Wednesday, April 1, 2009

Good News

Lynette's condition continues to improve. She is taking all of this stuff and we have to assume that some of this stuff is the reason why:

Ultra InflamX 360 Medical Food, IgG 2000 DF Immunoglobin Formula, Minocycline, Cefuroxime Axetil, Naltrexone, Skelaxin, CoQMax, Perque Magnesium, Acetyl L-Carnitine
Omega Pure 600 Fish Oil, Florastor, Acidophilus
Kyolic Garlic, Vitamin C

Lynette is now motoring around the house with her walker, unsupervised. Her right leg is not resisting her desires as much as it has recently. We took her out on Friday afternoon and when we got home she walked up the steps from the garage, alternating feet and steps. Not too long ago somebody was behind her helping her right foot up each single step. Some of her symptoms have disappeared. She had leg twitches at her lowest point that were only around for a week or so. Swelling and coldness in her lower legs has subsided. I noticed tonight that her vision is improving. She hasn't been winking at me all night. She's gotten her sex drive back too!

We are looking forward to Lynette's phone consult with Dr. Fishman on Friday. This will likely be the last time we speak with him for a while. I don't expect any big changes in Lynette's treatment. That will happen at the end of the month when we visit Dr. Jemsek.

I have heard a lot of positive news in the last week or so advancing Lyme treatment and diagnosis standards.

Without debate, the Connecticut Legislative Committee on Public Health approved legislation that protects doctors who treat Lyme diagnosed patients with long term antibiotics. The bill gives doctors the right diagnose chronic Lyme disease and treat with long term antibiotics without fear of reprisal by the state.

In what I am calling the Volkman smackdown, David Volkman, Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook has submitted a letter to the IDSA pointing out all the inadequacies of their current approach. To read the letter, go to this link, and then scroll to the bottom and click on the link next to Download Attachment.

One more little bit of commentary from me. I've come to the conclusion that the changes that are needed in diagnosis and treatment of Lyme disease have the best chance of being promoted by two parties: Patients and scientists.

Insurance companies don't need a change. Every new disease they have to pay for treatment for hurts their bottom line. The doctors can't change. They are just pawns in an awfully orchestrated program. They have no latitude to be creative or inventive. They have to follow a formula or they will stop getting checks from the insurance companies.

Science is the best way to solve the problem, because physical proof is indisputable. The more this issue is studied, the better the information that will be available. Unfortunately scientific studies take funding, and Lyme isn't exactly on everybody's radar screen. We need to encourage various levels of our government to fund research on this disease.

The patients hold a lot of power, but it is hard to harness. They talk to the doctors constantly. They can convey their concerns, express the issues they are dealing with. They are the largest constituency in this fight. They can communicate with their government representation. They can hold conferences and find outlets in the press to get the word out. But they have to speak up.
Obviously I am deeply concerned about this whole Lyme situation, but I am beginning to see that this is a problem endemic in our health care establishment. I read a great article from a widely accessible media outlet today discussing the influence of drug companies on physicians. It includes mention of treatment guidelines authored by panels with connections to the drug companies that are the law of the land for practitioners. Check it out here:

1 comment:

  1. Annette, you are so blessed to have a husband who has taken up this cause for you during this time. You both have amazed me at the commitment you have to this--you are proof that we do have to be our own advocates! I continue each day to pray for the restoration of your body and I am so thankful for this good news!