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Lyme Disease Treatment | One Woman's Quest for Answers

For part of that time, most of the 75 full-time residents of Monhegan acted as guinea pigs; the island’s little general store became their makeshift clinic. “The people would come down and put their arms on the meat counter, and we’d draw blood,” Rand recalls. Dogs and cats were tested, too. He sometimes felt as though he were on the set of M*A*S*H.

His team worked like that for 13 years: “We found that as the years went on, up to 13 percent of the island’s residents had Lyme.” The local fear was that the presence of the disease would scare away visitors, who provide Monhegan with vital revenue. And so, after furious debate, residents agreed to have all the deer killed. Between 1996 and 1999, more than 100 deer were shot and their carcasses processed (the meat was donated to food banks), effectively removing the most active tick host from that island. And now, six years later, Lyme is rare on Monhegan. Rand’s study was a triumph in the annals of Lyme disease prevention.

One comment I heard more than once is that Lyme doesn’t kill you — but you wish it would. In Brunswick, Maine, I visited Rita Losee, a little fireball of a redhead who was once a nurse and a triathlete. Bitten by a tick while hiking the Appalachian Trail, she was diagnosed quickly, but when she’d finished the recommended course of antibiotics, her symptoms returned. “There were three or four times when the pain was so awful, I was within days of killing myself,” she remembers. Her doctor changed her diagnosis to chronic fatigue syndrome. At first she believed him — but then she started researching on her own. “I convinced my doctor to put me back on antibiotics,” she says, “and I started to feel better again.”

The mysteries of Lyme haunt her: “One of the things that really puzzles me is that so many doctors refuse to know about Lyme. I was in touch with one doctor, and he and his family all had Lyme. I called him up and he said, ‘I don’t want to talk about this on the phone,’ and he invited me over. I felt as if I were in a Kafka novel. I’ve never felt anything like this, the strange energy that surrounds Lyme. I asked him about it, and he talked about the denial that exists around Lyme. And then he told me that there was a writer for Newsday who started investigating, and he traced the whole thing to a little island off Long Island where the United States has a biological factory, and that this Lyme bug was an escapee.”

I knew what Rita meant by the “strange energy” surrounding Lyme. When I visited Georgina Scholl and asked her to explain the controversy, she covered my tape recorder with her hand and whispered, “Please!” And then she said, as if in mediation, “Why do we have to have this disagreement? Let’s just get rid of Lyme!” Kirby Stafford and Peter Rand both told me they wouldn’t answer questions about the “biopolitical” aspect of Lyme. What did they mean by that? I wondered. What was there about this disease that could not be discussed?

Marjorie Tietjen: Eighteen years of coping with lyme have turned her into an activist. "My frustration has been that wherever I go, no one focuses on the root of the problem."
Photo/Art by Dana Smith
Marjorie Tietjen: Eighteen years of coping with lyme have turned her into an activist. “My frustration has been that wherever I go, no one focuses on the root of the problem.”

And then I met Marjorie Tietjen, a sweet-natured woman who lives with her husband and son in a house in the woods of Killingworth, Connecticut. Marjorie, who has suffered from Lyme since 1989, calls herself a Lyme activist. I’d read her articles on the Web and was impressed by her wealth of information. She welcomed me to her home. Like almost every other Lyme patient I’d visited, she had stacks of papers and folders piled on the dining room table.

Marjorie had her own story to tell me, but she also had a book she wanted to give me: Lab 257: The Disturbing Story of the Government’s Secret Plum Island Germ Laboratory by Michael Christopher Carroll (HarperCollins, 2004).

Carroll discovered that Plum Island, which sits in eastern Long Island Sound, was set up after World War II with the help of Erich Traub, a German germ warfare expert. During the war, Traub had operated a lab on an island in the Baltic Sea. Islands, it was thought, were ideal for such research, as they’re self-limiting. But we know now that that’s an illusion. As Carroll points out: “Plum Island lies in the middle of the Atlantic flyway, the bird migration highway that runs between breeding grounds and winter homes from the Caribbean to the Florida coast, up the East Coast to the icy reaches of Greenland. In addition, deer swim back and forth between the island and the mainland.”

Compiling information received through the Freedom of Information Act, Carroll details Plum Island’s shadowy netherworld: virus outbreaks, biological meltdowns, infected workers, contaminated raw waste flushed into the Sound … and experimental tick colonies, bred for research on vector-borne diseases.

As the big white ferry New London pushes forward into deep water, steel-gray clouds hide the sky. The trip to Long Island takes about an hour and a half, and midway through our journey, on the port side, Plum Island appears, crowned with a water tower and edged with large, flat-roofed buildings. Off the island’s shores, fishing boats and pleasure craft bob. At its tip, a picturesque granite-based lighthouse sits, like a photo on a postcard.

On the map, Plum Island lies like an arrow, one end pointing toward the Connecticut coast and other toward Long Island’s North Fork. At the same time that Polly Murray and many others in that area were beginning to experience bizarre symptoms, Plum Island’s germ research was up and running. Birds, stopping on Plum Island, often flew next to either Montauk (on the South Fork) or Lyme, where the rich estuaries of the terminus of the Connecticut River lured them. Initially, the highest incidences of the disease were in Lyme and surrounding towns, and at the tip of Long Island.

Lab 257 has been shut down, but other labs on the island perk along. If infected ticks did escape from this island, they’ve long since done the damage and nothing can stop them now; Borrelia burgdorferi is out and about, doing its job, making people sick.

And as it spreads, physicians and researchers continue to squabble among themselves: Some say that long-term antibiotics are the only treatment for Lyme disease, while the more conventional among them advocate only short doses of antibiotics — and believe that if a patient needs a longer protocol, the illness must not be Lyme. Insurance coverage is often denied.

One way to stop an epidemic is to redefine it. Recent guidelines issued by the Infectious Diseases Society of America (IDSA) have narrowed the disease’s diagnostic criteria so tightly that it’s hard for any chronically ill Lyme patient to fit the profile — leaving thousands of people robbed of an answer.

Please Note: This information was accurate at the time of publication. When planning a trip, please confirm details by directly contacting any company or establishment you intend to visit.

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22 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 #

        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.

    • marcelle May 25, 2015 at 4:11 pm #

      I live through hell too, not one doctor to help me. It is a feeling of complete isolation and agony. I am sharing my journal for awareness.

    • May 25, 2015 at 7:21 pm #

      Wow where in Vermont or New Hampshire can I find a doctor who has these facts?

  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.

  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

  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 bro lost one tooth..our fingernails got 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?

  12. David Taylor May 19, 2015 at 10:19 am #

    I have been going through a living hell since Jan 2012. I am an avid outdoorsman, or at least was .I was Bitten in Nov of 2012, went to doctor and was told rash was from dry skin, I then went to my VA Dr when my foot became numb joints aching ,fatigue the works l was put on gabapetin. which I am still on. Went back to primary Dr and asked for Lyme test which he declined and sent me to chiropractor big mistake. At same time I had ruptured 3 discs lower back.I had successful back surgery July 2013 I recuperate the next 3 months planning to go back to work at my mason contracting business , never happened. I then went to 5 different neurologists private and VA , at this point I am in a wheelchair after numerous mri’s, emgs , I had a spinal tap done which showed 2 bars for Lyme disease not enough to get treatment needed so we claimed 10% Lyme disease 90%neuropathy. This was after 2 western blot tests that were negative and 1 blood culture test negative after 16 weeks. I felt at this point testing was inclusive since I had my spleen removed 15 years earlier. My doctor then put me on daily injectionso of rosefin and IVIG infusion every 3 weeks for a year some improvement but Quadra cep muscles still do not respond. After a year new insurance carrier refused to cover treatment. I have been on an aggressive antibiotic treatment for last 6 months not much change. Is there a doctor out there who is up for an extreme calender please email me . Thanks for the opportunity to get my story out there.

  13. marcelle nichols May 25, 2015 at 4:21 pm #

    Why, oh why in the name of God is modern medicine allowing us to live in this horror, this nightmare in which there is no waking?
    So many people, so many stories of health and lives being destroyed and they allow this to go on.
    I am beyond hurt, I am beyond upset, I am all alone fighting for my own life.
    SOMEBODY PLEASE HELP US. We beg and beg and we are left unheard.

  14. Karen Elmore June 16, 2015 at 6:39 pm #

    Agree with all of you that Lyme does with your life what it wants and leaves you feeling hopeless, but it had to be God’s will that the year I took the tick off of me, I found essential oils. At first, was just using them to get some kind of relief of the frustration I was going through. Didn’t even think of Lyme because 4 tests come back negative from the NL. All my friends kept saying that I had Lyme symptoms and in Nov. ’13, a LLMD sent my blood to Igenex(only reputable testing facility) found that I was positive for Lyme, Bartonella and Babesia. Horrible and cried, but thought there has to be some kind of way to fight it. Nope, not that the docs would stand by and abx won’t do it and will cause other problems.
    So, after reading more about the essential oils, found them to have so many benefits..that give hope to kill the Lyme.They are the ONLY things that will break the blood-brain barrier and because abx won’t. Use them in every bath and mix 15 different oils(YL) into a cup of Epsom salts. Also add a cup of Apple Cider Vinegar, plus a 1/2 cup of Baking Soda. At the end of the bath, while soaking in a pretty warm/hot bath, I slather Coconut oil all over my body. So far, it has been the only thing that has kept me going.
    Suffered for almost 8 yrs with this hell and last month, went and got a Raindrop treatment, but NOW can’t move. I don’t understand, unless the Lyme is so bad…that it has made me suffer worse.
    God sent me hope with the essential oils. A year ago, vomited every 3 mos, until started drinking the ACV mixed with Honey. That stuff is a miracle in a bottle!!! God Bless anyone suffering with Lyme and reach for the Essential oils and most importantly God. He helps me get through each and every day. :)

  15. shathi August 7, 2015 at 12:17 pm #

    I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Lyme patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?

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