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Lyme Disease Treatment | One Woman's Quest for Answers

Lyme Disease Treatment | One Woman’s Quest for Answers
8 votes, 3.62 avg. rating (73% score)

His patients come from all over the country to his office, just down the street from Yale’s School of Medicine. In addition to seeing patients all day long, for the past year he’s been driving north on a regular basis to a Hartford hearing room, trundling a wheeled suitcase filled with papers relating to the case against him, which may rob him of his license to practice.He greets me in the courtly manner of his generation, almost bowing. In placid tones, he explains his life with Lyme. In the 1960s, he was a staff physician at Memorial Sloan-Kettering Cancer Center in New York. During that time, he and his wife began to look to the Connecticut countryside as a better place to raise their children. In 1968, they moved to Hamden, then a sleepy hamlet beside the Quinnipiac River, and he set up his practice.

“I started seeing children in clusters with what we thought was juvenile rheumatoid arthritis,” he says. “This was very rare. But it wasn’t really JRA. It didn’t fit the whole picture. The clusters were not just in Lyme; they were all around. And there were many of them. Polly [Murray] was instrumental because she demanded they do something about this.”

Along with Allen Steere and Eugene Shapiro, M.D., who now sits on the opposite side of the hearing room, Jones worked to solve the puzzle of this peculiar, crippling ailment. “Sure, we were colleagues at first,” he notes. “We were all trying to figure it out. You could say we were mired in a lack of understanding.” For Jones, this search for knowledge transformed into his specialty. He became an LLMD, Lyme literate by evolution.

“At what point did all this become contentious?” I ask.

“I was never part of that,” he says. “I heard things, but I was busy. I just figured that was their problem.”

Now it’s his problem, too. Jones has been charged with diagnosing two children in Nevada with Lyme disease before examining them, and with prescribing antibiotics for them over the phone. Shapiro, his former colleague, a professor of pediatrics and epidemiology at Yale’s medical school, not only brought the charges against Jones but also helped write the guidelines that have narrowed the Lyme disease diagnostic and treatment guidelines. The Hartford Courant once quoted Shapiro as saying that he had had calls from physicians in Connecticut “begging me to see their patients so they don’t have to see Dr. Jones.”

On the day I visit, Jones sits at his desk in a big leather swivel chair. On the desk are neat stacks of patient files. For the hearing, which he calls variously a “conspiracy,” a “witch hunt,” and an “inquisition,” his accusers have subpoenaed many of his charts. “I’m considered the great Satan,” he says with a gentle smile, “which always amuses me.”

“This is not a malpractice suit,” he notes. “If the charges were serious, it would be malpractice.” He goes so far as to label the charges “trivial.”

In his office suite are five rooms filled with patient files: 10,000 children, all the way back to the beginning. “Seventy-five percent of them are cured,” he claims. For his legal defense fund, almost a million dollars has been raised by his patients’ parents and, in some cases, by his patients themselves. “This little boy,” he says, pointing to a photo of a cherub-faced youngster, “had a lemonade stand this summer, and he raised $33. Another little boy, 6 years old, came in with 21 cents in a paper cup.”

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16 Responses to Lyme Disease Treatment | One Woman’s Quest for Answers

  1. Donna Zuk June 6, 2008 at 4:18 am #

    I have Yankee magazine emailed to me every month, but in June last year I moved back to Connecticut after spending 2 years in North Carolina near my grandchildren and missed this article until now. I have been having weird ripping pains in my hands that heal in about 4 days only to return. I could hardly hold a pen today with sharp pains shooting in my hand whenever I tried to do normal activities. After a year of this, and it not getting better today after my usual 4 days or so of healing, I decided to go to the walk-in. I have lab work that I have to get done, and I noticed a Lymes disease test.

    Funny thing I thought. Many years ago (16) a doctor tested me for hypothyroidism, Lymes, and Epstein Barr/mono. The Lymes and thyroid tests were negative. The Epstein Barr titer test was positive. I was diagnosed with Chronic Epstein Barr.

    Years later after getting a tetanus shot, weird things began happening. Pain, severe pain, muscle spasms and muscle jerks spread all over my body, then 2 months later burning, boiling pain. Tender pain I used to call “it feels like raw hamburg pain.” Then if I did some sit ups, I would have serious tender pain between my muscles and rib bones. I’d say, it feels like someone hit me with a baseball bat multiple times. My exhaustion for years continued. I would wish for death. I would cry from the pain and exhaustion. I didn’t want to be in a relationship so they wouldn’t have to deal with my limited life.

    After seeing multiple doctors, I was diagnosed with fibromyalgia. I always feel sick. I have a hard time getting up in the morning and a hard time falling asleep, or staying asleep. I always hurt.

    I came home tonight with thoughts of the meaning of my painful hand symptoms and what they might have to do with Lymes disease? I began my internet search again. Again I was reminded of another search I had done, and the tell-tale sign of the bulls eye rash. It’s a funny thing because I had that once… (27 years ago) more than one on the same leg, so I counted it out. It was more than one area so it can’t be Lymes. The Lymes test was negative, and there was also more than one bulls eye area at the same time (and it didn’t get better). Then I read on the net, you can have more than one even if there’s only one bite.

    Ok, so now I continue searching trying to find any type of bite that might have the look of my bulls eye. My bulls eye was not the red rash. I distinctly remembered mine were bruises. You can imagine after all these years of never mentioning it to a doctor. I am now a nurse, (and after 19 years of nursing at 50 years old going back to college because my repetitive ‘injuries’ and exhaustion is making life miserable if not impossible at times) I was not a nurse when I had these bulls eyes but niether was I taught about lymes disease in nursing… never mind atypical BRUISE-type bulls eyes! Thank you so much for this article, and please, please thank that nurse!

    • sharon May 25, 2013 at 4:57 pm #

      thank yoy for the information 20yrs simtons havt started coming back with a vengeance myw doctors oh its ms or lupus.ok bullseye+ headaches,jawlpain,rash from pain like shigels you know the hole list.and adding 2+2 I also tested positive by my OBGYN fo Fish but Thay never saw the bullseye because I myself though it to be a ringworm.if you can do you know a docter in NC that Will teste me withi trying to kill me

      • Rebecca Cross July 23, 2013 at 1:11 pm #

        Hi,
        I do not know of a dr. in NC. But, would like to suggest my Dr. Daniel Cameron in Mt. Kisco, New York. After 25 years of many diagnosis and feeling awful in many ways this man is helping me and multitude of others to get better from lyme and co-infections. He truly is a kind and caring Dr.. His doors have been open every day since 1987. He is or has been president of the lyme project. He sees patients from Florida, Wisconsin, Idaho, Illinois, CT, New Hampshire, MA, Vermont, Maine, Canada, Turkey, and Europe. Basically from all over the world. Google him and watch the movie Under Our Skin. I hope I have helped. Becky

    • Rebecca Cross July 23, 2013 at 1:13 pm #

      Try Dr. Daniel Cameron in Mt. Kisco, New York.

  2. Sue Meadows March 5, 2010 at 10:40 am #

    This was the most amazing article that explained my Lyme Disease. I refer physicans, friends, and family to this article regularly. If anyone tells me they have Lyme Disease I send them to this article. It really explains why my father never got Lyme Disease, and the try seriousness with this illness. Thank you for being so bold to do the research and to print this. It will help millions of people!

  3. PJ Fiocco July 13, 2010 at 7:09 pm #

    I find the “political/medical” cover up of this problem astounding. The very people that are working so hard to keep their jobs by covering up faulty judgment and past mistakes should lose those jobs permanently…if for no other reason than they cannot be trusted to have the health of the general public as their main goal. Are they really so stupid as to believe that making it almost impossible to be officially diagnosed with Lyme Disease will make it all go away? And prosecuting doctors that are trying to solve the problem is shameful.

  4. Cheryl Pedemonti August 11, 2010 at 1:22 am #

    I’ve been suffering with chronic Lyme Disease for over 2 years but I think I am finally feeling better after taking doxycycline for 4-1/2 months followed up with Biaxin for 2 months.

    I tested positive for Lyme in December 2008 but I did not realize I had the disease for about 6 months because I didn’t have the tell tale signs of the rash or fever. I became progressively more fatigued and achy until I couldn’t get out of bed. That’s when I stopped making excuses for the way I was feeling (stress, working too many hours, peri-menopause, etc.) and made an appointment with a naturopathic doctor who diagnosed everything that was wrong with me. I now have to take thyroid medicine for Hashimoto’s Disease and can no longer eat gluten due to Celiac Disease, both of which are auto-immune diseases. The medical doctors say these new illnesses are not related to Lyme Disease but I never had any ailments in the past until I became ill with the Lyme. I was a strong, healthy person.

    Lyme disease took away my livelihood due to cognitive problems. I used to create amazing landscape designs, teach adult ed classes, and write gardening articles but now it has become too difficult for my brain to function the same way now. I become easily fatigued and have dizziness and ringing in my ears. My knee is very stiff and painful. I make spelling errors when I try to hand write notes. I can’t remember names and details like I did in the past. It causes me to feel depressed at times and I worry that my brain will continue to deteriorate over time.

    The scary part is that there doesn’t seem to be a cure for Lyme Disease. Antibiotics make you feel better and reduce the symptoms but I don’t think I will ever be my old self again. I am currently using homeopathic tinctures instead of antibiotics because I was worried about the side affects of long term use of antibiotics. I feel better but only time will tell because it usually takes 2-3 months for my symptoms to return when I finish my course of antibiotics. I am trying to remain positive.

    I wish someone in the political or insurance realm could do something to help the victims of Lyme Disease. Why won’t they face up to to the reality of this disease? If you are bit by a tick, I would recommend taking antibiotics right away. It seems to help if you get started on the treatment immediately. Don’t wait like I did or you may never be free of Lyme Disease.

    • Theresa February 20, 2014 at 11:27 am #

      Dear Cheryl, I know that you wrote your comment in 2010 but I just found it today Feb. 20th 2014. 26 years ago I was bit by a tick on my back & I really didn’t think much of it cause I was bit by ticks before. I remember I ended up with a big bulls-eye patch on that spot but I did not have any other symptoms except it itched a lot, so I didn’t go to the Dr. Later on as time passed I started having allergy symptoms. I had never had them before until that time. As time has gone on I started having symptoms just like yours, can’t sleep,fatigue,allergic to all kinds of foods, including gluten, body aches, ringing in my ears all the time, low body temperature, low blood pressure, & so on…… I have had a lot of tests done but they don’t find anything wrong. They treat me like It’s all in my head! I have had a sinus infection since Christmas of 2013 and having a very hard time getting rid of it. I tried antibiotics but they didn’t work, all it did was give my diarrhea. So now I am looking on the internet for some answers. I am wearing my husband out with all of this too! I found a lot of things that I thought it could be &alot of answers on how to help the symptoms. But nothing made since of how I got these symptoms in the first place until I read your post. I am going to start using essentual oils to see if that will help & a lot of prayer, I really want to be healed of this!!! It is really hard to function & I want to do ministry with my husband! If anyone has any other answers please let my know, cause I’m sure there are others out there like me looking for help!

  5. Natale A. Lee November 28, 2010 at 9:39 pm #

    We are on Lower Cape Cod. I have the July/August 2007 Yankee Magazine and keep referring the article, “Trouble in Paradise” to others. What a service this article has been to others. I have been diagnosed with Lyme Disease twice and the second time, I copied the article by Edie Clark and gave it to my doctor. They didn’t know or didn’t like the fact that I said: “I HAVE LYME!”. Both times I had a horrific headache and freezing chills soon after a tick bite. I didn’t have a rash the first time. I would ache all over and before I think it left my body, at some time every bone and muscle had either an ache or pain. Now, I keep doxycycline on hand. Whenever I discover a tick bite, I take two right away. I put the tick, when I find it, in alcohol. I haven’t had Lyme since 2005 that I know of, but I’ve taken doxycycline several times. This past summer when going to bed, I felt something itchy, asked my husband to look, and he didn’t see anything. Well, I had three tiny deer ticks on my upper legs and buddocks. We needed a magnifying glass to actually see them. I think people may miss or dismiss these tick bites thinking they are mosquitos or spider bites. Please take a good look, everyone. These ticks are smaller than a pin head in the nymph stage. Spraying your clothing and tucking in your pants helps, but anyone can bring the ticks into your house including animals. Please, BE AWARE!

  6. Alisha Lopej February 7, 2011 at 1:22 am #

    Lyme disease is a bacterial infection, which is transmitted by a tick. Most of the cases of it are curable with antibiotics. The type of the antibiotic depends on the stages of the disease, its early or late and what areas of the body are affected.
    http://www.biblehealth.com/lyme-disease/what-is-lyme-disease.html

  7. Cheryl Pedemonti December 21, 2011 at 9:27 pm #

    There is life after Lyme Disease after all. After being symptom free for 18 months, I can now say that a proper course of antibiotics used concurrently with homeopathic remedies has cured me of Lyme Disease. Could it be harboring in my body still? Possibly. But I wanted to follow up with readers that my health has improved and I am able to work full time again without any negative side affects. I stay out of the woods now, and after gardening in my yard, I do a thorough check for ticks on my clothing and body. The important thing to stress here is that you need to understand the different symptoms of Lyme Disease and get it under control as soon as possible. I wish good health to anyone who is currently battling Lyme Disease! If your medical doctor doesn’t take proper care of you, try visiting a naturopathic doctor who will offer a more comprehensive care plan.

    • Jamie November 29, 2013 at 4:58 pm #

      Is there any way that I can contact you to ask some questions about Lyme? I am a 41 year old mom and wife and think I have lyme. If you would be so kind as to email me so I can ask you a few questions? Thanks so much
      Jamie

  8. S N April 14, 2012 at 10:05 pm #

    For anyone interested in alternative methods, I know people who have been cured through Sufi spiritual healing. Cupping is supposed to be the only way to remove it from the body completely. (it pulls the blood out). One woman who was healed through spiritual healing relayed to me that the core of it (for her anyway) was around deep fear and she needed to work on that to heal.

  9. tony April 23, 2014 at 10:09 am #

    Lyme has caused our family HELL….and thankfully 3of us got lyme to be taken serious.Took 5yrs to get treatment.My mom had her thyroid removed cuz of lyme… it destroys your entire body…my brother and i still take thyroid mess cuz of lyme.we all wore braces had nice teeth, but now they are brittle… my mom lost two.my bro lost one tooth..our fingernails got clumps..now keep in mind these things happen on top of the regular lyme sympts…

  10. tony April 23, 2014 at 10:16 am #

    Lyme also caused spleen enlargement,… it truly is a serious disease and it lingers on and on….very scary…docs are idiots and if it wasn’t for all 3 of us getting sick,…we prob still be without treatment…my mom had sympts first …then 2the later we got ill… my pro and I had the rash… she never did… she also got panaceatitis…

  11. Anne July 24, 2014 at 6:57 pm #

    I am being treated for Lymes disease. However, I have tested negative both times. My symptoms started in 2012. Flu like symptoms, extreme fatigue, mild joint pain. I tested negative. However, Throughout the years, I have been diagnosed with Hashimoto’s, Low Blood Sugar, and Sjogrens, and a few other ailments that go along with the tale signs of Lymes, and I never felt quite right. Regardless, I managed to lead somewhat of a normal life. However a month ago, I started to experience extreme joint and muscle pain (the pain moves from one body part to the next without warning), and stiffness throughout my whole body, tremors, eye sight is getting worse, and I am experiencing brain fog, anxiety, and fatigue and many of many of symptoms relative to Lymes. There were a few times, my husband had to carry to the bathroom and dress me the pain was so bad. BTW, I eat healthy (very clean), exercise 6 days a week (intermediate weight lifter, runner, and kick boxing and other sport related activies). I took it easy the times i didnt feel well, and pushed my self when I had okay days. Now, I can barely get myself to work or clean my home, and take care of my family. I was retested for Lymes, this time with a Western Blot, but it again came back negative. However, my doctors says the tests are not reliable and she put my doxycycline (21 days). My concern after reading some of these posts is that if in fact I do have lymes (i am convinced i do), I am not going to get better after the 21 days. Then what? It sounds like, the longer you have had the disease, the longer you need to take antibiotics. But doctors do not like to give out more antibiotics than they think are required. Scared! I have been on the antibiotics for 1 week now, and I feel the same as I did before I started taking them. Has anyone else tested negative, but have been treated for Lymes?

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