August 22nd, 2019

When Life Gives You Lymes

Debra Paul’s recounts of Chronic Lyme as transcribed by Melissa Ruiz

Part III: Controversies

So these past couple of segments we’ve discussed transmission and symptoms of Lyme disease, and touched a little bit on its treatment. Now it’s time to talk about the controversy surrounding Lyme disease.

That’s right, controversy. As if Lyme itself weren’t enough of a problem.

According to the Lyme Disease Association’s website, there has been ongoing debate surrounding the illness that has kept many from being diagnosed and treated for it, the core issue being persistence of the infection versus issue of autoimmunity.

One take on the issue is that Lyme is supposedly hard to catch and easy to cure (certainly not in my experience, but nice for those fortunate few). So, most insurance companies seem to believe that it should only take a few weeks of treatment to cure, so anything longer they won’t cover under Lyme disease.

Just as an example, Aetna will pay for four weeks of antibiotic treatment for Lyme disease, and after those four weeks, if more treatment is required, Aetna considers it “experimental” or “investigational”, and claims that the treatment isn’t proven effective.

For many states, medical boards around the country have suspended many doctors who specialize in Lyme (also known as “Lyme-Literate” doctors), claiming that these doctors were not following standard guidelines for treatment of the disease, and calling them “irresponsible”. Right, doctors who know what their patients are going through and who want them to feel better are “irresponsible”. Sure.

Only four states, Connecticut (the place where Lyme was discovered), Rhode Island, Massachusetts and my good old home state of New Hampshire, have actually passed laws allowing doctors to prescribe long-term antibiotic treatment for patients without having to worry about losing their licenses or being dropped by certain insurance providers. If I wasn’t thankful to be living in New England before…

So it’s great that we live in a state that will provide treatment for the disease, but not so great that insurance really does nothing to cover it. And treatment gets expensive. There are many people who end up losing their jobs due to being so ill, and then become unable to keep up with medical costs, and from there mortgage and all other expenses fall to the wayside…it’s terrible.

And speaking of terrible, the CDC and IDSA both deny that Chronic Lyme (Lyme that won’t go away after treatment) exists at all, and many insurance companies don’t want to have to pay for chronic illnesses, and many more have conflicts in interest.

The corruption and/or ignorance of many insurance companies, and that of the CDC and IDSA, keeps thousands of people from feeling better, or drains them of all their finances in the process.

So how can us regular people fight back? Especially those who don’t have much fight left in them?

Fightlyme.org, a website started by a young man in his twenties who has suffered with Lyme since age 12 (the disease doesn’t care how young you are) links a petition, begun nearly two years ago, for a Congressional investigation of the CDC, IDSA and the ALDF (American Lyme Disease Foundation).

The goals of the petition are to expand the definition of Lyme to cover chronic Lyme and co-infections, to protect doctors who treat Chronic Lyme and co-infections, to increase funding for research, to improve testing, and to re-educate doctors and the public of symptoms and treatment options.

As of writing this article, the petition on change.org needs fewer than 15,000 signatures to reach its goal of 50,000.

Will this be the answer? Who knows? But it could be step in the right direction.

The battle is yet to be won, and the war has no end in sight. But anything worth fighting for is not won easily.

Those who would like to learn more about the Fight for Lyme awareness and sign the petition can visit this link: https://www.fightlyme.org/2015/05/19/lyme-disease-petitions/

As always, thank you for reading! Knowing that we have dedicated readers is what keeps me going day to day. Until next time, be well!

Debra Paul is the publisher of three weekly newspapers in New Hampshire.

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