Eric15
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- Aug 28, 2011
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I've been battling Lyme Disease for about 8 months now, so I wanted to share my experience with the board, and offer my support if anyone needs it.
Prior to last year, Lyme Disease to me seemed like an obscure thing that only rural woodsmen would acquire. But it's basically a statistical guarantee that if you live in the Northeast or Mid-Atlantic, either you or someone in your family will acquire a tick-borne illness at some point in their life.
People who get bit by a tick, but see the "bulls-eye" rash and act quickly are the fortunate ones. They just take 4 weeks of oral antibiotics and it's gone, similar to something like strep throat. Unfortunately for many others like myself, I never saw the bite (it could have happened years ago), so the infection slowly worked its way into my central nervous system and is thus exponentially more difficult to kill.
Traditional Lyme antibody tests that you would get at a place like LabCorp yield a lot of false negatives. When my original test came back negative back in the fall, a wild goose chase for what was wrong with me ensued. I was tested for everything under the sun, e.g. Rheumatoid Arthritis, Lupus, Hodgkin's Lymphoma, etc. My primary care doctor even suggested that I might be depressed and I was imagining my symptoms (knee stiffness, crippling fatigue, brain fog, overnight sweating). It wasn't until I paid out of pocket to have my blood sent to a high-tech lab near Stanford that I definitively learned that I have Babesia Duncani, a tick-borne co-infection similar to Lyme.
I literally spent months planning a huge tailgate for family and friends for the Cuse/Maryland football game, but couldn't attend because I was so out of it. (probably a blessing in disguise, in retrospect).
After having an antibiotic intravenous picc line installed in my arm from January-March, I'm currently taking the drug Disulfarim, which is originally intended to treat alcoholism but has been shown to be very effective in killing Lyme bacteria. I've gone from about 2 out of 10 on the "feeling good" scale to fluctuating between 6-8 out of 10. So a lot of progress, but not quite to the level yet where I can exercise normally.
If you suspect you may be infected, it's absolutely imperative that you see a "Lyme-literate" physician. For example, Johns Hopkins is the best hospital in America, but they are basically on the level of Dr. Nick from The Simpsons in tick-borne disease sophistication.
So basically, I want to transition into "pay-it-forward" mode, so if you or anyone in your family thinks they may have a tick-borne illness, you can point them in my direction and I can help them navigate it as best I possibly can. Just PM me and I'll give you my email address and/or phone number.
And yes, Corona(virus) with Lyme is a solid Dad joke.
Prior to last year, Lyme Disease to me seemed like an obscure thing that only rural woodsmen would acquire. But it's basically a statistical guarantee that if you live in the Northeast or Mid-Atlantic, either you or someone in your family will acquire a tick-borne illness at some point in their life.
People who get bit by a tick, but see the "bulls-eye" rash and act quickly are the fortunate ones. They just take 4 weeks of oral antibiotics and it's gone, similar to something like strep throat. Unfortunately for many others like myself, I never saw the bite (it could have happened years ago), so the infection slowly worked its way into my central nervous system and is thus exponentially more difficult to kill.
Traditional Lyme antibody tests that you would get at a place like LabCorp yield a lot of false negatives. When my original test came back negative back in the fall, a wild goose chase for what was wrong with me ensued. I was tested for everything under the sun, e.g. Rheumatoid Arthritis, Lupus, Hodgkin's Lymphoma, etc. My primary care doctor even suggested that I might be depressed and I was imagining my symptoms (knee stiffness, crippling fatigue, brain fog, overnight sweating). It wasn't until I paid out of pocket to have my blood sent to a high-tech lab near Stanford that I definitively learned that I have Babesia Duncani, a tick-borne co-infection similar to Lyme.
I literally spent months planning a huge tailgate for family and friends for the Cuse/Maryland football game, but couldn't attend because I was so out of it. (probably a blessing in disguise, in retrospect).
After having an antibiotic intravenous picc line installed in my arm from January-March, I'm currently taking the drug Disulfarim, which is originally intended to treat alcoholism but has been shown to be very effective in killing Lyme bacteria. I've gone from about 2 out of 10 on the "feeling good" scale to fluctuating between 6-8 out of 10. So a lot of progress, but not quite to the level yet where I can exercise normally.
If you suspect you may be infected, it's absolutely imperative that you see a "Lyme-literate" physician. For example, Johns Hopkins is the best hospital in America, but they are basically on the level of Dr. Nick from The Simpsons in tick-borne disease sophistication.
So basically, I want to transition into "pay-it-forward" mode, so if you or anyone in your family thinks they may have a tick-borne illness, you can point them in my direction and I can help them navigate it as best I possibly can. Just PM me and I'll give you my email address and/or phone number.
And yes, Corona(virus) with Lyme is a solid Dad joke.
