Dr. R


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.

Tagged , ,

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.

Tagged , , , ,

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.

Tagged , , , , , , ,

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.

Tagged , , , , ,

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.

Tagged ,

Recovery Update – November 2008

Thursday, December 11, 2008 2 Comments by Chronic Triathlete

Alright… November.

What a roller coaster month. So much happened it seemed two months long. The summary in my November chart is almost a post in itself, but let me break it down here.

OMG… this neuropathy is diving me crazy!

The month started out with an upswing in the tingling and weird muscle sensations I've been having up and down my right side since the beginning. Only this time they were making guest appearances on the left side. This had never happened before and it really started to freak me out. Anything new that effects me physically sends me off the deep end with worry. I keep thinking I have MS or ALS or some other devastating autoimmune acronym.

This combined with the fact that my LLMD told me a few months back that he thought I'd "be off antibiotics by December" really confused me. So much, in fact, that I really sort of lost it. I was ready to drop my LLMD, move to a dark cabin above the tree (and tick) line in the mountains and start the Marshall Protocol or some other equally wacked out treatment.

Luckily I talked myself off the ledge and, with the help of a friend, set up an "emergency" meeting with my LLMD and his physicians assistant.

Hey doc, can I have some of that crack you're smoking too?

In the meeting with my LLMD I laid it out for him; essentially, the recovery picture he'd been painting for me was not matching the reality I was experiencing. He'd told me in August that he thought I was doing pretty well and that I'd be off antibiotics by December (now). I explained to him that not only was I not feeling that significantly better, but some of my symptoms, namely the neuropathy, was worse. What the hell's going on?

Well, it turns out that it was my level of exercise that threw him. When I originally went to see him in May 2008 I told him that I was not doing any exercise. He jotted down something like, "Athlete not exercising" in his notes under the assumption that I was unable to do any. The truth was that I was voluntarily not doing anything because I thought it was detrimental to my over all health picture. I did explain this in the initial meeting, but he must have omitted writing that part down.

In this same meeting he told me that it was okay to workout and that I should do as much as I can manage. I think I went for a run that afternoon.

Several weeks passed and we again discussed my level of exercise. I told him I was back to running 15-20 miles a week with my coaching and biking 30 or so. He jotted this down too and then compared it to his previous notes. To him it seemed as if he had taken me from couch surfing to running/biking 50 miles a week in just a couple of months. Not bad, and I don't blame him for jumping all over this. Unfortunately, it wasn't true. I probably wouldn't have been able to do as much as that upon my first meeting with him, but it's likely that I could have managed half that effort/distance.

So, after a long discussion and clarification session about what he was thinking and what I was experiencing we finally came to a place of mutual understanding. This was a big relief for me and somewhat of a recovery breakthrough. To organize and rally my LLMD, his PA, my wife and myself together in the same room and clearly articulate what was going on and get us all headed in the same direction was very fulfilling. One of the few times that I've felt in control of my life in the last year or so.

To IV or not to IV, that is the question

After all of the hugging and hand-holding was over we discussed what to do next about my treatment. My LLMD seems to think that I'm no longer absorbing the oral antibiotics. We talked about what's involved with a PICC line and  the pros and cons. We also discussed intramuscular (IM) Bacillin shots. Both of these get around the digestive system and get right into the bloodstream resulting in a more effective attack on the spirochetes.

The jury is still out on what to do. I'm seeing my LLMD again in a week and we're going to take up this topic then. Stay tuned.

Dear Mepron. You Suck

I continued back on the Mepron after my short-lived rash issue when initially starting it. I think it's helping. I no longer have the palpitations that I lead me to start taking it and for that I'm glad. Still, there are random days when it makes me feel like crap. I'll take it and then 30-45 mins later suddenly, wham! Brutal stuff.

Happy Thursday the 13th

For some reason on the 13th I felt great. Not 100%, but really pretty good. I felt positive and my brain fog, though still there, wasn't in the way of things. I was hoping that it would continue for a few more days, but it didn't last. Everything slowly returned to "normal" over the next 2 days. Lame, but a sweet reminder of what's (hopefully) down the road for me.

Run Forrest… run!

Speaking of the road… after over a year of non-competition I did my first road race in Central Park. I covered that in a post here. An awesome experience considering there was a time that I thought I'd never wear a race number again.

Chinese medicine and acupuncture

This deserves it's own post, but I started seeing a Chinese medicine practitioner. So many people say that herbs have helped them as much as drugs. I figure it's just another piece of the puzzle.

Thankful for Thanksgiving

I use holidays and other milestone dates to compare back and see what kind of improvements I'm making. We were in Atlanta again for Thanksgiving this year with my wife's family. Thinking back, I was pretty worthless last year. I recall having to take a nap almost every day and being generally lethargic the entire time we were down there. This year I was pretty engaged — took the niece and nephews to the aquarium, played some basketball, cooked a Mexican dinner for 11 people and generally hung out. Not bad.

On the down side, I tried to stick to my diet, but it was all but impossible. Not having a fridge stocked with exactly what I need combined with the fact that I've been urgently trying to keep my weight up and I simply couldn't manage. I stayed away from the obviously bad things like soda, sugary cereals and such, but I couldn't resist my Mother-In-Law's homemade apple pie. I gained 5lbs!

To sum up…

Like I said, a lot of stuff happened. The first part of the month was horrible, but the latter half was pretty good. I try to remind myself of this fact on days when I feel bad. The good days are coming (they are, right?). I just need to wait for them.

My November chart looks pretty similar to October's and the averages at the top correspond to the overall visual. They're down, but not significantly. Interestingly though, it's very different from September's chart and the averages are way down when compared to it. So, in the glacial speed of Lyme treatment, I guess that's significant progress.

Tagged , , , ,

Recovery Update – October 2008

Sunday, November 23, 2008 No Comments by Chronic Triathlete

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.

Tagged , , , , , , ,

Recovery Update – September 2008

Wednesday, October 22, 2008 No Comments by Chronic Triathlete

September? What… it's over already?!

The month completely flew by. Mostly because we were away for almost half the month in Vermont and Cape Cod, but also because I've been really busy with work. Or, I should say, not working. On top of all my other troubles I got laid-off from my job right at the end of August.

The lay-off didn't have anything to do with Lyme. I worked for a small technology start-up company and we lost our main investor. We were forced to cut a bunch of people and the entire creative department (me and the girl who worked for me) were let go. They told me it was purely a financial decision and that it had nothing to do with my performance. I'm pretty sure this is true because it was a pretty easy job (at least when compared to some of the big ad agency jobs I've had) and I was able to totally manage the hours and workload.

So the work I've been doing revolves around trying to get my portfolio up to date and taking care of some things I didn't have time to do when I was working full time. I've also been trying to figure out what to do next. I've got some ideas, but advancing them has been tough. Now that we're back from vacation I hope to gain some traction.

Health-wise September was the typical roller coaster (see September symptom chart). Right at the end of August, Dr. R changed my abx again and it sent me into a pretty huge herx. This lasted through the first week and a half of September and, at it's peak, was pretty rough. Most of the issues are neurological — tingling, numbness, brain fog — and emotional — depression, anxiety. I get some stiffness and aches and pains when I over do it with exercise, but it's no worse than when I use to over do it before I got sick. The only difference now is that overdoing it is a lot easier. I've continued to train my running groups without any trouble. This has been a great outlet for me. I really enjoy working with them.

As always, the brain fog is the worst. I can totally manage the other stuff, but not having my brain work properly is really hard. It's like having the worst hangover ever. I simply can't process top brain stuff very well. Things like complex instructions, reading comprehension and mentally juggling to do list items is really tough. Oddly though, I'm able to manage bottom brain things pretty well. Stuff like running and other physical activities. I'm also able to ride my Ducati at a pretty confident level.  This last thing being of great importance to me. It's so awesome to get on and ride. It infuses a little sense of control into an otherwise out of control life.

And that's it… everything is more or less the same. Perhaps a slight improvement in my fatigue, but it's hard to tell. Everything is sooooo slow. Stay tuned.

Tagged

Recovery Update – August 2008

Thursday, September 18, 2008 No Comments by Chronic Triathlete

August sucked. A lot.

I went through two really rough patches. One was brought on by my over doing the exercise. The other by a change in my medication.

I sort of covered the exercise issue in the post with the August symptom chart. Basically, I pushed myself too far. The result wasn’t unexpected. In the back of my mind I knew I was overdoing it, but I wanted to see how much was too much. Now I know.

The drug switch was much worse. It really sent me into a bad place both physically and mentally. Dr. R took me off the Omnicef, Zithromax and Flagyl (I hated Flagyl) and put me on Biaxin (500×2) and Plaquenil (200×2). These two are supposed to be a good combination. I’ve read about several people who did well on these drugs. Plaquenil is a antimalarial drug that reduces inflammation and, when used in combination with a macrolide like Biaxin, has strong anti-Lyme properties. Something about changing the pH levels in key cells elements to annoy the spirochetes.

He also told me to "continue taking the Minocycline", but I thought he told me during our last meeting to go off it. So I started taking it again.

All of my symptoms peaked dramatically almost from day one of this new collection. Really horrible brain fog and tingling — the worst I’ve experienced. I also felt sick to my stomach and really fatigued. For the first time in treatment I had to cut back on the prescribed dosages to stay functioning. I called Dr. R’s office to inquire if I wasn’t perhaps experiencing side effects from the new meds, but his physicians assistant told me that my reaction had the "characteristics of a herx". She told me to go off the Mino all together for the weekend, but I only cut it in half, opting to take it at night so that I could sleep through the worst of it.

After about a week things started to come back to "normal" and I started taking the prescribed dosages of everything. It’s a pretty potent mix, but I do feel some improvement. I’ve been having more good days than before starting the new meds and generally feel pretty okay. Pretty okay’s not too bad, right now.

I’ve been working on doing my stupid anti-candida protocol as well as incorporating the "nutracuticals" that Dr. R wants me to take into my diet, but it’s hard. And it’s a lot of damn pills to swallow every day. Something like 25!
That’s it for now. Next month will be my one year anniversary. Woo hoo!!

Tagged , , , , , ,

Recovery Update – June 2008

Wednesday, July 23, 2008 No Comments by Chronic Triathlete

Waaaaaaay late with this.

Almost half a month. Sorry, but with being away for the 4th of July holiday at the beginning of month I didn’t have the ability to wrap everything up for June.

Just as well because there’s not a lot new health-wise. Looking back to last month’s update I suppose I do feel better than I did after going on the new abx, but overall, from a 30,000 foot view I’m not feeling that much better. I think my brain fog waned some as I’ve gotten over the initial herxing, but I’d say it’s still worse than before I started the new scripts.

However, there is good news. I’ve been getting out and exercising quite a bit. My coach has hired me to help coach some of the classes he runs for the top running store in NYC — JackRabbit Sports. While some might say that doing this might be the reason why I don’t feel much improvement, I have to believe that it’s helping and providing what little success I’m feeling. It certainly provides a mental boost. Sometimes I don’t want to stop running or get off the bike because I feel so great when I’m doing it. I loath to go back to feeling tired, tingly and foggy again.

Dr. R gave me some new meds at the end of June that I’ve been on now for a few weeks. They’ve definitely changed the way I feel. Again, not so much better, but just different. I guess I’d describe it as a different herx. Some things are better, some things are worse. Six of one, half dozen of the other. More about that in July’s update when I have a better feeling for it all.

Oh… I wanted to say "thank you" to all the strangers out there who’ve emailed me well wishes and kind thoughts. It’s really great to hear from you. Again, if anyone wants to contact me, you can do so here chronictriathlete (at) gmail.com.

Tagged