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Artist Fighting Lyme Disease Chaos


#1

Hello Everyone!

My partner/boyfriend and I are new to the forum, so first off I on behalf of both of us want to thank the mods and everyone on here because finding support through this awful disease is so important. We appreciate all you do for each other and just being an ear and voice for Lyme sufferers. Thank you!

As I’m sure is the same with everyone here, we have both felt all the effects of this illness, ranging from the physical pain to the emotional and psychological stress caused by isolation and the indifference or unwillingness to listen of people in our inner and outer circles.
My partner, Chris Merritt – is a singer/songwriter, pianist, and producer. He’s toured the US and Japan, shared the stage with the likes of Ben Folds, Marcus Roberts, Fountains of Wayne, etc. He’s been through more endurance tests than I can count due to a changing (and weakening) music industry --and when Lyme hit about 5-6 years ago, it threw he and I into a warzone unlike any other… We had no idea this would not only be unbearably challenging but also controversial…
Chris had already been working hard in NYC doing commercial music, and between the grind he was trying to get to the “best doctors” in the area. All of which either turned him away or basically told him “just drink more water”. (I’m sure a lot of you can relate-- We hear about doctors telling their Lyme patients that they are basically “crazy”).

The misdiagnosis hurt him more as it prolonged treatment of the disease and its coinfections. He told me when he found out, he had a feeling this was going to worse than he thought. His gut tends to be right. (His poor gut we now have to repair because the long course of antibiotics for a year ruined his system). Home nurses did injections and the IV. I went to see him, after he had to leave his advertising job in NYC…which was something he was just really taking off—and had to return to VA. We stayed in touch and were together long distance. I was just so stunned by his strength. This led me to do a lot of research as health was always a passion of mine (aside from art and music). Finding forums such as this one and to see how strong everyone is going through this…It just amazed me, but I also realized how insane it was that thousands of people are not getting what they need to take care of their Lyme. And if they are, they are going broke doing so…

We live together now back in NY on Long Island and we both despise it. His Lyme is still horrible, although much improved after taking on a more natural/herbal protocol (we have used guidance from Buhner’s protocols and others)-- Our “LLMD” while finally was the one able to diagnose Chris and help get him started, has not even been all that helpful. Friends and family are there but only somewhat peripherally. We are quite literally fighting everything on our own. (Actually really looking to leave NY soon-- if any one has any suggestions…A better, quieter vibe to heal, and more affordable)

We are still making music and on a positive and hopefully inspirational note, Chris has pushed through his pain and is currently creating his best music yet. The most recent album, Time Is Real, was greatly influenced by his Lyme struggle and so much of what came with that. (if you want to check it out: https://www.youtube.com/user/MachinePiano) We will be making Lyme-based videos as well.

Thank you for reading and we both look forward to hearing more of your stories and knowing we are not alone in this fight! Share what helps you heal. :slight_smile:

~Casey & Chris