Recovery Updates


Recovery Update – February 2011

Sunday, February 27, 2011 No Comments by Chronic Triathlete

An entire year since I posted a recovery update?

Yep… it’s true. It’s been a year since I posted and update in this category. Shit. I just reread the previous post from February 2010. Things are somewhat the same… somewhat.

What happened in 2010?

Nothing significant has changed as far as treatment or symptoms. I would say that I do feel better than when I last wrote, but I can’t measurably say what’s improved. I no longer keep the symptom charts anymore. My hope was that the charts would show some sort of “change”, but they simply reminded me that not much was happening so I dropped them.

Interesting Igenex results

One interesting thing that turned up is a trend in my Igenex results. I’ve never been CDC positive for Lyme, but I’ve always been Igenex positive… until my last test.

The chart below shows the three Igenex tests that I’ve had since getting sick. The first from 04.19.08 is when I found out that I had Lyme. It’s Igenex positive for both IGM (current infection) and IGG (past infection). The second from 07.30.09 shows an even more positive IGM and IGG result. This was right after I switched from Dr. R to Dr. M and basically took myself off antibiotics after a year and a half of getting nowhere.

The third and most recent test done on 10.13.10 is Igenex negative for IGM and essentially back to where I was on the first test for IGG.

Igenex results over timeMy current LLMD, Dr. M, took this as affirmation of his theory on my condition — that I do indeed have Lyme Disease, and that I’ve been treated appropriately, but that there’s something blocking my complete recovery. What that is, we’re not really sure, but he suspects neurotoxins or heavy metals.

Regardless of what the actual cause is, it was interesting to see these results. I don’t put a lot of faith in test results, but it did make me feel like maybe something is improving.

Addressing heavy metals

Another thing that turned up is that I’ve tested high for a variety of heavy metals. I posted about it briefly here. To describe the testing process, result findings and details on treatment for this deserves its own post so I’ll skip over all that for now.

The main thing to know is that I’m currently undergoing a series of chelation treatments to bring the levels down. My LLMD wants me to do a string of CA EDTA IVs – one per week for five weeks – and then retest to see if my levels are any different. From there we’ll decide if I need more… which I probably will since five treatments is a drop in the bucket for chelation therapy. The norm seems to be around 25-35 treatments.

What about exercise?

The exercise thing is going pretty well. The last race I did was the 2010 Falmouth Road Race way back in August. It didn’t go as well as I’d hoped, but I still beat my time from the previous year. I mistimed my training and peaked too early.

I should have backed off and taken a break, but instead, driven by my less than perfect performance at Falmouth, I pushed ahead determined to crush Grete’s Gallop in Central Park in October. This lead to blowing out my left Achilles and irritating the right. The winter has all been about rehabbing and recovering from that.

Rehab has me back on the bike — I bought a new Kuota Kult to soften the blow of not being able to run — and that’s been going well. This weekend I crushed some hills up in Harriman State Park by myself on Saturday and then did a hard Computrainer ride with my team on Sunday. The Computrainer ride had my average heart rate up in the 75-80% of max range with a couple of 95-100% spikes. This combined with the 60% average from the previous day’s ride forced me to take a nap in the afternoon.

It’s worth noting the nap because I never, ever get to the point where I have to nap. Except perhaps post running race where my heart rate is continually up in that 75%+ zone do I ever need to completely rest like that. There may be days where I would like to nap, but I never have to.

So, the upcoming season is looking good and I’m hoping that I can do the two half marathons that I signed up for in May. I don’t see myself shooting for any PRs, but just being able to participate on the new Achilles would be great.

That’s the gist of it

With the new format of this blog I hope to be able to post more often. Stay tuned for details on the chelation.

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Recovery Update – February 2010

Wednesday, March 3, 2010 7 Comments by Chronic Triathlete

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 – January 2010

Sunday, January 3, 2010 4 Comments by Chronic Triathlete

Time for an update

It’s been a long time since I’ve done any sort of recovery update, but seeing as it’s the New Year and all, I figured now would be a good time. Here’s what’s up.

Basically… same old, same old. That’s the main reason I haven’t felt the desire to post an update. There’s nothing new to say. I’m still foggy 24/7 with moderate cognitive issues, have light and diffused tingling in my hands and feet, feel a baseline tiredness that fluctuates from day to day, see floaters and have a short list of other minor things.

Treatment

All of the above is to be more or less expected, I suppose. I’ve been off abx – as well as any other treatment or supplements – for just short of six months. I detailed why in a previous post (I changed LLMDs).

For a short time I was on an herbal treatment that my new LLMD gave me – SpiroNil, a Teasel Root tincture, and Biotox Elim, its Berberine, Hydrastine and Artemisia annua-based partner. The two are designed to be a sort of a wrecking ball and cleanup crew combo. The SpiroNil blows up Borellia and the Biotox Elim mops it up and helps you clear the herx toxins.

Historically, I’ve not had a whole lot of success with herbals. I tried a variety tinctures from the Witch Doctor several months ago, but didn’t experience much of a herx or a real improvement. It was with this in mind that I recklessly jumped from a test dose of three drops a day after two days all the way up to nine drops. By the afternoon of the morning I jumped up I was in bed asleep, totally exhausted and with a rockin’ headache. Apparently this stuff actually works.

Trouble was, I was neck-deep in work. I had just picked up two really big projects – one that required a lot of travel to Washington DC – and couldn’t afford to be down for the count. I stopped the herbs right away.

But now I’m back on. My projects have either finished or fallen into a slow period and I can afford to take it easy and deal with some herxing. We’ve also been down in Florida for a two-week vacation over Christmas and New Years. That makes life a little easier too. Over the last eight days I’ve worked up to seven drops of both tinctures twice a day. I’m definitely herxing, but it’s all manageable… more or less.

Exercise

My recent running experiences have been rough. In December, I ran 87 miles and biked 34 (easy cross training days on the trainer), but it’s been hard to keep up with even this moderately reduced volume. There were days when I simply didn’t feel like going, but I did it anyway. I always know that two miles into it I’ll be glad I did, and for the most part this was true, but there were still times where the whole run sucked a lot. Legs feel heavy and slow; very tired. I try to write it off to the cold and having to wear tights, a windbreaker, hat, gloves and other motion-restricting gear, but I know there’s more to it.

Being down in Florida has been a little better. I’ve run 30 miles, swum dozens of laps in the pool and been to the gym 3 or 4 times to lift a little in the last eight days. I’ve also played (if you can call it that) a bunch of tennis. There have definitely been days where I over did it. Last Wednesday, 3 hours of tennis, a 5 mile run and 30 mins in the gym, did me in for a couple days, but I’m back to “normal” now.

What’s Next?

I have an appointment with my LLMD, Dr. M, on the 18th. The plan was to only do the SpiroNil and Biotox Elim until I got my new insurance sorted out and can get on some pharma treatments. I should be good to go with that by February so I’ll be discussing that with him.

The plan was to start shooting my ass up with some Bicillin. I’m so not into doing this, but it seems to be the next step since orals didn’t do much for me. People say it’s rather painful, but my LLMD said that I only have to shoot up two or three times a week. I suppose that’s better than painless pills three times a day everyday.

That’s all for now. Hope everyone is doing well.

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Recovery Update – September 2009

Friday, October 9, 2009 2 Comments by Chronic Triathlete

More data to review.

I’ve been off abx since July and the numbers seem to reflect that things are getting worse.

But the data doesn’t really tell the who story. Or, what I mean is, just looking at the numbers, bars and lines is misleading. For one thing, I made a change to the symptom categories of my data chart back around July. I deleted a few items and reshuffled others. Doing this is what gives the majority of the jump up.

Also responsible is my extreme increase in exercise. I feel that this really sets things off causing me to experience wild peaks and valleys in certain areas. I endure this trade off because I so love the valleys and the feeling that I get while running and/or biking, but perhaps it’s time to tone it down a bit. As I mentioned in the previous post, I’m now starting a six week “rest” period after a particularly intense two months. Both my body and the numbers are telling me it’s the right thing to do.

But numbers aside, I have to say that my neuro symptoms are, overall, a notch or two worse.  This is confusing to me because there were days, particularly around the end of the month, where things were pretty good. In fact I had two days where I forgot about being sick for hours at a time. Work was flowing, I went out and did things without feeling disconnected and spacey. Not exactly “normal”, but the best I’ve felt since getting sick, actually. Unfortunately, day-to-day, the fogginess is more “in the way” of things.

Today was a tough day and I expect tomorrow to be a rough one as I have to travel down to Washington DC for work. Regardless of what I said in the previous post about feeling pretty good after the race, I now suspect that the effects are now sort of settling in. I feel really jittery, anxious, tired and foggy. My hip has been hurting me too in ways it doesn’t normally. I’m also suspecting that I have some hint of a cold… which is weird because I have not had a single cold since getting Lyme — not even a stuffy nose. Back before I got Lyme, if someone in the house was sick, I would start downing  vitamin C and other immune-boosting supplements to fend it off. Now, I don’t even worry about it. Such is the state of my immune system.

I see Dr. M on November 2nd to go over my latest labs. I finally got the whole jug of urine thing that I mentioned awhile back done properly. Hopefully, after I see him, I can get back into some sort of treatment regimen. I’ve been taking my supplements and other non-pharma stuff, but I think I really should get back on the abx at some point.

Yearly Summary To Date

Yearly Summary To Date

Symptom Category Averages

Symptom Category Averages

Symptoms

Symptoms

Treatments & Exercise

Treatments & Exercise

Head & Eyes

Head & Eyes

Ears & Respiratory

Ears & Respiratory

Cardio & Muscles/Joints

Cardio & Muscles/Joints

Gastro & Neuro

Gastro & Neuro

Cognative & Emotional

Cognative & Emotional

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Recovery Update – August 2009

Wednesday, September 9, 2009 5 Comments by Chronic Triathlete

Writing the title of this post is almost like a joke to me.

When I started blogging my regular updates waaaay back on February 9th, 2008 I NEVER would have dreamed that I’d still be writing them in August, 2009. Only wish this joke was a little funnier :(

Alright… enough boo-hooing. What’s happening?

A change in momentum

I’ve started seeing a new doctor. I’ll call him “Dr. M” because everyone seems to insist that only using a doctor’s last initial keeps him anonymous and free from prosecution. This is, of course, absurd because any person smart enough to make it through law school could probably figure out who my Dr. M is without much trouble. But whatever…I don’t want to rock the boat (too much).

Those of you keeping score at home will probably remember that I’ve been seeing Dr. R since May 2008. I began going to him right after I was diagnosed. Even though I’m moving on, I still think very highly of him as he was instrumental in helping me in many ways. However, after being under his care for over a year with only moderate improvement, I decided it was time to work with a doctor who has a little bit of a broader perspective and looks at the body as a whole; someone more integrative.

Dr. R is arguably one of the top LLMDs to see if you’re deathly sick or have pronounced symptoms. I sat in his waiting room more than once while someone younger than me struggled to get in and out the door with their walker. Frightening to watch. My issues, on the other hand, are vague, often hard to describe and puzzling what with all the exercise I can manage. I was starting to feel as if he was running out of ideas. I also felt that he was only interested in targeting the (supposed) root of my symptoms — Lyme, Bart and Babs infections. He often told me that once we eradicate the bugs, the other systems of the body will fall into line. I bought into this for awhile, but more and more I felt like, for me, it’s more complicated than that.

What finally pushed me to move on from Dr. R was a conversation I had with a Lyme-suffering friend of my neighbor. She told me she had been seeing Dr. M for a few months and was feeling quite better on his Bicillin shots. We chatted about his approach for some time. Over a series of visits he looked into her condition from all angles, tested her for a variety of different hormone and vitamin deficiencies and analyzed her diet. All of these things filled the gaps that I was feeling within Dr. R’s approach. I made an appointment.

New approach

As of today, I’ve seen Dr. M twice. The first visit was a very thorough hour and a half chat where we went over a lot of stuff. The charts I keep were invaluable for this. All the time and effort I’ve poured into them is indeed worth it. He actually smiled as he flipped through them saying, “these are GREAT!” Together we went over everything and discussed the different peaks and valleys. I was able to easily answer which drugs I had been on when and for how long as well as which test I’ve undergone. There’s no way I could have recalled all of that without them.

After laying out my treatment history and current situation he gave me his thoughts. He feels that my symptoms, while certainly Lyme-like, are a little off. My ability to continue with such vigorous exercise is, once again, very unusual. As is my lack of muscle and/or joint pain. With all my history and test results he’s confident that I have Lyme, but what he’s unsure about is how much of my symptoms are still from the bugs and how much of them are from the aftermath of their presence.

At first, what he was saying made me fearful that he headed down the path of a Post-Lyme Syndrome (PLS) diagnosis — the term that those on the side of the IDSA use to describe the symptoms remaining after the “standard” 30 days dose of antibiotics. Fortunately, as he continued, I realized that this was not his intention. I think he’s looking at Lyme through the same lens as Dr. R, but he’s just coming at it from the other direction.

Dr. R (and many other LLMDs it seems) feel that if they simply treat the infection and eliminate the threat to the body, then the body will come around, repair itself and balance everything out on its own. Dr. M seems more focused on supporting all aspect of the body while treating the infection so that the body can better fight and repair itself. The end result is the same, they just come at it from different directions. Like I said above, I think the former is probably best for those who are super sick. For me, however, I feel that the latter is more what I need.

Testing, testing one, two, pee

So, Dr. M’s running a bunch of tests on me. Most of them focus on my adrenal functions and cortisol levels. He’s also testing me for heavy metals. All of this involves collecting an epic amount if urine.

I was asked to do a 24-hour collection and then another 6-hour collection after taking some binding agent capsules. I did them, but both tests had a lot of instructions to follow and my Lyme-brain became very confused. I called Dr. M’s office and spoke to the office assistant and got very specific instructions from her. I did as she told me and put some in the shipping container to FedEx over to Quest Labs. The remaining liter of urine went into my backpack which I  later took on my motorcycle through Manhattan traffic to his office.

Frustrated and depressed that my life had been reduced to hauling around large quantities of my bodily fluids to doctors that may or may not know what’s wrong with me all while paying for the privilege of doing so out of my pocket, I arrived at his office in a pretty foul mood. My mood quickly turned epileptic with rage after speaking to the nurse and learning that the assistants instructions were wrong and that I’d have to pour it all out and start over.

I’m laughing about it now as I type this, but at the time I was irate. The idea of pouring the entire liter out all over the counter flashed through my mind, but I thought better and maintained a level head. Next time I’ll know to ask for the nurse.

Moving on…

I see Dr. M again in a couple of weeks and should have some more info on the adrenals and other hormone issues. The more I look at the symptoms of adrenal fatigue, the more I think he may be on to something. Time will tell.

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Symptom Charts – July 2009

Monday, August 3, 2009 9 Comments by Chronic Triathlete

It’s been quite awhile since I posted a chart.

I actually gave up keeping track for a couple of months at the beginning of the year. When I started, it never crossed my mind that I’d still be using them after 12 months. I just assumed I’d better by then, or at least so far along that I’d no longer need them. Didn’t turn out that way.

When I started the charts, I created them in Adobe Illustrator. It’s a graphic design program that I’m very familiar with from my day job as a Creative Director. They were relatively easy to update, but they still took a lot of time to manage and version out each month. I decided that after December 2008 it was just too much to keep up so I dropped them. However, after three months, I decided to pick ‘em up again, but with the goal of making them easier to manage even if that meant making them less pretty.

I started experimenting with organizing my data in Microsoft Excel. This is what I’ve ended up with.

I track a series of 10 different condition categories and within each category there are several symptoms — 33 as of right now.  I based the categories and symptoms loosely on a questionnaire that my old LLMD gave. I rate each symptom every day on a scale of 0-10 everyday. I don’t really have a specific rating system for the scale (which I know skews the data), but, generally speaking, zero means it’s non-existent and 10 is severe enough to keep me in bed for the day. Luckily, I rarely get symptoms over seven. Generally, things seems to hover between four to six.

The beauty of Excel is that once I get the numbers in for each day, I can then cut it up any way I like. I have it set up to produce 14 different charts for me off of one table of data. If I was more adept at Excel I’d probably have more, but my knowledge of the application only goes so far. You can write complex formulas to run tasks for you automatically, but my scripting ability is poor.

Here are the different charts

1: Month to Month Comparison

This looks at averages across the categories and plots the results so that I can (hopefully) see a trends over months. As you can see, I’ve actually been using this format for four months now. Unfortunately, the trend seems to be going up instead of down. This is due in some part to a reshuffling of symptoms within the categories. I also swapped out some symptoms from my LLMD’s questionnaire that I’ve never had. With less numbers for the chart to average, some of the overall values went up.

2009_07_00

2: Daily Symptoms

This is the chart I add my numbers into daily. It might look overwhelming, but the whole process of opening the file, adding in the data and closing it takes roughly three minutes. Sometimes I also just write them down and then enter them into the document a few days at a time. Pretty simple.

2009_07_01

3: Daily Treatments & 4: Daily Exercise

The Daily Treatment chart has turned out to be a pretty valuable one. I use it to keep track if how well I follow my med and supplement regimen. A “Y” is for “yes” I took it that day, a “N” is for “no” I didn’t and and “S” is for I took “some” of it — basically I took it in the morning and not in the evening (or vice versa). As you can see from this chart, I haven’t been doing a very good job. A lot of the “N”s in July are because I took a break because I was herxing my ass off, and then later because my new LLMD told me to stop some meds and supps.

Daily Exercise is my favorite chart. Unfortunately, you can see that in July I was off running for a couple of weeks. I tweaked my Achilles Tendon in my left foot so I’ve been resting it and not running. You can see that I switched to the bike and have been putting in a lot miles there — though not as many as I’d like to.

I also keep track of my resting heart rate. This is something I’ll discuss in an upcoming post. It’s not as low as it use top be, but it’s still very healthy.

2009_july_02

5: Daily Averages — Symptom Category

This is essentially the table in the second chart represented in a picture. It takes an average of each symptom category everyday and plots it in this line graph. Looking at it this way makes it easier to see trends and the over all experience I had that month.

2009_july_03

6-15: Daily Totals — Symptom

The remaining 10 charts plot the daily results from each symptom and are organized by category.

2009_july_042009_july_052009_july_062009_july_072009_july_09

Analyzing the results

A pretty shit month, July was. I write the overall upward trend of the month to two things. (1) stress and (2) going off my meds.

The stress comes from work and home life. I picked up a ton of freelance work in July and I’ve had a pretty tough time staying on top of it all. I had to pull a couple of late nights to meet deadlines and be really creative about how I scheduled things. Even if I had been perfectly healthy I would have had a hard time with all this, but being foggy and having trouble concentrating multiplied by the fact that I’m sometimes in a world of self-doubt about whether I can meet what’s expected of me really increases the challenge.

The home front has been a challenge too. My wife’s picked up a ton of work as well. This is all good for us as our bank account was starting to really spiral downwards, but it’s also tough on us as we deal with stress in almost the opposite manner. I get calm and she get’s frenetic and we become like magnets with matched polarities.

Our 4.5 year old daughter is also out of school and, because our schedules are so varied and crazy, she’s not in a camp or regular day-care set up. Every week we have to try and figure out what we’re doing to entertain her and who’s taking there, picking her up, watching her after wards etc. It’s insanely stressful on me and it makes it tough to manage my work, trying to be well and my over all energy level.

Hopefully, August will be better.

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Recovery Update – May 2009

Monday, May 25, 2009 4 Comments by Chronic Triathlete

An absurdly long time since I’ve posted.

Partly because a lots been going on, but also because not much has been happening. I’ve been too busy for small updates and nothing major has happened with my health to warrant me sitting down and writing. But now it’s Memorial Day and I’m just sitting here in Cape Cod watching the tide ebb out of Town Cove. Thought I’d type up an update.

Antibiotic treatment continues

Of course it continues… seems like it’s never going to end. I’ve more or less abandoned the IV idea for now. At the very least until the summer is over. My LLMD agrees. I was denied outright by my insurance company (Aetna) and don’t have the mental energy to fight with them over it right now. If I was suffering horribly and/or bed ridden then I might have at them, but with the way life’s going right now I’m cool with letting it ride on the orals.

Instead of the IV, I’m sticking with the new coinfection regimen of Rifampin, Mino, Zith and Mepron along with Diflucan for yeast (and maybe Lyme). I herxed my head off when first switching to the Rif. It’s a wicked drug. In the first week or so of taking it there were times when I felt utterly and completely out of my mind. I experienced dramatic shifts in my emotional state on almost a continual basis. An hour of fierce anxiety and worry would blend into two hours of intense, almost manic attention on something. When I was focused on work it was a good thing, but when my brain decided it was time to, say, organizing my closet it was a fruitless and frustrating time suck.

It was as if my id sent my ego and superego on vacation. He kicked back, opened up a cold one and grabbed the controller of the PS3 that is my life. My usual laid back attitude was replaced by a pushy determination to get what I wanted. I feuded with store clerks, flogged a customer service representative and pretty much hated on everything my wife did. I don’t know how she put up with me.

I also found it almost impossible to stick to any sort of plan or schedule. My brain just took my body wherever it wanted to go regardless of how many to do lists I made. I would be fully aware of the fact that I had something to do, but if my id wasn’t interested enough to take action, we’d end up doing something else. I know this sounds pretty idiotic, but it’s true.

Luckily, this behavior faded after about two weeks. I’d have moments of anxiety or manic feelings, but they’d pass. Now, after about seven weeks it’s all settled down into a seemingly cyclical series of herxes. It’s too soon to nail it all down, but I seem to feel something every two weeks or so.

Smile, Bart! You’re on candid camera!

One major turn of events occurred last week when I went to see my LLMD. He’d sent some blood off to Fry for Bart and Babs testings during my previous visit. The results were back and I got a nice little photo of one of my red blood cells harboring some Bart — or “bart-like organism” as they seem to be being called these days.

This was kind of epic in a way. Even after all this time I’ve really only been 80% sold on the whole Lyme and friends diagnosis. I don’t exactly know what else it would be, but since I (A) never saw a tick (B) never saw a rash (C) have never been that sick other than the first 2 weeks of illness and (D) haven’t had any dramatic improvements after a year of treatment, the whole thing has been a little hard to buy into 100%.

When my LLMD handed over the page with the photo on it was like everything else just stopped. He kept talking, but I couldn’t hear anything. Meeting the little dark squiggle inside my red cell was like meeting the psychopath that had murdered my family. For a brief second time slowed waaaaay down. I was emotionally torn between shredding the paper with my hands or crying into it. It was unnerving. I just kept staring at it and thinking, “you little motherfucker.”

Anyway…the picture sold me. I’m 100% sold on the idea of some sort of tick born infection. I finally feel comfortable that I’m on the right track to getting healthy again. I still wouldn’t be totally surprised if something else came up down the road, but for now, I’m comfortable with the path I’m on. I’ll post the picture later in the week when I get back to Brooklyn.

That’s all I got for now. There’s some more (good) news about training and such. I’ll make another post about that later.

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Recovery Update – April 2009

Friday, April 10, 2009 3 Comments by Chronic Triathlete

It’s been awhile since I’ve done a proper update.

Sorry for that, but I’ve been mad busy with work, coaching, life, etc. So here we go…

First things first… another race

A few months ago my last beginning runners group did the “Race to Deliver 4 Miler” in Central Park as their graduation race. For fun I jumped in and banged out a pretty respectable time considering all that’s happening (or not happening as the case may be) with me physically. This past weekend I did it again with my new group at the “Run for the Parks 4 Miler.” The race report is coming after this post.

“Oh, that’s complete bullshit”

This is what my LLMD had to says about Aetna’s response to my request for 12 weeks of IV Rocephin. As you might have guessed, they (finally) said, “no.”

I was going to quote from their rejection letter, but I realize now that my LLMD must have kept it for my file. They basically said that long term IV therapy for Lyme is “unproven” and that they consider it an “experimental” treatment. The won’t cover it.

My LLMD has an idea about how to potentially get around this. It essentially plays the insurance company against itself by exploiting the weakness of their compartmentalized bureaucracy. I don’t want to go into any more than that here for fear of Big Brother, but it’s a pretty novel idea. Of course, it’s also sad at the same time… the things we have to do to get the medication we need. Amazing.

Look out Bart, it’s your turn

So while we wait to see if the IV trick is going to work out I’m going to take a swing at Bart. I downloaded the following co-infection check list coinfection_checklist.pdf (42.7K) from somewhere (LymeNet maybe) and found it interesting. After going over it I found that I had checked off many items in the Bart category. After discussing this with my LLMD we decided to try 6 weeks of Rifampin (along with my Zith, Mino and Diflucan) to see if it makes any difference. I’ll keep you posted.

Herbs

Through all of this I’ve been continuing to take the herbal tinctures that my Chinese herbalist gives me. I can’t even begin to explain exactly what’s in them — different anti-viral, fungal and spirochete elements is all I know. That and the current batch contains some cinnamon and tastes far and away better than the previous batch. Still tastes like poison though.

What’s next?

I’m going to wait and see what happens with the Bart treatment and then see about the Rocephin. Hopefully I’ll feel something with the Rifampin and be able to avoid the IV all together. Somehow I doubt it, but fingers crossed.

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Back In The Saddle Again

Friday, March 13, 2009 1 Comment by Chronic Triathlete

I wasn't planning on posting again until it got things sorted out with the IV one way or the other. I felt I needed a break from talking about Lyme for awhile. However, in the last couple of days I've had several people email me to see how I'm doing so I thought I'd just give a quick update.

Back in the saddle again

I'm back on the abx. My vacation lasted just about a month… and February is the shortest. For the first week I felt the same as when I was on abx, but then, around the 2nd and 3rd weeks I started to feel that toxic feeling lift. I can't specifically say that my symptoms were improved, but I just felt "clean" and more like myself.

During this time I got in an 11 and 9 mile run on consecutive Sundays and probably peaked out at around 22-25 miles a week. Nothing hard, and the miles weren't always non-stop. Often times when I'm coaching it's a lot of run ahead, wait for the back of the group, run ahead again, wait, repeat. Still, I felt pretty good about getting out there and once again finding that "zone" that only a long run can provide.

Sadly, at about the 4th week, I started to go downhill fast. All of my symptoms came rushing back and then some. I picked up a few new ones too. Mainly Babesia type stuff — tightness across the chest, pain in the soles of my feet, headaches, heart palpitations and strong fatigue. I've had vague Babesia syptoms in the past, but never this bad. Though I tested negative for all co-infections via IGeneX my LLMD suspects that I have Babs (but probably not Bart). That's why I've been on Mepron/Zith/Mino for so long.

So, I've been back on all of the above mentioned meds for almost 2 weeks now (I never stopped the Diflucan or Welbutrin). I started with just the Zith/Mino for a week and then this week added in the Mepron. Getting back on the drugs made me feel even worse so I'm feeling pretty shitty this week.

Bummer, dude

While the middle weeks of my vacation did show me some light at the end of the tunnel, I feel like I've just had a cave in and my way out is blocked. It's very discouraging and I've been pretty down about my situation this week. I'm hoping that I'll be able to quickly climb back up to my pre-vacation level of "wellness" soon. It was frustrating that I wasn't moving beyond the plateau, but it was far better than what I feel now.

What's next?

As for the big question of the IV… I'm STILL waiting for the insurance company to sort it out. The 3rd party that manages things between my LLMD and the insurance company screwed up and we had to resubmit everything. They said doing this would add another 7-10 days to the process. This coming Friday (the 20th) will be 10 days so I guess I'll know next week.

I started a thread on LymeNet to inquire about life with a PICC and exercise. It revealed some things to me that I didn't know so if you're researching the topic you might want to look here.

That's all I got for now. Thanks to everyone who's been in touch. It means a lot to know that friends and strangers alike are pulling for me. I'm pulling for all of you too.

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Recovery Update – December 2008

Monday, January 5, 2009 2 Comments by Chronic Triathlete

2008 sucked, didn't it?

It certainly was a year to forget in my book. I found out I had Lyme disease, got hit by a cab while riding my bike, buried grandparents, watched my retirement accounts dip 40%, lost my job and felt like crap most of the time. 2009 couldn't come fast enough.

Actually, while it's really easy (and very human) to focus on the negative, I've always somehow been able to see through it and find the positive. Over the last year it's sometimes been very, very challenging to track it down, but there have been a few rays of light. I get to see my wife and daughter more, I found out who my real friends are while at the same time discovering some new ones, I eat better and even though I was fitter before, I think now I live a healthier life. I've also faced up pretty well against some extremely challenging circumstances… or at least that's what my therapist tells me :)

What's lined up for 2009? I'm not sure. Of course, I hope it's an overall improvement in my health (and my bank accounts), but I also know that Lyme takes time. I'm doing damn near everything I possibly can to speed things along, but if 2008 taught me anything it's that there's no quick fix to it. I've also come to accept that sometimes doing everything I can may not be enough. I can't will or plan or organize myself to health again. It will either happen or it won't. And while this is a frustrating concept to accept — especially for someone who's use to being in complete control of his body — I've started to become comfortable with taking my hands off the wheel a little and letting fate drive for a bit.

But enough of this. What happened in December?

If I only had a brain

My LLMD wants me to start IV treatment and I'm pretty sure that's where I'm headed (more on that below), but I wanted to make sure that we triple checked any other possibilities off the list first. Since brain fog is my number one complaint I asked him to hook me up with a Lyme-friendly neurologist to make sure that there's nothing else going on up there besides Lyme. He did and I wrote about my visit with her here. She asked me to get a SPECT scan which I had done up at Columbia University Hospital on the 16th. I get the results tomorrow. I don't expect them to be anything groundbreaking.

Gettin' ma herb on

I already wrote about this too, but I started to slowly incorporate some Chinese herbs into my treatment. I was highly skeptical, but after I started to ramp up I got what felt like a fairly good herx off of them. I guess there's something to it. I plan to continue.

Prepping for a PICC

As I mentioned, my LLMD (and the neurologist) think that since I seem to have plateaued with the oral antibiotics that I should try a round of IV treatment. I literally can't believe that it's come to this, but I don't seem to have a whole lot of choice. I mean, yes, I have a choice, but I don't hold a lot of confidence in things like rife machines and such. Perhaps an IV will be the thing that gets me over the hump.

The general plan is to do 12 weeks of IV Rocephin. I would shoot up once a day, every day at home on my own. A nurse would come by my house once a week to change the dressing on the PICC. If the Rocephin's not working my LLMD mentioned there are some other options to try, but that he's had great luck with it for neuro symptoms.

The first step in kicking this off is to query Aetna (my insurance company) and see how much they're willing to pay for. I'm hoping for 1/2, but am only expecting 1/3. We'll see. I'll know more about that this week too.

Looking forward

One of my hesitations with the IV is that it's been a comfort while doing the orals to know that there's always a bigger hammer out there to use on my Lyme. I feel that if I go for the IV that I've sort of reached the end of the line when it comes to viable, realistic options. Yeah, could go all herbal or try to incorporate some other types of "alternative" treatments, but they're even sketchier than the IV.

I say "sketchy" because, truth be told, nobody really knows what's going to happen with the IV. In fact, nobody really knows what's truly causing my symptoms. Yeah, I tested positive for Lyme, but nobody can objectively say what the mechanisms that cause my symptoms are. It could be Lyme, but they could be viral related. Or they could be Candida at this point what with all the antibiotics I've been ingesting. Nobody really knows. It's all a fucking crap shoot.

But… fingers crossed and all that stuff. Hopefully I'll respond well and be able to close this chapter of my Lyme issues. Stay tuned for more. I'll post my chart for December real soon.

Oh, and happy New Year to everybody and thanks to all the people (strangers mostly) who've emailed me their well wishes and given me support over the past year.

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