Gina de Vries

Help Heal Fran!

Filed By Gina de Vries | October 06, 2008 9:00 AM | comments

Filed in: Living, Living, Politics, Politics
Tags: Fran Varian, Frances Varian, Lyme, Lyme Disease

I read at a benefit for my beloved friend and colleague Frances Varian on Wednesday night. Many nights later, I'm still a little choked up about it. I was wanting this post to be smart, political, incisive -- but I've been staring at the screen for an hour, trying to make the words come together, and really, all I'm able to write about is the strange mix of rage and hope that I'm feeling.

Fran has late-stage Lyme Disease, a progressive, debilitating disease which can be fatal if it is not treated properly, and which infects 200,000 new people each year -- surpassing new HIV infection rates and surpassing cases of West Nile virus. Every new article I read about how patients with Lyme Disease are generally treated is turning my stomach -- how many people get the run-around from doctors, get told they must be faking it, get told it's not real, basically because of corporate greed and government cover-ups. The film Under Our Skin has some amazingly informative trailers up on the website. If you want more information about the history and politics of Lyme, please give it a look.

And if you've some cash to spare, even just $5-$10, please please please make a donation to Fran's Lyme-Fighting Army. Fran needs as much community support as possible right now. It's really important that we help each other in times like these.

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Thanks for this important post, Gina. Lyme is a terrible disease -- all the more so because so many women get it, and it can be treated effectively today. It's a fact, but not widely known, that there are some 90 types of autoimmune disease, from Lyme to lupus, and statistically speaking they are found in more women than men for some reason. This is why so many doctors still try to tell a woman that what's happening with you (fatigue, depression, joint pains, fluid in the lungs, etc.) is "just your imagination" -- they still have that old attitude about women.

Yet Lyme is an INFECTIOUS disease and there is a test for it. There is no excuse for the attitude, which amounts to medical malpractice.

In the late 70s I lived in upstate New York, not far from the hot spot around Lyme, Connecticut, where the disease was first identified. I got a tick bite that was probably the one which infected me. When the symptoms started showing up, they were never correctly identified by a train of doctors. One doctor thought I had chronic flu and viral pneumonia. It wasn't diagnosed till 1991, when a gay doctor who was a good friend of mine and an excellent diagnostician had a flash of intuition and ordered up a Lyme test. By then the physical effects of it had progressed quite a bit. Fortunately doxycycline had just come on the market and he put me on long-term treatment.

At that time, the knothead medical establishment was actually debating whether long-term antibiotic treatment should be allowed, because of the danger of drug resistance developing -- when it was the only thing that could remove Lyme from a person's system. After six months, my test had gone down to "undetectable." Most of the symptoms abated. But the after-effects in my joints have continued, and at age 72, it isn't pleasant.

Thorough treatment is important, because the spirochetes can burrow deep in joints and muscles. It isn't actually known if "undetectable" means that all organisms have been cleared from the body.

Lyme is now endemic in many rural areas of the U.S. -- anywhere that ticks can live. The organism, a type of spirochete, can only be transmitted into your body by a tick bite. The tick, in turn, picks up the organism from an infected animal that it has fed on. Various wild animals -- deer, mice, etc. -- harbor the organism. But even domestic pets can be infected and serve as vectors. People often don't know they've been bitten -- the baby ticks, called nymphs, are very tiny, but they can transmit as handily as grown ticks. So people who live in rural areas should get tested routinely. If you have pets that go outdoors, they too should be tested...because they can get bitten and be infected as well. An infected pet is a danger to an entire household.

Many rural localities enjoying development have tried to cover up the fact that they have Lyme around. They don't want to scare new residents away. In California where I live, Malibu, which is a township including a large rural area, resisted admitting that it had a high incidence of Lyme disease, because the city council was worried about "image." Lyme activists finally hammered the city down and got it to admit the problem.

Lyme is nothing to view casually. If undiagnosed and untreated, it can put you in a wheelchair -- even kill you. I encourage everyone to contribute something, if they can, for Gina's friend's treatment, and will hold thoughts for Frances' recovery.

Patricia, thanks so much for this informative and insightful comment. I'm so glad that you (finally!) got the proper treatment. And I'm grimacing as I read because everything you're describing re: misdiagnosis/lack of diagnosis sounds very much like what Fran and so many others have gone through...

It's just so scary to me that more people don't know how widespread Lyme is, and how much corporate "health care" has invested in saying Lyme isn't real/serious. The greed and corruption and cover-ups are almost as scary to me as the affects of the disease itself...

Jerame's parents live out in the middle of nowhere and have lots of dogs (seriously - too many!). Every time that I visit, I always make sure I triple check for ticks and fleas.

More people need to get this information...