NEWS: Major series on chronic Lyme from Maine TV station
Anchor/reporter Sharon Rose, of WCSH TV station in Portland, Maine, has produced a four-part series on chronic Lyme disease. In addition to her televised reports, the TV station's website has a lot of information about Lyme disease, as well as an invitation for Lyme patients to tell their own stories in the comments section.
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On the morning of July 6, reporter Sharon Rose blogged about her upcoming series on chronic Lyme, calling it the most challenging assignment in her 20-year career. Read those remarks here.
This link takes you to the main page for the story on the TV station’s website. There is text on the left, and video links on the right. Start clicking from the bottom. Or get to each video segment directly by clicking here: Parts 1 & 2 (Bridget and Rhonda), part three is Terry, and part 4 is Angela.
There is an additional webpage that gives advice from the patients interviewed in this series. Here’s the summary of what they suggest:
—Document your symptoms. As stated, many Lyme symptoms can be mistaken for other illnesses and often seem unrelated to one another. Many Lyme patients also suffer from what is referred to as “brain fog” making it difficult to communicate their symptoms to clinicians. Keeping a record of each symptom, each day may help you and your doctor see patterns that will lead to a diagnosis. Also, if you do get a rash from a tick bite, be sure to take a photograph of it.
—Be your own advocate. If you don’t feel your doctor is listening to you or taking you seriously, move on to the next doctor. Keep talking and moving until you find someone who can help you.
—Get your medical records. Two of the patients I interviewed for this special report told me that while their primary care physicians sent them from one specialist to another, ostensibly seeking a positive diagnoses, the PCP’s had placed a note in the patients’ files suggesting that they were exaggerating or making up symptoms. It is your right to know what has been written about you in your own medical records.
–Do not doubt yourself. And don’t let anyone belittle you. Enlist the support of those who know what you’re going through.
As much as we love getting your comments here on the CALDA news blogs, we encourage you to leave comments on the TV station’s website. Let them know how much the Lyme community appreciates the attention they’ve paid to this important issue. Click here WCSH’s comments page.
I just want to say how great it is that this story is being done to highlite Chronic Lyme. Lyme is a world wide problem, and other countries need to focus more on this issue. There is little help for Chronic Lyme patients in Europe.
Wow, Terry and his wife's story are so sadly familiar to me. It is my kids who have given me the motivation and hope to get better after getting a tick bite and bull's eye rash 18 years ago – and then going undiagnosed. I was finally diagnosed last year and am doing great on a strong regimen of Chinese herbal antibiotics and lots of infrared sauna time, among many other wallet-emptying strategies. My story and others' stories can be found on the Lyme lifestyle blog: http://www.spirochicks.com
THANK YOU for making and airing this fantastic video series. It brought tears to my eyes as I heard the stories.
I wanted to thank you for doing a piece on lyme.
Excellent!! Thanks for all of your time and energy to try to really understand this-And for publicizing it!
Thank you, CALDA, for posting these links to my stories. The response I have received to my series has been truly overwhelming.
One quick clarification — parts 1 and 2 of the series are actually in the "Lyme: The Great Debate" section of the web site here: http://www.wcsh6.com/news/health/lyme_disease/story.aspx?storyid=119869&catid=273
In parts 1 & 2, we told Bridget's & Rhonda's stories over the course of two nights. But we also went a little more in depth into the medical debate over chronic Lyme with a doctor on each side of the debate.
In the section of our web page entitled "Lyme: The People Caught in The Middle" we broke out Bridget's and Rhonda's stories for web exclusives. And we also posted "Terry's Story", which was part 3 of the series, and "Angela's Story" which was part 4.
While Bridget's & Rhonda's stories are compelling in their own right (which is why I wanted to feature them seperately on our web site), I didn't want you to miss the real first two parts of the series as I think they are a better representation of the issues at hand.
Thank you again for posting this. My heart goes out to you all.
Sincerely,
Sharon Rose
WCSH6, Portland, ME
Thank you Sharon for your work. Hopefully making chronic Lyne disease more public will convince the IDSA and insurance companies that this is not an imagined diesease but a very debilitating disease that requires long and often expensive treatments.
Thank you all for your stories and concerns for others. We, too, have lyme disese in our family..After battling with an unknown virus,for a few years, my son Paul was diagnosed with Lyme symtons. Also, his son, in early stages.They have since moved on to other doctors and are slowly improving. there is help out there..Thanks to dedicated doctors who will take the time to follow through and help them…
Thank you for your good work and help in educating people to understand this awful disease, so that they can learn how to get a diagnoses and treatment early on. Our 17 year old daughter has suffered terribly. It took 4 years to get a diagnoses. All her tests were false negative. We had the run- around with specialists but no one got it until she was diagnosed clinically by a LLMD. Her primary said to take her to a psychiatrist because she could not figure out what was wrong with her5 In addition to Lyme she has four co-infections including two kinds of Malaria. (Babesia). She is doing much better now but still has a long way to go. Too ill to attend school, we have teachers come to our home. The cost is a burden, but at least health insurance pays for treatment. The M.D. who removed the tick never said anything about the possibility of getting this disease and offered no antibiotics. She's on about 5 different medications. Her LLMD says that she will get well. But it worries me when I see books on Lyme called, Cure Unknown.
Thank you again for your good work.
Karen
Thank you Sharon Rose for doing an excellent job on the struggles with lyme disease. It means more than you can imagine to those of us suffering with it. I was bitten in my back yard in summer 2003 and was told by my doctors office not to worry that lyme disease was not in the state of Maine. So i went on with my life only to have more and more debilitating symptoms one after the other. I never had a bullseye rash or flu like symptoms ( i wish i had ) and i tested negative on Elisa and western blot. I could no longer work as a nurse, i could not drive, i was in pain 24/7, i couldn't sleep. i was losing weight,i was mostly bedridden, the list goes on. I seen a rheumatologist, neurologist, infectious disease specialist, all who could not figure out what was wrong with me, and because of that they believed i was making it up and depressed. I eventually through the help of my determined fiance' found a local support group and found a physician in Conneticuit who treated me with long term antibiotics and i got about 75% better. I still have ongoing problems because i was not diagnosed early and that is the important part, if diagnosed early people can recover fully and get their lives back > the problem is lyme is so often missed because so many people don't realize they've been bitten, no bullseye rash and the testing currently is not accurate , which is what happened to me. So people are sick and they don't know why and they spend thousands and thousands of dollars to find out why, and they are told by doctors that we can't find anything wrong so they are told it's all in their heads, or they are misdiagnosed with MS, fibromyalgia, chronic fatigue syndrome, arthritis, ALS, depression etc etc. This same story story is so often from anyone with lyme. So i wish to thank you again, it is crutial that the info is out there, there has to be a change in the medical community if we want the cases of lyme disease to go down not up every year. I do not want to see anyone else suffer with this wretched illness.
THANK YOU for your good work and help in educating people to understand this awful disease. As a Lyme disease sufferer, what you have done is FANTASTIC, so that others can learn how to get a diagnoses and treatment early on.
Need a lymes doctor asap can u help
Rebecca, go the the LDA's doctor referral site, at lymediseaseassociation.org.
After a year and half of battling symptoms and pain and countless drug therapies, my PCP humored me with a Lyme Test that surprisingly tested negative. My PCP spent more time ruling out what I didnt have as my symptoms became more chronic….finally in tears I went to a Homeopathic Dr who in that first visits, disputed my depression and fibromyalgia diagnosis and after collecting more blood samples told me I had chronic Lyme and a co-infection. I am now in a homeopathic drug therapy and hopeful for the first time. I am not crazy, this pain in real, these symptoms are real….I had to advocate for myself….my PCP refused to acknowledge the Lyme but acknowledged my symptoms and was trying to treat my symptoms….unsuccessfully and painstakingly at my cost. Who knows what damage has been done to my body by these other "guinea pig" remedies as my doctors "guessed" at what I had. They even went so far as to ask me "what do you think is wrong?" and when my answer was Lyme, they laughed it off as impossible because the early tests were negative.
I am fast learning that all PCPs do not know everything and we should not put all our eggs in one basket when we strongly feel opposition from our doctors. Keeping searching….only we know our bodies.