Friday, October 07, 2016

Lyme Disease - Back, Again, Still?

Copyright: goldfinch4ever / 123RF Stock Photo
Sorry I have not been posting here much lately. Last week was for a good reason: I was away and offline all week. My husband and I took our first full-week Empty Nest vacation! This is especially exciting for us since our oldest son - now 22 and in college - has both ME/CFS and three tick infections and quite often needs our help, so the "empty nest" is quite an accomplishment for us, even for just a week! In fact, we had planned this trip for the beginning of September and had to postpone it when that son came home sick for almost 3 weeks - first with strep throat and then with bronchitis. So, having time to ourselves with both sons healthy and at school was a big deal!

This week, I haven't been on the blog (or on Twitter or Facebook much) partly because I've been struggling to catch-up after the vacation (I still have over 500 e-mails to get through!). Mostly, though, it's because I have been feeling terrible all week. It started Saturday morning while we were still on vacation - exhausted, achy, etc. I chalked it up to my yeast overgrowth flaring up from sharing a dessert with my husband the night before for our 27th anniversary, but by afternoon, both of my knees started to hurt.

Knee pain for me is a sign of Lyme disease and sets off a panic reaction in me! The last two times I had Lyme, severe, intense knee pain was my primary characteristic. It never happens "just" from ME/CFS, only with Lyme. By Sunday, the knee pain was crippling, and I sobbed myself to sleep that night (and woke often during the night from the pain). I was still trying to convince myself this was just a fluke, from a yeast flare-up or some other weird ME/CFS symptom. The knee pain only got worse, though, and Wednesday morning, I called our Lyme specialist for an appointment.

I went to see him this morning, and he agrees it is Lyme, based on my history and distinct symptoms. It's the only time I get intense pain like this in both knees with such severity, plus all of my usual ME/CFS symptoms are badly flared up. He implied, and I have been thinking, that is is likely a recurrence of the same infection. There are different school of thought (as there are with every aspect of Lyme!), but most experts believe that when you "get rid of" Lyme disease and feel better, there can still be traces of the bacteria left, hidden and dormant, in your body that can then flare up again years later. For comparison, it helps to understand that the type of bacteria that causes Lyme - a spirochete - is the same type that causes syphilis. The last time I had Lyme, about two years ago, I was certain it was a new infection from my original bout seven years earlier (you can read about it in the linked blog post). This time, I'm a bit more skeptical - twice is a coincidence (and quite common where I live), but three times within 15 years with the exact same symptoms is harder to swallow!

We decided on a different treatment plan today than in the past. I have normally just taken doxycycline (standard antibiotic treatment for Lyme disease when no other tick infections are present), but I am still struggling with chronic yeast overgrowth (quite common in ME/CFS) now, and I know I can't tolerate 2-3 months of antibiotics. The yeast makes me feel as bad as the infection itself does! Instead, he recommended I use the same Byron White herbal protocol that my son has been on for the past few years (he has Lyme, babesia, and bartonella). He feels it will be very effective for me, since we are catching this early, and - bonus! - the formula he is prescribing for me, A-L Complex, is actually antifungal, too, and should help with yeast.

I made my own decision when I got back home (90 minute drive each way!). Since I have to wait for the herbal formula to be shipped, and it is Friday, I didn't want to wait to start treatment. I still have some doxycycline left here at the house and started it at lunchtime today. I'll do that - at a moderate dose - for a few days until the herbal formula arrives. I took my first dose about 3 hours ago and woke up from my nap thinking that my knees were maybe a little better already. Then, I told myself that was crazy! It's only been a few hours....but I see on the post from a couple of years ago that I did indeed start to feel better within hours. So, that is further proof that this is indeed Lyme, whether old infection or new, it doesn't really matter.

Now, for the Public Service Announcement:

Everyone who has ME/CFS or fibromyalgia should see a Lyme specialist (LLMD) to get a full evaluation for all of the common tick infections.

These infections are far more common than most people realize, and they have been found in every U.S. state and on every continent in the world, except Antarctica (yes, we are considering moving there!). Most people (myself and my son included) do NOT see the tick that infects them - the ones that carry infection are the size of the dot at the end of this sentence. Tick infections are almost impossible to tell apart from ME/CFS and Fibro, and the blood tests are not reliable. if you get a positive blood test result, you can believe it, but the tests for all of the tick infections are highly prone to false negatives. The very best Lyme blood test available only catches about 65% of the cases - those are pretty bad odds, especially when your life is at stake. Check out that blog post linked above for more details on symptoms, diagnosis, etc.

So, that's me for now. I'm hoping I will be back to feeling more like myself and my "normal" baseline by next week, so I can get back to more regular blogging.

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