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MS or Lyme? Need to find a Lyme Literate doctor in CT!

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Posted 3/9/2014 10:14 PM (GMT 0)
Hi, all,

After experiencing weakness in my hands, cold and numb hands and feet, muscle spasms, hip spasticity, and other issues, I have been undergoing a variety of testing, first with my GP and then with a neurologist. An MRI last week showed lesions on my brain indicative of MS and I am waiting for the results of a lumbar puncture. While I have tested negative for Lyme (ELISA), I have been bitten by a tick on more than one occasion and spend time outside daily in shoreline CT. Although my neuro thought it unnecessary as he thinks my symptoms are indicative of MS and not at all Lyme, I am having Lyme PCR testing of my spinal fluid and blood serum. I know this is not necessarily reliable, either, but I'll take whatever testing I can get!

I am hoping to find a Lyme Literate doctor that will help me get appropriate testing and/or treatment. Ideally it would be great to have someone between New Haven and Old Saybrook, but I'll certainly travel farther if there is a doctor worth the drive!

Thanks so much in advance for any suggestions!

-Lu
Posted 3/9/2014 11:16 PM (GMT 0)
Hi Lu,

There is one in NY state, not far across the CT border.

Margaret
Posted 3/9/2014 11:23 PM (GMT 0)
I know of an excellent one in ct, he's one of the ILADS directors and I met him this weekend. He's using cutting edge new PCR testing too.
Posted 3/10/2014 1:22 AM (GMT 0)
Hi Lucy, the ELISA test is completely useless. It is 40 percent sensitive, meaning even if you had Lyme, it will only test positive 4 out of 10 times. The western blot paints a better picture. It has a better sensitivity 60 percent. It tests for recent exposure (IgM) and chronic exposure (IgG). Yet even western blots can be misleading. Lyme can hide from the immune system and not show up on this test. There really isn't a sure fire way to rule out Lyme through blood work. Although a good test is the Lyme C6 peptide test and the Lyme PCR test. These have 60 percent sensitivity but if you test positive on them they're 99 percent accurate. It's just the false negatives you have to be concerned about.
Posted 3/10/2014 1:31 AM (GMT 0)
If you email me I can email you back and give you the name of a great lyme doctor. He's in Connecticut.
Posted 3/10/2014 10:54 AM (GMT 0)
Thank you all so much for your responses and information.

LearnLyme - I look forward to reading your blog!

Maine76 - I am going to email you now. Thanks in advance!
Posted 3/10/2014 11:21 AM (GMT 0)
Lucy1,

I see a really good LLMD in Stamford. If you email me, I would be happy to send you his information.

Regards,

Laura
Posted 3/10/2014 11:44 AM (GMT 0)
We are a small company based in Roslin, Scotland developing novel techniques to resolve insect- and tick-related problems. One of our projects involves the development of a new technology to remove ticks easily and safely, as well as determining if they're infected using a rapid, sensistive method that would allow patients and physicians to assess the risk of Lyme disease more quickly and begin treatment if necessary. This technology could also be used to gather information on infection rates in ticks wherever it is used. Here in Scotland we also have one of the highest rates in the world of multiple sclerosis, for unknown reasons. The possible involvement of ticks and Borrelia seems likely and I'm amazed that studies such as the WHO atlas of MS focus on things like gender and income rather than exposure to ticks. We would like to gather as much information as possible on this in a questionnaire survey of MS patients which would concentrate on two things: (a) potential exposure to ticks bites through work or recreational activities and (b) whether this was ever even considered when MS was diagnosed. If this is of interest would people please follow us on Twitter or check out our website (www.xeroshield.com) and be ready for more details? We can't directly help Lyme or MS sufferers but more information will stimulate the right sort of research for a cure, raise awareness and prevent future cases.
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