This Is MS Multiple Sclerosis Knowledge & Support Community

Hi,

I got the results of my Lyme test and started treatment.

IgeneX Western Blot:
IGM - 28 ++, 31 IND, 39 +, 41+, 58 +, 66 +, 83-93 IND.
IGG - 39 IND, 41 +, 45 +.

I started IV antibiotics (Rocethin or Rocephin???), not sure on spelling. Will be doing this 2hrs 4 days a week with evalluation/testing every 4 weeks. Lyme Doctor said with Lyme Disease the rule is for every year you had Lyme Disease it takes 3 months to get better. Once I feel better he said they will continue 2 more months and then stop. Also, he said in my case my MS diagnosis is Lyme.

Please let me know any thoughts.

Thanks,

Rob

Hey Rob,

From someone who also has MS or has been treated for MS since 1990, and then in 2006 also got a lyme test; I'm not surprised at your results.

I tested negative, but this is expected. I did however have Lyme specific bands that were positive and IND.

How long have you been diagnosed with MS? Do I remember correctly it was fairly recently?
How long have you had symptoms?

From what I know and read, lots of people start on IV Rocephin..and see great improvement.

I'm in lyme treatment for 1 year, I'm much better, but still not symptom free. If your docs calculations are correct, I'm ahead of the curve. I can say I feel 80% better than I did a year ago.

I believe that my MS was the symptom, and Lyme Disease is the cause.

Hang in there, and the very best to you
tory

Hi Tory,

I was diagnosed with MS in the beginning of June 07. My symptoms started in the beginning of March 07.

What medication(s) are you taking for treatment? IV or oral treatment?

Also, I was told by the Lyme Doctor that my insurance will likely cover the treatment since I have a positive Western Blot. If not i guess it is out of pocket. Have you heard anything about insurance and Lyme? What is the cost for your treatment? I am running low on funds for this with deductables, copays and out of pocket costs. I have reached my insurance plan maximum out of pocket cost of 1800.00, and now I finally starting to get to the bottom of this, hopefully my insurance will cover this as I am sure this treatment will cost a pretty penny.

Anyway, nice to here from you and please let me know anything.

Thanks,

Rob

It's unfortunate that we sick people face the unfairness of "the diagnosis".

LD is such a hot political topic: and I don't know if this is the place to get into all that's involved.

I will keep my fingers crossed that your ins co will pay for your treatment.

I have been on oral meds, and so far all MRI's and meds have been covered.

I do have and will always have a MS diagnosis; so is that why my ins is paying? probably..

When I was injecting my DMD I never needed to be concerned whether or not my ins would pay! Each month, my drugs were covered-no questions asked.

Now, I cross my fingers with each script!

Very sad, but until the guidelines are changed: this will remain unfair.

Here's the latest in this political mess:
***********
Business Wire Link

November 16, 2006 08:00 AM Eastern Time

Historic Move by CT Attorney General to Investigate IDSA Guidelines Process
Gives Hope to Thousands of Lyme Disease Patients

Statement from Pat Smith, President, Lyme Disease Association

HARTFORD, Conn.--(BUSINESS WIRE)--The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General’s office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines.

Although unprecedented, the LDA feels this action is vitally necessary to protect the welfare of chronic Lyme patients nationwide whose treatments have been impacted by the stance taken by the IDSA. Their guidelines deny the existence of chronic infectious Lyme disease and list as “not recommended” most of the conventional medical treatments prescribed by physicians as well as alternative treatments often chosen by patients for any Lyme manifestation. Even some nutritional supplements should not be an option according to IDSA.

Clinical guidelines now drive the standard of care, and these IDSA guidelines have already been published on the CDC website. They are being used to deny treatment reimbursement and will have a continued chilling effect on the small numbers of treating physicians, since clinical discretion is not recommended in the guidelines.

The October 2006 guidelines do not acknowledge that a complex bacterium such as the Lyme disease spirochete could possibly survive in the body and the brain, evading the immune system and short-term courses of antibiotics, nor do they take into consideration any other professional diagnostic or treatment guidelines such as those published by the International Lyme and Associated Diseases Society (ILADS), which discuss chronic disease diagnostic and treatment modalities. The IDSA also refused to allow patient or chronic disease-treating physician input into the guidelines process through the LDA and ILADS, respectively, although both organizations requested to be a part of the process.

The national LDA and its affiliates Time for Lyme (CT) and the California Lyme Disease Association and ILADS, a professional medical organization, had appealed to the Attorney General on behalf of patients and treating physicians. We are encouraged by the issuance of the CID, and we hope that this will lead to actions that will guarantee patients the right to be treated and support physicians’ right to treat using clinical discretion.

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Until this is decided, until ILADS can incorporate their "input" ins co's will follow the restricted IDSA guidelines and people like us are,,,,well, we don't exist.--Chronic lyme that is....

Sorry you are now part of the lyme group rather than remaining part of the MS group...ins co's and docs think we're all fanatics and crazy.

I do wish you the very best,
tory

My opinion: If LD were allowed its rightful place in the medical community, the loss of $$$ to the MS community would be devastating!