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Lyme sufferers say disease is widely misunderstood

Local Lyme sufferers say disease is widely misunderstood

Lane Poor, owner of Main Street Gallery in Warren, is writing a book about Lyme disease that addresses what he perceives as the medical community’s failure to properly diagnose and treat the infectious disease.
Lane Poor, owner of Main Street Gallery in Warren, is writing a book about Lyme disease that addresses what he perceives as the medical community’s failure to properly diagnose and treat the infectious disease. Photo by Richard Dionne.
Christin Peckham Lynch has been to hell and back. Actually, in many ways she hasn’t yet returned.
The Rumford resident rattles off the numerous ailments from which she’s suffering that will have you scrambling for the nearest medical dictionary: 
• Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), a disease of the nerves
• Dystonia, a movement disorder that causes the muscles to contract and spasm involuntarily
• Occipital neuralgia, a condition characterized by chronic pain in the upper neck, back of the head and behind the eyes
• Fibromyalgia, a disorder characterized by widespread musculoskeletal pain, fatigue and tenderness
• And more: rheumatoid arthritis, chronic fatigue syndrome, cognitive issues, severe disc and joint deterioration ...
Yet the root cause of her illness was another disease from which she’s, ironically, recovering.
“That’s all because my Lyme disease wasn’t treated correctly,” said Ms. Lynch. “I went eight and a half years untreated.”
If detected early and treated early with antibiotics, a person who contracts Lyme disease may experience nothing more than minor flu-like symptoms such as joint pains, chills, fever and fatigue before they readily recover. The problem is, even though it’s been more than 30 years since the infectious disease was officially identified, Lyme is still a widely misunderstood and often misdiagnosed ailment. When left untreated, the bacterium spreads through the body and causes severe headaches, damage to the nervous system, arthritis, brain swelling, memory loss, cardiac problems and more.
With its abundant deer population and wetlands, The East Bay and Southcoast area is a hotbed for Lyme disease, particularly in Westport, Little Compton and Prudence Island. (One study found that 75 percent of Prudence residents have been infected with Lyme.)
Ms. Lynch believes she first contracted Lyme in 1991 in Pawtucket. Like many sufferers, however, she has no recollection of getting bit. 
“Everyone told me I had ringworm,” she said, noting she had the classic bull’s-eye rash pattern on one leg and her lower back. “A dermatologist gave me a topical cream and sent me on my way.”
That led to a false sense of security and for years she suffered from worsening neurological problems and new ailments — including serious cardiac problems — that kept popping up. She was misdiagnosed on numerous occasions.
“It’s so vague because it can be masked as anything. It’s scary. They kept telling me I had this, that and the other thing. I had doctors that were insistent that I had MS (multiple sclerosis),” said Ms. Lynch, who was also once told she could be experiencing early stage breast cancer — a disease from which her sister died. In 2007, when she was just 39, she received a cardiac catheterization — another error, she said.
Shortly after, however, she saw a specialist in Connecticut, who finally diagnosed her with Lyme disease and prescribed a cocktail of antibiotics. Since then she’s seen “dramatic improvement” in her regular blood work for Lyme disease. However, Ms. Lynch is still suffering from her other Lyme-related ailments — particularly the CIDP, which leaves her physically and mentally exhausted.
In most cases, a tick must be attached to your body for 24 to 36 hours to transmit Lyme disease. As a result, prevention and early detection are critical.
“It’s frustrating,” she said. “There are so many things that I have. My whole thing is that people get treated properly. It’s not even that they get treated soon, but properly. Be aggressive at the beginning.”
‘The three Bs’
Lane Poor nearly died from the Lyme disease he believes he got from a tick bite in Little Compton 32 years ago, but lay dormant in his body for years. Six years ago he was treated for depression — a common effect of untreated Lyme — and has also experienced insomnia, memory loss, cardiac problems and frontal lobe headaches. 
“I felt like I had fallen off a cliff and I was in a canyon that had straight walls and there was no end. It was hell,” he said.
These days he’s never felt better, but Mr. Poor hasn’t left Lyme disease behind; he’s on a mission to increase awareness and understanding of the disease. The 69-year-old owner of Main Street gallery in Warren said the disease is dangerous precisely because it’s so misunderstood by the medical community — particularly the Infectious Disease Society of America (IDS).
“It’s an emerging disease. We’re at the beginning of what it’s really all about,” said Mr. Poor. “(With doctors), a lot of it’s fear. It’s such a complex thing they can’t get their heads around it.”
To help remedy that, this “not-so-patient patient” is writing a book about the disease: “Do You Know the 3 Bs of Lyme Disease?” He’ll be posting chapters on an online blog before it’s published in book form. The main thrust of his research is that most doctors are looking at the disease in too limited a fashion.
“When somebody asks me, ‘Do you have Lyme disease?’ I say, ‘Which component are you talking about?’” said Mr. Poor, adding that he wished people didn’t even refer to the disease as “Lyme.” Instead, they should focus on the “three Bs” of his book’s title: babesia, bartonella and borrelia. Without getting too technical, they’re three distinct bugs he said need to treated differently.
“People typically say Lyme and the average doctor will think you’re talking about just one bacteria, which is borrelia burgdorferi,” he said. “It’s not so much we’re looking at (Lyme) the wrong way but the way we look at it creates fog, because Lyme in some minds covers only one thing. But in reality with the symptomological stuff, it’s a very complex cocktail of really nasty bugs. If you try to look at it through the lens of just one bug, you’re missing a lot of it.”
Nearly all Lyme sufferers he’s been in contact with have had the co-infection babesia, he said. “It’s a parasite that lives within the red blood cells and really messes up what they do — taking virtually the entire foundation of your immune system away. With either or these — babesia or bartonella — if you have a compromised immune system, it can actually kill you,” said Mr. Poor, noting that there was a fatal case of babesia only last year in Rhode Island.
“The deniers say that just because those bacteria and parasites are in the gut of the tick doesn’t imply that the person they bite is going to get them,” he said. “My response to that is, ‘You can play Russian roulette with three bullets in the chamber. Go ahead and pull the trigger. How long are you going to leave that tick on there and treat it for borrelia and forget the other co-infections?”
Paucity of support
Mr. Poor said those infected with Lyme disease need to reach out for support. The disease is not only misunderstood by the medical community but by friends and family members as well, he said. “Often families who are not physically close to the person who has Lyme have no idea what that person is going through,” he said, adding that some believe there are pills that can cure the disease. “There is no silver bullet for Lyme.”
Ms. Lynch knows that all too well. Some family members and friends have even accused her of faking her illness. “They don’t understand. I’m not getting treated for Lyme — it’s the other stuff,” she said, adding that well-meaning loved ones have told her she’d feel better if she just “worked out” more. 
“No I won’t. I’ll feel worse,” said Ms. Lynch, who takes medication intravenously at home and plans her schedule around proper rest. “I was going out with friends Saturday, so I stayed home Thursday and Friday.”
Unfortunately, there’s a general lack of support systems for Lyme. Mr. Poor once attended gatherings of the Westport Lyme Support Group because it was the only one in the area, but that group has since disbanded. “There’s a real paucity of support for this,” he said.
Even if there were local support groups, Ms. Lynch’s not sure how successful they’d be. “Most people aren’t feeling well enough to go to a support group,” said Ms. Lynch, who seeks online support and often gets calls from strangers who were referred to her. “It makes me feel better to talk to people who are looking for advice.”
Gaining ground on awareness front
Despite their frustrations with the medical establishment, however, some people touched by the disease say progress is being made on increasing awareness. Barbara Smith of Westport is one Lyme sufferer who gets the word out whenever she can. 
Barbara Smith (right) and Janice Dey attach a green ribbon to a mailbox during a Lyme disease awareness campaign in Westport in May. Ms. Smith contracted the disease as a youngster, got better, and was infected anew in 2005 and 2008. “I’ve been walking around with it for a long time,” she said.
“The mindset of the medical community in this area is a travesty. It’s more than an epidemic, it’s a pandemic,” said Ms. Smith, adding that there are people who are bankrupt because they don’t have a diagnosis. “Doctors are just pooh-poohing this.”
In May she partnered with Janie Day, another woman who has battled Lyme, to launch the “Paint Westport Green” project in which they asked residents to display green ribbons to bring attention to the disease which has taken a terrible toll in their area.
“It was great. The whole town of Westport was green and people from other towns contacted me,” said Ms. Smith, a clinical social worker who’s organized a Sept. 9 talk about Lyme disease (see related story). 
She and others are heartened to see signs of a bigger national discussion about Lyme. Mr. Poor credits U.S. Sen. Richard Blumenthal — the former Connecticut attorney general who sued IDS over its Lyme disease guidelines — and U.S. Rep. Jack Reed for holding hearings on Lyme to bring more attention to the epidemic. “The more light we can shed upon this the better,” he said.
“It’s all about politics, big pharma. But mostly it’s about closed minds,” said Ms. Smith. “We have to keep up with the education and the political action. Some people are too sick to fight.”
Author recounts story
Katina Makris, a veteran homeopath and author, will share her 10-year healing journey from misdiagnosed Lyme disease when she appears in Westport Sunday, Sept. 9, for an event hosted by Southcoast Lyme.
The program will be held from 6-8 p.m. at the Westport Grange, 937 Main Road, Westport. Admission is $5, although no one will be refused admission if they cannot afford to pay.
Ms. Makris is author of “Out of the Woods: Healing Lyme Disease — Body Mind & Spirit,” written by a health care practitioner from the vantage point of a patient. Ms. Makris lends personal and professional experience on mending the body, mind and spirit from the ravages of chronic Lyme disease. She’ll share insights into the Lyme paradox and tools for regaining one’s health.
Ms. Makris has worked in natural health care for 27 years, as a classical homeopath and intuitive healer. She’s a former newspaper health columnist and a past board member of The Council for Homeopathic Certification. She is a graduate of Duke University and The Stillpoint School of Integrative Life Healing.
Ms. Makris was stricken with a mysterious “flu” at the peak of her career. Only after five years of torment — two completely bedridden — and devastating blows to her professional and family life was her illness finally diagnosed as Lyme disease.
For more information contact Barbara Smith at sanctuarysmith@charter.net.
For information on the symptoms of Lyme disease and steps you can take to prevent the infection, visit www.aldf.com. Lane Poor’s “3 Bs of Lyme” Facebook page is at www.facebook.com/The3BsOfLyme.