Thursday, November 27, 2008

Thanksgiving

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.

Anyway...

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.

Herbs


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.