Video: Navigating the debate
Tick-bite prevention strategies
- If your yard borders woods, spread mulch made of cedar chips, a natural insect repellent, along the perimeter. Gravel and other mulches help, too. Planting deer-resistant plants and installing high fences can help keep deer away.
- Do daily full-body tick checks, remembering that the most dangerous deer tick is in its nymphal state, black-legged — and no bigger than a poppyseed. Ticks must be embedded 24 hours before they can transmit infection.
- To prevent tick bites, use sprays that are at least 35 percent DEET, reapplying every four hours.
- Spray your clothes with a natural insect repellent called Permethrin (available at outdoor sports stores).
- Use year-round anti-tick and anti-flea products on your pets and check them daily for ticks.
- Wear hats, long sleeves and pants. Stuff pants into socks when hiking; wearing light-colored clothing makes ticks easier to spot.
- Stay on trails, and walk in the center of them to avoid overhanging grass and brush. Ticks tend to hang on low-lying leaves or grasses waiting for a person upon whom they can hitchhike. Conduct hourly tick checks while hiking.
- Avoid tick-infested areas, especially during May, June and July.
- If you do find a tick, remove it gently with tweezers, applying them as close to the skin as possible and trying not to crush the tick’s body. Cleanse the area with soap and water.
- If a fever and headache and/or bull’s-eye rash develop, seek medical attention as soon as possible. If left untreated, infection can spread to joints, the heart and the nervous system.
- If you want to find out if the tick is an Ixodes, send it to a local Extension agent who will forward it to the insect identification lab at Virginia Tech. Store the tick in a small, airtight jar with a few drops of rubbing alcohol.
Sources: Dr. Kevin Griffith, Centers for Disease Control and Prevention; Dr. Thomas Kerkering, infectious disease section chief, Carilion Clinic; Eric Day, Virginia Tech entomologist
How Lyme disease is diagnosed
The official word on how to diagnose Lyme disease from the Centers for Disease Control and Prevention:
- Doctor-diagnosed bull’s-eye rash greater than 5 centimeters; this usually increases in size three to 30 days after infection. (Not all patients will develop the rash or recall a tick bite.) Some patients develop additional lesions elsewhere on the body.
- Fatigue, chills, fever, headache, muscle and joint aches and swollen lymph nodes. (In some cases, these may be the only symptoms of infection.)
- All criteria, with exception of rash, must be supported by a positive lab finding to be counted under CDC surveillance guidelines.
- A two-tiered blood test can be helpful in diagnosing the disease, but only after two to four weeks, after the antibodies develop. Early Lyme disease is diagnosed based on symptoms and the possibility of exposure to infected ticks.
Lyme symptoms
Untreated, the infection may spread to other parts of the body within a few days to weeks, producing an array of symptoms including:
- Loss of muscle tone on one or both sides of the face (called Bell’s palsy);
- Severe headaches and neck stiffness due to meningitis;
- Shooting pains that may interfere with sleep;
- Heart palpitations and dizziness due to changes in heartbeat;
- Pain that moves from joint to joint.
The CDC does not acknowledge the existence of chronic Lyme disease, which advocates use to refer to what they believe to be a disabling post-Lyme illness that can cause arthritis, neurological and/or heart problems. But the CDC does concede the following:
After several months, about 60 percent of patients with untreated infection will begin to have intermittent bouts of arthritis, with severe joint pain and swelling; large joints are most often affected, especially knees.
In addition, up to 5 percent of untreated patients may develop chronic neurological complaints months to years after infection, including shooting pains, numbness or tingling in hands or feet, and memory problems.
“Most cases of Lyme disease can be cured with antibiotics, especially if treatment is begun early in the course of illness. However, a small percentage of patients with Lyme disease have symptoms that last months to years after treatment with antibiotics.
“These symptoms can include muscle and joint pains, arthritis, cognitive defects, sleep disturbance or fatigue. The cause of these symptoms is not known. There is some evidence that they result from an autoimmune response, in which a person’s immune system continues to respond even after the infection has been cleared.”
SOURCE: Centers for Disease Control and Prevention
Finally, some long overdue coverage of the Lyme epidemic! Thank you, thank you. The official cover-up of the chronic Lyme catastrophe is the most explosive scandal in American medical history. Thousands of sufferers are left untreated. Many do not know why they are sick. My wife suffered under misdiagnosis for fifteen years, and came close to death. A brave, wise doctor saved her life. We have paid medical insurance premiums for more than fifty years, yet our carrier refuses to help with the expensive treatment….right here in America.
Comment by Horace D. Douty — December 20, 2010 @ 8:22 am
I contracted lyme while living in SC, 2008. Of course it went undiagnosed for over a year and a half. I had the classic flu like symptoms, joint pain, heart problems. Doctor after doctor said “I sure had something, but they did not know what”!!! I had to have a pacemaker put in June 2009, the wiring in my heart was deteriorating, but the CDC said I didn’t have lyme..”I sure had something but they didn’t know what”. At the start of May 2010 the neurological problems began. I literally could not even force myself out of bed. That is when I found a lyme literate Doctor who began to treat me. First with oral antibiotics, now on daily IV treatment.
How dare the IDSA say they shouldn’t be treating chronic lyme when I am literly going down the tubes, and they are watching scratching their heads saying, “I sure have something, but they don’t know what it is”!! I challenge everyone of the skeptical doctors out there to expose one of their family members to a lyme tick, and treat them according to the CDC guidelines, and God forbid they not get well, then just sit there scratching their head saying “They sure have something, but I don’t know what they have”!!! (and then do NOTHING!!!) Who among you brillant doctors are willing to take the challenge? There should be no hesitation since you so ADAMANTLY believe that chronic lyme does not exist. Or perhaps you would be willing to allow me to provide a blood donation to one of your family members in need? Think about that before making an assumption that is effecting more patients than you know.
As far as gathering accurate information on lyme patients, what doctor in their right mind is going to risk punishment from such a bias group of people. It is time for this nonsense to stop. It is time to treat people humanly. It is time to uncover the BIG mystery surrounding Lyme Disease. It is time for everyone to demand an answer from your local politicians on why the CDC, and the IDSA are so out of touch with the reality of Lyme. We DO pay their salaries. We DO deserve a truthful investigation into why in the year 2010 a tiny tick is able to cause so much illness and controversy!!!
Comment by Suzanne Sofield — December 20, 2010 @ 9:01 am
Thanks to a friend in Penhook I have seen Beth Macy’s series on Lyme Disease. Thank you so much for such a balanced and informative report on the debate concerning the treatment of (and indeed even the existence of) Chronic Lyme Disease. Your information will hopefully help to encourage more patients to demand, and physicians to provide, adequate care for those affected by this rapidly growing problem. As a victim of tick-borne disease fortunate enough to have found a physician open-minded and brave enough to buck the establishment, I am aware of many stories of ongoing treatment changing the lives of people of all ages. Perhaps Ms. Macy’s series will be instrumental in saving the health and lives of many more victims of this devastating disease — not only in the Roanoke area, but all over Virginia.
Comment by Polly Bevins — December 20, 2010 @ 9:40 am
Thank you for helping to educate people on this frustrating disease. I myself went undiagnosed for years, while doctors scratched their heads and/or shrugged at my mounting list of symptoms. I felt like I was losing my mind, and I probably was. For eight months I was so sick I could only spend a few minutes at a time out of bed, and had to be supervised in the kitchen and driven to appointments due to forgetfulness and confusion. It was completely debilitating. I was fortunate to find a local doctor who recognized Neuroborreliosis, and after 15 months of oral antibiotics, supplements, dietary changes, and complimentary care, I have my life back. I am one of the lucky ones. So many people suffer irreversible damage to their bodies and lives while the controversy rages on. Frightening!
Comment by Valerie Johnson — December 20, 2010 @ 4:50 pm
I contracted lyme in June 2007, but my primary care doctor missed the classic symptoms. Within about 3 months I began to have horrible, neurological symptoms which basically disabled me from functioning in society – including not being able to do my job. After seeing 5 specialists who had no idea what was wrong with me, my primary finally tested me for lyme,and the test came back positive. She then diagnosed me with chronic lyme, but said she couldn’t treat me because of danger of losing her license. I then went online and found a LLMD (Lyme Literate Doctor). These doctors risk their licenses to treat very sick lyme patients with long term antibiotics. Since starting his treatment I am now working again and feel 95% healthy. We are hoping to stop my antibiotics in maybe another 6 months or year.
Comment by Don Knieriem — December 20, 2010 @ 6:25 pm
I really appreciate your attention concerning lyme disease. As you know it is an llness that is complicated to diagnose and difficult to treat. I was diagnosed two years ago after suffering for over 8 years.
I had a great life before lyme disease slowly and steadily robbed it from me minute by minute, day by day. I have a wonderful family that over time was taking care of me as the disease slowly disabled me. Before lyme my passion, other than my family, was raising horses. I had them for over 35 years. But lyme disease stealthily robbed me of this love and I had to give the horses up. I was in constant pain and my only relief was lying in bed. Sleep was not even a comfort because as devastatingly tired as I was, I could not escape from the pain because lyme takes even the last comfort of sleep. I would take my two boys to soccer practice and literally crawl in the back seat of the car to try and rest. I had migraines, skin rashes, chest pain, heart palpitations, digestion problems, and my memory was affected. I HURT all over. I ran a low grade fever every day. It’s like I had the flu… everyday. Looking back, I can trace it to a bulls eye rash that I had in 1999 that was thought to be a spider bite on my arm. I have a photo of it. I was never tested for lyme disease at that time.
My health slowly deteriorated and I did not “connect the dots”. I traveled from doctor to doctor year after year. I was diagnosed with fibromyalgia, chronic fatigue, lupus and many other ailments. But nothing was the ANSWER and I desperately wanted answers. I wanted a cure… a chance to feel better and have a life! I have two beautiful boys who needed me. I constantly did research and looked for answers. One day, I saw a commercial for our local news station WSET in Lynchburg, Virginia. The news anchor was going to do a special 3 part series on LYME disease. When I saw it I knew that was my life they were talking about! Finally, an answer. I contacted the news anchor and had so many questions. She has also suffered with lyme and I felt her story was so real and so much like mine. She ended up doing a follow up story on the news and interviewed me for it. I continue to have people call me who think they may have lyme and can’t find answers. It’s so heartbreaking. So many people can’t find help.
My next step was to educate myself and then find a doctor who would treat me. As you know, so many doctors don’t want to follow the protocol of continuous antibiotics but I had to try. I had no other choice. I traveled 4 1/2 hours ONE WAY to see my doctor and after a year and half of treatment I am so glad to say I have my life back. I remember the day I first saw her and she said, “I know what is wrong with you and I’m going to help you.” And she did! She gave me my life back. All of the tests came back positive. I was also suffering from another tick born illness called Babesia that reeks havoc on your body and can also kill. It’s been a long, tough fight but I feel ALIVE again. In fact, since then I have finished my 4th – 5K marathon! I ride my bike almost every day and best of all I can be a mom to my wonderful boys!
It is a miracle! I have worked very hard to get better. I still get tired easily and have to really pace myself. I pray that I will continue to get well. It would have been easy to give up; just lie in bed. But I will continue to fight. I have too many wonderful reasons not to. But we do need HELP from the medical community and that’s why I applaude your efforts. Please don’t give up on us. Lyme disease is a very complicated illness and it devastates many lives right here in our area. I also have 3 dogs who have been diagnosed and treated for lyme disease. I can’t imagine where I’d be today if the pieces of the puzzle had not come together for me. There are people suffering who can be helped.
Anyone who thinks lyme dosen’t live here should have to walk a day in my shoes 3 years ago. But I wouldn’t wish that on anyone.
Comment by Sarah Epps — December 21, 2010 @ 3:20 pm
In response to the article “Salvos launched in Lyme Disease”. It baffles me to think who is behind all this logic in the Lyme dispute. Health insurance companies, politicians, lawyers, the CDC? Have any of those people or their loved ones ever suffered from day after day of being ill, running from doctor to doctor trying to get an answer?
I can’t believe we are wasting billions of dollars allowing people to go from doctor to doctor, have test after test, surgeries, and be put on an enormous amount of medication that is not needed when the solution is so simple. Educate these professionals on Lyme’s Disease. We are willing to spend all these dollars searching, when if they were educated and were treating the correct diagnoses from the start we would save an enormous amount of money. Plus the dignity of a person trying to lead a normal life without feeling sick day after day.
In reality how much can long-term antibiotics cost compared to ignoring Lymes and having ill patients on a wild goose chase for years. Or, is this a political scam for extra income for doctors, the CDC, etc.? Antibiotics are relatively cheap compared to the cost of searching and searching for an answer. If the CDC and others don’t like long-term antibiotic use as a treatment than find something that works. But, don’t just ignore and downplay Lymes as a disease.
I myself have been sick for at least 8 years. I’ve been to 15 to 20 different doctors. I’ve had numerous procedures, test and surgeries. Which have all given me no answers and I continue to feel ill every single day of my life for years. And, NO it is NOT in my head, I am NOT crazy. I am sick and I want a normal life. I want to raise my kids and enjoy life. I force myself to do the best I can. I’m on disability as I just couldn’t work and carry on the load of raising a family with all of my health issues. In short, I urinate 25 to 45 times a day, catheterize myself daily to control pain, suffer severe IBS and constipation with abdominal pain. Have TMJ, eye twitching, headaches, fatigue, sinus problems with a severe sensitivity to smells and light. My neck creeks, cracks and is so stiff. My shoulder kills with pain. I have fevers often, swollen glands, chills, rashes and repeatedly am being treated for one thing or another. And, my heart has acted up and deteriorated.
Now, I am an RN and if I heard a patient tell me those symptoms and looked at the full picture. And, assuming I were educated about Lymes Disease. A light would have went on instantly, “she has Lyme’s”. In stead we are willing to pay the cost of a urologist, gastroenterologist, ENT, allergist, orthodontist, neurologist, orthopod, immunologist, cardiologist and on and on. Each of which did a full work-up and can’t explain why these symptoms are occurring. So they try drugs, procedures, surgeries, test after test and on and on. Senseless, totally senseless. And, I still feel miserable every single day of my life. Talk about a missed diagnoses, a total waste of a good person’s life and an enormous amount of money in the good doctor’s pocket. That in short is the full picture.
I would trade anyone a week in my life. I’m sure they would be at the ER door several times during that week. Let’s wake-up and recognize Lymes Disease. EDUCATE, EDUCATE, EDUCATE the medical field so they can recognize and treat patients suffering with Lymes in it’s early stages. So people don’t have to suffer needlessly with Chronic Lymes. And, those that have Chronic Lymes can be treated properly so they can have a full-filling life. I desperately want to get back to work.
I might also add. That regardless of my positive test results from IGENEX labs with 6 bands in Igm being positve I have still not been seen by a doctor. I have called and faxed my test results numerous times to my Immunologist in Iowa City and still have not received a call from her. And, this positive result does meet CDC criteria as being positive for Lymes. So, I guess I will have to wait until the end of January to see a ILADS doctor who hopefully is willing to attempt to give me some answers and treat me as a person and a patient in this battle. It is so hard to believe we allow this type of practice to go on in the medical field. But, won’t allow patients to be treated by ILADS doctors who truly want to help their patients.
Comment by Deb Mihm — December 21, 2010 @ 5:14 pm
As a Chronic Lyme survivor and Lyme advocate I would like thank you for the great information being published in this article. Awareness is key to bringing much needed change to treatment guidelines set forth by the IDSA (Infectious Disease Society of America)
Awarness is key to saving lives of entire families now being affected an infected by Tick Borne Illnesses.
Together we can make a difference!
Comment by Trish — December 21, 2010 @ 6:01 pm
According to Jesse Ventura’s Conspiracy Theory TV Show, Lyme’s Disease is a Bio Weapon invented in an US Military research lab on Plum Island. Apparently Nazi Scientist were rounded up after WW2 for their skills in bio warfare. Most notably those delivered by ticks. Plum Island is located in close proximity to Lyme Conneticut. What are the odds of that??? If the CDC is so convinced that a short dose antibiotics totally eliminates the disease then why don’t they volunteer to put their money were there mouth is and put a tick with Lymes on them and then take their own medicine. If the government admits that the antibiotics aren’t 100% reliable and they invented this out of control bio weapon, they will be on the hook for massive damages that is growing one person at a time and spreading. Happy hiking! Definition of a scientist: A person who knows nothing until there is nothing left to know—from The Omega Man—
Comment by Walter Allen — December 24, 2010 @ 12:16 am
Thank you for investing the time into reporting this. Thank you Thank you!
Comment by Emily — December 24, 2010 @ 12:37 pm
Thank you, Ms. Macy, for providing a well researched article on the realities of living with Lyme disease.
All too often articles provide an anti-Chronic Lyme view which leaves the Lyme reader suspecting the motives and agenda of those who provided the incorrect information. For the novice reader it leaves them with bias towards the Chronic Lyme patient, and misinformation that could cost them their own life or the life of their loved ones.
Lisa Torrey
President
National Tick-Borne Diseae Advocates
Comment by Lisa Torrey — December 28, 2010 @ 12:44 pm
Dear Beth
Thank you so very much on your Lyme disease (LD) stories.
I have been researching Lyme disease since late 1994 when my wife
Betty took very ill. We had neighbors that had been diagnosed with
Lyme disease.
Unfortunately when Betty was tested for (LD) the results were only
borderline and the dr refused to treat her for LD.
The next 4 years Betty went to many doctors searching for a correct
diagnosis. The University of Virginia diagnosed Betty with
fibromyalgia. This along with chronic fatigue, sleeping sickness and
even, “it’s all in your head”.
In 1998 we finally visited a Lyme Literate MD (LLMD) on Long Island
who was very familiar with LD. When Betty relayed all of her symptoms
the LLMD was positive that she had LD, even before any lab tests were
completed.
Betty was given a lab test (LUAT) Lyme Urine Antigen Test which came
back highly positive for LD.
When the LLMD gave her a prescription for IV antibiotics we returned
to Amherst, VA. We were turned down by 4 different MD’s in central VA
to treat Betty with IV antibiotics.
Shortly afterwards we found a LLMD in PA. It was a 400 mile trip every
month for more then 2 years. Over the next 18 months Betty received
several different IV antibiotics.
Before the IV’s started, Betty had to be carried into the house
because she was so weak. We have had to refinance our home three times
in order to pay for medical expenses that are not covered by our
medical health insurance.
An initial visit to a LLMD may cost up to $600.00, which is
out-of-pocket. A 30 minute phone call with the dr is $165.00 and is
also out-of-pocket.
Prior to becoming ill Betty was a Physical Education teacher for more
then 30 years. She played softball in her 50′s and would go square
dancing 4 or 5 times a week.
She would be tending to her one acre garden, keeping the lawns
manicured and canning our vegetables and fruits.
All this energy disappeared. Today Betty needs the use of a wheelchair
if she wants to go shopping in the Malls.
Thank you again for your excellent journalism and investigation about
the Lyme Controversy which coincidently was discussed in Congress in
1993!
Sincerely,
Joseph L. LeBlanc
Member – Board of Directors
National Capitol Lyme & Tick-Borne Disease Association
http://www.natcaplyme.org
Central VA Chapter
235 Dug Hill Road
Amherst, VA 24521-3843
(H) 434-277-8346
(C) 434-941-7382
Comment by Joe LeBlanc — December 29, 2010 @ 12:07 am
Lyme disease writeup in Los Angeles Times
http://www.latimes.com/health/la-he-lyme-disease-20101227,0,668996.story
Comment by Jerry Moles — December 31, 2010 @ 4:42 pm
From a reader in Floyd, Va.
Dear Beth,
I wrote a letter to the editor but with 200 words or less it is difficult to really get folks to understand what I am feeling.
As I read the articles about the people with Lyme disease and what they are going through it brought back too many feelings of desperation for me. I too had to seek treatment outside of the Roanoke area. My insurance paid for me to go to the Jemsek clinic in NC before Dr Jemsek lost his license, which I thought was just a great loss for those who have Lyme disease.
I do not understand why when so many people are getting better on his treatment and treatment like his that it is not seen as “evidence” that the treatment works. I was so sick but I was a single parent with 2 children in high school, I worked full time and since I was a teenager I had been plagued with odd medical issues that could never be explained. I was told after being in Roanoke Memorial for 2 weeks, then UVA and then MCV that I had Connective Tissue Disease but they couldn’t tell my parents what type. This diagnosis came only after my sedrate was elevate once. I was 16 years old and so tired of being in hospitals. I had so much fatigue and pain but I was tired of no one being able to help me so I gave up.
Then, when I was 29 I had a hysterectomy and got a fever that the Dr’s couldn’t figure out how to get rid of. So, finally they allowed me to go home after a week only if I agreed to see my family Dr who did a test for Lyme and other tick borne illness and the test came back positive so he treated me for it with 30 days of antibiotics. I can remember my Grandmother living with us and she and I would both have the same trouble getting up due to joint pain, it was unbearable, at 29 years old!
8 years later the same Dr made fun of me for calling his office and suggesting that my Lyme disease was acting up. His nurse asked me in a demeaning tone “Dr. Smith wants to know what hat you pulled this disease out of? I mean have you been reading a book or been on the internet?” I was livid! So I explained that if she or Dr Smith had bothered to look at my chart maybe they would have seen that he diagnosed me with it 8 years earlier. She put me on hold then came back a few minutes later with a very nice tone telling me to come in at 2pm. I did go in and pick up my records, I switched Drs and yes it was a Carilion Dr.
In 1999 I had to have my left hip replaced, it was from the Lyme disease, Dr Jemsek called it Lyme Joint, the Dr who replaced it told me he found “stuff” in the joint, he described exactly like what I found on Dr Jenseks website years later. The Carilion Dr who replaced my hip, and did an Awesome job, had never seen Lyme joint, had no idea what it was. But it ate my cartledge was gone. I also had a secondary condition, the parasite, Babesiosis.
Another 8 years after later I found myself with memory problems, chroronic fatigue, I started having memory problems, couldn’t remember driving home, spending time with my children, or even how to do my job some days. It was scary. I would come home from work, get dinner for my children and go to bed. I was never like that, ever! I was the person who got up at 5 and was in bed at 11. I had so much energy, my mind just went all the time. I was busy. I did a lot of work with my church, with my children taking them to sports functions, school functions etc. I did not like to sit around at all. I rarely watched TV, didn’t even really have a favorite show to speak of. I loved life and loved being busy. Lyme had taken time away from me before but never like this!
I had Babesiosis and Bartonella when I was tested at the Jemsek clinic. Both from being bitten from a deer tick with I was 5 or 6 years old, yes in Roanoke. When I was a child I was had Bells Palsy, another side affect of Lyme disease you do not hear much about.
I have a Port A Cath that was used for my IV 6 months of IV therapy. I was also on oral antibiotics at the same time. I was sick from them but still worked full time. I administered the meds myself, being a single mom I had no choice. Within 2 weeks of me taking a really nasty thick yellow oral antibiotic, the night sweats stopped! That was nice!!!! While on IV therapy I would lay and watch TV at night, had to stay still so I wouldn’t throw up. The meds left a terrible taste in my mouth too. The only thing that would get rid of it was Coke C-2 and they took it off the market! I was not happy that day when I was unable to find it. I kept the Cath just in case I need it again. I have to flush it each month with saline and heperine to keep it clear.
I am so thankful to Dr Jemsek for what he did for me. I have no idea where I would be without him. I have had several treatments of oral antibiotics since the IV therapy and so far that has been beneficial. Most of my life has been riddled with some kind of unexplained problem until Dr Jemsek came along and answered my questions. So many people out there have medical issues that are unexplained, they may not be Lyme disease but then again they may be. After a while the Lyme test comes back negative. Mine was positive at age 29 but when I went to Dr Jensek it was negative, however I had the bacteria and the parasite so I still had Lyme disease!!
It is NOT curable. You do not get it, get rid of it and get it again. The redcross will not allow me to donate blood. If Drs say this is not a problem how come I can’t donate blood now that my test is negative? Also I can’t donate my organs either, if someone gets a transplant and is on antirejection drugs they WILL get very sick and could die. I will not do that to anyone. My brother had a kidney and pancreas transplant, the second chance at life has been something wonderful for him but I have also come to realize how easily it can be taken away by one tiny organism like babesiosis or bartonella.
I can give this to my children if I have it while I am pregnant with them. I can give it to someone through a blood transfusion or an organ transplant and Carilion Dr Thomas Kerkering is so high and mighty he wants to say it doesn’t exist. Chronic Lyme disease does exist and it does cause serious harm to people. Dr Kerkering took and oath, he has become so big that he has forgotten that. Some Drs seem to put their worth, their name, their existance above the patients needs. Carilion should be ashamed to have him speak for them. They should want to be able to help those of us who have Lyme disease even though it isn’t going to help them financially. I have a feeling that is what this is all about anyway, the Drs are not going to get rich treating this illness but Dr Jemsek did see a boat load of patients and other Drs became jealous (in my opinion) of him, thinking he was taking business away from them so they decided to report him and all he was doing was helping his patients. My insurance didn’t pay him a lot of money at all. My treatment was handled here in Roanoke by my Dr and I picked up my IV meds here as well. I just had medical visits in NC twice a month, then once a month. I called when I had a problem, everything else was handled through my Dr who was in contact with Dr Jemsek and there was no charge for that. He really cares about people, something Dr Kerkering has apparently forgotten about or maybe he never really cared, maybe like other Drs it has always been about the money, maybe that is why he is with Carilion.
Today my Lyme is under control because I was able to get the proper treatment and hopefully I will be able to get proper treatment in the future. I just hope and pray others will too. If something does not change there will be a lot of folks out there on disability, losing there homes, there livelyhood, unable to work, like those in the articles I read. What will it take to get Carilion to wise up? What will it take to get the medical profession as a whole to wise up? I applaud Dr Chhaudry and especially Dr Harbor for what they are doing to help us. I know who I will go to the next time my Lyme symptoms come back, in fact, I may just go see one of them before that, just because they seem to be the kind of Dr I want on my side anyway!
Life is too short to fight with insurance companies and medical facilities to give us what we need for our health. We pay for insurance to help us with our medical costs. We go to Drs to help us with our medical problems, when they both let us down we have a problem. Looks like Lewis Gale Drs are here to serve us with our medical needs as well as Dr Harbor, in her own practice in Lexington, VA. A Carilion Dr misdiagnosed me and did a surgery that was unnecessary. He continued not to listen to me, he was arrogant, just like Dr Kerkering and now I am left with a condition that I am told can’t be cured. He did rotator cuff surgery when I actually had 2 herniated disks in my neck. What kind of Dr gets that confused? So the nerve damage has caused me to have RSD and I am in constant pain. I am not suprised that another Carilion Dr is taking this kind of stand.
To close. We need to take our health into our own hands sometimes. We need to fight, we need to get up and take a stand! I want to tell everyone, do what you have to do and don’t give up. I had to keep going to my Dr and begging that they keep looking. My Dr didnt look at my history so she didn’t know I had Lyme disease, I had to tell her the story about Dr Smith, so sometimes we have to go over and over our histories, we have to tell our Drs about all our symptoms, even when we think they aren’t related. Please, do not let it get so bad that you get where I was. If you have a lot of multiple symptoms, unexplained problems, go to the Lyme disease website and look at the symptoms, you will be so amazed. Read up on the entire disease. You just might find out you have something you can get treatment for and feel better.
I have no idea if you want my information or not but I wanted to give you my 2 cents anyway. Have a great day. You may contact me if need be.
Sallie McClanahan Godwin
Comment by bethmacy — January 3, 2011 @ 10:57 am
Self-described chronic Lyme skeptic Ken Sosnowski doesn’t want people to be treated unnecessarily with antibiotics. Neither do I. But unless we are the patient, it really isn’t our choice.
Doctors are ethically bound to give their patients complete information about the risks and benefits of ALL the treatment options, and then to stand aside and let the patients make the choice. After all, it’s their body and their life. Just as we allow cancer patients to choose dangerous treatments that don’t always cure, Lyme patients should have the same right to choose. Research shows that antibiotics are not dangerous, and when patients are given choices, they tend to choose less invasive, less expensive options.
Patients and their caregivers who want help and support may join VirginiaLyme by going to http://health.groups.yahoo.com/group/virginialyme
Comment by Phyllis Mervine, CALDA — January 4, 2011 @ 4:57 am
Thank you for all the knowledge and shared information on Lyme. Its amazing how everyone that suffers from Lyme
or knows someone who suffers,takes that extra step to learn any and all information to benefit there lives, to live. Why can’t the Doctors who are edjucated in treating lives can’t or won’t take that extra step,to listen and learn.
I myself have a similar story.
Sick,doctors,tests,years of illness,not knowing what was wrong. Digging for an answer,not giving up. Trying to stay one step ahead of the Bacteria robbing me and many of you,of our lives.
I didn’t want to believe this could be passed on to our children. I wasn’t aware of my Lyme until after I had a miscarriage and had given birth to my beautiful baby girl. My worst nightmare has happened. My daughter starting having mild symptoms and I knew in my heart I’d passed Lyme on to her.
Her red blood cells show the bacteria. She is 5 years old.
Something has to change.
How long is the path we have to walk,holding our childrens hands,as they suffer along with us.
Comment by Tina Pallister — January 5, 2011 @ 10:00 pm
The Tuttle family was featured on New Hampshire Chronicle’s “Living with Lyme” with the program archived on their site in six small segments for viewing on the computer.
Although our story takes place in New Hampshire, faulty Lyme diagnostic tests are missing tens of thousands of cases worldwide every year.
Based on the universal misunderstanding of lab results, I have constructed a website highlighting the plague of ignorance as it relates to the misdiagnosis of Lyme disease. Please feel free to pass this along to others. (A must read)
New Hampshire Lyme Misdiagnosis
Our “perspective” on Lyme disease comes from first hand experience as all family members have been afflicted with this disease. What we find most disturbing is the fact that our family practitioners knew absolutely nothing about Lyme disease, had a universal misunderstanding of lab results and a universal dismissal of Lyme symptoms. None of our family members presented with a bulls-eye rash and only our daughter recalled a tick bite. In the absence of the bulls-eye rash, the likelihood of obtaining a timely diagnosis in a state with the highest reported number of Lyme disease cases is virtually nonexistent.
Every patient attending the monthly Lyme support group meeting has a similar story. The misdiagnosis of Lyme disease is rampant in New Hampshire fueled by faulty diagnostic tests. The first line screening test for Lyme (Elisa) is producing false negatives and everyone is told they do not have Lyme disease. A follow-up Western blot test which is much more sensitive is forbidden when the Elisa is negative. The Western blot is only allowed after a positive Elisa to rule out a false positive. How do we rule out a false negative?? We don’t!! (This is criminal)
Faulty diagnostic tests are creating confusion within the medical community causing the physician to miss the narrow window of opportunity for successful short term treatment which is now creating a backlog of late stage Lyme disease patients. After watching the New Hampshire Chronicle episode, “Living with Lyme” Newport resident Lin Haselton was able to figure out that her husband’s joint pain/swelling and fatigue of a year and a half was a result of undiagnosed Lyme disease.
Case in point: Here is a patient who presented with the most obvious of Lyme symptoms, i.e. joint pain/swelling and fatigue yet the doctor he saw was misguided by faulty laboratory tests and lack of knowledge. The WMUR article titled “NH Couple Grateful for WMUR Lyme Disease Chronicle Special Helped Newport Man Diagnose Fatigue, Swollen Knee” was posted Aug 7th 2010.
We have filled a complaint with the Attorney General regarding faulty Lyme diagnostic tests and the lack of response from the Department of Health but the Attorney General is responsible for providing legal council to the Department of Health so he is basically giving the Department of Health a rubber stamp of approval for their actions which we believe deserves a failing mark concerning Lyme disease. Physician’s are interpreting test results based on unreliable Elisa and misleading Western blot. The medical community and the Department of Health have collectively buried their heads in the sand by practicing industrial medicine by the book but the playbook is drastically flawed.
To be continued……..
Regards,
Carl Tuttle
33 David Dr
Hudson, NH03051
(603) 479-4927
You may also want to view the five minute trailer of the documentary “Under Our Skin”
Comment by Carl Tuttle — March 17, 2011 @ 9:31 am