It was a rainy day making for a soggy Lyme Rally in New Hampshire’s state capital but there were a couple dozen of us out there anyway standing with our signs and umbrella’s. We couldn’t miss the opportunity to stand in solidarity with other Lyme victims and advocates around the country and around the world.

So why a protest? The short answer is people are suffering needlessly because of how this illness is being handled (or mishandled) by the mainstream medical community. The even shorter answer is POLITICS which has turned Lyme into an unnecessary battlefield which leaves unsuspecting patients as its victims. Many are comparing this scourge to AIDS which was largely ignored until people banded together.

This protest is about looking at all evidence, the need to develop better testing (current tests have up to a 50% FALSE NEGATIVE), better training for doctors, and giving people the information they need to get quicker and better treatment. I will know that we have been successful when the medical community joins us in helping all patients to get early and appropriate treatment to prevent people from dealing with persistent and even life-long infections.

There are two standards of care in Lyme. The IDSA (Infectious Disease Association of America version says Lyme is hard to catch and easy to treat. The ILADS (International Lyme & Associated Diseases Society) says Lyme is relatively easy to catch and hard to treat. Most doctors follow IDSA’s guidelines since this is what is promoted by the CDC. These are the guidelines that my primary care physician followed that DID NOT CURE my Lyme!

Some doctors who have experienced enough patient suffering and begin asking more questions about how to help their patients who remain ill learn that there are still a lot of open questions about Lyme and it’s co-infections. Others blindly follow the IDSA guidelines and end up sending patients down rabbit holes looking at MS, ALS, rheumatoid arthritis, fibromyalgia and other diseases instead.

The best way to understand this is to think of a court case. Part of a lawyer’s job is to control what evidence is presented to best represent their client. We all know that a clear picture of the whole truth is often sacrificed in the process. Lyme patients are caught in the middle of a similar battle with interests such as insurance companies, vaccine companies and others looking to make money or save money invested in controlling what research and evidence is allowed to be considered. I look forward to the day when patient interests are put first and hope that someday we will find a cure for the thousands of us around the world who are dealing with this.

and the rain stopped long enough for the flash mob dancers!

See photos from around the world in Norway, Melbourne, Sydney, Sweden, UK, etc. on Worldwide Protest Facebook Page.

And if you haven’t yet read it, here is my Prevent Lyme and Chronic Lyme post.  Be informed and stay well!