Monday, September 29, 2008

Weekend update

I saw Dr. Diamond Friday afternoon. As usual, muscle testing showed great weakness when testing both the Mepron and Zithromax together. He uses acupressure, while directing me how to breathe, to adjust for this weakness, and for many other things in my body that the lyme has screwed up. I'm always amazed that this treatment does so much.

I complained to Dr. D of vision problems. The lyme has worsened my vision - everything's a bit blurry, and I now need reading glasses all the time. But these past couple of weeks (can you say Mepron?), it's gotten a lot worse. Now even the reading glasses don't help, and it's tiring to look at anything near or far. He explained, as I suspected, that it's not my eyes. It's neurological - my brain isn't processing the data correctly, or it's not telling my eyes how to focus, not sure which.

I also complained of insomnia and "jangled mind". This is different from the catatonic fadeyness that I get. This is more like constant anxiety, being unable to calmly inhabit my own body. I got this with the tetracycline, and now I'm getting it with the Mepron. It's the worst.

As usual, on the hour-long ride home from Dr. D, I got tired and started to feel "bad". Very lymey. I don't know if this is a herx reaction, or if it's that my body has to use energy to internally process the work that's been done. But it happens every time. I feel bad shortly after leaving his office, and it usually lasts a day or two.

Why go, you ask? Well, I think I'd feel even worse if he wasn't helping my body to be able to handle the side-effects of the medications, as well as partially mitigate my lyme induced ultra sensitivity to chemicals - perfumes, fuel, etc. He also adjusts to help my body dump the toxins from the lyme, and boosts my immune system.

So, Friday night, and Saturday were pretty old-school awful. Back to the old lyme days of less-than-zero energy. Even thinking about things is exhausting. Literally. Also heavy ear-ringing, some body aches, and some fadeyness, where I can hardly speak or move, and light and sound are painful - causing my body shock-like jerks. Fortunately I wasn't too irritable, and the jangled mind abated (thanks Dr. D!).

Late Saturday I took a shower and scrubbed with a stiff brush to get my blood flowing, hoping to dump some toxins. And I was careful to drink a LOT of water throughout the day. The shower completely wore me out - luckily there's a seat in the shower.

After I recovered a bit, I did three very gentle restorative yoga poses. I don't know their names.
  • Lay on back with butt against a wall, and legs up the wall.
  • Sit with hips spread and soles of feet flat together. Then lay back on a bolster or blanket, which is positioned along the spine, and let hips and chest spread.
  • Sitting, bend forward stretching towards feet. I read about putting a rolled up blanket in the crease of my hips to make it easier on the body, but it didn't feel comfortable (perhaps I'm a bit too chubby?)
I can't say these gave me more energy, but they did feel good. I only hoped I had been gentle enough, and that I didn't pay for it the next day.

So, Sunday I awoke with lower back pain. Ugh. I really was gentle, too! But other than that, it was a much better day. I had more energy, my vision was improved, and my mind was clear. Before we get too excited, realize that I didn't do anything that required energy. I mostly sat on the couch, or sat at a table doing a jigsaw puzzle. The puzzle did wear me out after dinner - it wears me out just to sit upright at times. And now all I have is ringing ears, and some light/sound sensitivity.

I have another appointment with Dr. D tomorrow morning. Twice a week seems a bit overkill to me at times. But I"m trying to stay well-adjusted during the Mepron, and additionally I have the stress of my employment situation, and he helps with this.

My employer has been holding my job while I've been disabled - for over a year now. They've been very patient, but can't wait any longer. So, I've discussed this with them, and even though I think it's too soon, I'm going to try returning to work part-time in mid-October. In two weeks. Thinking about yesterday's symptoms - it scares me to think about it. My job is in NYC, which is a 2-1/2 hour commute each way. And my workspace is an open cubicle in a very busy work area, very noisy and well-lit. Not optimum conditions, and that's even before I try to actually do any work. But it seemed better to try this, and maybe limp it along, improving as time goes by. The other option was to lose my job immediately. I figure this may come to pass anyway, but better to have tried? I keep telling myself. On the plus side, it'll be so nice to have an income again.


Thursday, September 25, 2008

Antibiotics again, yay! plus, a vacation!

This is why I love New Hampshire
Well, summer feels like it's ending here in Connecticut, with the leaves just barely starting to turn color, and the nights nice and crisp and full of stars. No more of that humid, hazy air.

Through the month of August, and part of September, Dr. Phillips, my LLMD, had me on a tetracycline regimen. It messes with my stomach just enough that I never feel "right", and when it's time to take meds I inwardly cringe. It feels like there's a stone sitting in the bottom of my stomach all the time.

This was the first salvo in a new battle. Prior to that, I'd had no antibiotic treatment since last October. It felt good to begin actually receiving treatment again. My ex-doctor, the infectious disease guy, assured me absolutely that there was no lyme left in my system. So, why am I herxing like crazy for most of these five weeks?

Yep, feeling like crap .... feels good. I knew that lyme warn't dead. The symptoms were "interesting". I summarized each of the five weeks briefly for the doctor as: bad, worse, horrible, better, worse. Typical lyme roller coaster ride. The horrible week was right after the dosage was increased. This brought out the worst of the neurological symptoms, where my mind is continually unsettled, I pace listlessly, can't think, can't read, can't sleep, and am very irritable. I can only liken it to getting kicked in the groin (for guys). Horrible feeling, but there's absolutely nothing you can do about it, except wait it out. Of course my wait was a bit longer, on the order of a week.

After the tetracycline, I had a week off, to allow my body to return to a baseline condition. Dr. P. calls this "pulse therapy". The idea, as I understand it, is to confuse and break the normal lyme cycle (which I get the impression is around 25-30 days) by using an antibiotic for five weeks. Then some time off, I don't know, to allow the lyme to think it's safe again? To allow my body to gather some energy?

During the week off, I took myself on a tiny vacation. I hadn't been anywhere more than 2 miles from my house in many months, except to go to doctors. So, I planned carefully, and my wife packed me up (she couldn't go, as she had to work).
Big Stewie
I drove a few hours north, via the slow route, no major highways. I spent a few nights in a motel in the mountains of New Hampshire. Usually when I go up there I hike. Um, not this time.

I did take my english bulldog, Stewart, with me. He's great company, has never been on a vacation before, and would otherwise just sit on the pillow at home, waiting for my return. He was much happier coming along, although he was very confused when it looked like we were actually going to live in this motel room. What's going on? There's a flat section of the Appalachian Trail just a couple of miles from the motel, so we went for a 1/4 mile walk twice a day. Good thing about Big Stewie, he gets tired when I do.

I love the foliage and climate in New Hampshire. At least ten degrees cooler than at home, and the air feels cleaner somehow. Birch and balsam strewn across the hillsides.

I returned home feeling somewhat refreshed, and ready for the next medical adventure. Six weeks of a Mepron / azithromycin cocktail. Mepron's not all that bad, really. It looks like yellow poster paint, costs $1100 for 3 weeks (fortunately my insurance covered it), and tastes, well, like medicine. You get used to it. And unlike all the dietary restrictions of the tetracycline, Mepron must be taken with food, preferably a little fat. My doctor is describing how I could add a little fat to my diet, and I cut him off, laughing. I have no problem finding fatty foods to eat. Yum. Sorry, I have to put all this butter on my toast - it's medicinal.

The Mepron (or is it the zith?) does spin me around a bit. Probably the Mepron, as the zith comes in a pill and wouldn't act so quickly. About half the time I take it, within 10 minutes I feel very strange. Spacey. Shakey. The first time I held up my hand, sure that I would see it trembling like a leaf. It was rock steady, but it still felt like it was shaking, along with the rest of my body. Like an energetic imbalance. Also, while my ears have been ringing for almost a solid year now, with little respite, I can hear (feel?) them cranking up when I take the Mepron. And then I get some of my usual fatigue and mental fadey-ness. I console myself with the knowledge that I'm kicking some bug's ass. Take that.

My other favorite doctor, Dr. D., the integrative specialist, uses acupressure, and other indescribable things, to help mitigate the effects of the treatment. I normally see him once a week, but have increased to twice a week during the Mepron.

I've been warned that I might break out in a measles-like rash from the Mepron, but not to worry. And that there's often a delayed flare-up around the third week. Next week. Oh boy, I can't wait.

Life is good. I've had fun putting this blog together this past week. I get periods of lucidity and can really "get stuff done", as long as it doesn't involve getting off the couch.

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.

Saturday, September 20, 2008

What I wish I'd known earlier

Controversial treatment protocols
If you read my (not so) brief history, you'll see that I started out with my local doctor, who referred me to a local infectious disease doctor, etc. Lyme disease diagnosis and treatment is very controversial, with a clear dividing line between two groups.

IDSA
The first group, epitomized by IDSA believe there aren't that many cases of the disease, and that it's always easily, completely curable with a short 3 week course of antibiotics. These doctors state that there is something called post-lyme syndrome. This is the "explanation" for why so many patients don't get better when "logic" says they should. The other rather glib explanation is that the patient may have been re-infected. Unfortunately tests are so unreliable as to make this sometimes difficult to refute. Or finally, that it's all in your head. And in my experience, these doctors offer no treatment for post-lyme, except perhaps anti-depressants (because after all, it's in your head).

Unless you're a lyme specialist, you're likely following these widely published treatment guidelines. The CDC backs this up, as do the major medical journals, and of course the insurance companies (because they end up having to pay less).

ILADS
The second group, epitomized by ILADS, believe there are a staggering number of confirmed cases of the disease, and many more likely unreported or undiagnosed. Further, they believe the disease can be chronic, where treatment is very difficult, and a cure is not at all guaranteed.

They believe that lyme, as a spirochete (I guess pseudo-bacteria is the best word), goes through a life cycle, and that for part of that cycle it transforms into a cystic form. In this form it's almost completely unkillable by antibiotics. The cysts like to lay dormant out of the bloodstream, in the joints and in the brain.

This group also believes that in almost all cases where a person is infected with lyme, they're also infected with something else from the same tick - usually one or more of babesiosis, ehrlichiosis, or bartonella. With the possible exception of ehrlichia, there are no reliable tests for any of these, including lyme.

These doctors state that a 3-4 week antibiotic regimen shows an extremely high failure rate, with most patients never completely getting well, and having continued relapses, usually for years to come. They usually approach this problem by recommending a long-term regimen of antibiotics, sometimes oral, sometimes IV. Often the cocktail is switched up every so often, and the durations of the treatments designed to confuse, or break, lyme's normal lifecycle. I believe the view is that it makes no sense to treat for 3 weeks, sending most of the bacteria into hiding, and then stop just when they're due to morph back into killable spirochetes again.

ILADS consists of lyme specialists. It's my experience that IDSA folks think ILADS is mostly comprised of quacks, irresponsibly following very suspect protocols. It's also my absolutely undeniable personal experience that IDSA is completely misinformed, and is doing a horrible disservice to their patients. Under their care, many patients are undiagnosed, or untreated, or like me, treated initially, and then completely abandoned. I fully believe that with the IDSA treatment protocol, I will never recover.

So, anyway, there's this huge schism, and the patients are caught in the middle. You might ask why the lyme sufferer doesn't just google these facts immediately and go to the correct doctor? Several reasons, in my case.
  • You start off in many cases not knowing what you have, so you see your local GP.
  • Even if you know you have lyme, sometimes 3 weeks of antibiotics, if administered immediately, can do the trick (although there may be evidence to suggest that even this isn't true - that the lyme lies dormant in your body for years).
  • Your local medical community most often won't admit to lack of knowledge, even to themselves, so they'll send you on a wild goose chase, rationally explaining all the reasons why you need a neurologist, rheumatologist, cardiologist, psychiatrist, infectious disease specialist, etc.
  • In my case the IDSA, or otherwise lyme-inexperienced doctors actually told me to avoid ILADS, as they were quacks. Some expressly told me this, most others implied it with their silence.
  • You've got chronic lyme - you don't handle conflict and stress well, and your analytic and decision making skills are shot.
  • Lyme literate doctors very often are quite expensive, don't take insurance, and require a 2-3 month wait to get an appointment, and at this point, you either don't think you're that sick yet, or you do, but you have no income anymore.
Conclusion: If you have lyme, or have reason to suspect you have lyme, run, don't walk, to a respected lyme literate doctor. I truly believe this is the only chance of fully recovering from chronic lyme. Don't wait, don't waste valuable months waiting for your body to overcome post-lyme. You should actively be getting treatment during this time.


Be true to yourself
For me at least, since I got lyme disease, I second-guess every one of my opinions and actions. I'm sure it's to do with the neurological havoc being wreaked by the bugs. But knowing that doesn't really help a lot.

Lyme presents with a vast number of symptoms, some of them ever-shifting. Like today your left knee will hurt quite a lot. Tomorrow, not so much, but your neck, or right elbow, or whatever will be extremely painful. Same thing with the brain stuff. Sometimes I can't think straight, or sleep. Other times I'm just really, really slow, but not jangled up. Other times, I almost seem normal - that is until I try to do the smallest thing, like do a load of laundry, run a short errand, help prepare a meal, etc.

So, not a week goes by that one part of one day I don't say to myself "hmm, see, I could have been working today - why aren't I trying harder to get back to work?" But the gains are very short-lived, and the next day it's all I can do to get breakfast and sit on the sofa all day.

This second-guessing also applies to what the doctors are telling you. So, when you don't feel better, but they tell you just to wait, you don't know what to think. Then they start to look for other causes. Whoa, in my case I'm absolutely certain that I was normal (as anyone can really be called normal), and then got lyme. But for those who didn't get a rash, the diagnosis can be very muddied by the IDSA doctors, tests can be interpreted incorrectly, given improper significance, etc.

And as the patient, you don't know anything with any certainty. And then they start telling you it's all in your head, that you've got psychological problems. That's really hard to fight against, because at this point, they're not really talking directly to you anymore. They don't think you're competent to judge. So catch-22, they say you're crazy, so anything you say to refute is an example of your lunacy.

Conclusion: Do everything you can to keep grounded, remember who you are (were). Don't lose sight of the fact that you have a live bacteria hurting you, even when you can't think straight, when your doctors and even your family don't support you. Some days you'll be lucid. It comes and goes, so while it's there, take advantage of the opportunity to put things in their proper perspective.



Finding a doctor
When looking for a lyme literate doctor in your general area (you may have to be willing to travel a bit), get recommendations if at all possible. You may be able to get some from lymenet.org.

I had about 4-5 names recommended by various people - home health nurses, friends whose friends had lyme, etc. (I live in Connecticut, so lymies aren't hard to find). A couple of these didn't "feel right" when calling to ask about appointments, treatment options, etc. Of the remaining three, we made appointments with two, several months in advance.

Neither doctor took insurance, but we could apply the bill to our out-of-network 70% of allowable with our insurance company. After our $1000 out-of-network deductible had been met. As you might expect, the allowable sometimes isn't very much compared to the cost, so we ended up paying a lot of all this ourselves.

We first went to see Dr. Raxlen, in New York City. He charged us $900 for the initial visit, plus another $1200 or so for lab work from some specialist labs - Igenex and Fry. He listened, and suggested a second neuropsych test from a lyme literate tester, among other things. We were all set to follow his advice, and undergo his course of treatment. We called to schedule the neuropsych test and it was $5500, and only $250 was covered by insurance!

So, we called Dr. Raxlen's office and left a message for someone to discuss other options, better explain the need for this, etc. It's now several months, about 5 phone calls, and 3 emails later, and we've not received any response whatsoever. We ended up getting copies of the expensive labs directly from the labs themselves, as we couldn't even get copies from Raxlen's office, even after we'd paid for them fully in advance. He just took our money and gave us no support at all. Not very reassuring, to say the least.

We were then lucky enough to hook up with Dr. Steven Phillips in Wilton, CT. Still quite expensive at $600 per hour, and takes no insurance. But he's been treating me for almost 8 weeks now, and it appears to be going well. And what's more, he's knowledgeable, sensible, practical, and responsive.

Conclusion: Not all lyme specialists are created equal. Be prepared to throw one out, even after careful screening.



Tread carefully with disability
I have long-term disability insurance through my (ex?) employer. But I think this applies to Social Security Disability as well.

My disability insurance paid out for a few months, and then they denied all future payments. We're appealing, but I believe there were a couple of key avoidable issues that caused the denial.
  • My original diagnosis and treatment by the infectious disease doctor, and subsequently being told to just wait for the post-lyme to resolve, caused it to appear to the insurance company that I wasn't pursuing any course of treatment. I wasn't, but only because I was told there was none, except time. It would have been difficult to handle this otherwise, as the ID doctor probably wouldn't have written a letter stating I was to do nothing. He would have referred me to a psychiatrist for anti-depressants, and perhaps that doctor could have written the appropriate letter. But since that treatment didn't make any sense, as it didn't address the lyme, I didn't pursue it. So, I didn't do what they said, and I didn't look busy enough.
  • I underwent a neuropsych test, partly to rule out other problems, like alzheimer's, and partly to prove the lyme case. The problem is that NP tests don't score lyme accurately, as they trigger a result of psychosomatic (all in your head) when encountering all the various lyme symptoms. So it's an invalid test for a lyme patient. Avoid it. The end result was that the NP test found me to be very high functioning, apart from the hypochondria (sigh), and no reason I couldn't get back to work. I specifically asked the doctors if the test would score accurately if I didn't have an episode during the test, and they assured me it was very sophisticated. Rubbish. So, by following the not-lyme-literate approach, and looking for all kinds of other imaginary causes, meaningless tests were performed. But their (meaningless) results go into the medical history, are presented to the insurance company, and are considered significant, especially if it's in the insurance company's favor.
Conclusion: The lyme literate approach early on would have eliminated both of these issues. I would have been undergoing constant treatment, not just "waiting". I wouldn't have had to submit to things like anti-depressants or psychotherapy which didn't address the root cause. And my current lyme literate doctor either wouldn't have scheduled a NP test in the first place, or if persuaded to, perhaps by the insurance company, would have used a (cheaper) lyme literate NP tester.


It's much more difficult to appeal and get back something that's been taken away, than it is to just act in such a way as to not lose it in the first place. And while the priority should be to get well, practicality forces us to deal with insurance companies and the fact of no income.

Proper testing
I've heard some folks say that the first thing they wished they had done differently was to get proper, specialized blood tests. Like the ones Dr. Raxlen ordered for me. But this may not be as important as one might think.

Dr. Phillips largely ignores those tests. He knows I have lyme because I had a rash, and because he recognizes all my symptoms. Sure the tests confirm it, but if they didn't (as they often don't), he would act no differently. Similarly, while I tested positive for babesia, there are 14 known strains of babesia, and it's only possible to test for one strain! So, a negative result doesn't mean a darn thing. So he treats as if the patient has babesia as well, which they very likely do.

I think in general, some LLMDs advocate testing play a purely confirmatory role. Primary diagnosis is clinical observation, and treatment is continued until some time (6 weeks or more - remember the lyme life cycle) after the patient appears completely healthy again.

Conclusion: Lots of expensive testing may not really matter. We'd like to be able to prove things conclusively, but with lyme and related infections we cannot yet do that.



Alternative medicine
I've always been skeptical of, or should I say analytical and cautiously open to, alternative healing, such as homeopathy, muscle testing, acupunture, reiki, etc. I'm actually extremely open to most of this, but I don't believe that most of the practitioners can do it effectively. After my recent experiences, I suspect that certain people have the ability - not a gift perhaps, something trainable. But they could probably use any technique as a vehicle and provide real benefit.

Conclusion: Seek out someone that can truly heal. While I'm going the antibiotic route for the lyme, my holistic doctor, Dr. Sean Diamond, DC, really helps me a lot. He is able to help minimize side effects from the many nasty drugs I take, as well as generally supporting the body functions so they're able to heal on their own, and ultimately what he does makes me feel better.


While everyone will have different needs and experiences, I hope some of this first-hand, learned-the-hard-way personal knowledge may help someone.

I'm very grateful that I've finally found doctors that can help. The world seems full of possibilities again.

Getting better, or going crazy?

Back to: All better now? Um, no

December 2007

Well, the end of November left us with a pretty dismal outlook. And to top it off, my short-term disability had run out, and there was a waiting period before long-term would start covering. And I remember one of my doctors warning me at that time that trying to get long-term disability was difficult - implying that you had to be much more sick than I was. Implying that I should just "get over it".

So, I decided to go back to work part-time, working from home. After the second or third day I knew it wasn't going to work, but I was afraid to admit it to myself and others. Due to the effort to concentrate and think about complex projects at work, my head was spinning. Ears ringing loudly, constantly. Fadey episodes every day. All day long being half-faded, which is sort of like being drunk.

I was able to limp it along for a couple of weeks, but then I finally gave up and told my employer and doctors, and insurance company that I needed to go on full-time disability. I remember thinking even then, that I'd know when I was ready, and it'd probably be a month or so. Wrong.

I remember latching onto anything positive, rationalizing that I was getting better. Hey, I was just following doctor's orders. I was real sick, and none of my doctors would treat me, and they all thought it was in my head at this point. So I just kept thinking that perhaps the first ID doc was right. Even though I didn't like his attitude, perhaps I do just have to wait, and if so, it makes no sense to thrash around wasting money I don't have, and ruining my quality of life to try and fix something that can't be fixed. Right? Does this make any sense?

Then I remember Christmas. Now the holidays are always a little stressful. No problem. My wife, our sons, and I went to my father's house to celebrate and have dinner. My father has a very loud household - it's just the way they are. Not my cup of tea, but I tolerate it. Usually. This time, I can literally feel my brains leaving me within 1 minute of walking in the door. I'm smiling stiffly, trying frantically to hold it together. My wife, who is always watching me these days, notices. She says quietly "are you alright?" It's all I can do to give my head a tiny nod in the negative. I can't speak at all. Can hardly move.

I end up spending Christmas upstairs, sitting in a chair staring at the wall, kind of scared, crying occasionally. OK, I guess really scared. And wanting my life back.

January 2008

I started writing this post with a title of "Minor improvement". But as I got into it, I realized there wasn't any.

Usually every January a few fathers and sons of our old Boy Scout Troop go and stay in a cabin in New Hampshire for a weekend, and ski, snowboard, or just drink a couple of beers in the lounge. The boys are all grown, but we can usually all still find the time, and it's great fun. This year my son wasn't around, as he'd gone down to North Carolina to hang out with some friends from college. I really wanted to go, but I didn't, realizing that I couldn't handle the trip in the car, even though my friends had offered to drive me. And it would be too many people, too much input. But it made me feel sad to miss it.

Not too much "medical" happened in January, since I was "waiting to get better". By now, I was kind of bored, but I could hardly read anything, and I didn't feel it was safe to drive, unless for a very short distance to walk my dog. Fortunately I have a bulldog. Among other endearing traits, he only needs a small walk each day to feel happy. I could barely handle that, and then come home and collapse.

I had to see my GP to have him fill out the form so I could get disability. This is the doc that I first went to for a second opinion after I got lyme. This was one of the only doctor visits I went to on my own. I think my wife was working, and I probably said I could handle it, which of course was over-ambitious. I was a bit faded by the time I got to the office. Then, and I can't figure out if it's his nature, or if he was testing me, but the doc proceeded to obstinately argue with me. Which caused stress, and a quick spiral down into hardly being able to put two words together.

I really only came so he could fill out the form, as my biggest stressor at this point is having no income. He's telling me that he doesn't see that I'm doing that poorly. I'm shocked. I get fairly intense as I ask him if he can't see that I can hardly think, or speak!? And he then says, sure, but he didn't know me before I had lyme, so as far as he knows this could be my normal state.

This must be a bad dream, and could I please wake up?

He signed the damn form, I got disability, and I never go to this doctor alone. In fact I avoid him if at all possible. But he mentioned that I should see another neurologist, and undergo a neuropsych exam. When he does allow that I may be sick, he constantly looks for anything else but lyme, because he believes that there's no way lyme could be causing all of this. He thinks I either have alzheimer's or it's psychosomatic.

February 2008

I remember two significant things that happened in February. We had a very stressful family situation to resolve, which involved traveling to Virginia for a few days. We stayed in a motel, and I remember not even being able to go into a restaurant, because of the light, sound and smells (yes, I have also become super-sensitive to smells - I could be a drug-sniffing dog). So I just waited in the room and my wife would go next door and get take-out.

The other thing was that I had the neuropsych test. It involves several hours of questions, some verbal, some multiple choice on a computer. The multiple choice questions gave me an uncomfortable feeling, as if I was being herded. For example, "When I get upset I am most likely to: a) harm myself, or b) harm others." That's it. There's no "c" choice. I think there were over 500 of these little things.

The expert's interpretation of the test was that I don't have alzheimer's. Good, we knew that. And that I am very high functioning, and there seems to be nothing wrong with me, except that I'm a hypochondriac with all these psychosomatic conditions. That there is obviously a history of long-standing psychological problems. The doctor recommended anti-depressants.

Nope, not a bad dream. So now I have to convince people that I really used to be normal. But how?

I resisted the idea of anti-depressants. I'd heard many bad things about them, and that it took lots of tinkering to get the right drug, and the correct dosage. I didn't like the idea of these doctors poking blindly, hoping something would work. And for what? No one could explain to me how it was going to address the lyme. At most, it would cover some symptoms. Everyone was telling me I was depressed. I guess so, a bit. But not severely. I didn't think of death, or stuff like that. I wasn't sure, but I was still hoping, cautiously optimistic, that I was getting better, albeit it at a glacial pace.

Next up: Eventually a new direction

All better now? Um, no

Back to: Poking, prodding, and hard drugs

November 2007

It was actually late October when I finished 3 weeks of Rocephin. I was no better, and in some ways worse. The ID doc was ready to pull the PICC line. My wife and I explained how I was no better, and we had read of longer term courses of antibiotics being effective.

Please, sir, could we have some more?

No.

The doctor got very smug and superior, and eventually angry, as he explained that:
  • All the lyme was 100% gone from my system.
  • I now had something called "post-lyme syndrome", which is my own immune system overreacting because it still thinks it's fighting non-existent lyme. (Do I make this sound nuts enough? Total fantasy is what it is.)
  • Any more antibiotics through the PICC line would actually risk my life!
  • I now just have to be patient, and wait anywhere from 3 to 18 months (!), and the mental function is the last thing to come back.
Finally he relented, and prescribed just one more week of Rocephin, but was adamant that that was all we were going to get from him. In the same breath, he very smugly told us that the so-called lyme literate doctors out there are all quacks, and we should avoid them. That we'd be better off using the money for a massage.

We asked if there was anything else we could do, and he mentioned magnet therapy, acupuncture, and anti-depressants.

So, we went in search of another doctor. We got an appointment with Dr. Steven Phillips, a well-respected lyme literate doctor in southwest CT, but it was a couple months out, and it wasn't covered by insurance, and cost $625 for the initial visit. Oh, I wish I'd listened to my wife and kept that appointment.

We ended up with another ID doctor, who listened and decided I could have a few more weeks of antibiotics. She didn't want to continue the Rocephin, and prescribed Claforan aka cefotaxime. Like Rocephin, it was also pushed through the IV, except three times per day instead of one.

The first dose was administered by the home health nurse, and I had my normal reaction (which isn't really normal). But the second dose 8 hours later didn't go too well. I started having very loud ringing in my ears, which has persisted to today - sometimes quieter, but always there. I never had that before.

My brain was very jangled - I couldn't think straight, couldn't even calmly sit. I was hallucinating and very agitated, and my heart was pounding very heavily, and I had a very difficult time getting to sleep. A thoroughly awful feeling. On top of that, with the third dose I got a horrible migraine. I've only had one migraine before, induced by caffeine in coffee. You might ask, "are you sure it's a migraine?" If you wonder if you have one, you don't. If you do have one, it's extremely obvious. I remember ultra-slowly getting out of bed in the middle of the night, so as not to jar my head at all, and went into the kitchen to get a bit of bread to chew on to combat the nausea from the headache. I couldn't chew, as it hurt my head so much. Crazy.

After the third dose, we discontinued it. When we called the doctor she didn't want anything to do with me, as I "obviously" was allergic, and she couldn't even give me penicillin because it could kill me. I asked if I couldn't just go back on the Rocephin, which is all I ever wanted, and she said no, that I was probably allergic to that now as well. The only course she recommended was getting admitted into the hospital and undergoing a course of penicillin there. I said OK, let's do it, and she, the Infectious Disease specialist, said she wouldn't want to be involved. That I should be under the care of an allergist. Man, talk about passing the buck.

Hmmm.

So, we went to an allergist. We didn't bother testing the Claforan. I did have a very minor skin reaction to the Rocephin, but I still suspect I'm no more "allergic" than I ever was. Apparently it's near impossible to test for penicillin, as the serum is no longer produced.

We didn't know what to do next, and I was still extremely ill. After days of trying, we finally got the ID doctor to call us back, and she spent 10 minutes yelling at me, and refusing to treat me.

I scheduled the PICC line removal, and we settled in to wait 3 - 18 months, because we didn't know what else to do.

Around this time we also saw a neurologist, recommended by this second ID doctor. I was at the time under the illusion that if I did what she recommended, that she might treat me. So, the neurologist listens a bit, and doesn't say anything conclusive, except that he'd like me to get a SPECT scan, as it might show a particular lyme signature. I don't know why we did this, because we already knew I had lyme. In fact my wife pushed back, but in the end we did it.

According to the neurologist, the results were inconclusive. Some left parietal hypoperfusion (which I've later learned is very conclusive of lyme). That's all he told us. We had the report sent to the GP, as he was coordinating our care, sort of. So, he calls us in to discuss this. And he shows us the report, against the neurologist's wishes. It says "POSSIBLE INDICATION OF EARLY ONSET ALZHEIMER'S." I remember it in all caps, the letters flashing. Ooof. So, the GP is very, very concerned about this. But we called the neurologist and he said the reason he didn't tell us is because he doesn't believe it was read correctly, and that there is no indication of alzheimer's.

Next up: Getting better, or going crazy?

Poking, prodding, and hard drugs

Back to: If I only had a brain

September 2007, continued...

Next began what to me seemed like an endless round of awfulness. Hospitals, tests, pain. First came the spinal tap. Now perhaps it usually hurts a bit, and the lyme magnified it. Or perhaps it ALWAYS hurts like hell. Never had one before, hope to never again. It felt like someone was sticking a meat thermometer in my spine.

A few days later the test came back positive. This is interesting in retrospect for two reasons. First, perhaps it was denial, but I wasn't sure it'd be positive. This result was at once a validation, that I had a reason for feeling this bad, and a kick in the gut. Serious, chronic illness wasn't something I'd ever experienced. It was something that happened to other people.

Second interesting point: I found out much later that lyme (in it's spirochete form, which is the only form that shows on tests) very rarely shows up in the spinal fluid. So while a positive test is for sure, a negative test was much more likely, and would have really hurt my diagnosis at that point, as it's often viewed incorrectly as a valid negative. You'd think that the bulls-eye rash and the symptoms would be enough for doctors to be satisfied it's lyme, but I haven't found that to be the case, unfortunately, as I'll describe in a bit.

Next was the visit to the ID doc. He says, yep, I've got lyme in the brain, and he orders a PICC line inserted in my arm, up into my chest. And through that line, we'll push a 3 week course of IV Rocephin, which he called the "gold standard" when treating neurological lyme. He was extremely self-assured, sees this sort of thing all the time. Don't worry, you'll be fixed right up in no time.

Next, a trip to the hospital to have the nasty PICC line inserted, which involves pushing a very thin plastic tube all the way from the inside of the upper arm, into the chest just above the heart. It's done by using a very thin wire, pushing the whole mess up there, and pulling the wire back out.

Before the procedure, the nurse is chatty, trying to put me at ease. I'm very faded, and I haltingly manage to find the words to tell her the nature of my symptoms, and that I might become totally unresponsive, but not to worry too much, as it happens all the time these days. I don't think she felt reassured, and frankly neither did I.

What was supposed to be a 15 minute procedure took a whole lot longer. They tried for 45 minutes to get the line in my right arm, pushing and yanking, which didn't feel good at all, beside the fact that according to the doctor, there are no nerves in veins, so I couldn't feel a thing. Sure, but it's still not a nice feeling.

Eventually they gave up because the veins branched, and weren't big enough. They decided to try the other arm, which required a whole round of re-sterilization, and turning me around on the table. This arm worked out OK, but I left there feeling pretty beat up, and quite sore.

My wife was taking me to all these doctors and hospitals, and in fact completely taking charge of my life, my care. And a good thing, too. She literally lead me by the hand from the car to a chair, and then do all the paperwork, and talk to the doctor, because I couldn't express myself very well, and I'd forget everything they told me, and I couldn't figure out how to write notes, either.

Around this time my wife and I started the little ritual of stopping at Starbucks on the way home from a medical visit (she'd go in while I waited in the car). I joked that I deserved it because I lived through it. A nice little treat.

October 2007

Later that day we had our first visit from the home health nurse to set up the IV. The drug is "pushed" over a couple of minutes into the line. The idea is that the patient, once taught, can do it themselves, and the nurse comes by once a week to change the dressing. There's a lot of attention to sterility, as infection of the line can be catastrophic with my immune system low because of the disease and the antibiotics.

Luckily I have my wife to help me with all this, because there was absolutely no way I could manage the PICC. My dexterity was non-existent, I couldn't remember simple instructions, and I was very likely to inadvertently shove a syringe full of air without realizing it.

I've never quite figured this out, and neither have the doctors, but the administration of the drug, or even just of saline to flush the line, caused me to have what I fondly call "fadey episodes". I think I had them before the Rocephin, but didn't really differentiate them apart from all the other symptoms.

Anyway, my wife would make me talk to her while she was pushing the saline and the drug. Usually within a couple of seconds of pushing even just the saline to flush the line, I'd go from my not-so-normal state to what feels like autism, or catatonia (not that I'd really know). Depressed respiration - didn't feel like breathing. IQ cut by half. Brain processing ultra slow motion. I always droop my jaw and stare down and to the right, sometimes drooling a bit. Speech is difficult or impossible.

I'm aware this is all happening, and it doesn't hurt or anything, but there's nothing I can do about it. Sensory input is on overload, with no ability to filter, and the air appears to be filled with "static". My wife would push the drug over 20 minutes so as to lessen this effect, and we'd sometimes watch television together. Sometimes I'd lose the ability to tell the difference between the people on TV and the people in the room. If anything unusual happened, like the sound of someone setting a pencil down on the table, I'd jump out of my skin.

This happened every single time we administered the drug, as well as most of the times I'd encounter any (even very minor) mental, emotional, or physical stress, like being in a loud, or well-lit, room, or hearing two conversations at once. This has abated somewhat now (though it just happened the other day), but was still a daily occurrence until July 2008.

When we told the ID doc we were concerned about this, he said categorically it was impossible for this to happen, and strongly implied it was in my head - that I was just anxious. Well OK, then. In retrospect, this was the beginning of a situation that came to be as bad as the lyme itself. Doctors stopped listening to me as a rational person. I was being told it was all in my head.

During this time I also had an MRI, to rule out something besides lyme. Nothing was found. The doctor (the second GP) was being thorough, but it was the beginning of a disturbing trend, this looking for other causes. I got bit by a tick (thank goodness for the rash, or the docs wouldn't believe I had lyme at all!), and I got sick. Before that I was perfectly healthy and normal. And now I know that I don't like MRIs either, at least of the brain. I never knew I was claustrophobic. And all that banging of the magnets. Quality of life really goes down the toilet when your life gets usurped by the medical "system".

Random musing: What is it about doctors, is it their personalities, or the way they're taught? Yes, we look to them for answers. But it seems that so many doctors, if they have no idea what's wrong, won't tell you anything like that, even if it means a huge fallacious jump to assume it must be all in the patient's head. And this is SO damaging, causing the patient (me) to begin doubting and second-guessing my own feelings. I'll re-watch One Flew Over the Cuckoo's Nest with new eyes.

Next up: All better now? Um, no

If I only had a brain

Back to: The beginning

September 2007

The month opened with me trying to schedule an appointment for a second opinion with my wife's GP. He's a very thorough doc that she'd been seeing for a few years and had a lot of confidence in. My wife was out of town, so I called the office and introduced myself and asked for an appointment. They very nicely told me that I could have one late next week.

Enter irrational rage. I was so mean on the phone - didn't these people understand? This is urgent! Having been there and mostly back, I realize now that I probably was making very little sense - having trouble speaking, vocabulary was about 30% of normal, etc. Finally the receptionist evenly asked "Do you want the appointment or not?" I replied nastily, "Sure, but I won't keep it." and slammed down the phone. Whaaaa? Who is this person? You'd think maybe I had rabies, not lyme.

Looking back at my calendar of that next week, I see that I was still trying to work. I work with software and computers, as well as with diverse other teams that don't always agree on things. So there can be a lot of tension at times. In retrospect, I believe I was probably very unprofessional that week, irrational, not articulating well, irritable, and starting to forget things. I was forgetting the layout of systems that I had personally designed only a couple of months earlier. I often couldn't figure out how to login to things. Even when I'd try and step my way through something, leaving placeholders, scrawling little notes that I then would lose, the next day I'd realize that while I succeeded in those steps, painful as it was .... it was the wrong steps. The whole strategy was flawed. What little awareness I did have of what was going on was scaring the hell out of me.

I was given directions to this doctor's office, and I drove myself there - about 1/2 hour away. I'm very good with directions and spatial orientation. I can always find my way.

Not that day. I drove right by the place a DOZEN times, each time getting more frazzled. Once I had to actually pull over because of a murderous road rage that overtook me, spurred by some imagined slight by another driver. Foaming at the mouth angry. Another time I pulled over and completely broke down sobbing. Oh boy.

I couldn't fill out the forms in the doc's office - no energy to write (huh?). Or to think. I can't imagine what I looked like staggering in there, barely coherent. I tried to explain my symptoms, but they were so many, and so unlikely (I thought), and I was SO tired, and I couldn't find words for anything, and just talking completely wore me out.

So the doc said I very likely had a manifestation of lyme in the central nervous system - in the brain. Oh no, that's the nasty neuro-lyme I'd read about. He ordered a spinal tap, and referred me to an infectious disease specialist.

A day later I called work to find out about short-term disability, and asked them to repeat information several times before I could get it written down in a hardly legible scrawl. Even then I remember asking if they could email all the information to my wife, as I was likely to forget it all.

I haven't worked since then, and as I write this it's a little over a year.

By this time I was beginning to get pretty worried. Not only did I feel like crap, I was so tired and confused all the time, and prone to emotional outbursts. It was only with difficulty that I could see all the neurological symptoms for what they were. I guess thinking about your damaged brain is like trying to see your own eyes, or something like that.

Here I was, the primary wage earner in our family, completely unable to work, and I couldn't even think clearly enough to know what to do next. Luckily income wasn't a problem in the near term, as short-term disability kicked in. I remember thinking "I'll just take a couple of weeks off until I figure this out." Right.

At this point, I could barely do one thing at a time, and then only very slowly, with deliberate concentration. My brain would just freeze when confronted with complexity, or multiple inputs, like someone talking to me while a television was playing nearby. My wife would ask me if I wanted chicken, beef, or fish for dinner. I would freeze puzzling out the answer, and finally I'd dazedly reply "I dunno". She'd push a bit for more information, and I'd snap "I don't have any idea. I don't know, and I can't know." Whew. Did I mention my wife is a saint?

Additionally, at this time I started walking with a shuffling, limping gait, and would continually bump into door jambs, bite my cheek or lip when chewing, and cut myself when trying to use a kitchen knife for a simple task. I'd find myself standing in the hall, having started to walk from the living room into the bedroom, and had gotten "stalled". I'd have to think how to will my foot to move to get going again. All in slow motion.

I had constant numbness in parts of my hands and feet, and most of the time I had head, neck, or these big slab-like back aches, and I could barely use my hands, as my thumb joints were so sore.

My vision worsened, things were blurry, seeing double. My eyes would tire very quickly, as if my brain was unable to tell the eyes how to focus correctly. I started using reading glasses all the time, where previously I rarely used them. But I'd usually find myself reading the same sentence over and over, trying to keep my place on the page, and trying to remember the context. Eventually I'd just give up, exhausted.

Next up: Poking, prodding, and hard drugs

The beginning

What follows is a summary of what's happened so far. I'll try to keep it updated, so this can be the one place to see my path through the lyme labyrinth. (It feels like the Family Circus cartoon, where you see the dashed line that little Billy makes as he goes from point A to point B: over a wall, under a bush, around some trash cans, up a tree, ...)

July 2007

Camped out on July 4th in known tick-infested area along the Appalachian Trail in Connecticut.

Around 2 weeks later started feeling like I had the flu, but without the fever. Just felt like crap, very tired. "Must be getting old".

Also around this time I noticed a "heat rash" or chafing on the skin of chest and arm, near the pit. Thought perhaps it was the heat.

Next, one whole day I could hardly do anything because of the unexplained pain in the front part of the shoulder of that same arm. Felt like a rotator cuff injury, or a toothache. Very bad. Unfortunately, this pain didn't cause me to raise my arm and have a closer look at the rash...

The day after, it didn't hurt at all, and never did again. Hmmm. But gee whiz, I have these other aches now, each day in a different part of my body. What the heck?

Near the last day of July, I had my shirt off, and was in the bathroom in front of the mirror. "Heat rash" still there. I raised my arm. Uh oh. The heat rash was just the edge of the best looking lyme bulls-eye rash you ever saw, with the tick bite right in the center, exactly where I'd felt the shoulder pain.

I now knew I had lyme, but believe it or not, I still didn't put it together with the way I'd been feeling all month. When my family reminded me that those things were probably connected, it all fell into place.

The next day I bullied my way into an appointment with my GP. I simply raised my arm and he prescribed 3 weeks of oral doxycycline. No worries, it'll be all better, a minor inconvenience, nothing more.

August 2007

Once on the doxy I started feeling better within a couple of days. And I had plans. Lyme was an inconvenience, and I just pushed my way through my normal schedule, including a couple of day trips to a large outdoor music festival, and all the walking and standing in the hot sun that entailed. I just made sure to wear a hat and lightweight long sleeves, because doxy and sun don't mix.

Within two weeks on the doxy I was feeling much worse. I'd been told about herxheimer reactions, and though I didn't really understand, or believe it, I guessed that was all it was, and a good thing, too, since it meant the antibiotics were working.

Next week, back to the doc. Doxy all gone, and I feel much, much worse. Not only the complete wiped-out fatigue, but the daily act of living just seemed to be getting way more difficult, though I couldn't pin down details. In fact, I couldn't think very clearly at all, but didn't realize it yet.

The doc, a GP who I'd been to for years, and have (had?) respect for, said he'd give me 3 weeks of amoxicillin, but that I didn't really need it - it was "just in case". I was pretty doubtful, but he said I'd feel all better in a week or so. No worries.

I only took two weeks of the amoxicillin, as it wasn't doing diddly squat. I went back to the doc and he said there's nothing more to be done, I'm cured. It's just that certain people sometimes still feel tired for a month or more afterwards. Go home, and don't bother me anymore with this. OK, that last part I made up, but that was the vibe.

Next up: If I only had a brain