I wrote a letter to the editor of our local newspaper (see my post in Activism) which was published a few days ago. Got two calls so far, the second one I just got from a young woman getting the usual run-around. Her symptoms are very MS-like and she and her husband are very scared. Also has palpitations, brain fog, anxiety.
She went to UCONN Health Center (a.k.a. The Killing Fields) and another hospital. Long story short, she was told emphatically by doc at UCONN she COULD NOT HAVE Lyme. Somehow she did get a doc to rx some antibiotics, and now she has a stiff neck, muscle cramping, tremors, and body twitches. She knew nothing about herx reaction, I filled her in. I referred her to my Lyme doc, told her DO NOT go back to UCONN and DO NOT go to Yale.
I urge everyone on this board to write a letter to the editor of their local newspaper. You WILL start getting calls from people (assuming you are listed in the phonebook). Mention ILADS and Under Our Skin in the letter so people can easily get more info online. Also list the various conditions that Lyme can mimic.
This woman told me her uncle just started treating for Lyme but went misdiagnosed for a year. By that time he could not walk. He is in another state and is being treated by a non-LL doc. I urged her to get him to a Lyme doc.
What typically happens when a letter like mine is published is people read it who know someone with these issues and they show them the letter telling them, "You've got to read this!!!" So even if the Lyme-sufferer doesn't read the newspaper, chances are a friend or family member will read it and show it to them.
Yes, we're helping only the tip of the iceberg, but at least we're helping someone.
Bottom line: Once you have a Lyme diagnosis there is often a huge relief that you don't have MS, ALS, or some other hopeless disease.
Everybody PLEASE start writing letters. Best to actually send it to the newspaper by US mail, make sure you include your address and phone no., cuz they will call you for verification before they publish. Do not specifically name hospitals or doctors to avoid, as that could be considered libelous and they won't print it. I referred to Charlotte Hungerford Hosp. as "our local hospital" and they printed it.