Expert: Carol - 6/16/2009

Question
I was diagnosed with Lyme disease in May 2008. I had the bullseye on my left arm in 2001. Always tested negative until samples were sent by my Lyme Dr. to Igenex Labs in California. They appear to be the most up-to-date.
I was on oral antibiotics for six months. My lyme Dr. told me that it would be at least 18-24 months before I started to feel better, and given my age (60), he couldn't guarantee that. I have had my lyme Dr., my family Dr., and 2 neurologists declare that I am totally and permanently disabled. Social Security took less than 2 months to award disability benefits. My insurance company (Cigna) continue to deny my claims stating that I do not have lyme disease nor fibromyalgia. Is this legal, and would someone please point my in the right direction.
Thanks,
Steve

Answer
Hi, Steve...

First, I'm so sorry for what's happened to you.

Don't be discouraged, though, as there have been many remarkable recoveries from Lyme when a patient is on the right treatment. My Lyme doctor was in a wheelchair (diasnosed with fibro) filing for disability when a colleague of his discovered it was Lyme. He made a complete recovery and dedicated his life to treating Lyme patients.

It sounds as though you could use the IV which is very expensive. I've listed resources below which would help with this. (I did 8 weeks of IV, had about 200 Bicillin shots, and was on 6 oral antibiotics always in combos of two over the course of 37 months.)

Your question raises a big question for me. You said you WERE on oral antibiotics for six months. Does that mean you are no longer on antibiotics at all? Lyme treatment can go on for years (as in my case) depending on the condition of the patient.

Insurance companies are pretty much in a league of their own, making and playing by their own rules. They seem to be shielded from legal action.  

You have probably already done this but I have to ask anyway: Can you appeal and furnish them with copies of your positive test results and treatment plan? Have you tried getting the name of a specific person that you can build a rapport with perhaps calling to discuss your case first and sending that person your paperwork? Sometimes, if you crack the shell, you can get what you want.

If you need help with medicine costs (I don't know if they assist with office visits, tests, etc.) see the following list. If your insurance does not cover medicine costs, see www.needymeds.com.

Also, try the support forums at www.LymeNet.org. Great community there, all Lymies.

1) Patient Access Network Foundation
PO Box 221858
Charlotte, NC 28222-1858
1-866-316-PANF (7263)
www.patientaccessnetwork.org

2) The Health Well Foundation
PO Box 4133
Gaithersburg, MD 20878
1-800-675-8416
www.healthwellfoundation.org

3) Chronic Disease Fund
10880 John W. Elliott Drive
Suite 400
Frisco, TX 75034

4) Patient Advocate Foundation
700 Thimble Shoas Blvd
Suite 200
Newport News, VA 23606
1-866-512-3861

Good Luck, Steve. Here's my email if you need anything else. You sound like you just might.

Carol   mineandours@hotmail.com