samento


Recovery Update – February 2010

I’m bad

I’ve been rather negligent about posting recovery updates over the last few months. Damn, here it is March and I’m still trying to finish February’s update! I started jotting things down several weeks ago, but the time just flies.

This is frustrating for a couple of reasons. One, because, much to my surprise, some folks actually find what I write here helpful and I like to keep them updated. And two, because it’s helpful for me to be able to go back in time and remember how I felt and recall what was working… or not.

Part of the delay stems from being pretty busy. Busy with work, busy with family and, frankly, busy with not paying too much attention to my Lyme. Oh, it’s still there. It sure is, but I’ve been trying not to think about it so much anymore. As a result, writing blog posts about how I feel never quite makes it to the top of the to-do list. I find writing about other things like this and this and especially this more interesting and fulfilling.

But enough already. What’s going on?

Learning to live with it

To tell you the truth, I’ve more or less stopped dreaming of a recovery at this point. Regardless of what the next steps are in treatment, I’ve sort of resigned myself to the fact that I’m not going to see a dramatic turn around in my condition.

I was originally thinking that I was on the five-year plan and that if I toughed it out for that long, I would reach a state of health that I considered satisfactory (if not 100% recovered). I just don’t feel that it’s going to happen anymore and perhaps it’s time to stop dreaming about it everyday.

I know I’ve been off abx for seven months now so I shouldn’t really be expecting any change, but oral antibiotics did little for me when I was on them and the three or four things that I’ve tried recently — modifying my diet, various supplements, a few herbs, etc. — haven’t really been home runs.

I realize this sounds pretty doom and gloom and like I’m giving up, but it’s not like that. I guess I’m just affecting a more realistic approach. Not thrilled with this new tact, but I’m accepting of the situation. I expect that I’ll continue to try various things, but I’m not getting my hopes up anymore.

I guess I’d be less inclined to settle if I was worse-off than I am, but the truth is, I feel pretty good except for the never ending neuro symptoms. Brainfog is still rather pronounced, the tingling in my hands and feet is still there though I hardly notice it and I have a low-level of fatigue. I think a small aspect of the fatigue comes directly from the disease, but most of it comes from the fact that I don’t sleep very well.

Just run with it

Much to my and my LLMD’s confusion, my running and overall fitness continues to improve monthly. In January I ran 19 times for a total of 95 miles and biked once for a total of 18. All of this felt manageable and within my abilities to accomplish without feeling cooked later that day or the next. There were times when I was reeeeally looking forward to my regular Friday rest day, but all-in-all it feels good. I expect a similar level of activity going forward.

One thing that’s really been helping me both with my running and in everyday life is hitting the gym. I only started keeping track of my attendance recently so it’s not indicated in my log, but I’ve been going anywhere from one to three times per week since the beginning of the year. I generally just stretch, do some basic runner’s strength-training, bodyweight-style exercises and some minimal weightlifting. Nothing super intense like lifting to failure or testing my max. It’s all targeted more for endurance than strength and seems to compliment my other activities well.

With all of this coming together, I can’t help but start dreaming of race goals. I’m seriously contemplating setting another half marathon PR in May as well as a couple of other things later in the season. It all sounds absurd, I know, but while it’s true that I’m not running uninhibited by Lyme, what I am doing doesn’t seem to exacerbate my condition or directly effect how I feel day-to-day. Case in point: the 5k I did a couple weeks ago.

Treatment right now

I’m still taking the Samento, SpiroNil and Biotox Elim as well as another trio of detox herbs. They’re manufactured by PEKANA in Germany and target three different areas: apo-HEPAT is for the liver, ITIRES is for the lymphatic system and RENELIX is for the kidneys. I have to admit, since I started taking these, there are days at a time where from the neck down I do feel “better”, but I can’t really put a finger on what’s really improved. Unfortunately, they’ve done nothing for my brain fog.

However, I do get what seems to be some sort of cyclical herxing from this combo. It comes on three or four days after I start (I’ve taken a couple of week-long breaks) and lasts for an additional three to four days. Then approximately every four weeks I feel worse. This is either due to the bugs coming out and being killed by the Samento and SpiroNil or just the bugs coming out and fucking with me. Hard to say.

Treatment going forward

Still on the fence about the IM Bacillin. I have to keep pushing my LLMD appointment out and every time I do I have to wait an additional three weeks to see him so no advancement on that question.

And that’s about all I got for right now. There’s more to talk about, but this is getting lengthy. Stay tuned for March’s update. I’ll probably post it some time in June.

Hope you’re feeling well.

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Recovery Update – October 2008

I totally forgot to post an update for October.

I've been really busy with work and family stuff. I've also been trying in general to think less about Lyme and more about getting on with my life. That's not to say that I feel significantly better and don't think (obsess?) about it every day. I just decided to not spend so much time trying to solve what seems to be an unsolvable problem. If I get better, great. If not, so be it. There's really nothing more I can do.

Anyway, back to October… Saw Dr. R on the 15th and we talked about Babesia. I've been having some shortness of breath (like being at altitude), occasional heart palpitations and some pain in my feet. I'd read that these were symptoms of Babs and Dr. R agreed. He put me on Mepron and Zithromycin which seems to be the default combo for this.

I started it, but about 10 days in I developed this itchy, blotchy rash all over my chest, arms, legs, feet; basically anywhere my clothes rubbed my skin. At first I thought maybe my wife had switched up the laundry detergent, but no. I called Dr. R's office they told me to stop all meds until things cleared up. I did and about 4 days later I was fine. They couldn't tell me if it was an allergic reaction or a reaction from the Babs, but I asked around on LymeNet and several people had had simliar experiences with Mepron. By the end of the month I was back on it and have not had any further rash issues, however, I think I'm having absorption issues. More on that next month.

In addition to starting the Mepron/Zith I started to really ramp up the herbal stuff. I've been really interested in better incorporating herbal Lyme treatments as well as immune-support and detox helpers into my regimen. It's all fantastically confusing and I haven't the patients for it, but I've learned quite a bit from reading online and emailing with other sufferers who've worked with them. I think I've mentioned them before, but Grapefruit Seed Extract and Samento seem to be at the heart of treatment for most people going the herbal route. I've been toying with them, but through the latter half of October I really started to take it all seriously.

Over a period of 3 weeks I worked my self up to about 13 drops of GSE and Samento once a day. This is somewhat faster than they recommend, but I'm not very patient. I think I started at 5 drops and then added a drop each evening until I started to really feel bad (herxing?) and then left it there. I was getting ready to start splitting up the dosage and begin to take it in the morning and the evening, but then the Mepron rash hit me and I decided to stop everything.

Sadly, I've yet to get back to it even now in mid November. However, I did go to see a specialist in Chinese medicine last week and expect to be taking more herbs soon. Check back next month for more details.

Sorry for the lame-ass update, but that's about all I can recall. Will do better in November.

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