Healkick

Healkick is a new forum for patients in their 20s and 30s with neuroimmune diseases, including ME/CFS, chronic Lyme, multiple chemical sensitivity, fibromyalgia, mold illness and atypical multiple sclerosis. The group’s founder, a 27-year-old chronic Lyme and ME/CFS patient named Joey, has been sick for five years. Joey identified the need for a virtual place for patients under the age of 40 to come.

“I've always been trying to find other people my age that I can socialize with in my area or even talk to just to know I'm not alone,” he explains.  “I was really outgoing back in college and made a lot of good friends, and once I got sick with this I just fell off their radar.  I became stuck in no-man's land, talking to what tended to be older patients on ME/CFS and Lyme forums, striking up good relations but just never finding patients that became ‘friends’ in the old sense.”

Play on heelkick

The name Healkick is a play on heelkick. “The kick,” Joey says, “is meant to imply liveliness and socializing.  Healing from a disease doesn’t have to be a bore and isolating, but instead can be fun and social with the right format to make this possible.”

Joey's looking to enrich his life beyond his present routine—which he hasn’t lost his sense of humor about.  “Basically, I go to Whole Foods [supermarket] for coffee and green juice at the bar in the morning, do computer work at Whole Foods (they have free WiFi!) on my computer at the bar, grab a bowl of noodles at Whole Foods, do [more] computer work at Whole Foods, [and] grab a whole chicken to take home for dinner,” he says.  “And that's all.  It's a very constrained routine, and I'm basically in a seriously committed relationship with the Whole Foods bar right near the exit door of Whole Foods (so I don't need to do much walking) to [meet] basic survival needs and work on this project simultaneously."

Mono, ME/CFS and Lyme

Joey became ill with mononucleosis five months into his first job, at PricewaterhouseCoopers in San Francisco doing corporate fraud investigation, after graduating from University of California at Berkeley.  After a “14-day fever from hell,” he became bedridden. When he didn’t improve, he moved back home to Los Angeles.  At the airport, his mother didn’t recognize him.

A year later, Joey was diagnosed with ME/CFS and eventually with chronic Lyme as well.  He’s tried a variety of treatments—from the antiviral Valtrex to immune transfer factor to Armour thyroid, plus sleep medications, steroids and antibiotics.

Remission and a crash

In 2007, he felt well enough to take an advanced physics course and join a jazz a cappella group.  Unfortunately, as happens with many patients, Joey eventually crashed. Undeterred, and frustrated with the painfully slow progress in neuroimmune research, he applied for a master's degree in health policy and management at Berkeley but couldn't make it through the rigorous one-week math camp without relapsing.  “Luckily,” Joey says, “I reconciled with the idea that I could make a deep impression on neuroimmune research and the community at large without this degree.”  

Now, Joey’s living in Las Vegas, Nevada, and looking into the experimental drugs GcMAF and Ampligen as well as targeted chemotherapies to eliminate viral reservoirs.

Joey encourages patients with any kind of neuroimmune diseases to check out Healkick. "The creation of this group was founded not based on separation of what I do consider distinct illnesses, but rather what we all have in common: isolation and need for peer support," he says.  "It really would be something if patients with all these different types of neuroimmune disease could engage each other in meaningful connection and discussion.  We can always hope, right?”