fasiculations (for three years)  everything else started 3 months ago after some physically traumatic events/surgery misap ending up in hospital with blood transfusions etc. )"

Comment:  It's not uncommon for an illness, injury or other trauma to push your immune system over the edge and cause it not be able to contain and suppress a Lyme infection.

"Anyhow THey have done a western blot test on me once it was negative, they ordered another one today and are sending it to MAYO.."

Comment:  The standard tests, Western blot and ELISA, are not very accurate, and non Lyme specialists don't recognize that.  Get your own printed out copies of the test results, but if the results come back negative, don't take it as the last word.

"I had a lumbar puncture last week, and we are goign to try to add lyme to it as well,"

Lumbar puncture is not usually able to diagnose or rule out Lyme, in the view of Lyme specialists.

Comment:

"however my question is how many of you used the IGENEX lab??? and if so how do you go about getting tested through them?   Does your dr have to request a kit, or do I??"

Comment:  IGeneX tests take a different approach from the lousy W. blot and ELISA tests:  they look not for antibodies your immune system makes to the Lyme bacteria, but instead for DNA of the actual Lyme in your body.  Non Lyme specialists tend to think IGeneX is a joke.  It's not.   IGeneX will send you the kit if you call them; then your doc has to sign the slip to get the blood drawn and the test run.  Non Lyme docs often just ignore the IGeneX test, and often just ignore the results.  I'd wait till you see a Lyme specialist and let him/her decide what to order etc.

"We are at a point where we are about to try IVIG or high dose steroids for my issues, but I have been bit by mutiple ticks in the northeast in the past, so I could see iI would be at risk for Lyme and would like to make sure its not lyme before starting treatment that could make it worse! thanks again."

Comment:  Lyme is a bacterial infection.  Steroids suppress the immune system.  A suppressed immune system cannot fight a bacterial infection.  Therefore steroids are not the way to treat Lyme.  About IVIG, I dunno.  

Lyme is very widespread in the population, but many docs say it is not.  That's why you need to find a Lyme specialist.


"Oh, and what were yalls symptoms that lead yall to your lyme diangosis?? anyone have loss of dexteriity/Muscle atrophy, slurred speech, GI issues?? I have numbness tingling neck back and joint pain sometimes as well-"

Comment:  Lyme has different symptoms in different people at different times.  Another reason to see a Lyme specialist.

Let us know how you do -- best wishes --