Thursday, July 24, 2014

Yes, I Have Lyme Again

I apologize for the lack of frequent blog posts lately. We are dealing with a lot at our house this summer, including urgencies with both of our fathers, and I'd been in bad shape since the start of July, so writing time and energy have been scarce. It won't get much better before fall.

I wrote last week about the possibility that I might have Lyme disease again (including a brief history of my previous bout of Lyme). We traveled to visit my Dad over the weekend (he's undergoing cancer treatments), and I was able to get in to see our Lyme doctor on Monday afternoon. He confirmed that I do seem to have Lyme again, both because I know how it affects me - and the symptoms were exactly the same as the last time - and because I responded very well to doxycycline. Within hours of my first dose, the then-excruciating knee pain began to subside. After a few days on the antibiotic, my energy was back, I was feeling good again, nausea gone, and knee pain almost gone except for a bit in the evenings. And after a week on doxycycline, all my symptoms were gone, and I was feeling quite good again, back to my normal baseline of energy and stamina (not great for a normal person but on the high side for someone with ME/CFS!).

He took some blood to run a few exclusion tests, just to be sure there's not anything else going on. Lyme testing per se is pretty useless at this point for me. I had Lyme for over 3 years before and never had a positive test result the entire time, which is not unusual. I asked him about testing for other tick-borne infections, but he quizzed me on symptoms and said that if I didn't have any of the symptoms and the doxy seems to be doing the job on its own, then co-infections aren't likely. If any new symptoms crop up, we'll consider that again (once again, the testing is unreliable so diagnosis depends primarily on symptoms).

I responded well last time - and so far this time - to doxycyline, so we're going to stick with that. He gave me a coupon for a new brand called Doryx where the doxy is all encapsulated in tiny capsules in the pill so that it doesn't upset the stomach the way generic doxy does and you don't have to worry about what you eat with it (iron, calcium, and magnesium all block the action of regular doxy). So, that's all good. Doxycycline does cause sun sensitivity, so I'll need to be careful the rest of the summer, but it didn't affect me too badly before at this normal dose - I only noticed that effect at higher doses, so we'll wait until summer is over to go up on the dose.

Meanwhile, I am pulling out all the stops to avoid another yeast overgrowth. I am already on a strict no-sugar, no grains diet, taking high-powered probiotics, and anti-yeast supplements. I doubled all of that, and increased my dose of oregano (an antibacterial, antiviral, and antifungal) by 4. He is hoping we can manage without prescription antifungals, but we'll see.

As for whether this is Lyme STILL or Lyme AGAIN, it seems pretty clear to me that this is probably a new infection. I haven't had any of the symptoms I associate with Lyme (knee pain, nausea, continual worsening of CFS) in the 4 years since I got rid of Lyme the first time. Research seems to back up that hypothesis: a fascinating study published in the New England Journal of Medicine of patients who'd had Lyme more than once showed that in all cases, they were new infections from different strains of Lyme bacteria. You might think that's a strange coincidence, the same person getting Lyme more than once, but it's really not. I live in the mid-Atlantic, which along with the northeast, midwest, California, and many other areas have rampant numbers of infected ticks now and practically an epidemic of Lyme disease. Just about every family we know in our area has at least one person who's had Lyme.

In fact, here's my public service announcement again:

ANYONE with CFS or FM (and especially those with joint pain) should be evaluated by a Lyme expert for ALL tick-borne infections. They are incredibly common all over the world, very hard to tell apart from CFS and FM if you don't know what to look for, and negative blood tests mean nothing since they are known to miss many cases. There's more information in this blog post.

As for me, I am feeling much better and hoping that will continue. I also hope that I caught it early this time so that my treatment won't take nearly as long as it did before.

3 comments:

  1. I am so sorry to hear this, but relieved you are responding well to the antibiotics and getting better!!!

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  2. This is not fair, Sue! You are the most do-everything-right person I know, and I mean that as a respectful compliment! I heard the craziest thing on Jesse Ventura's Conspiracy Theory a couple years ago that infected ticks escaped from that island (whatever it's called) where they conduct all manner of secret inhuman experiments and that is possibly what is causing the Lyme epidemic. Anything's possible, and it all sucks.

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    Replies
    1. Thanks for the kind words, Judy - I really appreciate that.

      Lyme bacteria is ancient - it's been around for millions of years, found in amber that was 15 million years old! Lyme disease has probably been on the rise in recent decades due to urban areas and suburbs encroaching on the habitat of deer and mice (which are a part of the ticks' life cycle).

      Thanks for your ever-present support, friend!!

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