posted
Here is the letter I sent to my duck PCP who kept telling me I had fibromyalgia and needed to excercise and take an antidepressent. She told me twice "I don't want to go down the lyme road".
Dear Dr. A,
As you know, recently I have been through some of the darkest months in regards to my health. Indeed, there were times when my headaches, neurological pain and other systemic ailments left me feeling hopeless.
In my struggle to find answers, I have learned a great deal about Lyme disease and the many misconceptions regarding diagnosis and treatment. Most tests are less than 30% accurate and therefore treatment is based on a clinical diagnosis of symptoms.
The first set of blood work done by Dr. S was inadvertently not sent to Stonybrook as he had requested--therefore the same lab (Quest) tested my blood twice--both negative.
In early January, Dr. S drew blood again and resent it to Stonybrook in Long Island. After two weeks it came back CDC positive for IgM, which would indicate a current active infection of Borrelia burgdorferi.
Additional tests are currently being done for co-infections that often accompany Lyme disease. Drenching night sweats, which I have been having, are often caused by the co-infection babesia, which requires additional treatment to the Lyme infection.
Needless to say, I am disappointed in the months of suffering I endured but I now realize that misdiagnosis is very common with patients--some suffering for many years without proper diagnosis.
At this point, all I can do is help spread the word of my experience and help the ongoing education of physicians. From what I've read, this is the most prevalent bug-borne illness and a major public health problem and growing crisis.
I have attached a packet of information including a copy of my lab results, articles and studies on Lyme disease, current labs recommended for Lyme disease testing and a copy of my medical claims, which puts the cost of my misdiagnosis over $20,000.
It is my hope that future patients with my history of illness in your practice be given a careful look for Lyme. I hope you understand why my family is currently in the process of finding a new Primary Care Physician. My battle with this illness will take time and careful assessment of antibiotic regimens as it relates to this complex disease.
-------------------- We are spiritual beings on a human journey...
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey humanbeing
God Bless you That was perfect. I wish I had sent one like that to my GP 20 years ago.
You are a great warrior.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
good for you!!!!
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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bettyg
Unregistered
posted
HB, outstanding letter of the facts, your feelings, the $$$ involved, and your finding someone that will work with your lyme and not dismiss it year after year. Kudos dear!
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Much more nicely put than some of the missives I've begun, then not sent.
Hope it doesn't meet a closed door of a mind, though suspect that it will.
Good for you for putting it out there, anyway.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Well I must say, that is a fabulous letter.
If we were still doing ratings, I'd give you five stars.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
We should have a rule that posting the names of doctors to avoid is acceptable. I know I wouldn't want anyone who has Lyme, whether I know them or not, to see this duck. I'm sure many more with Lyme will see her and her ilk before the truth comes out.
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Wow! Can I use this? Copy this for myself? or my husband?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Thanks! I sent this letter in a fit of rage. I really toned it down to not sound like the psycho lyme brain that I had become.
Heather, please use the letter. I am considering sending a letter to all the PCP's in CT and alert them to my misdiagnosis--also sending studies and lyme labs.
I gave my duck Dr. Donta's study on chronic and late stage lyme...I underlined all the symptoms since they matched mine and even the ER visit sentance about lyme looking like a heart attack (I went to ER for this).
I firmly believe that educating our duck PCP's is the most effective thing we can do as their patient- I put my trust in this person for years and she dropped the ball big time.
A financial issue!!! I am considering sending my insurance co a letter too. They could have saved 20K if their duck had known what to do with me in the first place.
I will PM those who need her name...
-------------------- We are spiritual beings on a human journey...
posted
This was really one of the best -- so gracious, really, in light of the way they tend to treat us. I agree there should be a list of docs to avoid, state-by-state. I've thought this all along. Think of the heartache this could avoid. However, my rheum. treats me kindly, has always believed in me, but I've heard different tales from others in my group!! Sometimes I guess it's a clash of personalities -- though it shouldn't be. Anyway, ignorance by the medical profession, esp. here in CT, has really become a zero-tolerance issue of mine seeing as how there are so many lectures, conferences etc. given (which you never seem to see them attend unless maybe some CEU's go along with it).
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
You certainly were very lucid and gracious! I would have been foaming at the mouth the minute she said she didn't want to go down the Lyme road. Such stupidity!
One of my best days was when I fired a doctor. I sent him a postcard so everyone on his staff could read it as well.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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