After reading the post about the IDSA Dr who wrote to Senator Harris of CT urging him to oppose House Bill No 5625...treatment for chronic lyme....I had to email him to.
Even though I don't live in CT, I had to speak up for all of the suffering chronic lyme patients in the country.
Here is the email I sent him:
Dear Senator Harris,
On behalf of thousands of patients suffering with chronic Lyme disease, I urge you to support Connecticut House Bill No. 5625.
It is directly because of thousands of physicians like those belonging to the IDSA, that patients suffering from Lyme disease are not diagnosed and properly treated.
Undertreatment of acute lyme disease and misdiagnosis of acute Lyme disease result in patients who continue to have a myriad of life altering symptoms which can result in disability or death.
I am a Registered Nurse who was misdiagnosed for 21 years. I was given a fibromyalgia diagnosis in 1987. You may even know people who have "fibromyalgia" or "chronic fatigue syndrome".
I found out recently through my own research and persistence that I have had Lyme disease for all those years.
Now I have also learned through my own research that my daughter's chronic fatigue, migraines and trigeminal neuralgia has been caused by Lyme disease and probably other tick-borne coinfections also.
Lyme disease is really a bacterial infection called Borrelia burgdorferi. It is a spirochete that can bore deep into any organ or tissue in the body. It can also morph into cyst forms which are even harder to eradicate.
Chronic lyme really does exist, and we are only 2 of many thousands who are suffering.
Many others who were only treated with a few weeks of a single antibiotic are now suffering with chronic symptoms.
We are then so sick that we must seek out the real experts in the field of tick-borne diseases...physicians who are members of ILADS.
We must then pay many of our expenses out of pocket because the IDSA has convinced insurance companies that chronic lyme does not exist.
I hope that none of your family members are ever affected by this epidemic of tick-borne disease. You would see the absolute travesty that is occuring in our country.
As I am sure you know, Connecticut is highly infested with ticks. Please do the right thing for all the citizens of CT and support CT House Bill 5625.
Think of it like this...if one of your children had cancer, would you want him/her to be treated by the physician who treats some cancer patients and alot of other diseases who tells you that your son or daughter does not need very aggressive treatment?? Or would you want him/her to be treated by the best of the best...physicians who have literally treated thousands and thousands of cancer patients who know from experience that you need to treat aggressively if you want to eradicate the cancer and have a long and normal life???
You are a smart man, Senator Harris. Please support House Bill 5625. Thousands of suffering chronic Lyme disease patients are counting on you.
If you want to see a very good sampling of chronic Lyme disease patients, go to lymenet.org and read the "medical questions" board. Also, I suggest you log onto the Lyme disease blog on the Oprah.com site. You can read for yourself, hundreds of horror stories from chronic Lyme disease patients.
We need your help, Senator Harris.
Thank you for your consideration,
Posted by Tincup (Member # 5829) on :
You are beautiful... and so is that heartfelt, well thought out letter!
By writing that, you are helping me.
You are also helping millions, whose lives are or will be negatively affected by Lyme and coinfections.
Thank you D.
I really needed your help today.
Three thumbs up to you!
Posted by Dekrator48 (Member # 18239) on :
Tincup,
You are very welcome!!! We are all in this together! :0)
Posted by bettyg (Member # 6147) on :
dek, beautifully done as usual; your RN status also helps the cause!!
when i read at end about oprah thread, i thought you might put the direct link in to find it.
tincup, are more letters needed for this sen? i'd do one since there were a couple of things i picked up on there making me furious inside?
just let me know here or a regular email at home ok! thanks!
dek, thanks for being proactive and just doing it!
Posted by Robin123 (Member # 9197) on :
Beautiful letter, Dek. Thanks for writing on behalf of everyone.
Posted by Dekrator48 (Member # 18239) on :
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