Living with Lyme
May 11, 2008Public health officials in Lansing have heard next to nothing of Lyme disease in Northwest Michigan, but the area is abuzz with stories of people battling the disease.
Lyme disease is truly nasty, confusing and complicated. And the politics surrounding this tick-borne disease are pretty much the same way. In fact, the intense medical controversy has kept state officials in the dark about proven cases in the area.
Dawn Brown, whose face flashed with pain through a recent interview, believes a tick at the Lake Ann Baptist Camp burrowed into her leg on a sunny day last May. An avid walker/runner and mother of three, she paid little attention to the scab on her leg while shaving over the weekend.
But three days later she felt as if a Mack truck had hit her.
I was fine in the morning, I did all my errands, got the kids to school. By noon I was on the couch and couldnt move. I called my husband and he sat on the couch, and I screamed in pain. Just him sitting on the couch made me hurt.
Her temperature climbed to 102. She sweated and shivered with chills. Over the next three weeks, her knees, ankles, wrists and elbows puffed up. Pain jumped from one joint to another. Unable to get a definitive diagnosis from area physicians, she surfed the Internet and found the Michigan Lyme Disease Association. She had all the symptoms of Lyme. Out of curiosity, she sent a note out to the neighborhood. Had anyone else been bit?
A panicked mom wrote back that she had just found a tick embedded in the ear of her 10-year-old daughter. She removed it and reported later that it had tested positive for Rocky Mountain spotted fever. The girl was treated and has been symptom free ever since.
Another woman down the street had eight telltale bulls-eye rashes all over her body. She acquired Lyme in Pennsylvania in her daughters backyard last June. Weeks later, she found a tick in her bedding, which she believes might have hitched a ride in her luggage.
A nurse at Munson had never even heard of Lyme disease. Everyone needs to educate themselves because it is not going away. It is here, and its getting worse! Brown said.
Alicia Rusch, an avid runner, believes she was bit around May of 2006 either in Benzie County or Saginaw where she lives now. She noticed rashes under her arms, and three weeks later, she suffered swelling and soreness in her knees and ankles.
In the next couple of months, I could barely get out of bed. I couldnt shower, I couldnt hold a cup of coffee, I couldnt turn a doorknob. It even affected my jaw. I couldnt chew very easily. It was nearly impossible to type or get gas. I had to change the doorknobs in the houseI still have days where its really hard.
Pam Maize, who lives off Vance Road, a few miles from Dawn Brown, believes she acquired Lyme in the fall of 2001 after a summer of camping in the Lake Ann and Interlochen area and going to Elberta beach. But she could also have picked up the tick on morning walks in a field near her house, which has since been built into a subdivision.
Maize said she never saw a bulls-eye rash, but knew immediately something was wrong. She suffered from fevers, stumbling, severe forgetfulness, joint pain, and a drooping eye, all symptoms of Lyme disease.
No one could figure out what was wrong with me, and then a friend told me that she knew of someone whose eye looked just like mine, and she had been diagnosed with Lyme disease, Maize said.
Pam Maize took two tests for Lyme. The first was negative, the second positive. The next year, Nick Maize, her husband, began having similar problemspain in his knees, elbows, back and neck. He kept going to a chiropractor, but the pain was stubborn. Ultimately, he tested positive for Lyme.
I dont think Nick really understood how badly it affected my brain until he got it too. We were sitting together in the doctors office, and we made up a game. Wed look at somethinglike a doorknoband try to figure out the word for it. Wed laugh, but it wasnt really funny.
Nicks good health has returned, but Pam is still suffering and near despair.
At least 10 people in the last year with Lyme symptoms have gone to naturopathic doctor Bridget Houston of Petoskey for help. She urged testing by a Lyme literate doctor and has often treated these patients with herbal remedies.
Ive seen people in wheelchairs, and Im happy to say most are walking around again. They get their lives back. Its really frustrating, too, because they keep insisting that Michigan doesnt have Lyme disease. Its not true, its here, said Houston, who owns Hummingbird Health.
TICKS AT SLEEPING BEAR
Although Lyme disease is the most common vector-borne disease in this country, deer ticks were found for the first time at Orchard Beach in Manistee in the summer of 2006. Last summer, ticks were found in the Sleeping Bear Sand Dunes on mice. Previously ticks were mostly confined to southern Menominee County in the Upper Peninsula and in southwest Michigan near the Indiana border.
It seems as if ticks are marching up the coast, said Jean Tsao, a Michigan State University professor who is heading up the project. Graduate student Sarah Hamer is leading the field research for her dissertation.
Tsao said the ticks found were not infected with Lyme, but once a population is detected, its only a matter of time. The risk to human infection is considered low, but people should still wear tick repellant and check themselves for ticks.
Linda Lobes, the president of the Michigan Lyme Disease Association, believes infected ticks have been in the sand dunes area for decades. Thats because she was bit there in 1989, although she didnt realize it right away.
At the time they told me it was a spider bite, and I believed them. But I had a rasha perfect bulls-eye on my thigh as big as a baseball. If I had known then what I know now, I would have taken a picture, she said.
Janice Ensfield said she was bit in 1984 and again in 2001 in her backyard near the Grand Traverse Mall. She wasnt diagnosed with Lyme until 2002. Before then, doctors diagnosed her with chronic fatigue syndrome. She lost memory and almost went blind in her right eye. Two other family members also tested positive for Lyme disease. Ensfield said the tick co-infected her with Babesiosis (a single cell parasite similar to malaria).
Ensfield believes she was bitten while picking fruits and vegetables. The family owns a 10-acre lot and she often sees deer tracks in the garden.
Most recently, freelance writer Lori Hall Steele tested positive two weeks ago for Lyme antibodies. Shes not sure where she was bittenit could have been Brighton or Traverse City. Shes wheelchair bound and fighting for her life, but hopeful that a regimen of powerful intravenous antibiotics will help.
Rheumatoid arthritis. Chronic fatigue syndrome. Fybromyalgia. Multiple sclerosis. Lou Gehrigs disease.
If you have Lyme disease, its likely you were misdiagnosed with one of these and its even more likely it has taken months or even years for an accurate diagnosis. Its also possible you were co-infected with a disease carried by the tick, such as Babesia, or Rocky Mountain spotted fever.
After I read and read and read on the Internet, I thought this sounded like Lyme, Brown said. But my doctor flat out said, we dont have Lyme in lower Michigan. You couldnt have Lyme. But that didnt make any sense. You could pick it up somewhere else. Or maybe a tick hitched a ride from somewhere else. A friend of ours in Macomb County, her uncle went hunting and brought back all the hunting gear she helped him unpack the car and she got bitten. Ticks travel, and not just on deer and birds.
When Nancy Allens knees swelled to the size of baseballs, doctors believed that she had rheumatoid arthritis and so did she. She tried everything to relieve the pain in her knees, including prescription drugs for arthritis, a vegan diet and bee pollen therapy.
The pain drove her to crutches and extreme exhaustion. She was on the verge of getting a wheelchair in April of 2006 when a girlfriend suggested antibiotic therapy. The treatment is based on the theory that rheumatoid arthritis is caused by bacteria.
I was at the end of my rope, Allen said. So my girlfriend who lived in Edmonton was going to see a doctor in Tennessee who knew about antibiotic therapy and we went there too. He had healed himself and his mother from rheumatoid arthritis in less than a year, and I thought its worth a try. So I did it. I had to eat more than normal to get back to my usual weight. I got better very gradually. It didnt happen overnight.
Allen realized her symptoms were closely aligned with Lyme disease and suspected that was the real cause of her joint problems. She and her husband had lived in New York City between 1996 and 2001, and often visited upstate New York where infected ticks thrive.
She sought out a Lyme literate doctor in Saginaw and received a mixed positive test result for Lyme. After a year, she was able to lose her cane and now feels about 70 percent back to normal. She still takes antibiotics and eats probiotic food to keep her body in balance. She also takes an antifungal medication periodically. Her blood is tested often to ensure the medication isnt damaging her liver.
I thought once youre healed, youre healed. Thats not the case with Lyme if its not treated immediately. I probably had it for five years before it was diagnosed, so it goes deeper into your cells and its harder to eradicate. My doctor said youll never eradicate it completely. You have to live in balance.
UNDER OUR SKIN
Lyme is a complicated disease and thats what makes it so hard to diagnose and intensely controversial to treat. So controversial, in fact, that a documentary Under Our Skin just premiered at the Tribeca Film Festival to a packed house, with activists passing out lime green plastic bracelets and pamphlets on Lyme.
In the documentary, very sick patients looked outside the medical mainstream for treatment. The same is true for the patients interviewed for this article. But to understand the controversy, you need to first understand a little about the disease.
Lyme is caused by a bacteria called Borrelia burgdorferi. The bacterium is a spirochetesimilar to what causes syphilisthat looks like a squiggly snake.
A tick picks up the infection from mice, birds and chipmunks. At a certain stage, the tick needs a bigger host and will jump onto a deer, human or dog. Doctors agree that a positive blood test doesnt necessarily mean that you do or dont have Lyme. The test must be looked at in combination with symptoms. (Dawn Brown, for example, still hasnt tested positive for Lyme. She said that concerns her, but adds that 50 percent of people diagnosed with Lyme havent tested positive nor had the telltale rash.)
Doctors also agree that very early treatment with two weeks of an antibiotic is absolutely necessary. The bacterium, at that point, is localized and easy to zap.
Left untreated, the bacterium travels through the blood and inflames the joints, nervous system, and even the brain.
Another controversy is the lab used. Lyme-literate doctors prefer a California lab called IGeneX , but mainstream doctors are skeptical of its results.
The two camps differ on whether Lyme is chronic. Lyme literate doctors believe that it is, and, unless its caught quickly, can afflict a person for life. They believe that the spirochete makes a hard shell or cyst around and reproduces inside. Antibiotics do not affect the cyst. Months or even years later, these cysts can break open and cause symptoms again.
A Lyme-literate doctor is much more aggressive with antibiotics, prescribing them for much longeryears evento treat Lyme disease.
From the mainstream medicine viewpoint, nearly all cases of Lyme can be cured with four weeks of antibiotics. Critics also say that when patients dont respond to antibiotics, they doggedly cling to the Lyme diagnosis. They believe that patients who are suffering long-term might well have something else wrong with them unrelated to the Lyme infection. They worry that long-term antibiotic use will make the patient drug resistant if they get sick with something else.
They also worry about the expense and danger of prolonged IV antibiotic treatment.
After Linda Lobes was bitten in the sand dunes area, she suffered seizures and would lose feeling in one arm and then the other.
My muscles went concave, I had lesions on the brain, and debilitating migraines. I lived in the closet because noise and light would make it ten times worse, she said.
Doctors were at a loss of how to help her. Over a three-year period the diagnosis shifted from epilepsy to multiple sclerosis to Parkinsons disease to chronic fatigue syndrome to fibromyalgia. The last doctor threw up his hands and told Lobes she was a hypochondriac.
Finally, Lobes went to a Lyme-literate doctor by the name of Joseph Natole, Jr., who diagnosed her with Lyme disease and immediately put her on a regimen of antibiotics. She said she finally got her life back.
Yet Dr. Natoles approach would cost him dearly. The Michigan Medical Review Board charged him in the mid 1990s with malpractice for prescribing antibiotics beyond the recommended 28 days to chronic Lyme patients. The judge found him innocent, but the board sanctioned him with a $50,000 fine and suspended his license for three months. He was allowed to practice again on the condition he not treat Lyme patients nor even say the word Lyme in his office.
That was the biggest misjustice there ever was. It kills me to this dayit was a witch hunt. It was wrong, and Ill never forget it. He saved me. He saved my life. I love him to death, Lobes said.
Natole appealed the sanctions, and the Lyme Alliance of South Central Michigan filed an amicus brief. Attorney Ira Maurer wrote that the case could potentially eliminate the effective treatment for chronic Lyme disease.
The Alliance later circulated a petition stating that, Lyme disease can and does exist as a chronic illness with persisting infection, and that the disease is greatly underdiagnosed and undertreated.
The petition demanded that, Physicians who are on the front lines of Lyme disease patient care not be harassed, persecuted or made to fear for their medical practices because they do not adhere to the conservative short term care for Lyme disease.
A decade later, there are only a handful of Lyme-literate doctors in the state. The fear of prosecution is so great that the Lyme-literate doctor in Saginaw, who is treating some patients in this article, refused an interview.
The other doctors are petrified. This isnt a Michigan issue. Its an issue across the United States. Doctors are losing their licenses over this, Lobes said.
All of this brings a cost to Northern Michigan. Its clearly not on the states radar.
We really dont get any cases from that area at all, said Pamela Roy of the Communicable Disease Division of the Michigan Department of Community Health. If we dont know about it, we cant educate people that something is happening and send out a message on how to protect yourself.
The cases, perhaps, have not been reported because not all standards have been met for a formal report. The patient, for example, may not have tested positive for Lyme disease as in Dawn Browns case.
But its also likely that the Lyme-literate doctors are trying to keep a low profile to avoid the same sanctions suffered by Dr. Natole.
If Northern Michigan is any indication, the system is broken. People suffering from Lyme disease have invested their trust in the very few Lyme-literate doctors in the state and leave the area for treatment. Their numbers have apparently gone unreported.
Yet there is shifting on the political landscape. Last week, the Infectious Diseases Society of America, which has refused to recognize Lyme as a chronic disease, agreed to review its guidelines. They now recommend 28 days of antibiotics and asserts theres no proof that long-term antibiotics can cure chronic Lyme diseaseif it even exists, according to a May 3 Associated Press article.
Charlie Wunsch, a Traverse City resident, is not convinced that pharmaceutical antibiotics are the answer for chronic Lyme, and hes sought alternative remedies to keep the bacteria at bay. He was bit by a tick in his Minneapolis backyard shortly before moving to Traverse City in June of 2007 and was bedridden by July. Every joint on the right hand side of my body was in incredible pain. My ankles were swollen, I was dopey and crabby.
Wunsch was originally misdiagnosed as having a staph infection and was given an ineffective antibiotic, so his symptoms persisted. At that point he turned to natural remedies, with which he had previous experience because his wife had worked as manager of a natural foods cooperative for 20 years. He considers himself very fortunate to have run across The Top 10 Lyme Disease Treatments. He credits the success of managing his Lyme to Rosners book.
When the mainstream medical community abandons people, or at least fails to support them, then patients will seek other sources of treatment and act as their own advocates. I mean, when Im faced with a profession that doesnt acknowledge that the condition I suffer from even exists, then whos better suited to look after my health than I am?
He is quick to add that he visits his local doctor regularly and is well satisfied with the care provided for all other aspects of his personal health; he simply tackles the Lyme treatment plan on his own.
Antibiotics, said Wunsch, knock out most of the bacteria, butlike any diseasethe resistant bugs shift shape and rebound stronger than ever after surviving antibiotic treatments.
After a second dose of pharmaceutical antibiotics in September, Wunsch altered his strategy. His goal: to make his body a miserable place for the Lyme spirochetes to live. He did this by creating a high pH or base environment and by avoiding taking in Vitamin D, whether by eating foods or through sunlight on his skin.
Wunsch also works to build his immune system: for this he eats mostly whole foods and supplements with magnesium and zinc. To control toxins in his system he takes a micro dose of lithium orotate (to shield his brain from the bacteria) and milk thistle (to protect his liver). Intermittent series of mangosteen juice, colloidal silver, and systemic enzymes help kill bacteria and reduce inflammation symptoms. He also relies on intensive exercise followed by saunas and hot Epsom salt baths to help sweat out the toxins that result from this successful regimen of alternative antibiotics.
He still suffers occasional brief episodes in which his joints rock with pain, but generally enjoys excellent health.
I really do feel incredibly blessed. I figured out what I had early and I feel like Im on top of controlling symptoms now, he said.
Ensfield said she was on antibiotics for two-and-a-half years, but her doctor in Saginaw got Lyme and had to give up his practice. Now she takes herbs and uses a low-cost machine that emits electromagnetic waves, which she believes kills the bacteria. I can walk now. I just cant walk very far.
Naturopathic doctor Bridget Houston agrees that antibiotics arent for everybody: The standard practice is to load them up on antibiotics. For some people it works, but for others, it weakens their immune system even further. They dont progress, they dont get better.
If Lyme isnt caught quickly, the antibiotics help, but they cant undo the permanent damage to the body or brain. Nick Maize considers himself lucky. He credits antibiotics for his nearly 100% rebound, but they havent worked well for his wife Pam.
Thats the thing about Lyme. There are so many different things to treat it. What works, you dont know. For me, it was a matter of a few different types of antibiotics. Maybe it was my own immune system. The whole thing is just perplexing to me. Its so hard to understand.
Ticks have been found along the Lake Michigan coastline, and field researchers plan to check inland areas this summer. The risk of getting bit is low, but be sure to protect yourself.
Wear long pants and light-colored clothes so you can see ticks better.
Use bug spray with DEET.
Do a tick check on everyone you love including animals.
Check yourself closely, especially in places where you dont use repellant, such as your hairline and under your arms.
Properly remove the tick with fine-point tweezers. Grab the ticks mouthparts next to the skin and gently pull out the tick.
Save the tick and preserve it with an alcohol cotton ball. The state of Michigan wants to see it. For directions on how to ship, go to www.michigan.gov.