Coming to you from a tiny little desktop in the middle of Wisconsin....

PJ Langhoff, writer, designer, mom, computer geek, 15-year Lyme patient and problem-solver got fed up with being ignored.

Her doctors ignored her.
Renowned medical clinics ignored her.
Her insurance company ignored her.
Her bosses ignored her. (when she could still work)
Family court officers ignored her.
Her ex-husband ignored her. (no surprise)
The Disability rep ignored her.
Her State Representatives ignored her.
Her children ignored her.
School officials ignored that her children were ill.
Physicians in the medical sciences even published articles meant to minimize her illness.

Nobody seemed to be listening to the fact that she was living with Lyme disease for so many years. Even with test results in hand and a lengthy medical history rivaling the stack of encyclopedias in her library; nobody wanted to deal with her disease. Even a family court system told her she "didn't look sick". Her ex-hubby accused her of being "mentally ill" and "fabricating a disease" for herself and their 2 children, also Lyme sufferers. People in family court claimed she had a "full plate" because she was always sick and having to reschedule hearings due to her illness--treatments--medication problems (insert reason here). Family and friends labeled her "unreliable" when she couldn't attend their functions due to a last minute unpredictable health crisis.

Doctors told her "neurologic Lyme doesn't exist", or "you can't possibly have Lyme, its not in our area." Her personal favorite was a doctor who screened her with a negative Lyme titer who then said, "you don't have Lyme. I'm not going to hold your hand every time you think you have something wrong with you." This same doctor missed the Lyme, an 8cm tumor, a bum gallbladder that had to come out and the boat completely.

She was diagnosed with everything from MCS/Fibromyalgia, to pinched nerves, shingles, insomnia, summer flus, skin "rashes", bronchitis, hypochondria, stress, sinus infections, tinnitis, migraines, peri-menopause, and even agoraphobia (her personal favorite). Her lengthy medical history allows her to walk into an ER or doctor's office and speak intelligently with them, often eliciting this response from the attending physician. "Are you a nurse?" Nope. Just a very well-educated Lyme patient. And this education did not originate from the internet either.

After a dozen years of Lyme "hell", she finally got a diagnosis for herself and the kids, and began her odyssey of Lyme treatment, which in her state, was nearly impossible. The more she researched Lyme disease, the more dismayed she became. As she networked with support groups, the more people she met who were struggling with the same issues as her family, and who were not getting the support or medical treatment they needed, in part due to the politics surrounding an illness where for-profit interests supercede patient needs.

The lack of a cohesive experience in the Lyme community was something that compelled her to launch www.Sewill.org, a web site and informational support group for Lyme patients and their families in the WI, IL and MN regional areas. This group quickly grew, so she began a yahoo group as well.

Finally, after hearing from many support groups that there did not seem to be a good way to link all the Lyme patients together, the Lyme League of America site was launched www.lymeleague.com where patients could at least in one area, receive the credibility they deserved, for illness which is very real.

Upon this site, we hope everyone will join together and sign up their names and tell their story so those who deny Lyme exists can easily see refuting evidence or anecdotes as they call us, that our illness is real.  

ANYONE VISITING the site will see at a glance (or a click), the many faces of Lyme disease from all over the world.

Doctors, educators, insurance companies, government bodies, legislators,
we are real people fighting a real disease with real consequences, costing billions of dollars!

HELP US PLEASE!

No longer will we allow ourselves to be discounted or even ignored.

-PJ

SIGN ME UP TOO! I WANT MY VOICE TO COUNT!