Washington Post writer's question about Lyme disease
The mother of a daughter with Lyme disease wonders what do about lingering symptoms. In my opinion, she’s turning to the wrong voices for answers.
It was an impressive headline in the Washington Post: “A big dispute behind a tiny tick bite: What to call the lingering effects of Lyme disease?”
In the article, freelance writer Janice Lynch Schuster recounts how her daughter exhibited serious health problems while growing up, and then eventually was diagnosed and treated for Lyme disease. However, well after finishing treatment, additional symptoms have now reared their ugly head. In trying to figure out what to do next, the mother’s research seems to have led her right into the arms of the IDSA Lyme guidelines cabal, and from the sounds of the article, she doesn’t seem willing to venture further. Here’s the reply I left in the comments section of the Post:
Janice Lynch Schuster: You and I have daughters who are about the same age. My girl got sick with a “mysterious condition” when she was 13. None of the top doctors we consulted could figure it out. Once we took a leap of faith and stepped outside of the medical straitjacket imposed by the IDSA Lyme treatment guidelines (the ones Gary Wormser wrote, the ones that prevent untold thousands of Lyme patients from getting appropriately diagnosed and treated, the ones that condemn many people to a life of pain and misery)–only then did we find treatment that got her out of the wheelchair, gave her back her brain, and allowed her to graduate from high school and college and move on with her life.
I find it puzzling that your article only quotes experts from one side of the chronic Lyme divide. Wormser, Auwaerter, and the American Lyme Disease Foundation are staunchly on the record as disbelievers of the ability of Lyme spirochetes to persist in the body beyond a short course of antibiotics. You’ve ignored a vast number of equally impressive clinicians and researchers who have come to believe otherwise. You state AS FACT that no studies have ever shown effectiveness of such treatment. That’s simply untrue.
You don’t mention in your article whether your daughter is currently being treated. I hope for her sake that she is. Not only in my family, but in my support group and through my Lyme advocacy activities, I have met hundreds of people who have benefited from such treatment, and via online groups, I have heard from thousands more.
My advice to your daughter would be to find an ILADS-affiliated doctor to help her sort out everything that’s going on in her body (indeed, it may well be more than Lyme. See Dr. Horowitz’s excellent book “Why Can’t I Get Better? Unraveling the mysteries of Lyme and chronic illness” for more information about the wide range of other factors that can keep people from getting well.)
Click here to read Schuster’s Washington Post article.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org. On Twitter, she’s @dorothyleland.
I hope you’ll consider sending this, or another response, to The Post Letters to the Editor.
I agree with Beth. You must send this to the editor.
Thanks tons for our reply!
Sara
I also agree with Beth and Sara. The author has obviously not been connected with the Lyme Community of Warriors and really did not absorb the documentary of Under Our Skin. The only words beneficial to everyone were the words of the MD researcher who was diagnosed too late and thus prevent him from now living with a heart transplant.
As a 3 decade lymes person, well, let me say this: few doctors, except Naturapatothics get it. We have big drug companies, -‘wana be’ big M.D.s and purely feckless other
faulted caregivers. When one is affected with this horrific disease you WILL, begin to see a glimpse of the disaster at large. Denial continues to make advances slow leaving a moot feeling of the possibility victory. To the affected, stand. Fight hard, teach, inform and let people know lymes is hell. P.T. Fitzwater
so true… 1 year of hell symptoms and 4 doctors…only to finally get 2 weeks of Doxi which didnt completely heal. Does anyone know of a better more effective treatment to fully get rid of Lymes… please email me mattt187 at ya hoo dot com.
Matt, ILADS has a referral section on its website: http://ilads.org/ilads_media/physician-referral/
Is it possible for a person to have had the lymes rash that followed typical pattern of the lymes rash yet ,after five months, only symptoms are periodic facial twitch
and abdominal burning and distention? I have no swollen joints or fever.
Monique, every case is different. Many people with Lyme do not have swollen joints or fever. Symptoms are diverse, and can wax and wane.
I would give anything if someone or something would help me. Ive had Lyme and Bartonella for two and a half years. Ive seen a lyme dr for the past four months and have been through 9 combinations of antibiotics. I can hardly move, I have constant pain and am taking vicoden for it. I cant keep a thought in my head and all I want to do is sleep. I am on zoloft for the depression, but as the days tick by, all I can think about is eternal sleep. I just want it to stop. Why cant someone do something to help people before its too late. I feel as though lyme and co infections may not be lethal, but eventually more and more people like myself will make it lethal by their own hands. Its just so sad. I am just so sad. I had a happy life once. I dont see if ever returning.