Lyme disease victims seek more options
copyright the Chronicle July 2, 2014
by Bethany M. Dunbar
HOLLAND — Graci Rudolph was the director of an active nonprofit organization in New York, working long days. It was work she thrived on and a cause she believed in. She did public speaking and fund-raising, including television appearances.
Then one day — three years ago — she got bitten by a little insect, a tick, and got Lyme disease. Soon she could not sleep, her body became wracked with the most intense pain she has ever felt, she lost her physical balance and her ability to think clearly, or sometimes even get out of bed.
She wanted to die and says she can understand some Lyme disease patients’ impulse to commit suicide.
Ms. Rudolph, who now lives in Holland, is one of a sharply increasing number of people in Vermont who have contracted Lyme disease. According to the Vermont Department of Health, there were 37 cases in Vermont in 2002, and 623 in 2011. Most of the cases have been in the southern part of the state, but cases have been reported in every county except for Essex.
Lyme disease is not described as fatal, but some of the other diseases that could be carried by the same ticks in Vermont — among them deer ticks and dog ticks— can be.
For example, Rocky Mountain Spotted Fever, which is found throughout the United States, has a 3 to 5 percent fatality rate, according to the website lymedisease.org. Ms. Rudolph was bitten once and “co-infected.” With one bite she got not only Lyme disease but also Rocky Mountain Spotted Fever.
Although Ms. Rudolph is feeling much better, and the Rocky Mountain Spotted Fever is gone, she says she is not yet half of her former self.
Still, she felt strongly enough about trying to help others with Lyme disease that she managed to testify at a hearing on a bill that passed the Legislature this past session. The bill, H.123, allows doctors to use a long-term course of treatment with antibiotics without facing any professional sanctions.
Some patients have a port installed in their bodies so the antibiotics can get into their system more quickly, on a regular basis. The long-term treatment is so controversial that some doctors have got in trouble with their colleagues.
“Doctors who treat outside of mainstream guidelines can be medically sanctioned — which they haven’t been in Vermont,” said state Senator David Zuckerman of Hinesburg. He said there is one doctor in Vermont who has been providing long-term treatment for Lyme disease, and she was doing it quietly. He said Dr. Carol Gardner of Colchester said the legislation would help her not to worry about repercussions.
Vermont Commissioner of Health Harry Chen did not fight H.123, according to Mr. Zuckerman, but he spoke against the practice of treating Lyme disease with a long-term course of antibiotics.
The federal Center for Disease Control recommends against long-term antibiotic treatment. It cites experiments showing no improvement in cognitive abilities after the long-term treatments and possible bad side effects from the treatment, including infection of the port.
The bill that did pass is watered down from what proponents wanted, Mr. Zuckerman said. They wanted Lyme disease education for doctors in general practices and insurance coverage for the long-term treatments. They got neither one.
Mr. Zuckerman, Ms. Rudolph and others say there is growing evidence that this treatment has been shown to help. They say doctors in Connecticut and parts of New York have more experience with Lyme and have learned ways to deal with it. Mr. Zuckerman said information about Lyme disease is changing as more people contract the disease. So-called “Lyme literate” doctors know that, for example, people don’t always get a bull’s eye rash after being bitten with a tick that has Lyme disease.
“This bacteria is very similar in its constitution to syphilis,” said Mr. Zuckerman. He said it’s similar in that it’s very hard to kill and very hard to get completely rid of. Lyme disease is also hard to test for.
He said doctors disagree, and no one is keen to use lots of antibiotics in this day and age. But it seems to be the one treatment that works for certain patients.
“There’s this ongoing battle, and there’s very little research money,” he said.
Mr. Zuckerman knows the problems all too well. His wife, Rachel Nevitt, has Lyme disease.
Ms. Nevitt got Lyme disease about ten years ago. She does not know exactly when because she never had a bull’s eye rash and because she was misdiagnosed at first.
The disease is sometimes extremely debilitating, and it’s also difficult to diagnose. The accuracy of the tests depends on what kind of test is done and the timing of the test compared to the tick bite, Mr. Zuckerman said.
Ms. Nevitt and Mr. Zuckerman own an organic farm together.
“She used to work 16- or 18-hour days,” he said, and now she works a couple of hours a day. She often gets frustrated when she can’t do tasks that used to be easy.
Mr. Zuckerman said the costs have been astronomical. Some of the costs of medication have been covered, but not all. They are spending about $700 a month and total costs per month are about $3,400, he said. The specialist doctor they go to in the Hudson Valley of New York is not covered.
Ms. Rudolph said she has been lucky to have much of her treatments covered, but one of the nine antibiotics she takes every day, Mepron, is $1,800 a month. She has also started taking a homeopathic remedy called ledum that seems to be providing some relief from symptoms.
For her, the disease has had a devastating financial effect as she was no longer capable of doing the job she loved. Ms. Rudolph was the director of an adoption agency for older children and young adults called You Gotta Believe. She can still cite the statistics: 40 percent of the new homeless people are young adults emerging from foster care.
Ms. Rudolph used to be the kind of person who managed huge numbers of volunteers, and was a successful fund-raiser.
“I always thought of myself as a competent person,” she said.
Then it got to a point where what used to take her 15 minutes would take eight hours. Ms. Rudolph was bitten in Nashua, New Hampshire, on her wedding day and the tick was removed in Holland where she and her husband were honeymooning.
“I’m working my way back,” she says with a wide smile. But her journey back from being completely disabled by Lyme disease has been a difficult one, and it’s not over yet. One of the side effects for her has been a weight gain that she finds so embarrassing she refuses to be photographed. She said a lot of this is edema — swelling that is not from overeating but a side effect of the disease and medication. She has lost quite a few pounds from her highest weight, but she still has a long ways to go before she feels and looks the way she did before getting sick.
She and Mr. Zuckerman both said their biggest goal is to spread information and bust myths about Lyme disease in order to help prevent anyone else from getting it.
“There is no safe time a tick can be on you,” Ms. Rudolph said. The disease is in the tick’s saliva and can get into a bitten person’s system quickly.
“As soon as you are bitten, you are at risk,” she said.
She tells people to put on bug dope every time they go out into tall grass or woods. When you come inside, inspect your body thoroughly in the mirror, or have someone else help. Put your clothes into the dryer, and run it on high for ten minutes to kill ticks that could be on your clothes. Getting into the shower won’t kill them, she said, and you can’t always feel the bite.
Pets should all be treated with tick prevention medication, she said.
She said if you find a tick on you, pull it out with tweezers and save the tick in a plastic bag or jar. The tick can be tested immediately to see if it is infected. If it is, you can be treated sooner which could help the treatment be more effective.
Two organizations that have information about Lyme disease have conflicting information in some cases. Ms. Rudolph and Mr. Zuckerman recommend a group called the International Lyme and Associated Diseases Society (ILADS) as opposed to the Infectious Diseases Society of America (IDSA).
More information about how to prevent tick bites is on the Vermont Department of Health website www.healthvermont.gov including a booklet called, “Be Tick Smart.”
“Lyme disease changes your life in a lot of ways,” Ms. Rudolph said. “All of your relationships change. Lyme disease, like cancer and Alzheimer’s, is exhausting” not only for the patient but also for the whole family.
She said the politics of Lyme disease reminds her of the politics of AIDS. People are sometimes embarrassed to admit they have it.
“I outed myself right away,” she said. And she soon found a throng of people who understood all of her problems.
“This is going to be bigger than the AIDS crisis,” she said. “Like the AIDS quilt, there is a Lyme quilt.”
One of the changes Ms. Rudolph has made in her life is that she eats organic foods exclusively. Her immune system is not strong due to all the antibiotics. She has found that she can’t handle processed foods.
She was excited to plant a big garden this year and will put up a lot of her own food.
“I’ve gone back to canning and dehydrating,” she said, as a way to make eating organically affordable.
Ms. Rudolph said people are sometimes embarrassed to admit they have Lyme disease.
“It’s so scary and so big, and there’s such a level of denial,” she said.
Ms. Rudolph has created a recipe for bug dope that she finds effective:
Graci’s Tick and Insect Repellent Recipe:
4 oz. rubbing alcohol
6 oz. witch hazel
1 oz. organic vegetable glycerin
Organic essential oils: geranium, cedar, calendula, bergamot, grapefruit pink, grapefruit white, lavender, clary sage, juniper, eucalyptus globulus, tea tree, lemon, oregano, rosemary, thyme, balsam, and arnica.
Directions: I make a combination of these oils, varying the organic essential oils, up to 20 drops of the oils, (drop by drop), according to how much I want. Sometimes I have one predominant scent over the others. The scent is fresh and herbal. Mix and pour in a glass spray bottle. Shake before each use. Get ready to enjoy a bug free experience.
contact Bethany M. Dunbar at [email protected]