By Annette Hinkle
Mara Williams, a nurse practitioner specializing in the treatment of tick borne diseases, author of “Nature’s Dirty Needle” a book about Chronic Lyme Disease (CLD) and a founder of Inanna House, an integrative healing center for CLD in California.
You’ll be in Sag Harbor this weekend to talk about CLD at the John Jermain Memorial Library and the Old Whalers’ Church. What will your presentation focus on?
I’m going to talk initially about the two different camps when it comes to the issue — the Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS).
The IDSA actually sets guidelines for infectious diseases in this country. Internationally, most western medical systems follow IDSA guidelines. So it not just affects us, but people around the world in industrialized countries.
The IDSA says this is not an epidemic and that 97 percent of all Lyme cases are from the Northeast. They also say that anywhere from one dose to a month of doxycycline will take care of it — and if someone doesn’t get treated right away, they say that’s okay, the body will take care of it.
They don’t believe in long term antibiotic therapy or integrated care – nutritional or herbal supplements in Post-Lyme-Syndrome. They also say Post-Lyme is similar to normal aches and pains of every day living and don’t recommend antibiotics.
And as I understand it, the philosophy of ILADS is that if not treated with sufficient antibiotics in the first year, Lyme is able to hide within the body and manifest itself in any number of illnesses down the road.
ILADS is trying to legitimize their stance through evidence based medicine. Two doctors Dr. Alan MacDonald and Dr. Eva Sapi, are doing research on biofilm –– a gelatinous muck made by some fungi and bacteria. These bugs make this film which is held together in a shell and these bacteria get in and become more adaptable to hiding from the immune system. They know how to hide and change form and sophisticated infections come from it.
It sounds similar to the HIV virus, which also manifests in a number of different illnesses.
There are a lot of similarities with HIV, but there wasn’t a stamp with HIV that said we recognize it in this fashion, but not this one, like there is with Lyme.
It’s an interesting dilemma for families ill with the disease. You have to support your immune system and build it. If you can treat it within the first year — and it is easy to treat with enough antibiotics — it can be eradicated completely and you wouldn’t even know you were sick.
But if it’s greater than a year, it becomes harder to treat and the sicker people are when crash. They develop challenged immune systems. The disease wreaks havoc on the immune, hormonal and autonomic system. After you detox pathways, you have to build up the immune system.
Why was ILADS created?
ILADS came out of the refusal to treat according to IDSA’s standards. Dr. Joe Burrascano and Dr. Alan MacDonald who were both on Long Island [at Southampton Hospital] started doing public speaking and were harassed out of treatment. Both were instrumental in getting the association started and began to educate and promote what needs to happen.
Things are happening. Virginia has passed a law that says doctors must tell patients typical Lyme test might be a false negative. The IDSA says positives are false positives and that if there’s only one band on the test, not five, you have a false positive. But if you have one band, you have Lyme.
Are there accurate ways to test for Lyme Disease?
When you grow it in a culture, it can take the blood up to six months to get a positive response because stealth pathogens hide well. In three years, I’ve only had one patient come back positive in 10 days — the others took 16 weeks.
We need a longer diagnostics period for Lyme and we need to treat it for a couple months, not a couple weeks.
What are some of illnesses that may be related to CLD?
Anybody with fibromyalgia, chronic fatigue or any autoimmune disease needs to explore the possibility of a bacterial infection. They also should have a clinical history taken. When was the last time you spent an hour and a half with a doctor talking about this? The bottom line is you have to listen to the story, take the history. If the early part of the story doesn’t match, it doesn’t sound like Lyme.
It’s looking at it like an onion, you have to peel back each layer. It’s also listening. Most people who have been sick a long time and crash have a participating factor — the death of a loved one, a car accident, a divorce, something traumatic.
Most doctors will just put them on Prozac.
It’s sad, doctors don’t practice medicine anymore. My goal is to give people the other side of the story so they can care for themselves.
Mara Williams speaks at the John Jermain Memorial Library in Sag Harbor on Saturday, June 22, 2013 at 10:30 a.m. Pre-register at 725-0049. She will also speak from 3 to 4:30 p.m. on Sunday, June 23 at the First Presbyterian “Old Whalers’” Church on Union Street.