So, in a nutshell....I have parasthesias (2.5yrs) and prickling sensations in the heat. It can get very painful, specifically burning feet. I went to Johns Hopkins and they tested me from top to bottom. The only abnormalities were a positive on the Western Blot for Lymes and segmenting on my nerve cells (microscopic biopsy). Interesting thing is, my doc did not mention the positive Western blot. Does that mean it isn't anything to worry about? The only way I knew was that I asked for the records and read them myself. I can recall getting a tick stuck in my scalp for a week when I was about 12 yo. and my pediatrician had to remove it. I'm 33 now. Any insight would be greatly appreciated!
I left you a post on the MS forum. First of all a positive western blot is Huge. You need to read the Cure Unkown by Pamela Weintrtaub to better understand why docs are not taking these test more seriously.
Peripherial Neuropathy is a classic symptom of Lyme. I have it in 3 out of 4 limbs. You need to find a Lyme Literate doc (LLMD). You can go to lymenet ******* to locate one in your area.
Very few people with Lyme remember a tick bite. I had a known tick bite but I can count off a dozen people that meet CDC criteria for Lyme that don't remember being bitten.
Does your western blot list the bands that came back positive? Be well and you have come to the right place to get your questions answered.
I don't recall a tick bite in my life, and some of my symptoms are similar to yours.
I'm curious, what type of doctor ordered the Western blot and then didn't tell you the results? I couldn't even get my regular physician to order a Western blot due to my negative ELISA screens.
My Igenex W. blot had just two IgG bands and one IgM band, which is not a CDC positive results, but is IgG positive by that lab's standards. I've had an obvious reaction to antibiotics, and know I am on the right path to getting well.
I second Rebeccah's remarks and hope you are closing in on a correct diagnosis.
I messed up! I read the results so fast, I didn't pay attention. It was a positive ELISA and it recommended a western blot. That probably changes things, right? I read really quickly that the ELISA is not very specific and is more of a screening tool that leads to other tests. Is this true? Sorry for any confusion!
I think I should seek out a Lyme literate doctor. I told my neurologist on Tues. that my ELISA was positive and he didn't bat an eye at it and didn't order any follow-up. How do I find a Lyme literate doc? Speechgeek tried to give me a website but MedHelp must have censored it. It reads lymenet*******. I will google it now.......:)
I had a positive ELISA and a Western Blot was recommended. I don't know if I was bit. I was bit 20 years ago and had the head of the tip stuck in my scalp for a week. Other than that, I don't know of any ticks/bites. I just called my PCP to follow-up on the positive ELISA. I guess I'll take it from there. Thanks for the info!:)
My husband had a tick on him which we removed, but not sure how long it was there. He has had peripherial neuropathy which his doctor advised was something he needed to see a neurologist. I ask if a Lyme Disease test could be performed. The doctor glared at me and said "there has never been a case of lyme in Kentucky", but told me he would do the test. Today, my husband saw this doctor and was told out of the 7 items needed to prove lyme, all he had was muscle weakness. What kind of test did he do as I am unaware the ELISA nor the W. Blot show this particular result. Please help!
What the infectious disease MD says depends on the test results (duh).
What that means is: if the ID doc sticks with the IDSA (Infectious Disease Society of America) standards for diagnosis, then s/he will take a more restrictive reading of the results. If the doc agrees with the broader standards of ILADS (International Lyme and Associated Diseases Society), then the rest results are interpreted more broadly.
To diagnose Lyme, the IDSA requires more positives on the tests than the ILADS standards.
So you'll have to see what the MD says, and be sure to get copies of *all* the test results. After your appointment, think about posting back here with a list of what's positive on your tests and what the MD says, and somebody here can perhaps give some suggestions -- but of course none of us (as far as I know) is medically trained, so it's just kibbitzing...but sometimes even that is helpful. It has been to me.
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