Living With Lyme: Where Do We Go From Here?

We’ve all heard about Lyme disease: that it is spreading throughout New England, that it can be tricky to diagnose, and that it can wreak havoc on patients’ lives.

But clear, reliable information — on the disease’s prevalence, how to avoid getting it, how most doctors now believe it should be treated, and what to do if you fear you’ve been exposed — can be hard to come by.

From June 25-29, WBUR is exploring this public health issue. We’ll delve into the difficulties of tracking the disease, explore the history of attempts to develop a vaccine, spotlight the latest thinking on treatment, and tell the stories of patients who know these issues firsthand.

Please follow our community rules when engaging in comment discussion on wbur.org.

guest

When will these segments air?
L Modica

I live in Chelmsford, MA and have been living with Lyme disease since 2004. I have a CDC positive ELISA and Western Blot. However, I was very sick for 2 years before I was diagnosed. I had insited to my doctor that I was sick and something was wrong. Eleven tubes of blood later, I had a positive Lyme test. I have been on and off antibiotics ever since. I can no longer work full time, but due to a doctor in upstate New York, I am now able to work a 30 hour week. I was unable to get the proper treatment here in MA and so I drive 3.5 hours every 3 months to see my Lyme specialist. And I pay out of pocket (no insurance for Lyme treatment) because the insurance companies harass Lyme doctors. This is a sad state of affairs for Boston which is seen as an innovator in the medical field. Yet we are far behind when it comes to treating Lyme.
sickwithlyme

We live in Bolton, MA. I, my two sons, my husband, and my parents are all suffering with Lyme Disease and various co-infections. We travel to New Haven, CT for treatment.
- Ptmmpking
  
  My grandson also lives in Bolton, Ma and has been unable to locate a doctor who can help him. Where in New Haven is this doctor located? Also what is his name.
  - blueberry
    
    Our son had Lyme, actually was born with Lyme disease. Diagnosed at 10 and treated by a wonderful doctor in CT. He is now in College and doing great in all aspects of his life. Here is a website that I found very helpful for those with children that have lyme. Hope this helps�
    http://drjoneskids.com/. I was diagnosed with MS and treated for MS. My story was aired on Chronicle. If you google the episode, it was called “ticked” Peter Mehegan did a fabulous job with the story about the problems with diagnosis and treatment of Lyme disease. Yes, most doctors are not aware of the co-infections, there are to many to mention. Be your own advocate and read, read, read. This site mentioned ILADS this is very good information!!! Also, you can print phamplets on lyme, “ABC’s of Lyme” and the ” Lyme Primer” are available on line, these are given out by the Lyme Disease Association
Carol Houde

I worked as head of a clinical hematology laboratory in Concord for thirteen years. As an avid reader of medical journals and e-news, I learned of the rising incidence of Lyme throughout New England . More importantly, the other organisms carried by the tick Babesiosis and Anaplasmosis were called “life threatening” yet little was known about them locally.

Lyme is not visible on a blood slide but we began looking for evidence of these other diseases as we reviewed routine blood smears. We were able to detect these infections and to note them with increasing frequency. We began alerting physicians to investigate for them (additional studies)especially in patients with positive Lyme. A single patient may become infected with two or all of these illnesses at once! Patients older than 65 seemed to be at increased risk(the ones most infected) either due to decreased immunity or simply, not paying attention to the presence of ticks, or perhaps poor eyesight. Anaplasmosis, if present, may be eliminated by the same antibiotic used to treat Lyme, and therefore the patient’s co-infection is never listed. Babesiosis, however, like malaria, needs to be treated with an anti-malarial. In addition, we detected these infections even in January or February! We suspected tick progeny still living on the carrier (family dog/cat?) or the presence of active ticks with the absence of snowcover on sunny winter days. In winter, these infections may be dismissed as Flu.

All this being said, my concern is the lack of physician (and some laboratory staff) education in detecting these infections. Sadly for the patient, MOST laboratories do not routinely make or review blood smears except under very conservative criteria. This results in many missed infections dismissed as a “virus”. The patient remains untreated, giving the organisms a free reign until the patient arrives at the hospital gravely ill. While it is impossible for every blood sample to have a companion smear prepared for review, it is possible for physicians to SPECIFICALLY ASK FOR ONE. Physicians need also to educate themselves in the correct timing of laboratory antibody tests so as to optimize the detection of a positive finding.

The general public needs to be frequently reminded about tick-borne illness. The state board of health could have taken leadership in this issue many years ago but somehow have chosen not to do so.
Carol Houde
Medical Laboratory Scientist (ASCP)
- http://HOPE-Connection.com/ Michael Ryan
  
  Carol, thanks for posting. We see what a lot of people are commenting about here, too: doctors that are Lyme illiterate tend, obviously, to brush off requests for testing and do not make any extra effort in entertaining the possibility that this might be a case of Lyme. I tested this with my own PCP who said the tests are inconclusive and won’t tell him anything and he brushed off my concerns. Most doctors do not take the time to listen and only suggest what is in their experience – MS, ALS, or Fibromyalgia. It’s only later – months or years – that the patient, after going to a Lyme literate practitioner, gets some certainty as to their symptoms. That in itself makes the journey much more difficult, and then there is the out-of-pocket costs for treatment and recovery. There is so much uncertainty, and this causes a lot of stress, but a big part of that uncertainty is that doctors aren’t going the extra mile to explain their quick, knee-jerk reactions to requests for help. I hear this all the time – multiple diagnosis from multiple doctors and the doctors telling the patient that there is a simple 2-week protocol for Lyme. You have to find a Lyme literate doctor and start there. We also see this with hyperbaric oxygen, in general: after years of maintenance therapy, people ‘discover’ hyperbaric oxygen and are perplexed why their doctor never mentioned it before. For Lyme folks, it’s sometimes the only thing that improves their condition, and for head injuries and fibromyalgia, it’s shown positive results. But, like Lyme, in general, it’s not accepted by insurance companies for these conditions (it is accepted for things like the recent eradication of the flesh-eating bacteria cases and many other conditions – few of which are understood by doctors except those working in wound care centers) and we often see people later in the cycle than we would like. For example, there might be a parent with a child who suffered a ‘shaken-baby’ episode, but the doctors rarely think of hyperbaric oxygen as a complement to the protocol; in one case, we didn’t see the child until decades later, which means decades of ‘maintenance’ therapy and very little actual rehabilitation effort. The journey we have been on with hbo (hyperbaric oxygen) parallels the road that Lyme literate doctors are on. Unless the pharmaceutical companies and the insurance companies are lobbying the medical community, practitioners are not being made aware of ‘new’ technologies or treatments. I know from experience that Lyme is treatable with hyperbaric oxygen and has a positive effect (often the only option that gives sustained relief). I just wish more people took the time to learn about the devastation Lyme causes and the options that are available in Mass (see HOPE-Connection.com).
Lalenya Robertson

My good friend, Carol Houde sent this info to me as we’ve been discussing my Lyme’s since 1979 when I was infected in Monroe, Ct. while visiting a friend. In 1979, Lyme’s was virtually unknown. I had two bullseye bites on my right side and shortly after suffered with extreme body aches and headaches. I was told by one doctor that I had post partum depression and to take antidepressants. After several months, I had developed Bell’s Palsy and was hospitalized. I was in a teaching hospital and unfortunately had to suffer through so many tests that I checked myself out after the 7th spinal tap. A week later, I was paralyzed from the neck down and re-hospitalized and placed in isolation.

It was only after the neurologist referred me to local rheumatologist, who then had the insight to refer me to a doctor at Yale/New Haven, was I correctly diagnosed after simple blood testing.

After years of body and muscle aches, I was diagnosed with Fibromyalgia and Chronic Fatigue in 1997 and had to retire. Lyme’s was never in the equation even though I had repeatedly told the professionals about the diagnosis.

Thirty three years later, I continue to suffer with the disease, whether FMS, CFS or Lyme’s and have good days and very bad days. I live in Central Florida and there is not a doctor in the area that will treat Lyme’s or will take insurance to cover the costs, never mind HBC treatment.

The latest development is severe pulsating ringing in my ears 24/7 and inability to have a single night’s sleep. Not one doctor appears to correlate symptoms with ongoing Lyme’s and treatment options here are limited to muscle relaxers or anti inflammatory drugs and a variety of sleep meds. The only sleep med that seemed to work, Ambien CR, of course isn’t covered by the insurance company.

It’s a shame that doctors are limited in treatment protocols because of the insurers while so many people have to suffer with this insidious disease. I would think that the CDC would be doing more to educate physicians since this disease has become so widespread and the government doing more to pressure insurers to get out of the way and let physicians do the job they were training to do. It would be lovely if the insurers lived by the same credo as doctors. First do no harm…
Wendy Thomas

3 of our children are being treated for Lyme (and remaining 5 of our family still need to get tested.) It’s been 7 years of mis-diagnoses, useless medical treatments, tens of thousands of dollars spent on wrong “guesses.”

2 have responded to treatment, one is still in a critical situation (within a year he went from being captain of the swim team to us talking about getting him a wheelchair) From our experience (went to 11 docs before we figured it out) the docs in NH are grossly under-educated with regard to Lyme disease and chronic Lyme. Dartmouth Hitchcock, for example, does not believe in chronic lyme (which is why we left the service.) The winter was mild last year, there are TONS of ticks out there. I predict that in the fall we will see an epidemic of strange illnesses (neurological symptoms, joint pain, skin rashes) for which the majority of our docs will be woefully unprepared to treat.

Wendy
- http://chroniclymelookslike.wordpress.com/ Wendy Thomas
  
  In an effort to try and explain the impact of Lyme, I started a visual blog called This is what Chronic Lyme looks like -�
  http://chroniclymelookslike.wordpress.com/
  
  There is no easy way to explain the impact this disease has on individuals and the family.
Lesley

In 2009 I moved to a new town, in a new house, and within a month I was in the ER, being given a spinal tap for what they thought was meningitis. I suggested Lyme as our house was in the woods and I had a weird itchy bump on my head. I was sent home with no diagnosis as they did not see the bullseye rash. 4 days later, raging ill, unable to tolerate light or noise, or even move, the rash appeared and spread so I dragged myself back to my clinic in RI and finally got the Doxycycline I needed. Six weeks of that (after begging for more Doxy after the initial 3 with a very stand-offish doctor) and having to go back to work was difficult. My joints and memory were shot compounded with the halo headache and blurry vision. I limped through life, then 4 months later a red rash spread across my legs and backside, pain and brain fog came back, I asked my RI doctor again for more Doxy. She insisted I was cured and this was something else entirely, but begrudingly gave me 3 weeks of Doxy. I didn’t know where to turn but I knew there were thousands of others like me out there! I then happened upon a woman who was mis-diagnosed and who’d ended up in a wheelchair before it was figured out it was Lyme. She told me it was the Lyme coming back and my body was trying to put up a fight. I got smart, read up on the disease, and found a doctor who actually believed me – his assistant had Lyme a few years before and she said “you’re not crazy”. My “flare-ups” were cyclical and occurred for another 18 months. I kept track, ate healthier, and began to exercise vigorously – which has seemed to put it in ‘remission’. My partner became ill with Lyme last summer, but luckily he got proper attention immediately and does not have the long-term effects like I have. While my Lyme disease symptoms seem to be fading with time, I cannot forget the ignorance of the doctors I had to deal with initially. If you are going through this, find a support group, educate yourself, family, AND co-workers; and most importantly, find the medical attention you deserve!
http://huntnewengland.blogspot.com/ Brubru2452

Lyme disease is near to becoming one of the largest epidemics in US history, so why isn’t anything being done about it? I am a 24 year old who become one of the statistics this year. Not only is it frustrating that these tiny bugs exist, but add on to the fact that they carry debilitating diseases and it seems like something out of science fiction.That is where the story gets interesting, if anyone has read anything about the plum island experiments it seems as though this disease was a product of the cold war and is now affecting our own, but that’s a whole other story.Whether you believe that Lyme disease was created as a form of biochemical warfare or not, why isn’t there more being done about this disease now? The most frustrating experience I had with this entire ordeal was the inability to get a proper diagnoses… and that was with all the tell-tale symptoms for stage 1 Lymes. 3 ER visits, and 5 doctor’s later I finally came up with a positive blood test that put all questions to rest… or so I thought.The more research I did the more questions I had. The main thing this problem calls for is awareness. I had heard was lymes disease was, but I never thought it would affect me. I checked for ticks on a daily basis, not hard enough apparently. The other thing that needs to take place is reform. My main question; WHERE IS THE VACCINE?!? my dogs get it every year, why can’t I?One doctor I spoke with told me that there was no such thing as chronic Lymes disease, that most symptoms people experience after being diagnosed is “Lyme anxiety.” I would like to see if his response would be the same if he ever contracted the disease.
If anyone would like to read more about my experience they can check out my blog at either http://huntnewengland.blogspot…or http://www.northeasthunting.co…Thanks, check twice, stay safe
Steve Cabana

Two weeks ago I spoke to the Lyme disease support group on Marthas Vineyard. To understand the medical debate, I suggest watching the documentary “Under My Skin,” a Frontline type expose of how money, personal interests, and front running the evidence led to inappropriate treatment standards for lyme and rejection of the existence of chronic lyme.

Resources: http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Dstripbooks&field-keywords=lyme+disease

Dr, Zhang in New York has treated now over 5000 patients, including myself, with non-antibiotic treatments for lyme and co-infections babesia, bartonella, etc… although he works with Lyme literate doctors using antibiotics in combo with his methods. Here are some patient comments blogging about his work:

http://www.healingwell.com/community/default.aspx?f=30&m=1420101

If you are a physician wanting someone to explain the science behind effective diagnosis and treatment or a patient trying to treat chronic lyme or give the correct test to diagnosis it (unfortunately most tests are marginally effective) I suggest you contact Robert Giguere at IGeneX, (they have the most effective lyme test) at his cell number at 508-789-1535 or rogiguere@yahoo.com

Some of the practitioners leading the way to lyme recovery who have helped many can be found here:

http://www.betterhealthguy.com/joomla/blog/238-bioresource-2011-conference

http://www.betterhealthguy.com/joomla/blog/163-klinghardt-conferece-lyme-and-other-chronic-infections

http://www.betterhealthguy.com/joomla/blog/258-lymediseaseorg-conference

http://www.betterhealthguy.com/joomla/blog/216-ilads-2010-conference-takeaways

Janet Dooley is involved with helping people find resources to recover from chronic lyme and can be reached at: godbless@charter.net

Enid Haller is leader of the Lyme support group on Marthas Vineyard, ground central for Lyme disease and you can contact her and ask to be added to resources she sends out brought to her attention by members: enid.haller@gmail.com Hope this helps a few people. I had to work very hard to get to an 85% recovery still working to get 100%. Best, Steve C.
- Tina
  
  Janet Dooley’s correct email address is godblesskev@charter.net
Sksherry

It took three years to find someone to diagnose my husband with Lyme, and he had probably had it for 3 or 4 years before that. Every specialist did every test and no one would confirm Lyme. All the symptons, but “no rash” (only 50% of tick bites show a rash)! Specialist after specialist – gastro-enterologist, rhemeutologist, psychiatrist (maybe he was making it up??), orthopedist, nephrologist, neurologist…and often we heard “it must be lupus” “it must be Graves” “it must be anklosing spondilitis”(arthritis of the spine he DOES have, but is not the kind of auto-immune disease he was presenting with). At one point, he had had a migraine for 10 months and an infectious disease specialist insisted it wasn’t Lyme and wouldn’t even consider a trial with anti-biotics. This, even after we had finally found a Ct naturopath who tested him again, and it showed up. Yup, for that infectious disease “specialist” even with a positive Lyme test, it wasn’t Lyme! She told us that the 10 month migraine was just the way his life was going to be. After finding a Lyme doc in Boston and after being treated with anti-biotics…..he got better!! He still must do periodic trials with anti-biotics, but he is back to 70%. Not perfect, but better than 0% which is where his life was before!

Another trial with naltrexone (see lowdosenaltrexone.com – a physician generated study which uses a drug prescribed for alcahol/addiction in low doses of naltrexone for auto-immune diseases) has also made a huge difference. Don’t give up. More and more doctors are becoming more Lyme knowledgeable and the NHS and CDC are finally recognizing multiple symptons and not just the “test” (also only about 50% accurate).
Bambi

I was diagnosed within 2 weeks of the tick bite, took the doxy as prescribed and I am still Chronic. The guidelines are flawed and a danger to the public. I have been reinfected every years since my diagnosis in 2005 and have NEVER had the “bulls eye rash” I suffered a stroke during IV treatment and am now disabled after a 20 year career. This disease kills!
Debbie Ellis

My ten year old was diagnosed last winter, after months of misdiagnosis by her pediatrician. We work with LLMDs only. She did five months of antibiotics and her symptoms reappeared this winter and is back on more antibiotics. I have had to become super educated about this disease as most people, and physicians, are not. It’s so hard to watch my daughter suffer…but we will do whatever it takes to make her well. �
My husband also had it, but currently is off antibiotics and feeling well. �
I know so many affected in our town of Bedford, NH, and I share what I know. Many chose to ignore the advice and I hope they aren’t struck down later.
Connie Katsos

My daughter andtwo grandchildren are being treated for this terrible debilating Lyme disease and infections that are a result of Lyme. She was a former school administrator in MA and NH and has had to walk away from her position to try to live! It took some time to be diagnosed after many ER and doctor visits and two children born with the disease..5 and 2 year olds. They travel to CT and to VT to see specialists. She had been documenting her daily struggles in a journal for almost two years which resulted in her recent publication of “What’s The Big Deal About Lyme” so people can learn about Lyme and the damage a small tick bite can do… sold on lulu.com. Makes me cry to read it. Thanks for the awareness of Lyme.
Jonathan Hudgins

Dr. Tom Mather just said “know where to look”, but didn’t tell us were.
Cat

Considering that the standard treatment for Tuberculosis is a year of antibiotics, it really should not be so surprising that Lyme, which spreads to so many systems in the body, would also be difficult to eradicate and need longer term treatment. I have Lyme and have been on antibiotics on and off and now am one year into IV antibiotic treatment. I am better but not there yet. This disease has completely changed my life. I was a committed mountain biker and enjoyed long endurance racing as well as hiking and was a third degree black belt karate instructor. I can no longer do any of these things; I have no stamina or strength and am unable to get up and do anything about once a week. And that is better than I was! Though when you see people they always say, “You look just fine.” I am not fine, I struggle each day – I want my life back!
Peter

I live in Framingham and have had Lyme for at least 5 years that I know of. I have successfully eliminated the symptoms of lyme and have rid the active spirokete/ bacteria and have been able to do so “naturally” with herbs. there are techniques out there to support those who have lyme naturally. I have worked with many a person with positive results. The video “under my skin” is educational and will show the scope to which this country needs to address this pandemic. I was just in Pottstown Pa at a gathering and at least 1/2 of the people had been infected at least once. In my opion blood tests are ineffective and antibiotics only suppress in most cases. i estimate i probably had lyme for years before i was diagnosed. i was always chasing other “symptoms ” that would make me feel better but not perfect. don’t give up hope ther are ways!!!!
- Jenrleary
  
  To Peter are you a practitioner? If so I would like to conact you thx
- dave
  
  Peter what did you use? TOA free cats claw? Allicin?
Medfield ma

Last year both of my dogs were diagnosed with Anaplasmosis and I with Lyme and an equivocal diagnosis of erlichiosis.

I find it interesting that my all white dog attracts ticks that are black (mature?) and my black dog gets ticks that are a younger stage with a red body. I have made a few calls to see if any researcher is doing any work that might use this anecdotal info, but haven’t found anyone.
krystilangel

What do you do when the management of your apartment community ignores your reports of deer ticks in your apartment and all over the property & requests to treat the area? My disabled and sick mother also lives with me and Lyme Disease in her condition could seriously compromise her.
Leslie Tharp

THANK YOU so much for running this series. I was diagnosed with Lyme here in Florida in November 2011 and have been going through antibiotic treatment ever since. I am desperate for medical improvements, but the first step is awareness. This is for real, and it’s not only a NE problem.
Karen Tharp

Sincerely, this is amazing! I have been in treatment for five months, and I never would have gotten tested if my sister (previous comment) hadn’t urged me to do so. This really is one of those diseases that people don’t get until they get it, so this series is very important.
cambridge

I got Lyme disease about 8 years ago on the Cape. It was the weekend so I went to the emergency room, showed the doctor the 5 inch bullseye rash on my leg, and said I thought I had Lyme disease. He looked at my leg and said, “No, that’s a spider bite.” I went home and my brother convinced me to go back the next day when I saw another doctor who also told me it was probably a spider bite but also tested me for Lyme and agreed to let me get the blood test- which turned out to be positive.

My uncle in NY recently got Lyme and said his doctor also first told him it was a spider bite. Is there any kind of spider on the east coast that makes that kind of bite?
- Batikquilt
  
  My daughter had what the pediatrician called a spider bite on her forearm when she was two years old. The doctor said it didn’t need to be treated. Now at 15, she is very ill with a CDC positive confirmed case of late-stage Lyme. I’ll never know if this was when she was infected, but it does make me wonder how many other people are walking around with so-called spider bites and not being treated appropriately. A round of antibiotics at the time of the rash would have been SO much less expensive, not to mention the most important tragedy of all, the loss of a child’s adolescence. She’ll never get that back AND she is in constant pain.
Another Case

I handed the Falmouth E.R. physician a note of my head-to-toe symptoms, a picture of my rash and said, ” I think I have Lyme’s.” I was losing a pound a day, my kidneys hurt, my chest hurt, I couldn’t even sit up. They treated me for dehydration and sent me home. Two days later, the E.R. left a message for me to call, which I did, only to leave a message that I returned their call. They called me back 2 days later to say my Lyme’s levels came back at 23, where as under 1 was normal and that I also was diagnosed with Ehrlichiosis and Babesiosis. Aargh.
Juliabradford

10 days ago, I came down with a low fever which came and went. Because I had similar symptoms seven years ago when I tested positive for Lyme Disease, I went to see my doctor’s partner in NYC the next day. (I had spent the previous four weekends gardening in RI.) This doctor did a Lyme test that came back negative. When I called and asked to speak with my own doctor, the call was returned at the end of the day by the receptionist telling me to call on Monday to make an appointment with another of his partners. My doctor had gone on vacation.

I was furious, let down, and of course, I am now in RI and not about to go to NYC to see another doctor who is unfamiliar with Lyme. I am not sure what I’m going to do, but I have a constant low fever and it’s been going on for ten days. All I want to do it go on antibiotics. It seems so straightforward to me. And no, I don’t have HIV or Lupus.

Any good recommendations for doctors in the Westerly, RI area who are Lyme literate?
- Laura Jones
  
  I just got diagnoses with Lyme by Jeff Burnham who is a Physician’s Assistant in North Stonington, Ct. He works under Dr. Stephana Pecher. Jeff was very schooled in Lyme Disease and the testing. Dr. Pecher’s office is right over the Rhode Island boarder , only 10-15 minutes from Westerly.
  - Juliabradford
    
    Thank you so much. I will keep both names. Yes, I am very close to North Stonington. I spent most of Monday in the ER where they diagnosed Anaplasmosis – based on clinical symptoms including elevated liver enzemes. Now that is being looked into further!
- guest
  
  Not sure about Westerly, RI, but you’re fairly close to Madison, CT and can try to get an appointment with Dr. Kornelia Keszler.
p_cayer

I was misdiagnosed for decades. Standard two-tier testing was always
negative. When my symptoms became undeniable (MS-type symptoms,
cardiac, neuro, psych, arthritic) I did my own research and diagnosed
myself. Got it confirmed by IGENEX Lab and ILADS doc. My own
mainstream PCP would have just watched me die of this disease. When I
finally confronted him and demanded to be treated for Lyme, he said,
“Know what? I think you DO have Lyme.” He was going to send me to
Yale, a bastion of Lyme denial. No thanks. I went to an ILADS doc for
treatment.

This pandemic is so huge, that if every person with Lyme were to be
properly diagnosed and treated, our health care system would COLLAPSE.�
Real estate values and tourism dollars in Northeast would PLUMMET.�
Connecticut is the INSURANCE CAPITOL of the WORLD. Insurance companies
would go BANKRUPT.

It is this reality that is keeping the government, CDC, and medical
establishment from acknowledging the magnitude of the pandemic. People are dying. My mother was one of them. I estimate half my
neighborhood here in CT has Lyme, most undiagnosed or misdiagnosed. Many
young people in their 20′s totally disabled with “mystery” illnesses. I
have reported one doc to the State Medical Board for trying to cover-up
a Lyme death. They are investigating.

Prepare for a medical scandal the likes of which this country has never seen. Think Tuskagee Experiment times a million.
bangkokmichael

I had no symptoms at all. Tests revealed I had Lyme Disease, after getting a test to determine why I suddenly had a heart arrhythmia that occurred with no reason. Luckily in the test, doctors found I still had the body’s natural antibody fighting Lyme, and this meant I had only contracted within past two months [January & February]. No telltale red ring, fever.
- TL4
  
  But Dr. Drapkin’s colleague told me there are no ticks in February, so how could you have possible got your bite in January or February. My second bite was in Feb. 2006 and was dismissed. Living with chronic lyme as are my four children who all inherited it from me.
  - bangkokmichael
    
    Hi just saw this. Living in the Berkshire Mts in western MA, last winter was very mild. According to local researchers, the tick population exploded due to lack of winter-die off of mice. Why within previous two months. According to two doctors here, its seems there is a natural antibody the body puts out in first two months of contracting the disease. I still had it in my body when tested in March.
Jbs1buck

I live next to Dover MA (lime capital of MA per capita) and have had over two dozen ticks over last 10-12 years. Had 1/2 dozen ticks diagnosed with lime by lab.. I have stressed getting antibiotic each time. I have had ring, rash , fever with flu like symptoms on a few of these occasions. I do take prevention with my dog, yard and while hiking – hunting. I am one of the luck ones, whom has not contracted lime disease, yet… Is there a spray similar to Grub – Tick Guard to reduce tick larvae?
- Janis
  
  I didn’t know I had chronic Lyme until I was tested by a Lyme Literate Medical Doctor (LLMD). I did not know about Lyme until then but historically I could recount similar bites, target rashes and side effects over the years prior to getting a Lyme test. I was raised in the deer hunting grounds of the Catskill Mtns, played in the woods, ran though tall grasses and had every opportunity to get bitten as a child. At age 42 I pulled a tick off my back, drown it in rubbing alcohol and took it to the medical clinic for testing and identification, as per instructed by my Lyme literate partner. The clinic took the tick and tossed it in the trash. I got the antibiotic 10 days after I found the tick, when the rash appeared. The doctor I saw in Provincetown, MA would not give me antibiotics until then. I have been living with chronic Lyme’s side effects for almost 20 years now. You are lucky, if as you say, you’ve gotten antibiotics each and every time you’ve asked for them. But, I would suggest that you get in contact with an LLMD who will comprehensively rule out or confirm chronic Lyme for you. As we age the symptoms and side effects are very harmful to our hearts, liver, joints and overall health. Best of health to you.
MLaBonte

We are surrounded by plenty of vegetation and some deer, and our six cats all bring in ticks now and then. I learned about Lyme Disease when my wife got it a year ago, so when I was diagnosed three weeks ago I knew enough to take it very seriously. Unfortunately I never noticed a tick or rash, and the doctor says I probably got it at least 6 months ago. But the good news is that I found a doctor who made the diagnosis, challenge #1. So far the anti-biotics seem to be working, but it may take at least a month. Meanwhile the symptoms are limited to one badly swollen knee, not too bad as Lyme cases go. It will be nice to someday ditch the crutch and get a good night’s sleep.

I’m very pleased this series was produced. Every part has been useful, and I’m partly happy to see WBUR warning people outside New England that our level of Lyme Disease infestation could be spreading far and wide. Has anyone read Lab 257, about Plum Island? (http://en.wikipedia.org/wiki/Plum_Island_Animal_Disease_Center) It has all the elements of a conspiracy theory and is called that by many. But one thing the book points out is that Lyme, CT and the northern tip of Long Island are the two places where simultaneously the introduction of the disease to the U.S. began. Drawing a circle around them, Plum Island is at the epicenter of the outbreak. A dynamic map shown in the documentary movie Under Our Skin shows Lyme Disease starting there and traveling both through Connecticut and down Long Island before reaching other parts.

It seems to me it would be helpful to know how the deer in that area first got that particular Borelia, so that researchers might learn how to slow the spread or even find a way to eliminate it from the deer. But the fact that there was a secret bioweapons lab on the island at the time of the outbreak complicates things by slowing down the flow of information. There is some chance that the infected deer actually originated on the mainland, and other parts around Long Island Sound were infected from there. But a shroud of secrecy is never the friend of researchers.
Think Again

Lyme patients are well-advised to use caution in selecting
treatments, or specialty providers and organizations for information about the
diagnosis and treatment of infectious diseases. Many of the
self-proclaimed ‘Lyme-literate’ medical doctors may not be adequately
trained in the diagnosis and treatment of such illnesses, as they are not
infectious disease specialists. This controversy extends far beyond the
use or mis-use of antibiotics. Many dangerous and unproven remedies are
being skillfully marketed, targeted towards vulnerable patients and their
families.

One can use the Federation of State Medical Boards website to look-up any
recent and publicly available medical board findings about physicians, nurses
and other providers practicing in the United
States. There is a great deal of
misrepresentation throughout the Lyme community as to the reason certain
‘Lyme-literate’ physicians are being investigated by their peer-run medical
boards. You should read the board findings for yourself and make your own
decisions.

Use caution in the selection of other resources for information and support as
well. Patient support organizations and meetings may be quite similar to
the highly criticized Direct-to-Consumer advertising of pharmaceutical
companies and similar commercial and business interests.

Most importantly, remember to use caution when reading anything – keep in mind
that anyone can post online about anything, as well as misrepresent themselves
as a medical or science expert when they are not.

The continuing Lyme series by WBUR is a good starting point for disseminating
correct information to the public. Public awareness and education into
the methods used to properly diagnose and treat Lyme and similar infectious
diseases is certainly appreciated.
- Carol Houde
  
  Good advice.While reading all of these comments, I can’t help but feel that lots of folks are being bilked out of their money or fooled by medical charlatans who are�
  always out there to take advantage. It is very difficult for every one, including medical professionals like myself to know who to believe when the “medical profession” i.e. MDs are so uninformed, or worse consider anyone who crosses the threshold of a medical facility is either stupid or braindead. There is far too much arrogance among physicians. They seem very close-minded. At a time when antibiotic resistance is a concern, they are very willing to call ALL flu-like symptoms a “virus” rather than even consider (or to do the studies) that the affliction is in fact a bacterial infection. Sadly, very poor training is often a root cause of this behavior, supported by academia who collectively suffers from “wringing of the hands” everytime a prescription for antibiotics is written. Even when laboratory studies, including a comprehensive slide review indicates the presence of bacteria, an antibiotic is not prescribed! This wait and see attitude often has a poor outcome when the patient returns to the ER in a septic states a few days later- not very cost effective. I’ve seen this more often than not. Even when the untreated patient manages to “get better” there is a very distinct possibility the untreated patient will harbor a chronic infection well into the future. These subclinical infections may contribute to numerous future medical conditions including heart disease and sometimes stroke (chronic inflammation).
  The bottom line is do the work, find out the cause and treat it-PERIOD! How hard is that.
- MikeLaBonte
  
  In the documentary Under Our Skin, one doctor who no doubt has legitimately helped many Lyme patients was accused of writing prescriptions for unseen patients. So yes there is cloudiness out there.
  
  But the first problem Lyme Disease victims have is being diagnosed at all. I was affected near the beginning of 2012, but I was diagnosed with Lyme in June only after two previous doctors explored other diagnoses but not Lyme. I think the list of indicators for Lyme testing should be expanded. In my case the indicators were there but two doctors had not a clue. The third saw it immediately and the lab test was positive. The key is that he ordered the test.
  - Bambi
    
    Luckily the test was reliable for you. not the case for many
Deb

My 7 year old son was misdiagnosed for Lyme disease 3 weeks ago and we
just returned from 3 days at Children’s Hospital in Boston where he was
found to have Lyme Meningitis. I told my pediatrician 3 weeks ago that I
suspected Lyme (he had a fever for more than 5 days, an oozing bite in
the hairline, ring around the hairline, swollen glands and exhaustion)
but they flat out refused to test for lyme, instead telling us to wait 4
weeks and come back. They diagnosed him incorrectly as having
cellulitis, and the medication he was put on masked his symptoms for 10
days. Within 24 hours of coming of those meds, his fever returned
gradually, until he was so bad that he was throwing up bile. Still, I
was told that he merely had the stomach flu. I drove him straight to
Children’s Hospital Boston’s ER (wasn’t messing around anymore) where
they did a spinal tap. Yesterday at PICC line was inserted so that I
can administer his medication via IV for the next 3 weeks. This 7 year
old did NOT need to get this sick! I have blasted my pediatrician and we have contacted an attorney.�
There definitely needs to be more awareness, and for heaven’s sake,
just do the blood test. How difficult would that have been? I’m
certain that his 3 days of care at Children’s cost alot more than that
blood test ever did. Thanks to Obamacare and our new insurance that
just kicked in this month, it will cost us out of pocket about $1,000.�
Let’s vote this guy out!
- Mlcross79
  
  I had a similar experience myself in NY, including the out of pocket expense mine is $1500. Misdiagnosed 3 times by the local ER, when it got so bad that I was unable to stand we drove an hr to another hospital where they ,finally gave me the spinal tap.I agree with how you feel it’s horrible how Lyme illiterate Drs can be. I hope he’s feeling better.
- Jomccaghren
  
  What planet have you been on…really this has been a problem getting physicians to listen to people with Lyme way before you even heard of Obama…sounds good to blame someone then know your doctor and trust no one till you get what you need and are paying for! Hope you can sue him. But put the blame where it is due, the greedy drug companies and their lack if coporation with this disease.
Levi28

I was having some serious health problems and it felt like I was dying. I am uninsured and decided I will just go to the er and figure out paying the bill later. I seen the er doc and he can up with a couple possibilities. One was west Nile because it is becoming more common in Iowa. When he asked if I had a mark from a mosquito bite I said I believe so (not thinking the bite had anything to do with it), soon as I showed him he ruled everything out and diagnosed it as lymes just by the appearance. He also mentioned that he has only diagnosed lymes 3 times in his 20year career as a doc. He prescribed a mild antibiotic, doxycycoline for 14 days twice a day. The script at Walmart to be filled was around $7.00 and my bill at the collections dept was $379.00. That was all done with no community aide. Since my symptoms were so bad and deathly afraid of feeling the way I did with lymes, every time I get a headache or a fever I start to panic badly!! My dad is a nurse case manager and he didn’t know that I was sick until after I got out of the er and I told him and after I explained the symptoms and told him what it was he verified lymes and said because I am uninsured and never take any meds that the mild antibiotic will be more than effective. My suggestion is anyone prescribed antibiotics for this make sure you mention how many times you have been on antibiotics because the human body can build immunity towards antibiotics and that a mild antibiotic may not work if you have been on them before. Lymes is a miserable disease to live with prior to treatment and while being treated until it is arrested. No question and or suggestion is dumb so at the docs office, don’t be shy!!!
http://profile.yahoo.com/6IJ5VJPS6GDGRPQS6NH5S4KDNE Caile76

Ah, but the money isn’t there in treating people so they become healthy again, is it? *Much* more profitable to keep people in the dark about their own health, so you can sell them many more *treatments* and prescriptions they can’t use or that don’t work. Lessons learned from my 4 years-and-counting with Lyme so far: 1) Never go to a regular MD for anything related to Lyme; and 2) Don’t tell any specialist (you’re not seeing for Lyme) that you have it. Many times they won’t even see you if you admit you have it – or they won’t take you seriously – even if all they’re supposed to be treating is something simple: a broken toe, etc.
http://profile.yahoo.com/6IJ5VJPS6GDGRPQS6NH5S4KDNE Caile76

Actually, it’s world-wide. And yes, it’s not just a NE problem. We have it here in Northern Virginia, too. The CDC’s maps severely under-report Lyme, but the biggest concentrations are on both coasts.