Saturday, September 20, 2008

The beginning

What follows is a summary of what's happened so far. I'll try to keep it updated, so this can be the one place to see my path through the lyme labyrinth. (It feels like the Family Circus cartoon, where you see the dashed line that little Billy makes as he goes from point A to point B: over a wall, under a bush, around some trash cans, up a tree, ...)

July 2007

Camped out on July 4th in known tick-infested area along the Appalachian Trail in Connecticut.

Around 2 weeks later started feeling like I had the flu, but without the fever. Just felt like crap, very tired. "Must be getting old".

Also around this time I noticed a "heat rash" or chafing on the skin of chest and arm, near the pit. Thought perhaps it was the heat.

Next, one whole day I could hardly do anything because of the unexplained pain in the front part of the shoulder of that same arm. Felt like a rotator cuff injury, or a toothache. Very bad. Unfortunately, this pain didn't cause me to raise my arm and have a closer look at the rash...

The day after, it didn't hurt at all, and never did again. Hmmm. But gee whiz, I have these other aches now, each day in a different part of my body. What the heck?

Near the last day of July, I had my shirt off, and was in the bathroom in front of the mirror. "Heat rash" still there. I raised my arm. Uh oh. The heat rash was just the edge of the best looking lyme bulls-eye rash you ever saw, with the tick bite right in the center, exactly where I'd felt the shoulder pain.

I now knew I had lyme, but believe it or not, I still didn't put it together with the way I'd been feeling all month. When my family reminded me that those things were probably connected, it all fell into place.

The next day I bullied my way into an appointment with my GP. I simply raised my arm and he prescribed 3 weeks of oral doxycycline. No worries, it'll be all better, a minor inconvenience, nothing more.

August 2007

Once on the doxy I started feeling better within a couple of days. And I had plans. Lyme was an inconvenience, and I just pushed my way through my normal schedule, including a couple of day trips to a large outdoor music festival, and all the walking and standing in the hot sun that entailed. I just made sure to wear a hat and lightweight long sleeves, because doxy and sun don't mix.

Within two weeks on the doxy I was feeling much worse. I'd been told about herxheimer reactions, and though I didn't really understand, or believe it, I guessed that was all it was, and a good thing, too, since it meant the antibiotics were working.

Next week, back to the doc. Doxy all gone, and I feel much, much worse. Not only the complete wiped-out fatigue, but the daily act of living just seemed to be getting way more difficult, though I couldn't pin down details. In fact, I couldn't think very clearly at all, but didn't realize it yet.

The doc, a GP who I'd been to for years, and have (had?) respect for, said he'd give me 3 weeks of amoxicillin, but that I didn't really need it - it was "just in case". I was pretty doubtful, but he said I'd feel all better in a week or so. No worries.

I only took two weeks of the amoxicillin, as it wasn't doing diddly squat. I went back to the doc and he said there's nothing more to be done, I'm cured. It's just that certain people sometimes still feel tired for a month or more afterwards. Go home, and don't bother me anymore with this. OK, that last part I made up, but that was the vibe.

Next up: If I only had a brain


Anonymous said...

Hi Joe,

I've just started reading your blog and it's May, 2016. Wondering where, and how, you are now.


Joe said...

Good question. I received the lyme vaccine 7 years before I got sick with lyme. Some people had problems immediately after receiving it, but not me. Turns out I have the common DL4 gene that makes me susceptible to damage from the vaccine, but I only received two of the three shots required for immunity. I called to schedule the third and final shot, only to find the vaccine had been pulled from the market. In retrospect, if I'd received that third dose, I would have become ill in 2000, not 2007. So that's a good thing.

The bad thing is that I didn't just have lyme in 2007. I don't understand the biology, but apparently the vaccine was built on a common expression of lyme (ospA, or outer surface protein A). When I got bit in 2007, it's near certain the tick was carrying some ospA lyme. This acted as my third dose of the vaccine. And if I get bit in future, it acts as a booster shot. Very bad.

So when I got sick in 2007, I had two things. Lyme, yes. And also an autoimmune disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). The inflammation causes full body pain 24/7. It also causes some brain issues (mood, cognitive), and worst of all, it damages the nerves. I have both peripheral and central neuropathies. Hands/feet/legs, affecting coordination, balanace, and more. And also diaphragm, larynx, GI system, and more.

I'm pretty sure the lyme finally resolved, perhaps around early 2011. Hard to tell, due to overlapping symptoms from the two illnesses. And, newsflash, the thing that I credit with helping the lyme was a full year of sitting on a Rife Machine. I used it for two hours, on full power, twice a week. The herxes were horrible and legendary. First three months was hell. Second three months, just a bit less hellish. After a year, I no longer noticed any lyme symptoms, but it was only a couple years after that, that I was diagnosed with CIDP, and learned that there was another process at work here. So I didn't know I'd cured lyme. Just that it had "changed".

Bottom line, as skeptical as I was initially, I think Rife worked for me. If you try it, be VERY cautious at the beginning. I built up to those times I mentioned. My first test of the GB4000 machine was 15 SECONDS on the lowest power setting. I thought it wouldn't do anything, but it messed me up for a whole day. Go slow.

Also, if you had the vaccine, and you have issues, get tested for the DL4 gene. There's no cure for CIDP, but I receive IV-Ig infusions, which do help. The downside is the infusions themselves cause migraines.

One other thing I learned. I had been prescribed Biaxin (clarithromycin) for lyme early on, but we only tried it for a few months. We should have stayed with it. Macrolide abx have an anti-inflammatory side effect. I've been (back) on Biaxin now since 2011. It helps with lung and brain inflammation caused by the CIDP. It might have done more for the lyme if we'd tried for a longer period, I'm not sure.

Good luck!