BREWER, Maine — It started with flu-like symptoms and progressed steadily. Fevers and rashes and aching joints followed. For four years, Ralph and Lisa Jordan of Brewer took their daughter to a growing list of doctors. The were seeking an answer to a painfully simple question.
What’s wrong with Sally?
It took nearly four years to find that diagnosis. Four years of pain. Four years of increasingly disabling pain. Four years during which an A-student became unable to last for more than an hour or two in a classroom and slept for much of the day. She had to stop cheering and playing basketball. She had to stop dancing.
Eventually, the mystery illness began having neurological effects.
“I was scared because I didn’t know what was going on,” now 11-year-old Sally said softly during a recent interview. “[One day] I was bending down to grab my pencil and I couldn’t pick it up because I lost feeling in my fingers. And then I lost feeling in my entire arm. I couldn’t write.”
Lisa Jordan said her daughter came to her on another occasion, complaining that she could hold her pencil fine, but when her brain told her hand to write, it wouldn’t obey.
Today, Sally is a fifth-grader at Brewer Community School. She is recovering. She has resumed dance classes. And she’s smiling again.
But for four years, there wasn’t much to smile about. Sally was sick. She thought nobody could cure her. Then, in December, she met a controversial Connecticut doctor who affirmed the suspicions that Ralph and Lisa Jordan had been living with — without medical confirmation — since their daughter was seven.
Sally has Lyme disease.
Sally’s message to others: You might have Lyme, too. You just might not know it. Yet.
A steady decline
Sally first became ill back in 2008. After several tests and some blood work, Ralph and Lisa Jordan asked doctors to test for a specific illness.
“We got a Lyme test because of some of the symptoms that she was having, and we thought that maybe she had Lyme, where we live in the country, we raise goats, she does horseback riding, she’s out in the woods all the time,” Lisa Jordan said.
Lyme disease is carried by deer ticks, which thrive in wooded, grassy areas. And though some people infected with Lyme disease see their tick bites and notice a bull’s-eye rash pattern, many more don’t. Sally doesn’t remember ever seeing a tick or having that rash.
The Lyme test came back inconclusive, and at some point doctors told the Jordans they suspected rheumatoid arthritis. For much of the next three years, that’s what Sally would be treated for, her parents said.
“For seven months [her health] failed miserably, but nothing was done because of her diagnosis of arthritis, and fever goes with rheumatoid arthritis,” Lisa Jordan said. “But nothing was working and nobody was helping us at that point.”
In 2009, Sally ended up with a severe kidney infection and spent four days in the hospital. Two weeks of antibiotics seemed to cure that ailment. The relief was short-lived.
Adding to the confusion: An appointment with a specialist in Boston showed that Sally didn’t have rheumatoid arthritis at all. Instead, a kidney infection or an infectious disease was suspected. More antibiotics followed, and again Sally rebounded through the late spring of 2009.
“We got our child back,” Lisa Jordan said. “We thought we’d conquered it.”
They hadn’t.
The worst is yet to come
After a couple more years of frequent doctor visits and persistent aches, rashes and bouts of fever, Sally’s condition rapidly deteriorated in September 2011.
“It hit with a vengeance,” Lisa Jordan said. “She had a couple vaccinations, and right after that it wreaked havoc in her body. She was pretty much bed-ridden. [Her] sore throat came back. Cough came back. Rashes, fevers, pain everywhere.”
And mentally, Sally had begun to slip as well.
“She could no longer read and write. She went from an A student to a student who couldn’t do work,” said Lisa Jordan, a kindergarten teacher. “It was neurological now.”
Even the most simple instructions had to be given step-by-step — “Go upstairs. Sit on the bed. Put on your socks.”
Sally said that she had grown so accustomed to being sick, she didn’t think “healthy” was an option.
“[It was] really bad,” she said. “[I felt] scared. Alone.”
Eventually, Ralph Jordan made a phone call that changed everything.
“By happenstance, I called my eye doctor. His wife had Lyme disease for about a year, but it went undiagnosed. [I asked him], ‘How did you actually get a diagnosis?’” he said.
The doctor put the Jordans in touch with Dr. Beatrice Szanter, who told the Jordans who to see, what questions to ask and what tests to request. After one appointment with another doctor, they were given the name of a particular specialist who might be able to help.
His name: Dr. Charles Ray Jones.
Finally finding answers
In what Lisa Jordan calls “the Lyme world,” Jones is a rock star. According to published reports, he has treated thousands who are afflicted with the disease. He also has many powerful critics and has faced legal and professional sanctions in the past.
The Jordans traveled to Connecticut to see Jones in December. Lisa was impressed that he knew everything in Sally’s 500-page file without referring back to it. Sally was impressed that the doctor said the words she’d waited so long to hear.
“[He said], ‘You’re fixable,’” Sally said.
Sally said the hours she spent with Jones in Connecticut were painful, with Jones poking and prodding to find out where the infection was causing the most problems. From the top of her head to behind her ears to her joints, Jones pointed out the effects Lyme was having on Sally.
“It wasn’t that fun, but he’s the one who actually saved my life,” Sally said. “So I’m very thankful for that.”
Today, Sally is still on the mend. She’s taking about 30 pills a day, including many to help her system flush out the antibiotics that she’s been prescribed. Her diet — as well as that of her parents — has also changed.
“We’re on a gluten-free, dairy-free, soy-free, sugar-free diet,” Lisa Jordan said.
Sally said she’s rarely tempted to eat outside of her diet, but there are a couple of things that she’d like to taste again.
“[I miss] nothing, because I knew if I ate it it would make me feel bad,” Sally said. “But what I really do miss is ramen noodles and macaroni and cheese.”
And while Sally may be on antibiotics for one to three years, her parents say that she’s making steady progress. Sally agrees.
“[I feel] a million times better,” Sally said.
And now that she’s feeling better, she’s eager to help others.
On Tuesday, March 20, the Jordans will join Szantyr and nurse Constance “Happy” Dickey for what’s being called a “Tick Talk” at the Brewer Community School’s performing arts center. The program will last from 6:30 p.m. until 8 p.m., and speakers will talk about Lyme disease awareness and prevention.
“Our mission is, ‘one person with Lyme disease is too many,’” Lisa Jordan said. “We need to educate the community and prevent it. People need to be aware that they need to check their dogs, their kids. Just playing in their backyards [can put them at risk].”
Although it involves talking about her health issues, Sally is eager to pitch in. Because Lyme disease isn’t just about Sally Jordan.
It’s about her dad, Ralph, who has also been diagnosed. It’s about her little sister, Lydia, whose tests are inconclusive. And it’s about thousands of others who may be struggling with health issues that nobody can explain.
“[I want] to help raise awareness and help prevent people from being bitten and diagnosed,” Sally said. “And not having them suffer like I did, and the other people that have Lyme [disease] did.”
For more information on ticks in Maine, go to http://umaine.edu/ipm/ipddl/publications/5047e/.
More and more I hear stories of people being misdiagnosed , what people need to learn is to stand up to doctors and fight. You have to be your own advocate and speak up and push them till you get an answer, when it comes to lyme disease , after so many months I would have requested the test to be run again, Cause sometimes it may not be bad enough to read properly. Just resently , my sister was diagnosed with upper respiratory infection , she had to suffer a week and get progressively worst before she forced the doctor to look at her xrays which were misread….she had pneumonia . I just don’t feel doctors care anymore cause of all the laws and rules are being pushed on them, the over abundance of useless paper work, so they don’t have the time to spend with a patient. I myself have and always will fight with my doctor till they listen. Fed up with being misdiagnosed . There is plenty of information on the internet that you can do your own research if you can’t get results that you are looking for. I did about 6 months ago and proved my P.A. wrong in her diagnose. And it wasn’t the first time. So learn to speak up , don’t settle for what they say, just because they have M.D. behind there name, dosen’t mean they know everything, it is impossible for anyone to know it all.
My theory is that all the doctors that just barely made it through medical school come to Maine because that’s the only place they can get a job.
I have heard many stories from people about the incompetence of Maine doctors, and I have experienced it first hand.
This child should not have suffered so long. Neurological symptoms, rash, fevers, and joint pain, in Maine? Where Lyme is so prevalent? And often doesn’t show in tests? For four years? Treat for Lyme.
Doctors in Maine need to catch up. The risk/incidence maps above are woefully inaccurate as most people go undiagnosed.
Best wishes for a speedy recovery, Sally.
It appears that without an accurate test, most MD’s won’t touch it, and even then they commonly do not proscribe enough antibiotics.
Here’s an article that I copied – the link doesn’t work so its a long post. Hope not too long.
Lyme disease survivor Eric Harvey’s remarkable recovery
Doctor’s diagnosis brings him back from brinkBy Beth Staples | May 13, 2011
Bedridden in July 2009, Eric Harvey occasionally opened his eyes late at night while darkness enveloped him.Otherwise, he went months with his eyes shut. The vertigo he was experiencing made it impossible to look at the faces of his loved ones, read or watch TV.
Earlier that month, Harvey had collapsed in his backyard and his wife, Maura had rushed him to the emergency room.In June, vertigo had forced the adult probation and parole officer for the state of Maine to stop working.
Formerly a picture of health, Harvey was barely able to stand. The body-builder and state high school wrestling champion barely tipped the scale at 160 pounds, 50 fewer than what he normally carried on his muscular 210-pound frame. He shuffled as though he had Parkinson’s disease.”People didn’t recognize me,” he said. “I could walk by people in the hospital that I had known my whole life and they had no idea who I was.
“Harvey’s knuckles were raw as, eyes shut, he used the back side of his hands to maintain contact with walls to maneuver around the home he shares with Maura and their two daughters. The joint pain and muscle pain were so excruciating that Harvey did not want to be touched. He couldn’t raise his arms or dial a phone and Maura mashed his food so he could receive nourishment.”
If it wasn’t for my family and my faith … they kept me going. I wanted to die,” Harvey said.
And some medical professionals indicated that he just might. “More than one doctor told me that I was dying and they didn’t know why,” he said.
In June 2008, Harvey developed vertigo and began seeing doctors and specialists to determine the cause. From years of weight lifting, wrestling, coaching wrestling and being a Belfast police officer, Harvey was well aware that he had pre-existing injuries. He also knew that in 2004, he had Bell’s palsy and that in spring 2008 he was bitten by a tick.
Bell’s palsy, a disorder of the nerve that controls movement of facial muscles, is believed to be due to swelling of the nerve where it travels through bones of the skull. Treatment, according to medical websites, is typically not needed and symptoms frequently improve quickly and go away completely within a few weeks to months. Lyme disease is cited as one possible cause.
During tests, an MRI revealed a spot on his brain. As Harvey’s condition worsened, 18 specialists from Belfast to Boston examined him. Several, he said, indicated Lyme disease might be the culprit.
A bacterial mass, which grew to the size of a golf ball on the side of his neck, was removed. Again, the possibility of Lyme disease was mentioned.
While he became more and more disabled, Harvey said, “I imagined myself back at the gym working out and playing with my kids.”During those hours lying flat on his back, he said he also pictured himself back at work.”You truly learn what’s important when you are dealing with illness. I told Maura that I didn’t think that many people liked me,” he said with a laugh, while talking about the overwhelming support he received from family, friends, co-workers — and even people he had arrested.
In summer 2009, Dr. Richard J. Dubocq of Lincolnville diagnosed Harvey with Lyme disease and in August 2009 Harvey began receiving intravenous antibiotic treatment.
And Harvey began to get his life back.”In the medical community, treating long-term Lyme disease can be controversial,” said Dr. Dubocq. “To date, I have not actively participated in the Lyme disease treatment debate, I simply treat patients and get them better.”
According to the Mayo Clinic, Lyme disease, the most common tick-borne illness in North America, is caused by the bacterium Borrelia burgdorferi. Deer ticks can spread the bacteria when feeding on blood of animals and people.Also according to the Mayo Clinic, before the bacteria can be transmitted, a deer tick must take a blood meal, or 36 to 48 hours of feeding. A 14- to 21-day course of oral antibiotics is a standard treatment for early-stage Lyme disease.
Dr. Dubocq, though, said he believes it is a fallacy that a tick needs to be attached for that amount of time to spread the disease. In addition, he recommends a minimum of six weeks of treatment. Anything less than that, he said, is a roll of the dice.
The family physician began learning more about, and then treating, Lyme disease after his wife was bitten by a tick more than 12 years ago while visiting Monhegan Island.
Dr. Dubocq said his wife found a tick attached to her while showering that same day, squeezed it to remove it and flushed it. She received two weeks of Doxycycline and thought that was the end of it.
Over the course of the next year, though, Dr. Dubocq said his wife experienced bizarre symptoms and saw a multitude of physicians and specialists, to no avail. She read an article about Lyme disease in a women’s magazine and the proverbial light bulb went on. Once a specialist in New York diagnosed her, Dr. Dubocq said she was successfully treated.”As primary care physicians, we depend on specialists to guide us and most of the time they are right on,” he said.One problem, he said, is that infectious disease specialists commonly treat Lyme disease for 30 days, no matter how advanced the disease. If symptoms persist, he said that patients are said to have post-Lyme disease syndrome and many physicians are hesitant to go beyond what has been the recommended guidelines of treatment.
Diagnosing Lyme disease, he said, is done through an assessment of clinical symptoms rather than test results, as test results are routinely incorrect, both with false negatives and false positives.”Tests are inaccurate,” Dr. Dubocq said. “They cannot prove or disprove Lyme disease. That is a hard pill to swallow for clinicians because we like things to be definite.”Symptoms of Lyme disease may include a rash that looks like a bull’s-eye, fever, chills, fatigue, body aches, headache, joint pain, neurological problems, including Bell’s palsy, as well as limb numbness or weakness, impaired muscle movement, irregular heartbeat, eye inflammation, hepatitis and severe fatigue.
Harvey had nearly every one of the symptoms, minus the tell-tale bull’s-eye.
Advanced stages of Lyme disease can reportedly cause long-term joint inflammation, heart rhythm problems, decreased concentration, memory disorders, nerve damage, numbness, pain, paralysis of face muscles, sleep disorders and vision problems.”
It does disable you over time,” said Dr. Dubocq.People with advanced Lyme disease, he said, are sometimes misdiagnosed as having fibromyalgia, chronic fatigue syndrome and depression.
Dr. Dubocq said in addition, there is debate about the antibiotic tetracycline, which can be used to treat Lyme disease. While physicians routinely prescribe it for a year or more for teens to treat acne, Dr. Dubocq said those same physicians may balk at prescribing it for Lyme disease, saying they worry that patients that will build up resistance to it.
Dr. Dubocq, who graduated in 1980 from Albert Einstein College of Medicine in New York and is a board certified family physician with added qualifications in geriatrics, highly recommended the International Lyme and Associated Diseases Society website (ilads.org), including for clinicians who want to take a course to learn to treat Lyme disease.
Veterinarians, he said, are the Lyme disease experts. “In the veterinarian world, it is not controversial,” he said. “They treat it and the dogs get better.”
Prior to moving to Linconville, Dr. Dubocq practiced for decades in the Waterville area. There, he said, peer primary care physicians routinely recommended their patients to him to be treated for Lyme disease.
Harvey said his Lyme disease diagnosis was confirmed by Dr. Chandra Swami in Pennsylvania, who reviewed his file. Dr. Swami’s nurse practitioner came to Harvey’s home.Dr. Swami treated patients who appeared in the documentary “Under Our Skin.”The film, produced and directed by Andy Abrahams Wilson, founder of Open Eye Pictures, explores Lyme disease, which it purports to be “one of the most serious and controversial epidemics” of this time. The film synopsis reported that thousands annually go undiagnosed or misdiagnosed.
Mandy Hughes, a former Sea World marine animal trainer diagnosed with Lyme disease at age 19, was featured in the film. Given insufficient treatment, for more than seven years, her health deteriorated. Doctors diagnosed chronic fatigue syndrome, dystonia, multiple sclerosis and psychological problems before diagnosing Lyme disease and treating her with intravenous antibiotics.
The Colonial Theatre in Belfast offered a showing of the documentary a year ago free of charge as a public service and Harvey said that Monday, May 16, at 7 p.m. that the Colonial is again putting it on the big screen for no charge.
“I could have starred in that movie,” Harvey said.As soon as his intravenous antibiotic treatments began in August 2009, Harvey said, “I started seeing progress and improvement.”After not opening his eyes for months, one day he awakened and the world was no longer spinning. Maura said Eric was shocked at how the girls had grown.By January 2010, Harvey had returned to work part time. “I remember the first time I mowed the lawn again,” he said appreciatively. He also recalled the first time he was able to walk unassisted into the hospital and climb stairs by himself at home.
At physical therapy, Harvey laughed as he recalled being proud that he could lift 2-pound pink dumbbells.”I’m 75 to 90 percent better on any given day,” said Harvey, who has resumed a modified weight-lifting routine at Bay Area Fitness (not the 2-pound pink dumbbell variety), as well as walking and yard work.”
I eat healthy, mostly an organic diet, for the most part,” he said. “I try to avoid sugar and yeast.”
Maura also remembers and cherishes her husband’s victories.The entire ordeal, she said, profoundly changed her. “I always looked to the future,” she said. “I would say, ‘Eric, we are going to do this and this.’ Now I don’t ever, ever waste today. I appreciate so so much because I thought my tomorrow was gone.”The family has now returned to its happy, albeit purposely slower, pace.The three-month leave of absence from work resulted in considerable financial strain.
Medical bills, Harvey said, totaled more than $100,000; he estimated that 75 percent of the amount was incurred prior to the Lyme disease diagnosis. Fortunately, said Harvey, his health insurance has paid for the majority of the bills.Besides, he said, having his health is priceless.The Harveys’ focus now is on educating others about Lyme disease. “We want to give something back to the community who gave so much to us,” Eric said.
Toward that end, a Lyme disease support group meets at 6:30 p.m. the fourth Tuesday monthly at The Residence at Tall Pines in Belfast. An educational workshop is in the works.”Know your body,” said Harvey. “If you know something is wrong, don’t stop until you get help. I truly owe Dr. Dubocq my life. I will be forever grateful.”
Maura agreed. “Everybody needs an advocate. Every symptom deserves an answer. There is a doctor out there who will treat you and help you. If I had stopped 15 or 18 doctors ago, he wouldn’t be alive.”Maura said Dr. Dubocq was Eric’s advocate. “He is the only person who listened to every single thing Eric had to say and about all his symptoms,” she said. “And he listened to what I had to say about what I observed. Eric’s recovery is 100 percent due to him.”
While Harvey’s story has a happy ending, Dr. Dubocq said, “Eric is the tip of the iceberg.”
– http://waldo.villagesoup.com/news/story/eric-harveys-remarkable-recovery/395622
Glad she is doing better….. I hate to use the spray with DEET, whenever outside, but I do spray it on clothing… There are other sprays, but I question their effectiveness…
My son was working in landscaping last year. OFF doesn’t work. Cutter does. It’s the permethrin that repels. Look for something with permethrin to keep the ticks away.
I had this disease three years ago. Hit me fast and thought it was the H1N1 virus. Then I saw the bullseye and got checked. A month of drugs and an instant response to feeling good again. My lyme test came back inconclusive also, but I understand there are several levels of testing . The hospital goes with the cheapest first and that is where I think it gets misdiagnosed? So many people are infected with this disease that there should be a standard 100% postitive test that works all the time. Hope this little girl recovers and she helps other people get educated about the disease.
So glad she is better! I just wonder why it wasn’t found sooner just because test didn’t show it,it should have been treated for anyway. I was very lucky and only 6 weeks in to it before I was treated. The blood test didn’t show Lyme either but I did have the rash. I can’t imagine how this poor child felt,she suffered for no reason,if it is suspect it should be treated as such.
You are not alone. We traveled a very similar path and years later ended up at Dr. Jones’ office. He is an amazing man and I hope God grants him many more good years on this planet. It’s a shame we all have to travel to CT to get the help our children need when there are so many studies backing up the fact that lyme is persistant even in the presence of antibiotics. The information is out there but doctors have to go against the establishment and most find it too risky to buck the standards to get these people well. It’s easier to bury your head in a hole. Ilads.org can give you information and lists of doctors who are willing to treat till the infection is resloved, if anyone else thinks they have persistant lyme. It’s becoming more and more common and eventually long term antibiotic treatment will be the norm (imo) but how many more have to suffer till that happens? As far as I know, there is no definitive test that proves you have lyme. It is still a clinical diagnosis based on symptoms, exposure, response to treatment, as well as labs to hopefully back up the clinical diagnosis. If you want to learn more about Chronic Lyme, check out Cure Unknow: Inside the Lyme Epidemic by Pamela Weintraub. Eye opening book! (email me if you want game.enthusiast@gmail.com)
whoops, typed my email address wrong the first time. fixed it though. ;P
Most of the doctors we have in Maine are fresh from medical school, then again i have seen poor performance out of seasoned doctors also ! Doctors will never be truly concerned about proper and timley diagnosis until they are held accountable legally for their performance . Not many jobs you can have where you can do a bad job and not make the right diagnosis , give the wrong meds, and unlike most jobs arent required to give the persons money back or correct your mistake legally. Except for doctors and lawyers ! I had a good freind that had a gastric by-pass done in Bangor and she almost ended up dead because the doctor didnt get her stomach totally sewn all the way . Should of been 3 day stay , she ended up in emmc for a month ! Even with the medical records, except for a few that emmc hid and wouldnt give us and witnesses saying that they saw a nurse rip out her drainage tubes twice by mistake and the records showing the doctor had to go back in after 5 days and repair his mistake we could not find a lawyer from Bangor to Boston that would take this case . That tells me that there may be an unwritten code among the doctors and Lawyers ! This was a seasoned vetran doctor , who we discovered had many complaints filed with the Maine medical board ! The good news is she went back a year ago and had part of an elongated zyphoid process bone removed and it cured her problem of pain when she ate , and he was finally barred from doing gastric by-passes !
I applaud Dr. Jones, for being brave enough to take on the establishment and actually treat the patients properly. And for those that say the doctors in Maine are dumb, it’s everywhere when it comes to Lyme. They are not recognizing that this is the fastest growing health problem in the country. Nay, make that worlwide.
And we need more Lyme aware vets around here. A lot won’t treat unless there are symptoms, and just like with humans, it needs to be hit hard and fast with antibiotics. Most vets also under dose the dogs, for too short a time, creating a chronic state.
Good luck to you, Sally, on your continued recovery! And thank you, thank you, thank you for being willing to share your story.
this is so sad.. insurance companys do not want to pay for lyme yet i have a family member with this and it is really hard on her it never gos away and for this girl she faces a life time of antibioitics and reacurances my heart go out to her best wishes to you
From what I understand, it won’t be a lifetime, but possibly 2-3 years of antibiotics. It really depends on how long you’ve been infected as well as the combination of antibiotics you are on, as well as your age. Children have a better outcome than older folks who have develped complications. Never give up hope that you will get well Sally. It’s a long hard road to recovery, but full recovery is certainly possible for you, if Dr. Jones says so.
Sad that Dr’s let her in Maine go so long without being properly diagnosed . I would expect that Down east by most of the Dr’s down that way but not Bangor and beyond :(
I hope you have a full recovery. Those deer ticks are so small! About the size of a grain of sand. Both of our Golden Retrievers got Lyme disease despite the monthly treatments of Frontline Plus. This is going to be a BAD year for ticks. I have already found Dog ticks on their fur when they come in from the yard. (They don’t go in the woods)
Be sure to protect your pets from this horrible disease.
This article hits home for me. My sister will be turning 30 this year and was bitten at the age of 8 years old. Many years went by that she suffered with joint pain, brain fog, memory loss, fatigue and the list goes on and on…
In 2000, she was diagnosed with Lyme Disease. She was treated by doctors in Boston and on many rounds of oral antibiotics. She made great improvement on the long term antibiotics. She wanted to start a family. Therefore, she stopped antibiotics. Once stopped, she relapsed in 2008. She landed herself in a hospital for 5 days where she could not open her eyes or move her legs. The doctors were reluctant to recognize that the Lyme was the culprit. Ignored once again, she continued suffering and feeling alone. The word “healthy” was not in her vocabulary.
In 2009, my handsome nephew was born and my sister focused all her energy and love on the birth of her son. Then things went wrong…my nephew was in ICU three times due to daily fevers over 103 degrees and many symptoms that the doctors had no explanations for. My sister had the explanation… Lyme Disease. My sister took matters into her own hands and became her own advocate. She was not going to see her sick child helpless and unable to speak for himself.
My sister made contact and an appointment with a New York doctor that treats only Lyme Disease and Co-Infections. After a five hour consultation and extensive testing…it was discovered that she not only had Lyme Disease but Babesiosis as well. Her physician stated that she had the highest number on the Babesiosis test that he had seen in his practice of 3500+ patients. Because she had been misdiagnosed for so many years she is suffering from neurological damage. She has had brain spects come back severe inflammation and many tests that has proved damage has occurred over the years.
In January 2011, my nephew was tested here in Maine. My sister spent countless hours trying to get the results from my nephews peditrician and finally in April 2011… she received the test results. The Lyme was inconclusive but the Babesiosis was positive! My sister immediately seeked the best in the world… Dr. Charles Ray Jones. Same as Sally.
My nephew started long term antibiotics in April 2011 and has not had one fever to date! Many feel that long term antibiotics are harmful and I agree. However, when one is chronically ill and suffers like my family has, antibiotics can work.
My sister has been on IV antibiotics since February 2011. The sister I know today is not the sister I grew up with. Today she is living a life that she so much deserves. This disease can ruin anyone’s life and if it wasn’t for her determination to feel better and seek treatment for her son…where would they be today?
I encourage everyone to educate themselves about this disease. If not for you, for your children. It’s as simple as taking preventative measures. Don’t stop enjoying the outdoors…just check for ticks.
For all the physicians…please do not doubt the parents and please do not doubt the tests. Yes, the tests are inconclusive but that does not mean that the patient is not sick. Many are upset that the doctors have misdiagnosed or have refused to acknowledge the possiblilty of Lyme. I speak for so many when I ask you to please ask questions and educate yourself on Lyme Disease and the Co-Infections that could be contributed with this disease. At the end of the day, Lyme Disease is in Maine, it does exist and it can be treated.
Sally… you are an inspiration to us all! You will get better and Dr. Jones will see to that. You are blessed to have family and friends to support you. Thank you for sharing your story. I am hopeful that many hear your story and many will become aware of Lyme Disease.
To John Holyoke, THANK YOU! Thank you for taking a stand and writing this story. If you educate just one person about the disease…it is a story worth sharing!
Thank you –