The Knowledge Board:
Lyme Disease
Hi I'm Belinda I'm your community manager at The Patients Voice.
If you would like to leave a comment please click on link at the bottom of the page.
You can reach me at belinda.shale@healthcarelandscape.com.
If you have not done so why not join The Patients Voice by clicked on the Join TPV tab on the navigation bar above.
Since 2001, the number of people being diagnosed with Lyme disease has doubled! Caused by ticks the condition has created a controversy over diagnosis. According to the July 2007 Wikipedia the current controversy is based on two separate views of the diagnostic process:-
While there is no doubt that Lyme disease exists, and most clinicians agree on the treatment of early Lyme disease, there is considerable controversy as to the prevalence and historical emergence of the disease, the proper procedure for diagnosis and treatment of later stages, and the likelihood of a chronic, antibiotic-resistant Lyme infection.
On one side there are those who believe that Lyme disease is relatively rare, easily diagnosed with available blood tests, and easily treated with two to four weeks of antibiotics. On the other side are those who believe that Lyme disease is under-diagnosed, that available blood tests are unreliable, and that extended antibiotic treatment is often necessary.
The majority of public health agencies such as the U.S. Centres for Disease Control maintain the former position. Whilst, this narrower position is sometimes described as the "mainstream" view of Lyme disease, published studies involving non-randomized surveys of physicians in endemic areas found physicians evenly split in their views, with the majority recognizing seronegative Lyme disease, and roughly half prescribing extended courses of antibiotics for chronic Lyme disease.
Both groups making up the dichotomy of the Lyme disease controversy have compelling empirical evidence to support their points of view and logical arguments. More research into Lyme and its infecting agent, Borrelia burgdorferi, is needed to elucidate the true nature of Lyme disease before definitive treatment guidelines are to be written.
The last sentence really sums up the purpose of this blog. If these guidelines are going to be written what would you, as a patient or carer, like to have included.
Feel very free to tell us your story. In particular we are interested in the following questions:-
• How long from your first symptoms showing did it take you to get properly diagnosed?
• What were those symptoms? How satisfied were you with the healthcare professionals who dealt with your case?
• Do you believe that Lyme disease is relatively rare or more common that many healthcare professionals believe?
• Finally what advice would you like to give to other people with Lyme disease?
Thanks very much in advance for your help. Please feel free to check back on the blog to see what others have said and perhaps contribute further thoughts.
As with all our market research projects, of which this ResBlog is one example, the responses of people who participate are anonymous. This in line with market research codes of conduct. To participate all you need to do is scroll down to the comments area, type a nickname of your choice and then put your comments into the box. To find out more about what we do both in terms of work for our clients and our patient communities and resources please feel free to explore our web site further if you have not already done so?
I look forward to reading your comments and, of course, thank you very much for your input.
Best wishes
Belinda
Contracted Lyme late '70s; progressively, symptoms worsened over the years: prostate infection, gall bladder disease, lower back pain, headaches, GI problems (and I mean PROBLEMS), pleurisy(sp), heart palpitations, fleeting pains, muscle and joint aches, insomnia, and ultimately, loss of memory, cognitive and emotional problems.
Found MD (after 5 mis-fires) who gave me a proper diagnosis 2002. Been on rainbow of antibiotics, both IV and oral, for most of past 5 years, and am rid of worst of symptoms, although lethargy and general malaise continue to plague me. Can now make it through most work days, although must nap upon arrival home.
It is absolutely critical that MD's and caregivers be educated about Lyme, as it appears that WAY to many folks are infected and don't know it. Prompt diagnoses and quick treatment are critical if we are to stop this indidious disease
Joyce Waterhouse | 09/07/2007 21:04:00
I have Lyme Disease and it took 15 years before it was diagnosed. Prior to that I was diagnosed with fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome. I was not helped much until I began the Marshall Protocol. For articles on it, you can find out by searching online or see: http://members.aol.com/SynergyHN/transcript
Queen A'mina | 13/07/2007 17:28:00
I experienced Lyme disease in 2003 when I was 28 years old. I went to a party in a park that I had never visited before and was bitten by a deer tick. A few weeks after the party, I started stuttering whenever I talked on the telephone for 30 min. or more or when I engaged in conversations with people 30 min or more. Then it began to effect the nerves in my left arm and I would twitch whenever I braided hair. It came to a head when I suffered from daily massive headaches and eventually passed out falling down a flight of steps. I woke up in a hospital bed only to find that Icould not speak. I stayed for 5 days and was discharge without a diagnosis. They thought it was menigitis and did all kinds of test. I recieved a call on the 3rd day out of the hospital to hear that I have Lymes disease. I had to go back and get a pick line put in my arm and fed antibiotics for 30 days. A nurse came to the house once a week to clean and flush the pick line. It was a traumatic experience. Yes, I think it is under diagnosed and the team of professionals were slow to get a diagnosis but once they did it was good treatment. My advise to anyone with Lymes disease is to get treatment in the early stages. Time is of the essence!
C | 16/07/2007 14:40:00
I had worked in the medical field when Lyme first came more into the public eye. As employees we had been educated on what to watch for for the first symptoms. I lived and worked in CT.
Years later in June 2001, my son was 3.5 years old. We were very busy preparing to move. One May day day we spent playing outdoors in the gardens which I had not cut down from last year (prime tick territory). My son became sick with a fever of 102-103.5, very lethargic, not eating, staying in bed.
I phoned the Pediatrician and was told "he must be fighting a virus, let him rest and don't give fever reducers so the fever can fight the virus". My son was basically useless in bed.
I phoned the Pedi again two days later, I was told not to bring him in, to let the fever run its course. Note my son had no other symptoms, like no runny nose, no ear pain, no cough, no sore throat, etc which are common symptoms to see with 3 year old's who "have a virus'. This went on for six days, then my son got better, felt fine.
Then on the day of the closing on the house, a perfect bulls-eye rash appeared on his forearm, over an inch in size. I immediately phoned the Pediatician. I wanted this treated immediately. I was also very busy with the closing that day and the moving of the stuff that day, and the unpacking, and was not "looking for a project".
The Pedi said, "Let's wait a month and do a blood test and see if it comes back positive then treat it with antibiotics if it comes back positive". I said, "My understanding is that the bulls-eye rash is a sign of definate infection, plus he had that horrible fever for six days, another sign". The doctor said, "The rash does not mean there is an infection. Well doesn't it bother you to think that your son would be on antibiotics for 21 days?" and I said, "Well that is the recommended treatment for Lyme" and she said, "Well we as a nation are giving too many antibiotics and risking forming antibiotic resistant viruses".
I said, "I don't care, I want the medicine, he has the Lyme symptoms!" and she made me have an appointment that day, before the closing! She looked at the rash then gave the medication. And he got the medications and was better.
I am frustrated because even when the very solid first symptoms appear the doctors still want to see a positive blood test. This is very frustating to not have a blood test that can prove a Lyme infection is present ONLY because the doctors seem so obsessed with having a blood test result to prove it (as they do with a strep throat infection). Yet why don't doctors get upset over treating a sinus infection based on symptoms alone, as there is no test to prove a person has a sinus infection? I do not understand why doctors don't want to believe the real symptoms of Lyme but they would never question the symptoms of a sinus infection, arthritis or other symptom-based complaints.
Katalin Miklos | 16/07/2007 22:14:00
I presented to a Clarkston, MI area ER two nights in a row in May 2004, with an enlarging red bulls-eye rash. I went undiagnosed for lyme disease until March 2007, after seeing 10 different doctors. I found an infectious disease doctor via an internet search, and was finally properly diagnosed with lyme disease. I began aggressive treatment, spending thousands of dollars of my own money. Insurance is only covering about 60% of my expenses for medications and office visits. I consider myself lucky that I found a doctor who was willing to test me for this illness, even when other doctors refused to believe it existed here in MI. Lyme disease is prevalent in MI, and I have met many people in my doctor's waiting room who have also tested positive for at least 5 bands on the Western Blot test. The emotional and financial struggles are equally as challenging as the insidious illness itself. Going from doctor to doctor for over two years was frustrating, expensive, and ultimately caused me to have heart damage from undiagnosed lyme disease. Had I been properly diagnosed in early 2004, I would not have spent thousands of dollars, or missed months of work, or suffered with my health like this. It is heartbreaking to live through something like this, and I hope and pray that MI representatives and legislators work hard to provide support for patients suffering from lyme disease - I also hope they increase education and awareness for physicians and people living in MI.
Joe the Tick | 19/07/2007 15:03:00
36 years for being sick. Still searching for a doctor, fighting insurance companies and I just want the pain to stop.
I've been diagnosed with Austim, Dyslexia, Laziness, Irritable Bowl Syndrome, Sinus Infections, Mono, Scarlet Fever, Allergies, Acne, Stress, and on and on.
Enough is enough. When are doctors going to be educated on how to diagnose and treat Lyme and other tick-borne illnesses?
Scott in NJ | 26/07/2007 04:23:00
As of may 2007 this is my 8th year on antibiodic therapy for Lyme Disease. I have never had a positive test EXCEPT for the LUAT and a positive western blot 16 years ago. I have been on IV, oral, and am currently on penicillin IM shots. I currently suffere from headaches, chest pain, muscle spasm, artritic extremities, low grade fever, memory problems, cognitive difficulties, sweats, chills, fatigue, IBS, nausea, acid reflux, ringing in the ears, and a few other symptoms. My pediatrition could not find trhe diagnosis and I went through over 15 different doctors, including the top rheumatologist in childrens hospital back in the mid to late 90s without a diagnosis. My doctor finally told me it was in my head and to seek psychological therapy. My psychologist recomended we see the doctor that diagnosed me with lyme. I was with her for about 5-6 years before switching doctors again.
Keli in NE | 05/08/2007 05:45:00
I was diagnosed with Lyme Disease 4 months ago after having symptoms for about 6 months. My symptoms are mostly Neurologic, anyone interested in reading my story can click here: http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=82793814&blogID=295794530
mommy | 10/08/2007 14:39:00
I started experiencing strange symptoms (totally unrelated according to my doc) when I was in elementary school and new ones in High school... from migraines and knee pain to insomnia and depression. I had years when my immune system seemed shut down and I caught every little bug that was going around. My asthma got worse, I started losing muscle mass, my joints started hurting more... I was diagnosed with allergies, asthma, insomnia, "bad knees" with no known cause, vertigo, endometriosis, fibromyalgia, depression and anxiety (which mainly showed up as twitching muscles and complete emotional collapse). It wasn't until I was 28 years old and completely bed ridden that I was finally diagnosed with late stage, chronic Lyme disease.
My parents have also both been diagnosed. My husband shows some symptoms but doesn't want to deal with the politics and doctors, so he is using some homeopathic treatment on his own.
Then there's my son (who got it from me in-utero) - with him I noticed symptoms starting to show up around age 4 (lots of knee pain, mood swings, toileting issues, not growing) but he was not diagnosed until recently (he turns 6 next week).
Finding a doctor to take my concerns seriously was a big challenge - many of them told me I was just depressed and that was the root of all my other problems (instead of just one more symptom caused by the Bb).
I'm entering my third year of antibiotic therapy and doing much better. However - I am still disabled (and can't work). I still have days full of pain, brain fog, or dizzy spells. My son is in his second month of treatment and already seems to be getting a bit better. My parents still have a long way to go - though it never hit them quite as hard as it did me.
Is Lyme disease rare? NO WAY! It's just WAAAAY underdiagnosed by ignorant doctors... especially those who only understand the ISDA position and are unaware of the evidence to support the ILADS guidelines.
Advice for others with Lyme disease: Don't give up! Get multiple tests and remember - Lyme is a clinical diagnosis. Once you are diagnosed, find a ILADS doctor to treat you. Make sure they are compassionate enough to realize how much your body/emotions can take at one time. Although agressive treatment is necessary, remember to pace yourself so you don't end up dead from complications or bad reactions to the meds. Pray often and find others to talk to about the suffering you are undergoing.
The Patients Voice The Patients Voice is one of the many patient-focused services from Healthcare Landscape. Healthcare Landscape is a medical and healthcare research company, which conducts interviews with all the different kinds of people involved in the healthcare process. They range from patients and their carers, to medical professionals like nurses, pharmacists, physicians and academics. Our mission is to find out what they think and what their experiences have been.
We can interview over the web, at home or at a special research facility; depending on what type of study it is, the choice is often yours. We also run patient diaries and blogs, so you can air your views as honestly and informally as you like. We want to ensure that you have access to the best research experience, and in turn, our clients will learn from your story. Our clients are quite diverse. They range from pharmaceutical or medical device companies, to charities and government bodies. The Patients Voice is open to anyone in the world who wants to give an opinion and would like to try to make a difference. This forum gives you power by allowing you to get YOUR VOICE HEARD.
You should always consult your physician regarding any medical issues. While we attempt to make sure the information on this site is as accurate as possible consulting a medical professional is always to be advised.
Membership of the Patients Voice is Free and open to anyone.
To become a member of the Patients Voice please enter your email below and click Submit.
