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4 month Lyme treatment update

Posted Aug 06 2012 2:38am
So, four months ago I was diagnosed with Lyme Disease...which will hopefully turn out to be the root cause of my CFS. Well, technically it's not 4 months until a week from now, but close enough! I had an appointment with my lovely CFS specialist MD again last Friday and I thought I'd update. No blood work done for this visit, he thought it was good enough last time to not do it until my next two month visit. So, to recap: I've been on antibiotics for almost 4 months now. I started with 1 month of 400 mg/day Azithromycin (Zithromax), then switched to Doxycycline because my insurance wouldn't cover Zithro. So I've been on 400mg Doxycycline ever since. He also added Suprax (antibiotic) and Amantadine (antiviral and kills cystic form of the Lyme bacteria).

After this visit, I'm supposed to replace Suprax with the antibiotic Ceftin this week. So now it'll be Doxycycline, Amantadine, and Ceftin. He keeps switching up the antibiotics because the Lyme bacteria adapt easily to each antibiotic, so gots to keep the Lymies (my pet name for them) on their toes! I'm to continue taking the supplements he recommended. These are Transfer factor for Lyme (immune boosting), and Parasite X which contains black walnut hull, olive leaf extract, berberine sulfate hydrate, and artemisinin. These last ones have immune boosting, anti-fungal, and anti-parasitic (Babesia specifically which is a Lyme co-infection; I wasn't tested for this, but just in case) properties. And there's also the bioidentical T3 hormone I've been taking and the gamma globulin injections I've been doing from the start of my CFS treatment, but thats not directly related to the Lyme per se.

The biggest shocker of the visit was when he told me that he wants me to start doing resistance exercise. He said my heart rate can go even as high as 150-160. I think my eyes nearly popped out of my head. But he said to start slow, only do just a few minutes at a time if I can't handle more, and slowly build up on it. If I feel strong effects afterwards, rest until I feel better, and try again but less intensively. He said resistance exercise (weights, stretching, etc) has been found to show immune boosting action (increase in T cell activity). Based on the stuff I've tried before, I can see how this helps because I've felt some improvement (albeit tiny) with the basic of most basic short stretches. So, we'll see how this goes. And he said under no condition should I do cardiovascular exercise.

While I'm completely wary of this suggestion to start resistance exercise, I will try and be my own physical therapist and start at like a minute's worth of light weights a couple times a week and build on it. I think I just have to trust him. He's been my doctor for 3 years now, and since I've been seeing slow but consistent improvement with him, he hasn't led me astray yet. I asked how other patients of his have been doing who were diagnosed and treated for Lyme and he said one of them who was much worse off than I was and had been sick for 5-6 years is now 100% better (after about a year of treatment) and another similar one is now training for a half marathon. Now, with any other doctor, I'd be quick to write him off as just trying to make me feel better or exaggerating, but in the 3 years I've been with him he's never been quick to say things like that or make statements to give me false hope. So this gives me hope. So I will try because I trust him.

But in the end, there's nothing I can trust more than how I'm feeling. And that gives me the most hope of all. I'm by no means much better. But my quality of life has changed a little bit for the better; I feel less sick day to day doing the same level of activity as 4 months ago and I can even do a little more! Today I even swept my kitchen for the first time in 4 years! Haha. Not to say it was without ill effects afterwards, but I've never even had the urge to. So, these antibiotics are definitely doing something. Some might argue that they're just immune-modulating and it has nothing to do with Lyme, but I did have a short 2-3 week (mild) herx experience in the beginning. But anyway, even if I never get all the way better, I can just be happy with where I am now as long as it's better than before :)

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