Wednesday, September 24, 2008

Eventually a new direction

Back to: Getting better, or going crazy?

Spring 2008

Nothing much happened during March and April. Literally. I mostly sat, either in bed, on a sofa, still having "fadey" episodes most every day, triggered by the most miniscule stress or physical activity. I think it was during this time that I began to get the tiniest bit better - enough that I could see that for months I really hadn't had a creative thought. Usually I'm always thinking about things. If not daily stuff, then my mind wanders into philosophic, spiritual, intellectual, and other realms. But life hasn't been that way for some time now, and I didn't even really know it. It took getting just a little bit better to start actually thinking again.

Before I got ill, I would sometimes meditate and stretch (not actually yoga), and work on my energetic self, freeing up blockages. It would have been very helpful to be doing this during the illness, but I had been, and still was, so sick that I couldn't even begin to work on healing myself. At least now I was becoming aware of the fact. That's progress, right?

Actually something did happen in April. Some of my friends drove me to Vermont and we camped out in a deserted car campground. It was before the open season, so no one was around and it was very beautiful and quiet. My wife joked as I was getting ready for the trip that it was like the Make-A-Wish Foundation. To be clear, I'm not making fun of that organization, but of me. The poor sick boy (me) wishes for nothing more than a few days with his friends in the woods. A change of scenery. Very, very nice.

As you may imagine, I was exhausted even before I left, even though my wife did most of my packing. I've been a camper and hiker all my life, and even hiked the whole Appalachian Trail in 2005, sleeping out for something like 120 nights. (You can read a journal of my hike here) But this time I had a difficult time figuring out everything, like how to set up my tent, what stuff I needed to bring, etc. I'm such a mental midget these days.

I spent a lot of the time taking naps in my tent, while the other guys talked and hung out by the campfire. Even so, I had a great time.

In May, I got tickets for my wife and I to go to a concert. Darkstar Orchestra, a band that recreates Grateful Dead shows. I'm a complete DeadHead, and I was very excited to get to go out in the world a bit. My wife isn't a particular fan of the band, but went with me to do the driving, etc. (I've mentioned elsewhere that she's a saint - it bears repeating) The venue was a small opera house, and I just sat in the back, out of the way. No jumping around for me. Didn't matter, I still got one of the most severe episodes I'd had in months. Way too much visual and audio input. I was literally sitting there staring at my shoe, drooling a bit, through most of the second set, unable to talk or move. I don't really remember much of the show.

This prompted me to realize that perhaps I wasn't getting a teensy bit better each day, as I had been rationalizing. So back we went to the original infectious disease doctor - the one who'd said I had "post-lyme" and that there was nothing else to do but wait. So, at this point, I was better than when he last treated me. I had exactly the same symptoms, but less severe, and I tended to recover more quickly - in a few hours as opposed to a day or more.

I brought the doctor up to date, and I just kind of wanted him to confirm that I was where he thought I should be - in the "wait" period, and getting there slowly. But he shocked me by stating that he really didn't know what to make of my symptoms. I could have choked him. Waiting all this time because of misplaced confidence in him, and now he doesn't back it up. Aarrgh.

Somehow, I guess I was grasping at straws, this doctor convinced me that I should try anti-depressants, and that if I did, he was totally confident (he's always totally confident, ugh) that I'd be completely well in a month. I didn't really buy that, but I cautiously assented to trying the drugs.

I took a single 10mg Lexapro. Within two or three hours, I gradually noticed a building, urgent anxiety. Before long, I was in the grip of a full-blown panic attack. I know this because I read later trying to figure out what had happened to me. One thing I read was that a key signature of a panic attack is that it's often described as the worst experience of a person's life, and that it'll be remembered forever, so bad is the trauma. Yep. It's all that. It was a seeming eternity of complete urgent insanity. Horrible.

The next day my wife called the doc and explained what happened. He said it was impossible that the drug caused that. As I'm writing this, I'm getting really angry with that jerk. He said "I'm not saying your husband is crazy..." You know, how statements like "let me be honest" usually mean the opposite... He recommended a psychiatrist, who would repeatedly try different anti-depressant cocktails. No friggin' way, Jack. Not happening.

Right around this time I received a notice from the insurance company that my long-term disability was being denied for future periods. I describe this more in What I wish I'd known earlier. That was a real punch in the gut. Between the doctor and the insurance, we decided we had better take a different approach.

We re-evaluated what we'd learned about the lyme literate doctors (LLMDs), and chose a couple, hedging our bets. We made appointments a couple of months out, and waited.


Summer 2008

The first doctor, Dr. Raxlen of NYC, didn't work out - he took our money and didn't follow up at all. Very disappointing. More details here. The second time was the charm. Dr. Steven Phillips, of Wilton, CT, seems very, very good.

But more on that in a minute. After we saw Dr. Raxlen, my wife, who is an experienced yoga practitioner, arranged for me to have a private lesson with a restorative yoga instructor. I don't normally do yoga exactly, but I do meditate and stretch a bit. During some of the "bad" periods, of the worst neurological symptoms, I'd feel like I couldn't even calmly inhabit my own body. All jangly and pacing around, with a constant low-level anxiety about nothing in particular I could focus on. Very nasty feeling, and it lasts for days sometimes.

So, during those times, my wife had done a little (very little) yoga with me, and it had helped a lot. Just by causing me to focus on my body, it grounded me. Based on this, I'm interested to do more yoga when I get my energy back. So, rambling here, we did this restorative session, and there were a couple of interesting things.

One, the instructor was very nice, very understanding, she works with people that have problems all the time. She tactfully offered the opinion that sometimes during a chronic illness, you just have to work through it. Just push yourself. Now, I constantly second-guess myself with this disease, but I'm certain that lyme isn't something that works this way. I sense this common misunderstanding a lot. Acquaintances kind of look at me strangely, like, how can you really be that ill? Just get over it. It feels awful lonely in this place sometimes.

Also, the session went well, I was able to do most of the positions she showed me. I felt pretty good about it. Keep in mind that it was only something like 5 very easy postures, designed with extra support for sick or injured people. Well, the other lymies reading this must be chuckling. I was hardly able to move for almost a week. I was incredibly sore and fatigued. Push through it. Hmmm. My pusher's broke.

Finally, as we were leaving, the instructor offered the name of a chiropractor who practices integrative medicine, mostly using muscle testing and acupressure. Dr. Sean Diamond, in Trumbull, CT.

I've been seeing Dr. Diamond ever since, and he's really helping a lot. I describe my feelings about this kind of treatment here. I'm very grateful I found him. He's very knowledgeable, and very flexible, perfectly willing to work around the LLMDs antibiotic regimen. What was absolutely amazing to me when I first started seeing him was that I wasn't on any antibiotics at that time, and all he did was some muscle testing to see what needed adjusted, and adjust with acupressure, which mostly consisted of tapping me on the spine while having me breathe. Very benign. Can't hurt, even if it doesn't do anything, right?

Well, each time he works on me, I have a very noticeable herxheimer reaction for the next day or three. In fact, often I start feeling it on the drive home from his office (my wife does all the driving these days. I just ride).

While I was just seeing Dr. Diamond, and before I saw Dr. Phillips and got on antibiotics again (details in a minute), I'd feel like crap the first couple of days after seeing him, but then for a few days out of the week I had some of the absolute best days since I became ill. Almost like a normal person. It was great!

So, this was the weekly cycle for a month or so, until our appointment with Dr. Phillips. Dr. P reminds me of a scientist, not taking any assumption at face value, always backing up his views and decisions with hard facts. He's very up to date on the recently published literature regarding various antibiotics and their efficacy with lyme. He's written some papers, too. His treatment regimen is based on facts and statistics, not on how he'd like things to be.

One of the best things I like about Dr. P is that he doesn't think I'm a psych case. Woohoo! Thank goodness for small treats, eh? I used to take for granted that I would be considered sane until proven otherwise. It's funny, the way he structures the interview to go through the symptoms. I bet he knows from experience that lyme patients could go on and on about all the various symptoms, so he asks that I just say whether a symptom is improved, same, or worse. It's funny because my lyme brain gets confused by that. Wait, what were the choices again? Do you mean right now? What about earlier in the week? He's very patient.

So, I think this finally brings me almost up to date on my history, and I'll fill in the current stuff in the normal blog posts.

I'm pleased that I've finally found two wonderful doctors, and I'm very grateful for their help.

2 comments:

GM3 said...


Your posts were very helpful to read and I thank you for that.

I called Dr. Phillips last week and I can't get in to see him till Feb 2018. A year from now. My physician has been looking into to MS, Thyroid, Perimenopause for 3 years. Now it has progressed more into a neuro lyme (brain fog, eye sight decline, neck ache, pins needles in hands/feet, short term memory issues). I am overwhelmed, and have not received any treatment at this point. I feel like I am losing my mind and as a 46 year old mom, that is hard to take.

Joe said...

Dr. Phillips is good, but was unable to help me in the long run. I now see Dr. Amiram Katz, a neurologist in Orange, CT. I strongly recommend him to anyone suffering from Lyme complications.