Monday, June 8, 2009

Cookie Cutters

Borreliosis by itself is an extremely complex disease. Lynette is reading a book written by a science journalist named Pamela Weintraub. Pam has been on the staff of several respected science periodicals. Her entire family has suffered from Lyme disease, her husband, her two sons and herself. Their battle against this disease is chronicled in her book, intertwined with all of the science, politics, and controversy that accompany Lyme disease.

Pam's book is called Cure Unkown -- Inside the Lyme Epedemic. Tonight Lynette was reading in the book about one of the most renowned Lyme disease specialist's own battle with the disease. This man took antibiotics for 26 months. He stopped and the symptoms came back. He repeated with another multi-month course of antibiotics until he was feeling better. He stopped the drugs and the symptoms came back. It wasn't until the 3rd long term course of antibiotics that his symptoms were cured.

The symptoms experienced by Lyme sufferers vary widely. The blend of symptoms is as distinct as the combination of winning numbers on a lottery ticket. There are some symptoms that are more common than others. But that doesn't mean that everybody will have them. Many Lyme sufferers have horrible pain, light or sound sensitivity, insomnia, fatigue, or cognitive dysfunction. Some have panic attacks, arthritis, seizures, or cardiac irregularities.

The Infectious Disease Society of America's (IDSA) guidelines on the treatment of Lyme disease dictate that 10 to 28 days of antibiotic therapy will cure all cases of Lyme disease. Anything that this course of treatment does not cure is not Lyme disease.

Reading about all the issues that Lymefriends members have suffered through is interesting. There are many folks on very harsh prescription regimens. Others talk of natural herbs and supplements that have shown to help them. Folks who have improved because of treatment with a particular therapy want to share their success, with the confidence that their cure is a panacea for all Lyme sufferers. Unfortunately there is nothing that works for everybody.

Perry Fields is an elite athlete. She was on her way to being an Olympic runner when she was stricken with Lyme disease. Perry is now symptom free and has been so for more than a year. She found a treatment and therapy protocol that cured her. I am so happy for her that she was able to find something to eradicate this disease when many others haven't.

Perry is currently writing a book on her Lyme disease experience. Lynette and I subscribe to her mailing list and receive emails about 2 or 3 times per month. In her emails she makes vague statements about lifestyle changes and medical practices that will make you better. She seems adamant that these few things are the cure for all Lyme patients.

Perry is back running and has posted some of the fastest times of her career. She is so lucky to have gotten well, but she has yet to openly share with others what has made her better. I'm sure her book will have all of the information about her cure. But you will have to pay to find out what it is. This reminds me of another group associated with Lyme disease who is trying to profit from the disease.

1 comment:

  1. Hi Brewfunk, I also see Dr J (travel from CA to see him!) and am on my third week of IV program. I would be happy to talk to Lynette if she needs help with anything.

    I have the same impression as you do about Perry Fields and the other groups who want you to pay them money to tell you what helped them. I find this very disappointing.