Dr. M


Recovery Update – January 2010

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

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

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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