Wednesday, December 31, 2008

Feeling better

Liver enzymes AST (blue), ALT (red). Normal for each is around 40-50. Yellow marks start and stop of Buhner herbs.

See the yellow markers on the chart. They mark the start and abrupt stop of the Buhner herbs. Or do they mark the start, and peak of the liver problems? Right. Same thing. Even though everyone, even my LLMD, doesn't think the Buhner herbs are a likely culprit, it sure darn looks like it to me.

I've been feeling pretty good the past few days. I've had enough energy to walk the dog, even in snow, and to give him a bath. I even shoveled a little snow today. Some aches and occasional fatigue, but the neuro issues are quiet for a change.

The chart shows just how much my liver enzymes got out of whack, and when. As you can see, they're improving greatly. I'm getting my blood tested a couple times per week now, so I'll have more data soon.

The AST (blue) is back where it should be - around 40. The ALT is still high, at 185, but it's down a lot from the high of 549 the week before Christmas. In a healthy person, it should be below 40, but mine has been between 80 and 110 since last summer, and was 65 in spring of 2007. That's before I got bit, but we're still not ruling out that I've had an earlier case of lyme that was less symptomatic.

So, hopefully the trend will continue. I'm still only taking the minimum of supplements. And no toxins. Which means zero alcohol. I don't drink very much - I enjoy 1/2 of a tiny juice glass of red wine in the evening (about 2 oz.), and the occasional Mai Tai. But not these days. Oh well, pretty soon I can get drunk on a regular basis again. Kidding.

Well, it's nice and quiet around here - we got 6 inches of snow today. We usually go to a nice Chinese restaurant on New Year's Eve, but this year we just did take out last night. My wife isn't feeling well (head cold), so we're just hanging out at home tonight. Nice fire in the fireplace, twinkling Christmas tree, and Wall-E on DVD.

I can't say I'm sad to see the backside of 2008. It would have been a difficult year even if I was healthy. Here's to 2009!

Tuesday, December 23, 2008

One step forward, two back?

OK, time for an update. To recap, I stopped the tetracycline and diflucan on December 3rd, due to unacceptable liver enzymes (ALT 300+), but I remained on the slow ramp up of Buhner herbs, and added some good liver herbs as well.

Liver function
The liver enzymes kept climbing, even off the meds. They topped out a few days ago at AST 195, ALT 540. This is very worrisome considering the "high threshold" for each is around 40. I'm getting my blood tested now twice a week, and a few extra times thrown in. Fortunately my LLMD has been right on top of this, calling me very soon after each test, and discussing possible causes and options.

Problem is, at this point, we're just not sure why the liver is acting this way. I had an abdominal ultrasound a couple of days ago, and it showed nothing abnormal, so no Fatty Liver disease, or anything like that.

I'm starting to notice one of the effects of the liver damage: clotting. Normally when I have blood drawn, there's no bleeding whatsoever afterwards. Now, I have to hold the bit of gauze against the pricked spot for a few minutes to get it to stop bleeding. This is hard to just ignore.

We (me and my LLMD - the blind man and the expert) are hypothesizing that somehow it's the herbs that are messing things up. So, after that last very high reading, I stopped most supplements (and I'm still off all meds), except for Milk Thistle, N Acetyl Cysteine, Flax Oil, Flax Meal, and Probiotic. Within 24 hours of this, the liver AST/ALT dropped from 195/540 to 101/427. Still very high, but quite a drop in one day off the Buhner herbs.

I've been searching the internet, and re-reading Healing Lyme, and there's no mention of these herbs stressing the liver. In fact, the opposite. Can't figure it out, but for now I'll continue on this minimal regimen, testing the blood twice a week. Hopefully there will be a significant, steady downward trend.

I'm seeing a gastroenterologist (liver doc) in early January. Hopefully he'll be able to rule out any other liver issues. If so, we're left with the Buhner herbs, if readings trend down, and if not, perhaps it's the lyme itself. If the latter case, then my LLMD is considering liver-friendly options, such as Ceftin paired with Biaxin. All I know about these at this point is that they're oral abx.

General Symptoms
My symptom chart is still all over the place, up and down. I had a 5 day stretch where I felt pretty good, and I went for a tiny hike one day. Only about 3/4 of a mile, with slight elevation gain. I dressed in my hiking shorts, etc., and used my trekking poles, so it would feel more like a hike than just meandering through the woods. I set a reasonable pace, and it was quite enjoyable. I found myself thinking that I'd do this again tomorrow.

I really should know better by now. The next couple of days I didn't feel so good. Hike-related? Who knows. Perhaps I was just due, as I can't remember the last time I had 5 good days in a row.

Today was a good day, and I'm thinking I should go for another little hike tomorrow. Not sure if I will, though. First, now we have a foot of snow on the ground, which makes walking much more strenuous. And then there's that liver thing. I'm avoiding all toxins, like pain killers and even the smallest amount of alcohol, and I don't want to do anything else to stress it. Do livers get tired from walking?

Oh, one more reason to wait. I don't really need a hike to be followed by the usual few days of extra-extra neuro symptoms just in time for Christmas. My family deserves a break.

So, I guess for now it's just a waiting game, trying to eat fairly well, etc. Eventually I'd like to get back on some meds, but even then it'll require constant monitoring. And if that goes well, perhaps at some point I'll be able to add one Buhner herb back in, perhaps Andrographis. Ramp that up, and see if there are issues.

I'm not sure I'll ever be able to tell precisely what happened here, but I'd be happy if I could eventually get back on the Buhner protocol, even at 1/2 dose.

There, all said. Now I can forget all about this stuff and enjoy the holiday.

Merry Christmas.

Thursday, December 11, 2008


I could open an herbal pharmacy

I've stopped trying to fill pill boxes a week in advance. There's just too many pills. Instead I fill three of these little glass bowls each morning. There's currently about 26 pills in each (though a few stay in the refrigerator until needed). The 78 pills altogether, along with the eleuthero tincture (above center), and the flax meal (above rear), and the lemons juiced into water, comprise one day's supplements. This doesn't include any actual medication from my LLMD.

Just thought it might be interesting to some folks.

Wednesday, December 10, 2008

Still waitin' on the liver

A week has passed, another blood test, and the liver enzymes have come down a little, but are still very high. And so we wait. No more meds yet. Appointment with the LLMD in a couple weeks. Hopefully by then things will have returned to safe operating levels.

I added milk thistle, dandelion root, and n-acetyl cysteine to my diet, and drank extra water, and juiced a lemon each day over the past week. I plan to continue this, even after the liver enzymes come down, as the readings have never been optimal during this whole lyme experience.

The first couple of days off the meds were pretty nasty, but the past five days have been almost completely symptom free. That's an amazing run. Oh, I still have the ear ringing (will that ever go away?), and I haven't done a whole lot, but I have energy, my thoughts are positive, I don't need the reading glasses, very few aches and pains. I feel smarter, and more adaptive. I'm still challenged by noisy environments, and chemicals (like perfume and deodorant for instance). If this keeps up, I may start to forget that I have lyme!

Oh, for anyone keeping score at home, I didn't increase my Buhner protocol dosages this week. I kept it at the 4/5ths level of last week. With the liver herbs, it's 26 pills 3 times daily. I don't feel like making it 4 times daily. Just too much on the stomach, and I've been having some digestive / bowel issues that I suspect are related to all these herbs. But hey, that's why the dosage is ramped up slowly! If I never go past this dosage level, I'll be fine. If things settle down a bit, I may try to go to the full dose at some point, but not for now.

I still only take a small portion of the eleuthero, compared to Buhner's recommendation. Otherwise, too jittery.

It's supposed to be sleety rain all day tomorrow, but I may try to go for a short hike. Yep, exercise. Everyone else is doin' it :) And besides, feeling this good is boring just hanging around the house.

I had to laugh last night. We watch the TV show House, about a doctor who specializes in diagnosing mysterious illnesses. Many times over the past year it's been very odd. If I'm having an MRI that week, the patient almost dies in one on TV. If I'm having a spinal tap, the poor TV patient needs one every few hours. If I'm having a colonoscopy, the patient also needs one, but in their case, for some reason, they can't have a sedative, so I see their legs twitching with the pain. If my brain is acting up, they find very creative ways to showcase various brain disorders.

So, last night, as the show started, I had just got my liver readings back from the doctor a few hours earlier, and I looked at my wife and said "the show will be about someone with liver problems, you wait and see."

Ten seconds into the show, the early diagnosis is "patient has liver failure". Unbelievable. And hilarious. It really is odd how many times it's matched up.

Wednesday, December 3, 2008

Misbehaving organs

This course of tetracycline and diflucan has been very rocky, and it looks like it just hit a dead end.

A couple of weeks ago I had to stop treatment due to kidney problems. A week later the kidneys had cleared up, and I was able to start again. I had a couple of days of bad herx, that felt to me like diflucan-caused. Everything flaring at once - physical, cognitive, emotional. But then things settled down to just fatigue mostly, with a bit of other neuro stuff tossed in occasionally.

However, this week's blood test now shows that, while the kidneys are still OK, the liver function has spiked much higher than ever before. 300-something. Wow. So I'm stopping the tetracycline and diflucan again, hoping the liver will return to it's normal half-sucky condition by next week. Regardless of if it takes a week or a few weeks, it looks like I get no more treatment until this clears up a bit.

Dr. Phillips doesn't think any of the Buhner Protocol that I'm taking is responsible, and I did a bit of googling on my own and don't find any potential problems here. In fact, Andrographis and Sarsaparilla are known to help the liver.

Dr. P. also suggested I start taking Milk Thistle herb, and N-Acetyl Cysteine for liver support. I got these at a health store today, and started taking them. I'm considering adding Dandelion Root as well, as it's a good liver tonic.

Thursday, November 27, 2008


Carolina Wren

I've never been much of a fan of Thanksgiving as a holiday. I have never liked turkey, or football, or loud family gatherings. But today is turning out a bit differently. It's a very pleasant, quiet day, with my wife and son in the kitchen preparing food. I'm spending most of my time trying to stay out of the way (wife and son will probably later testify as to my failure in this regard), and watching the birds, and squirrels, on the deck. It's just the three of us today, as other son and grandparents are off with other family in other cities.

I slept fitfully last night, with many long dream sequences. This is my brain having "jangly" issues, but not being awake to know it. A pleasant change was that the dreams seemed to resolve fairly well. Often when I have these symptoms the dreams are either somehow "off" - unsettling topics or imagery - or they involve scenarios where I'm trying and failing to do something, get somewhere, etc.

On waking, my physical symptoms are immediately obvious, like full body aches, which are common, but the neuro stuff usually takes a half hour or so to make itself known. Today was no different. Sore on waking. It's an odd feeling - the soreness is low-level, but everywhere, like the feet and ankles, and hands, as well as neck, back, shoulders. Otherwise I felt pretty well.

I fed the dog and wanted to feed the birds, as they were on the deck looking for their breakfast, but I'd taken the feeder in last night so the squirrels didn't destroy it before I got up. Yesterday I bought the couple of band clamps I needed to try out my newest idea - lashing a tall iron pole with a hook at the top to the deck railing. This pole normally lives in the garden, holding a hanging planter. So, I set this up within a few minutes this morning. While I was working, I guess I was fairly quiet because not three feet away a male downy woodpecker landed on the railing, wanting to peck at the suet cake that was soon to be mounted on the new hanger. We shared a few moments, and he flew off.

All done now, the birds are coming like crazy within moments of hanging the feeder. It's a sure thing. No squirrel can climb that thin pole all the way to the feeder. Ha ha.

Incidentally, I've decided not to use the BB gun anymore, as I really do like the squirrels. I don't mind feeding them, I just don't want them to take ALL the food. So, after I prove that this new hanger is completely inaccessible, I'll figure out some kind of squirrel feeder.

Ten minutes later I'm thinking about the BB gun again, as I see a squirrel sitting right up on top of the huge pole. What the heck? I take care not to startle him as I scold him, because he's in a precarious spot, with a long drop off the pole, 15 feet to the ground. So he climbs down, and I shoo him away, at the same time apologizing for shooting him yesterday. No wonder they show me no respect, right?

I gave in and spread some cracked corn and sunflower seeds on the deck railing. The squirrels tucked in for their Thanksgiving dinner. The nuthatches joined in, as they have a difficult time landing on the feeder. They're more of a tree-creeping bird.

I know it sounds like I'm some kind of bird nut. Not really. I just started feeding the birds (and squirrels) last winter, while I was sitting home with Lyme. Watching the little critters really helps take me out of myself, and stop focusing on my health all the time. And they make me smile, which is very good medicine. Just yesterday for the first time I saw a Carolina Wren (above). They're very serious looking little birds, running around on the deck railing squatting when they call, like they're so intent on getting someone to pay attention. Pretty funny.

In working through this illness, I find I feel much better about things if I try to accomplish even just one tiny positive thing each day. And it's even better if that thing benefits someone else (even squirrels).

After watching the birds for a bit, it was time to take my morning dose of diflucan. Within a couple of minutes I found myself wandering aimlessly, frowning, foggy but with an unfocused anxiety that is the hallmark of the "jangly" state. Sigh. Taking a long shower helped a bit, concentrating on the water hitting my body. A good distraction.

Partly I'm writing like this today because it's one of those emotional roller coaster lyme days, when everything's very near the surface. And partly because it's Thanksgiving, and I have SO MUCH to be thankful for. A partial list:
  • A firm diagnosis. I may have problems, but I know why, and am able to work on getting better.
  • My family, for their understanding and patience.
  • Periods of clarity, which I used to take for granted, and now seem so poignantly sweet.
  • Life, and the ability to perceive beauty around me.
  • Not least, my wonderful lyme-literate doctor, Dr. Phillips.

Happy Thanksgiving everybody.

Wednesday, November 26, 2008

Squirrels keep me busy...

What kind of "bird" is this?

My attempt at feeding the birds, and not being molested by squirrels reminds me of Bill Murray in Caddyshack. I put up some new bird feeders the other day, on presumably squirrel-proof hangers. I watched as a few lovely little songbirds came to feed.

After doing other things for a few hours, I came back. There were 11 large crows and 7 fat squirrels on the deck, and no "lovely little songbirds". The feeders were mostly empty, and all chewed up. One of them had parts strewn all over the deck and yard.

So, after thinking about it for a while, and making a cardboard template, I bought a piece of plexiglas. I cut it to size, thinking I could still see the birds through it, and that it would be a barrier to the squirrels. I set it all up, and put the feeder back together and re-filled it. All ready for the birds now.

That was yesterday. By the time I got up this morning, the squirrels had already figured out how to get around the barrier. And the birds looked kind of confused.

I've got one other idea involving mounting a large post and hook on the deck, hanging the feeder higher than it is now. But in the meantime, while I was considering this, the squirrels continued climbing over the barrier and gobbling all the food, with me sitting just a few feet away. Ugh. They're really cute, but they pissed me off a bit. So I took my son's BB gun and pumped it lightly, so as not to do any real damage. Well, perhaps I should pump it even lighter. I took one shot, hit one in the rump, and boy did he jump. And now there's not a squirrel to be seen anywhere. I feel kind of bad, like it's their job to try and get the food, and I didn't play fair.


I heard from my Lyme doc today. Yesterday's blood test results were in, showing that taking a few days off the meds allowed my kidneys to completely recover. And it showed that at least part of the earlier high kidney reading was likely due to muscle inflammation, which is due to the Lyme, not the meds.

The liver function is struggling again, so it's not all good news, but encouraging enough to allow me to continue the course of tetracycline and diflucan. So, I'm back on medication. Yay, I guess.

I've been feeling really good the last few days. Very few issues. And now, within a half-hour of taking the meds I have fatigue and "cognitive deficits" again. It always amazes me how fast things can change with this illness.

I guess I shouldn't be surprised, though. One thing I remember from Buhner's book Healing Lyme was the fact that lyme spirochetes will swarm through the bloodstream to the site of a new tick bite literally within a few seconds. The idea is to infect the new tick, and spread the illness. But the idea that the spirochetes can respond so quickly to the chemicals put into the bloodstream from the tick bite is rather amazing.

I can only imagine all the instant thrashing that goes on when tetracycline enters the bloodstream. All the spirochetes either dying or burrowing - literally drilling their way into collagen-rich tissue, like eyes, brain, joints, skin.

I'm not sure what to expect now. Since I took time off, is there a second diflucan flare coming in 5 days? I'll just have to wait and see. I'm leaving my calendar open, just in case.

Sunday, November 23, 2008

General update

White Breasted Nuthatch

It's been a while since I've posted, so a general update is in order.

Financial concerns

My long-term disability insurer stopped paying in early July, essentially claiming I wasn't sick, mostly based on documentation generated from my earlier non-lyme-literate doctors. It took us a while to prepare an appeal, as it included information from my LLMD, which I just started seeing in late July (we made the appointment in May, but late July was his first available appointment).

We've hired a lawyer to communicate with the insurance company, and we've paid a couple thousand out-of-pocket for special tests and reports that detail the level of my disability. We don't have the extra money for this, but it seems necessary. The insurance company will decide by early January if they're going to reverse the denial.

We're really feeling the financial crunch - we've run out of savings and are now selling off retirement assets at fire-sale prices to live day-to-day. This is not sustainable.

I tried to return to work a month ago, spurred by the combination of mounting financial pressure, and not wanting to lose my job in the midst of what's likely to be a long, drawn out, high unemployment recession. But it doesn't matter what I want, or even need, to happen. This illness is progressing on it's own schedule. On bad days it's exhausting to think about, and on good days it's just very frustrating.

Recent medication outcome

My LLMD said to expect a flare up from the Diflucan around the 4th day - that it went straight to the brain. Well, day 4 came and went. I'd been feeling pretty good, except for arthritic symptoms in hands and wrists, and the ever-present ringing ears.

Day 5 also went pretty well - until the evening. At 7:30 I was fine, and by 7:45 I was in bed, completely hammered. Wow, I couldn't believe how fast things changed. These symptoms felt a bit different than the usual groupings I'm used to. It was more of an all-at-once thing. Faded (slow processing), jangly (anxiety), lots of back, neck, and hand pain, total fatigue, and in addition, I felt feverish, which isn't a usual symptom for me. It felt kind of like the original first few days of lyme symptoms, shortly after I got bit. Like flu, only worse.

The next few days were pretty rough, with the above symptoms, and adding in emotional instability and depression. Very jangled brain, inability to think clearly or comprehend written or spoken information. Uncontrollable bouts of crying, for no particular reason. Insomnia and disturbed sleep.

Eventually things got better, and I started feeling pretty good - just waiting for the tetracycline to have it's turn messing me up. But that didn't happen. I did have the usual stomach side effects, including one long evening where I struggled to not barf up my meds, but by the tenth-or-so day after I started on this course of meds, I was feeling pretty darn good. Just relatively minor episodes of pain, fatigue, or faded-ness, usually once per day, but not too severe compared to my normal state.

On the 13th day, my LLMD called to say that my weekly blood test showed surprising improvement in liver function. My liver has struggled to keep up with the Lyme and the meds for well over a year now, and this was good news, even if we weren't sure why, or sure it would last.

But (does good news ever come alone?) my kidneys were now all of a sudden not doing well at all. So much so that Dr. P. requested that I stop the meds for now. So, now, I'm waiting a week and having another blood test to see if the kidneys improve without the medication. I've had tetracycline before with no kidney issues, so I assume it's the Diflucan that's causing the problem, but not really sure, as I guess it could just be a cumulative thing from the Lyme and the various drugs. I guess if it clears in a week, it must have been either the tetracycline or the diflucan.

So now I'm in the middle of an unexpected week off. My first reaction is always "No!, I want to keep fighting!", but then I remind myself that it's not a completely linear process, and the passive times are as important as the active. And while I'm willing to do whatever it takes, I'm not-so-secretly glad to be off the tetracycline. My stomach churns at the sight of the pills. Give me good ol' Mepron and zithromax any day.

I suspect had I stayed on the tetracycline, it would've flared up in a few more days. Instead, I'm still feeling pretty good. I try to be positive, but to also not get my hopes up unreasonably. This illness moves in waves - I can see this clearly on my symptom chart. I feel good enough now that I'm feeling like I should be getting back to work soon - that maybe I can get back before I lose my job, and before I run out of money. Hopefully, things are on the long-term up trend that they seem to be, but I must remind myself that it's extremely unlikely for all my symptoms to have simply disappeared for good over the course of a few days. So I'm trying to be patient, not get my hopes too high, not second guess myself too much, and enjoy the clarity and energy while I have it.

The Holistic approach

I stopped seeing Dr. D., my holistic doctor, a while back. I always felt that his approach was helping, in a supportive way. I didn't feel he could heal the lyme, but that he could help my body fight it, and to remain in balance in the midst of the powerful antibiotics. I'm not sure how long his treatments "lasted". It seems like in an ideal world, I'd see him once a day for a few minute tune up.

But of course this isn't feasible. Even seeing him once a week became a luxury I couldn't financially afford. I wish I could have continued the treatment, but the cost, coupled with the fact that, while it did help, it didn't seem to do so for very long, forced me to look at alternatives.


That's where the Buhner Protocol, from his book Healing Lyme, comes in. I'm hoping that these herbs can help my whole body, to help kill the lyme, and also to boost my immune system and keep me in balance.

I started the core herbs (Andrographis, Knotweed, and Cat's Claw) a couple of weeks ago, slowly ramping up the dosage as Buhner recommends. I'm now just starting week three, and am at about three-fifths of the full dose regimen. There are too many other moving parts to know if the herbs are helping, or in what way. I actually thought I might flare up and feel worse when I started on them, but, aside from the Diflucan flare, these weeks have been mild. It could also be that my dose isn't high enough yet. The herbal approach is long and gradual, so I may never be able to pinpoint the actual effects.
Red Bellied Woodpecker

A few days ago I started the other portion of the protocol that I've decided to use: Sarasparilla and Eleuthero (Siberian Ginseng). The eleuthero is the formulation recommended by Mr. Buhner: Herb Pharm 2:1, which is the "Russian formula", doubly potent. Mr. Buhner recommends a rather high dose of this (1 tsp 3 x daily), with no ramp up (full strength from the beginning). I'm having problems with this.

On the one hand, it may be the eleuthero that's responsible for some of my increased energy, and perhaps even some of the return of "creative thinking" that I've had glimpses of lately. But it's a stimulant, and at the recommended dose it makes me jittery - foot tapping, chewing on my lip, etc. Also, one day I tried to take a nap and had these strange, disturbing hallucinatory dreams. So I've backed down the dose from 1 tsp 3 x daily to 0.5 tsp 2 x daily. For now, at least.

Okay, now that I've got this update posted, I have decided that I really don't have that much energy today, and I'm going to make a nice cup of tea and sit where I can look out the window at the new bird feeders I set up yesterday. It's gotten cold here (in the teens at night), and the birds are HUNGRY. We've got black-capped chickadees, tufted titmouse (titmice?), downy woodpeckers, red-bellied woodpeckers, dark eyed juncos, and nuthatches (that live in a big hole in the nearby maple tree).

I get a kick out of watching the nuthatches. They must only like one variety of the mixed bird seed, because they climb on the feeder, and proceed to shovel everything out - seeds flying - until they find what they like.

And then there's the squirrels. We don't want to welcome them on the deck, but they are our neighbors, and they're looking very forlorn, once they realize they can't get into the feeders. I dumped some bird seed on the lawn for them, but I don't think they found it yet. They love the sunflower seeds.

Tufted Titmouse

Dark Eyed Junco

Downy Woodpecker

Black-capped Chickadee

Sunday, November 9, 2008

The end of a very nice day

Boy, tetracycline sure is potent. Today is the first day back on antibiotics after about 10 days off. The treatment break wasn't all light and joy, in fact it kind of sucked, but as it wore on the symptoms were less intense.

Today I woke and took my initial tetracycline dose, followed a half-hour later by diflucan. Such cute little pink tablets.

No effect - didn't really expect anything, but you never know. And the rest of the day was a rare treat. I almost felt normal. Plenty of energy, though I didn't really do anything, freedom from the back and neck pain, and most of all my brain was clear.

I caught myself thinking today. Actually thinking! Thinking about a camping trip in Maine or Canada in the winter (some future winter, not this one), thinking about how to solve a tricky programming problem (pre-Lyme I was a software developer). On these very rare days (the last one like this was months ago) it's a bit scary to see a glimpse of how I used to be, of what I've lost. I don't know if it's the neuro problems, or if it's this way with all chronic illness, but it has a sneaky way of settling in, such that you forget just how wonderful the world is. It's on these rare days that you realize the occasional "good" lyme day really isn't all that good. It's not just that there might still be aches and pains, or low energy. The critical spark is missing. The best analogy I can think of is walking around with 30 points shaved off my IQ. You don't always feel slower, but you almost always are.

All this ended with a bang 3 minutes after taking tonight's dose. I was in the middle of doing something that required a brain, that I'd been working on all day, very nicely. Literally within minutes I watched it drain away. I quickly typed some notes to self about where I left off, as I couldn't in any way continue what I'd been working on, and without the notes, will forget all the details.

So now, it's a couple hours later, and the jangly, spinning brain, and loudly ringing ears are the norm again, sigh. And now the body aches are coming back, too. It's fairly unbelievable how fast it came on, dragging me kicking and screaming (ok, not really) back into my confused little world.

Saturday, November 8, 2008

The Buhner protocol

Warning: I have noticed that this post appears relatively high in google searches for the Buhner Protocol. But this post is only the beginning of my story with Buhner, and it didn't end well. I got a severely inflamed liver within a few weeks, and had to stop. If you do Buhner, I recommend weekly blood tests as you get up to full dose, and then monthly thereafter if all is good. Be careful.
Here's some of my subsequent Buhner data

Over the past month, I've been reading Healing Lyme, by Stephen Buhner. This is really good reading. Some of it was too in-depth for me (he mentions it can be used by both patients and practitioners), but most of it was highly readable, if a bit dense. Books written for lymies ideally have a lot of structure and white space, separating small doses of content. This book falls short in this area, and it challenged my damaged comprehension and concentration skills, but is still well worth the effort.

Mr. Buhner is an herbalist. Using a flat tone, letting the facts speak for themselves, he describes the borrellia organism as one scary bug, and then develops a group of very specific herbal protocols, or regimens, that one can follow to help the body fight the Lyme, and related co-infections. This is very refreshing and useful: no evangelism, no exclamation points, no cure-all promise; and very specific instructions on the herbs, dosing, combining, to combat particular symptoms, how they work, etc.

The book provides a "core protocol" which anyone with Lyme should follow, even as an adjunct to antibiotics. Then there are many other suggestions for those that may not want to take antibiotics, or more likely, those who have reached a plateau - somewhat short of a full cure - in their antibiotic therapy.

Buhner offers preferred suppliers, and stresses the importance of getting some quantity of whole herb, not just a standardized extract. I think whole herb tinctures are fine, too. What he avoids is the trap of "discovering" the "one" active ingredient in a plant, and missing out on the interaction of the various compounds that make up the whole herb. That said, many of his recommendations also contain some standardized portion as well, to ensure a certain base level of potency.

The core protocol consists of Andrographis, Cat's Claw, and Japanese Knotweed. Optional "core" additions are Astragalus and Sarsaparilla. I'll talk about these a bit, but you really need to read the book. Don't just get some herbs and start taking them blindly.

Case in point, Astragalus, while recommended for more recent lyme infections, is harmful for someone like me who has a more advanced case of chronic lyme. I really just remember "don't do this", but I think the reason was that it triggers a rheumatoid arthritic response. Just what I don't need, thank you. Astragalus is strongly recommended for early cases, and in smaller doses, for those who don't have Lyme, but live in an endemic area. (I used to think "Connecticut", now I think "North America", at least).

Andrographis, Cat's Claw, and Knotweed each in their own way support the body's immune system, and have the ability to kill spirochete bacteria. Sarsaparilla is known for its ability to bind neurotoxins, which may lessen the severity of herx symptoms by helping the body flush the toxins more efficiently. Interestingly, sarsaparilla was a popular remedy in the 1800s for syphillis, which is also a spirochete bacteria.

Of the many other recommended herbs, I've chosen to add Eleuthero (Siberian Ginseng) to my four core herbs. It's not Lyme-specific. And it's a completely different plant than ginseng. Buhner describes some very interesting studies using relatively high doses of eleuthero. It boosts the adrenals (mine are completely shot), enhances energy (I have none), and mental clarity (nope, I don't have this either). It was interesting to read that one of the studies showed that factory workers who regularly took eleuthero could perform complex tasks more quickly and accurately, even in a very busy, noisy environment. This is interesting to a person who can't even walk into a grocery store without losing their brain.

Here's my summary take-away of the five herbs I'm starting with. These are only an adjunct to antibiotic therapy (my LLMD actually recommended this book). I may add a few more after a while, we'll see how it goes.

  • Andrographis
    • Anti-spirochetal
    • Immune enhancer
    • Anti-inflammatory
    • Brain: anti-spirochetal, calming agent
    • Enhances liver function, helping to clear infection from the body
    • Easily crosses blood/brain barrier and accumulates in central nervous system.
  • Cat's Claw
    • Immune booster
    • Anti-inflammatory - arthritis and muscle pain
    • Enhances central nervous system and cognitive function
    • Increases CD57 white blood cell count (natural killer cells)
  • Polygonum (Knotweed, Hu Zhang)
    • Anti-spirochetal
    • Immune booster and modulator
    • Reduces Lyme endotoxin damage
    • Easily crosses blood/brain barrier and specifically protects brain from inflammatory damage and Lyme toxins
  • Smilax (Sarsaparilla)
    • Binds toxins, helping to flush them and reduce herx symptoms
    • Anti-spirochetal
    • Immune modulator (lessens autoimmune reactions)
    • Anti-inflammatory for arthritis symptoms
    • Neuro protector, easily crossing blood/brain barrier
    • Enhances cognitive function
    • Lessens fatigue
    • Enhances liver function
  • Eleuthero (Siberian Ginseng)
    • Immune system booster
    • Adrenal tonic
    • Antidepressant, mental clarity stimulant
    • Enhance energy levels
    • Adaptogen: increases nonspecific resistance to adverse influences

Mr. Buhner recommends relatively high doses of these herbs. Without the book, and just a list of herbs, or from talking to someone in a health store, I would never have guessed to take so much. To temper this, as I believe there may be some digestive upset at first, he suggests ramping the dose up over 4-5 weeks. Then, at full strength, continuing for at least two months, and more likely 8-12 months, depending on symptoms. Eventually reverse the process, slowly stepping down the dosage, to either none, or to a maintenance level.

When I was a child I had a copy of John Lust's The Herb Book. I see it's still in print, available at Amazon. Back in the late 60s, my paperback copy had no color pictures, and only the occasional line drawing. I would read with a dictionary nearby, to look up that "glabrous" meant "hairy", for instance. I remember thinking it would be much easier to read if Mr. Lust had just said "a hairy stem".

With these details in mind, I'd look at plants wherever I went, and when possible, and sure of identification, I'd collect plant parts, take them home and dry them. I didn't know about making tinctures - I wish I had. No one in my house wanted to let me know they were sick or injured because I'd want to use them as a guinea pig for my herbal remedies.

Over the years I've gotten away from my early interest in herbs and medicine. I know part of the reason. A couple paragraphs up I wrote about dosing over months. In this so-called modern age, we're too busy to be sick, and if there is, or appears to be, a quick fix, we'll (well, I'll) go for it. While this can work, and is certainly convenient, I realize I've forgotten just how potent certain herbal remedies can be.

One aspect of chronic Lyme is that nothing is convenient or quick anymore. Not life, not medication, and certainly not a cure. With this backdrop, and wondering if I'll ever really get better, a well thought-out herbal protocol is very attractive to me at this point. At the very least, my immune system can use all the help it can get, and the steady gentle influence of these herbs over a long period of time can't help but be beneficial.

Tracking medications

I started on my new course of medication today: tetracycline (750mg twice a day) and diflucan (100mg twice a day). This continues for the next 30 days.

Tetracycline, aside from messing up my stomach, also tests my limited brain function: don't eat anything two hours prior, or for 20 minutes after, and no dairy for two hours after. Actually, the directions really say to not eat anything for an hour or two after, but my doctor said it's OK to eat in 20 minutes, as long as it's not dairy. Some food helps the fairly constant low-level stomach ache that tetracycline produces.

The diflucan should be taken with food, so not with the tetracycline. And I take certain supplements, many of which have some calcium or magnesium in them. So these have to adhere to the widest tetracycline boundary. And then the probiotic, which can't be taken anywhere near the antibiotic or the probiotic gets killed. Then there's the herbal protocol I'm starting...
My dose tracking sheet (this is one day)
click to enlarge

So, I built this little spreadsheet, printed a copy for each day, and pasted it inside the cupboard where the non-refrigerated meds and supplements live. It may seem trivial, but I love being able to just look up what happens next, instead of trying to remember. I set this all up on one of my better days recently, kind of battening down the hatches for the coming herx storm.

Friday, October 31, 2008

Bacteria are reading my blog

OK, who told my resident Lyme bacteria that I was off the meds for a few days? Seriously, a mere four days off zithromax and mepron, and I'm feeling pretty darn bad. Especially that least favorite symptom of mine, "jangled brain".

I posted the other day that I'd be taking a 10 day break from medication. I've read that the Lyme bacteria are very sophisticated, bordering on scary intelligent, the way they constantly mutate their DNA, etc. I'm beginning to think they can read, too.

I know they use my eyeballs as their front porch, setting up lawn chairs, littering the area with candy wrappers and beer cans. I'm sure if I can see my blog, they can too, right? And now that they know the coast is clear, they're out in force, having a block party in my brain.

These symptoms surprise and concern me a bit. I understand the herx die-off reaction, and expect it to be nasty. But to feel this bad off meds can only mean the Lyme is still flourishing. Earlier today it was as bad as it's ever been, like last year. I was trying to read a paragraph my wife composed to send to our lawyer regarding my disability appeal, and I literally read and re-read it over and over, never making it past the first sentence. By the time I got to the end of the simple 10 word sentence, I couldn't remember the context.

Even though it's a beautiful autumn day here in Connecticut, I've retreated to the bedroom, where I can control and limit the inputs to my senses. This post has been a real work out for my poor brain (it's taken several tries), and the attempt at humor may fall flat, but writing it has lifted my spirits.

In my spare time I may devise a code to thwart the bacteria intelligentsia. Apparently "treatment holiday" wasn't subtle enough.

speaking loudly

(sssshh.... kidding)

Monday, October 27, 2008

Treatment update

I wish I had some freesia in the house
I visited my LLMD today. We had a nice chat about my progress (which so far ain't much), and he looked at my (really neat) symptom chart. He is choosing for now to interpret my liver function trend as positive. The readings are high, but coming down.

Looking over my history, he's also pleased that I've not actually been on that many different drugs - just doxy, amoxicillin (useless), Rocephin, tetracycline, zithromycin, and mepron. Hmmm, listing those out, it sure seems like a lot, but he's pleased because he still has a lot of things he can try on me, either to pulse, or in case we run into a dead end, or if I have a bad reaction to a particular drug.

We had a laugh when he was describing his pulse methodology - hit the lyme for a while, then take a break, and repeat. I said, "sounds like Whack-a-mole to me." You know, that carnival game? Sad thing is, I don't think I've ever beat that darn game.

I'm all done with the zithromax, and tonight is the last dose of Mepron. After that, I get a 10 day treatment holiday (yay?) Then I go back on tetracycline 1500mg/day, this time for a month. Along with the tetracycline, we're adding in diflucan (100mg/day I think). I've not taken this before. It's usually categorized as an anti-fungal, but has shown promise in killing Lyme.

The herx pattern should be "interesting". I'm told the diflucan goes right to the brain, and peaks hard around four days into the treatment. And then probably the tetracycline will peak in weeks two and three, if like last time.

After that, ten more days off drugs, and then back to see the doc in mid-December. He wants to evaluate me next after I've had a treatment break.

Dr. P. gave a little insight into his view of my overall situation. He thinks my condition is "guarded", and that I'll likely need treatment for a year. He DOESN'T say I'll get better. I'm not sure if he's just being cautious, or if I'm one of his worser cases, or what. I'll just keep plugging away. I made sure he understood not to worry about how bad I feel on the various treatments - I'm willing to put up with almost anything to eventually have my life back.

Wednesday, October 22, 2008


I haven't been able to work for over a year now. I'm very fortunate that my employer values their people. They've been very patient, holding my job all this time, waiting until I can return. Even so, there's a limit to everything, and I feel some time pressure to return so I don't end up losing my job. And then there's the obvious financial incentive...

Lyme is a roller coaster ride. Day to day, and week to week. The symptoms are ever-changing, waxing and waning. When I feel reasonably well for a few days, I contemplate trying to go back to work part-time. Then, usually within a day or so, reality sets in, and I realize it's not yet feasible.

I work in New York City, which is a long commute by train and subway. While I can do some work from home, I need to be in the office at times, and especially at first, since I've been out so long. Even though I'm having the occasional good day, most days I'd be unable to handle the commute (there's no way I could even walk across a crowded Grand Central Station), let alone being in a crowded open-space office environment. Fluorescent lighting, multiple conversations going on around me, required multi-tasking like speaking with someone, and then the phone rings. And then there's the actual work - specifying and managing complex computer systems. Stuff that used to seem routine, but that now just causes my head to spin.

Early in September I optimistically told my employer that while I still thought it was too soon, I'd try to return part-time starting in mid-October. I wanted to give them, and my family, some feeling of progress.

As the time got nearer, I was pretty sure it wasn't going to be possible, but kept an open mind, and tried to conserve my energy, though it doesn't really work that way. I was scheduled to go into the office, for the first day in over a year, on Thursday. The Saturday before, as a little test, I decided to help my wife pick up the vegetables at our local organic farm, where we buy a "share" annually, and get to come each week and fill up a couple of bags. It's a mile down the road, and is a place I feel comfortable with. I should be able to do this, right? I'll let my wife carry all the heavy stuff.

Well, within 10 seconds of walking into the barn, I start losing my brain. There are people! As in more than one person at a time. Oh goodness! They're all walking around, changing directions, I can't predict - they're bumping into me because I'm frozen in place. I'm afraid I'll be knocked over. There's a toddler running around, enjoying the sound of his own voice, fairly loud. Not bothering anyone else, I'm sure. But for me, with each loud utterance, I could feel myself spiraling deeper into a non-functional state. With difficulty, I made my way to a corner, and just stood there, gathering up the energy and brains to make my way back to the car.

OK, big surprise, I'm not ready for prime-time yet. So I called work a couple of days later and told them I couldn't come back yet. They understood, and are doing what they can, but I may end up losing my job. Not sure yet how it's going to play out. Whatever they have to do, I certainly understand.

This week I feel a tremendous weight has lifted. I wasn't really believing that I could return to work, but was trying to convince myself, in spite of daily debilitating symptoms. A formula for stress. So now, back to getting better over the long haul.

I think I'm on a good path to recover, but it's not going to happen on any timetable that I try to force. It's a process, and one that I can only control indirectly, by taking my meds, and doing some wellness stuff like gentle stretching and meditation. I really have no idea how long it'll take.

Thursday, October 16, 2008

Symptom tracking

My symptom chart (click to enlarge)
Zero: feeling good      Three: feeling horrible
I've begun keeping a simple spreadsheet and chart of my general groupings of symptoms:
  • Neuro "faded-ness": easily startled, sensitive to light, sound, smell, very slow brain processing, inability to filter multiple input streams, like someone speaking to me while the television is on, loss of coordination and dexterity, ringing ears.
  • Neuro "jangled": irritability and rage, blurred vision, insomnia, low-level unfocused anxiety, ringing ears here also.
  • Fatigue: zero energy, too exhausted even to think, or to get off the couch. Constantly leaning or sitting, very slow walking.
  • Pain: usually consists of headache, neck, back (large muscles), and occasionally hands and feet.
  • Numbness: tingling and lack of feeling in hands and feet, and also various involuntary twitches, that sometimes last for a day or two.
I simply fill in each day, each symptom group, with a value from 0 to 3. Zero is "feeling great". Three is rare, and horrible. (Hmm, I guess zero is pretty rare, too) I like the visual aspect, as it allows me to see at a glance, and to show the doctor, "how I'm feeling". I got the idea of the chart from fellow Lyme sufferer Chronic Triathlete.

This particular chart begins when I started on the Mepron/Zith combination. And I just fudged the early values, as I didn't have the chart then. But it's easy to see the spike in week three (ugh), and then some respite. And then a haphazard return of symptoms. Not sure how much significance to attach to all this, but the picture helps to put it in perspective.

I've got a new symptom, that I'm not charting yet. Memory loss. Doctors asked me about this before, as it's a common Lyme symptom, but I never had a problem with it. Now I'm not so sure. In just the past few days there have been several situations where I draw a complete blank. Like what did I eat today. I remember some of it, and know there was something else, but it's just GONE. And today I noticed in my day-by-day pill container that I'd only taken one zithromax yesterday, instead of two. I'm supposed to take one in the morning, one in the evening. What bothers me is that I have absolutely no recollection of taking them or not. Usually there'd be a teaser of memory that would allow me to piece events together, but this is just a blank. I'm a bit surprised that I'm still developing new symptoms.

By the way, I just viewed Chronic Triathlete's latest post. It's an informative video about the lyme spirochete that you may want to check out.

Thursday, October 9, 2008

Ticks and the outdoor life

I've pulled over a half-dozen tiny deer ticks off of my dog in the last few days. Only one was bit in, the rest were just looking for a tasty spot. Damn, I hate the little bastards.

I really don't like this feeling of being scared of the outdoors. When I hiked the Appalachian Trail in 2005, I slept on the ground for over 120 days. Even before that, but especially since then, the mountains and forests are my second home. They've always been my place of retreat, of respite, and it feels like a major part of my life has been taken away.

Once I get better and can hike again, I can do a few things to be more careful:
  • I normally sleep under a tarp. I think a zipped tent with a floor will be much safer. I suspect that's how I got bit last year - the tick has all night to be attracted to my body heat lying on the ground. I'm sure it's no great feat to climb onto my groundsheet.
  • I can take a little mirror, and check my whole body each morning and evening.
  • I may consider DEET. I've never used any kind of bug dope, as I don't like the poisons. Even before the Lyme, and my ultra-sensitivity to all kinds of chemicals, bug spray has given me headaches. But I wonder if I can get by putting a little bit on key areas, like the tops of my socks... I'm not even sure how well it actually works against ticks...
Unfortunately, for now at least, I don't even feel comfortable sitting in the woods, or in a field, or walking under leaves. When I pause while walking my dog, I squat so as to offer only my shoes to climbing ticks. This kind of tick avoidance becomes very impractical on a long-distance hike. I'm hoping a bit of my fear is overreaction due to neurological symptoms, and will go away. But on the other hand, I just can't imagine how bad it would feel to find out that a couple of years after my recovery, I got reinfected. Plus, I suspect that since Lyme may never completely be eradicated in the body, perhaps one's reaction to another infection is more quick and severe. I just don't know.

Monday, October 6, 2008

Feeling better

I have been feeling better the last few days. Apparently three weeks of herxing on the Mepron/zith cocktail was enough. I continue with these meds for three more weeks, and I don't know what to expect, so I'm really appreciating these good days.

Saturday I was able to remove a small window A/C unit, mow the whole lawn, go shopping at Walmart, and take the dog for a longer-than-usual walk. And I didn't crash at the end of the day, either.

I'm amazed reading that last paragraph. For weeks now, I haven't been able to even consider doing one of those things.

Tonight I started the new bottle of Mepron (the old one had a few extra doses beyond the three weeks). I don't know if this is a more recent vintage (what a lovely YELLOW bouquet - yes, it even tastes yellow), but it seemed stronger. Within 5 minutes of taking it, my head was flying. I found myself fumbling silverware as I tried to eat dinner, and getting confused by the changing scenes on the television. And now my ears are ringing more loudly again.

Here's hoping I don't have to herx anymore on the Mepron, and that I get a few weeks of "good behavior" from my body.

Sunday, October 5, 2008

No ground beef

Early this summer, my holistic doctor prescribed some supplements that contained dessicated bovine (cow) adrenal glands, and other gross parts. He explained that my symptoms of extreme fatigue, sensitivity to light, sound, the confusion of too much input, and my shock-like startle reflex, all pointed to the adrenal glands being shut down. He said that due to my illness, the myriad tiny stressors we all encounter daily cause a fight-or-flight response. Except that I can neither fight nor flee.

I had been on this for about 5 weeks, and had seen some lessening of the frequency and severity of my "episodes". I don't know if it was the supplements, or just the waxing and waning of the lyme cycle. Around this time, I had my initial visit with my LLMD, and he requested that I stop taking what he called "ground beef". (He's got a very dry sense of humor). His main concern was that these animal parts contain steroids. And steroids are strictly contraindicated for lyme patients.

I complied with my LLMD's recommendation, even though Dr. D (my holistic doctor) disagreed that these supplements were harmful. He graciously worked around it, trying other non-animal supplements.

So, again, I don't know if it's cause and effect, but I've noticed a gradual increase in episodes since I've been off the adrenals. I'm happy with the approach - instead of attempting to support my adrenal glands, which are being wiped out from the illness, we're attacking the lyme. Once the lyme is gone, or greatly reduced, the adrenals should function again. In the meantime the episodes may interfere with my attempt to return to work part-time in a couple of weeks. [fingers crossed]

Thursday, October 2, 2008

Mepron: week three

I woke up early to be on time for my appointment with Dr. Diamond. My son drove me, as my wife had a busy day at work. I really wish I could drive myself - it would be nice to not inconvenience my family in this way. But I get so fadey sometimes that it wouldn't be safe. I restrict myself to very short errands when I'm having a good day. (Fadey: very slow brain processing, and overly affected by light and sound, lack of muscle coordination)

This is Dr. Diamond's first day in his new office, which is a couple of miles down the road from the old place, and nicer. The windows open and there's fresh air circulating. Even though the road is busy, the treatment rooms face the side and rear, which is leafy green forest. Nice.

The doc does a nice thing in the waiting room. There are the usual "who cares" magazines, but he also has a table with a jigsaw puzzle. I actually like to make sure I'm early so I get a chance to work on the puzzle. Very clever. So, I brought him a new puzzle as an office-warming gift.

But I barely noticed all this in real time. I was so faded as to be semi-catatonic walking in. Dr. D was talking to someone else, and after a moment noticed I was having trouble and ushered me into the treatment room quickly. He said I was "white as a sheet". There was classical music playing throughout the office, including a speaker in the room I was in. He knows me pretty well, and proudly pointed out that he had specially installed separate switches for each speaker, and he turned it off. We joked that I'm kind of strange - that in my current lyme-state, if someone were to ask me "what kind of music do you like?", I'd answer "the turned off kind".

Dr. D got out his TBM manual to remember the specific ways to check certain major energy centers, of which he said there are five. Using muscle testing, he determined that four of my five centers were completely shut down. I recovered somewhat, slowly, as he worked on me. Dr. D's explanation for my symptoms is that the Mepron / zith cocktail is really kicking in now.

By the time my son drove me home I was fairly well recovered, though I still had no extra energy. But by late afternoon I was able to take my dog for a short walk. And then I crashed again when I got home. Oh well, such is life with lyme.

I felt fine in the morning. Then, as the afternoon progressed, I got extremely fatigued and sore - mostly large-muscle back pain. I didn't do anything to deserve this - I just sat around all day, using ice on my back, and did about 10 minutes of gentle yoga.

Ugh. Back to extreme fatigue. At one point during the day I found myself on the floor for some reason - I can't remember why, perhaps to pick something up, or to give the dog a scratch. But I didn't have the energy to get up, so I just lay there, planning to get up, for about 5 minutes. Everything's painfully slow. And lots of back pain, and some mental issues as well.

Before I got so tired, first thing in the morning I ran a couple of errands, including picking up my prescription refills of Mepron and Zithromax. I should have known that little activity would knock me out. But I like to try and do stuff, to get out just a little, regardless of the consequences. And it was such a lovely day, too.

Time for my every-few-week blood tests to confirm that the organs are tolerating the meds. But at the hospital they pointed out that I should be fasting. D'oh! I didn't notice the order for a lipid test. And I'd already eaten and taken the morning meds.

Well, this little wrinkle pretty much froze my brain. I could just feel my intelligence draining away as I stood there trying to figure out what to do, leaning hard on the hospital counter. The nurse came to my rescue and suggested I simply do the rest today and come back tomorrow for the lipid test. Ah yes, very simple. OK. But by now I'm pretty confused, and sitting in the waiting room is very difficult with the television on, and people sitting nearby wearing scented deodorant. I wanted to leave, but didn't know where else to go, and it had to be somewhere I could sit - and quickly. So I just stayed put.

I recovered enough (or was stubborn enough) to stop at the library, which is right on the way home (fortunately I live less than two miles from the hospital). I checked out Healing Lyme, and another lyme book. I'd heard about these, but never read them. Time to give them a look.

The rest of the day I did nothing but read, and I did recover enough to walk the dog. I was pretty lucid all afternoon and evening.

We had, among other things, baked potatoes for dinner. You see, early this summer I had some potatoes that grew eyes all over them, so I just sort of tossed them near the compost heap in the yard. They grew into large plants, but I didn't do a single thing to manage them. Just left 'em alone. I figured there must be potatoes out there by now, as the cold nights have killed the foliage. But I haven't had the energy to dig them up, until this afternoon.

It felt wonderful, having enough energy to play in the dirt for a few minutes, breathing in the cool autumn air, and the maple trees all turning pretty colors. Hmm, guess I better go check for ticks...

That concludes week three of the Mepron.

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.

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).

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

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.