Friday, December 4, 2009

Quiet time

You may notice that I removed a couple of recent posts. I'm not going to say any more about my personal situation for a while. It has to do with the endless disability denial and appeal process. I've seen them twist my words too many times, and I fear providing more fodder for the soulless ones to miscontrue to their benefit.

I have found it helpful to read of others' personal experiences with this disease. I hope to continue providing mine on this blog sometime in the future.

Sunday, July 19, 2009

Your input urgently needed

As you probably are aware, the IDSA 2006 lyme treatment guidelines have been discredited, and the IDSA has been forced to revise. There is a one-day hearing July 30, to allow interested parties to provide input. The hearing will be broadcast live on the internet.

Lorraine Johnson,JD, MBA is the executive director of CALDA (California Lyme Disease Association), and is an attorney patient advocate. Her blog is Lyme Policy Wonk. She has made available a short survey as a way to collect as much anonymous patient information as possible to incorporate into statistics for her speech on July 30.

If you are a lyme sufferer, or were and are cured, or are the parent of a sick child, please fill out this survey as soon as possible. It only takes a few minutes, and no personal information is collected.

Thank you.

On a related note my LLMD, Steven Phillips, MD, will be presenting, and that's a very good thing for all of us. He's a powerful, evidence-based presenter.

Saturday, July 18, 2009

More garden photos

I took pictures of more than just the pond yesterday. Everything is blooming. Here's a bunch from the same general area.

I learned something cool today. I use Firefox 3 as my browser. I noticed that the colors of these pictures were washed out compared to iPhoto and Safari. It's a simple setting change in Firefox to fix this and see the colors that I see in the garden.

In Firefox 3's address box type 'about:config'. There will be a warning that you 'OK' through. Scroll down to the entry labeled 'gfx.color_management.enabled'. Click on it to set it to 'true'. I think you need to restart Firefox after this.


No wonder I can't grow parsley

Looking sulky after I shooed him off the plants (but now he's sitting on another)

Butterflies love the coneflowers

Daisies and coneflowers

Sweat bee on heavenly scented cream lily

Sundrop and magenta snapdragon

Bee Balm attracts hummingbirds (and bees)

Shasta Daisies in morning sun

This lily was split from one I showed yesterday. Doing well!

Friday, July 17, 2009

The pond garden

Not in the pond, but nearby. I couldn't resist posting anyway.

The view from the top

I installed the pond around ten years ago. It's roughly 7 x 11 feet, with a filter and hidden pump at the left (hidden under fake rock cover) which pushes water through a buried pipe back into the bottom of the waterfall reservoir. This way the waterfall appears natural, spilling over. The reservoir is a black plastic tub fronted with rock.

On the left side of the waterfall I planted a shrubby thing that gets white non-pareil flowers in the spring. It does a good job of hiding, and it hangs over the water. The birds use it and the nearby apple tree as perches and security while they hop in and out of the waterfall on hot days.

The right side of the waterfall doesn't look too good. I planted a white beach rose, not realizing that it would grow into a tree. It stands on tall legs, like an ostrich, the foliage and wonderfully scented flowers six to eight feet off the ground. You pretty much need a step ladder to smell the roses. Oh well. (Hey Joanne, if you're reading, any ideas? Can I prune it? I don't want to move it, and benign neglect has been my approach so far, and it's healthy...)

Waterfall, peppermint, sedge in background

The pond is terraced. The first shelf is just deep enough for cat litter pans used as planters for floating heart, sedge, mini-cattails, some kind of rush grass, and the whacking huge yellow flag iris. The second shelf is around twenty inches deep, I think. The water lilies sit here, four of them, in two (three?) gallon pots. The final level is small, 2 x 3 feet, and 42 inches deep. Deep enough so that the goldfish can winter over.

Cattails, peppermint, and pushy iris


This is the best picture I could get of any of the fish. Even though the photo isn't clear, I do like the reflections of the plants in the water. When I cleaned the pond this spring, the census count was fourteen goldfish. Some small, some black ninjas that might as well be invisible, and some decent size orange ones. I believe these fish are self-limiting--they might grow larger in a larger pond. Here, they seem to max out at around six inches long, but they have beefy 'shoulders'. All these fish were born here, as were their parents.

I stocked the pond with six colorful shubunkins and a couple of fantails ten years ago, and then added a carnival goldfish a few years later. At one point we came back from a vacation to find almost no fish. I think a heron must have got them. But there were still some, and these were the ancestors of the current fish. I think the fancy colors breed out and revert to plain black and orange over generations.

I don't care for the fish in any way. No food, no special winter care. I just clean the pond once a year in the spring, and net it in the fall to keep most of the leaves out (they rot and foul the water). No more than once a year I may add solar salt (not the yellowish kind--that's got a chemical that will kill the fish instantly). Salt isn't good for the plants, but is a cure-all for fish.

Occasionally I add water with a garden hose, making sure to run the water cold and clear first. I set it on a rock near the surface, so that it sprays in and aerates the water. Years ago we had a runty fantail fish we called "Whitey" and he loved the hose. He'd surf the current, swim around, and go again, for as long as the hose was in the water.

Massive yellow flag iris (note pond filter intake lower left)

Like most of the plants, the iris is as old as the pond. It started off as a single green shoot that arrived mail order, it's bottom in a little baggie. I thought "Hmm, five bucks. What a rip off." Not so. We've split this thing two or three times now. The chunks we've planted away from the water in other parts of the garden are doing well. Some of it I've just composted, as there's so much. The plant as you see it here is rooted in a single cat litter box, but only as a formality. It's broken the pan and most of the root system is just hanging in the water. The fish love to play in the cave created by the overhanging roots.

It has beautiful yellow flowers, as you can see, but it blooms very sparsely. It went seven years without a single flower. This year we had a bumper crop: two flowering stalks with three flowers each, plus one on one of the transplants away from the water.

Close up

Pond in early morning light

There are four water lilies. The one nearest the waterfall never blooms. It doesn't like the motion of the water, I'm told. But it still covers a good portion of the surface with it's pads. The pads covering the pond help control string algae. The water doesn't get enough sun for it to grow. String algae is nasty stuff and can make your pond a slime pit. For really bad infestations I'll use solar salt (see elsewhere in this post for warning). It kills plants, but the algae seems the most sensitive, so if I dose it right, I kill the algae and not the other stuff.

Water lilies

Two blooms at once on the same lily! This is a first. It's also my favorite water lily (don't tell the others). I love the clean, contrasting colors.

Peeking through the peppermint at another lily

Thursday, July 16, 2009

Pictures of the garden

Mr. and Mrs. Grosbeak dining al fresco

Check out the new bird feeder. It's billed as being squirrel-proof, and so far it is. I wonder how it'll work in colder weather, when the beasties get desperate. They'll probably just unmount it and drag it into the woods like they've done with all the others I've tried. But as you can see, the birds love it! This was a surprise gift from my friends Anthony and Nadya. Thank you! (Sorry for the blurry picture, that's the best my non-telephoto lens will do without getting so close and scaring away the diners.)

My retreat

I love my pond garden. It's a relaxing spot on warm summer days. I like to sit in my nearby Adirondack chair, under a big market umbrella, and listen to the water. Just out of view is a patch of Bee Balm, which frequently attracts hummingbirds. Sorry, I couldn't get pictures of them--they don't stay still for long.

The only rose I haven't killed

I'm a serial rose killer. Just can't seem to keep them alive. But this little guy was the kind you buy in a 4-inch pot in the grocery store, planning to enjoy it in the house, and then consign it to compost. It wouldn't die, so I planted it, and look how well it's doing! Smells wonderful, too, but you have to bend over because the whole plant's only 8 inches tall.

My little helper in the garden

This is Stewart aka Boogernose. And in the garden he's known as Crusher. He sunbathes (in the nude) and in the process crushes everything in his path: parsley, thyme, painted daisies, petunias. Here he is in his fort under the deck stairs, taking a break from the sun and wallowing in the dirt.

Wednesday, July 15, 2009

On the roller coaster again

Time has flown since my last post. I've been busy writing, helping my son fix up his vintage VW Bus, weeding the flower bed, and cleaning out the garage. Aside from the writing which doesn't tax me physically, I don't do nearly as much as it sounds like. I just poke along at Lyme-speed, marshalling energy, planning tasks in stages that I can spread out over multiple days.
Early Wakefield heirloom cabbage

The weather here in Connecticut has been great. It rained some part of almost every single day in June. I like that because it keeps the temperature down. And July has been unseasonably mild, including fifty-degree nights and highs around eighty, breezy with low humidity. Fort Hill Farm--the organic CSA farm we belong to--has been harvesting early crops for five weeks now. Amazing greens and lettuces, snap peas, summer squash, greenhouse tomatoes, onions, broc, cauliflower, broccoli rabe, a wonderful heirloom conehead Wakefield green cabbage, beets, carrots, escarole, strawberries, herbs, cut flowers, and on and on and on. Our farmer works thirteen acres just down the road from us, and from this small patch he feeds 400 families. In another couple of weeks we should get corn and field tomatoes and crisp yellow watermelons. I can't wait.

I'm enjoying the email-based writing course I signed up for two months ago. It's keeping me busy and I'm progressing steadily. I've produced three manuscripts and all are in various stages of the submittal process with various mainstream and literary magazines. No acceptances, but it's early days yet. Fingers crossed...

It may be time to say goodbye to feeling good for a little while. I've been on plaquenil/biaxin/tetracycline for three-and-a-half months now, and I've seen improvement. I saw my LLMD yesterday and he decided to keep the same regimen for one more month. Plaquenil is a slow-acting drug. It takes several months to ramp up. If I stop it now, and try something else, then to try it again requires another 3-4 month commitment down the road. I think my doctor felt it was worthwhile to try and squeeze one more month of benefit out of the current course before switching.

I've been on 1000mg tetracycline throughout this period. My first long-term antibiotic therapy back in August 2008 was 1500mg tetracycline, not paired with any other drugs. I was very sick back then, and herxed for five weeks straight. Tetracycline seems to always have the ability to bring out the Lyme in me. This is a good thing, but sometimes difficult to live through. The low dose has been much more benign.

Now, for this coming month, I'm on the highest dose of tetracycline ever, 2000mg, along with the biaxin and plaquenil. I started with last night's dose, and within an hour I was feeling it. My stomach feels like there's an egg-sized stone in it. Not quite nauseous. Food seems to help, but of course the tetracycline must be taken on an empty stomach. I watch the clock and eat as soon as I'm allowed. The stomach issues aren't lyme-related. That's just the drug's side effect. But the neurological stuff is definitely lyme. It all comes flooding back: pain in hands and feet, blurred vision, confusion, emotional instability including irritability and tears, sensory overload, muscle tics, and the list goes on. This morning's dose was even worse. I'm not sure if I have another month of this, or if it'll settle out in a few days. Either way is OK, as it means improvement in the long run.

My main complaint during these past months is a complete inability to sleep without some aid. I've been taking Neurontin a few hours before bedtime, and it usually allows me to sleep through the night. I wake groggy, but it's worth it. Without the Neurontin I lay down to sleep and immediately have restless legs. In the rare circumstance that I can fall asleep through this, or if I'm simply exhausted enough, I'm popped awake as soon as I enter deep REM sleep. And that's it for the night.

This is classic lyme-insomnia, both the restless legs and the mid-sleep awakenings. So, even though I may have been feeling better, there are still serious neurological problems. I suspect it's the plaquenil that's brought this symptom to the fore, and I'm desperately hoping for sleep relief on the next regimen a month away. I don't know what that will be, just that it won't include plaquenil.

Sunday, June 7, 2009

Definitely getting better

Whoops, it's been a full month since the last entry. Time flies, sometimes. I'm still on plaquenil, biaxin, and tetracycline, and I feel pretty darn good. Oh, I still have issues, often daily. But they're less severe, less frequent, and fade more quickly than say, six months ago.

I saw my LLMD the other day. He's a funny guy. Extremely dry sense of humor. I think. After hearing how the past month went, he said, "I don't want to sound optimistic, but we may have turned a corner. A tiny corner." Hey, let's not get carried away.

The way I feel may be temporary, and doesn't change the treatment protocol. I'll be on this drug regimen for at least five more weeks, and probably six more after that. Beyond that, I don't have a clue.

CT Bill 6200 passed into law. Doctors are now protected from censure by the Connecticut Medical Board and the Connecticut Department of Public Health for prescribing long-term antibiotics for the treatment of clinically diagnosed Lyme disease. This is great news. I wonder if all the potential loopholes are plugged. For instance, will insurance companies now pressure for censure for long-term use of Plaquenil, or Diflucan? Neither of these are antibiotics, but have proven effective against Lyme. Of course, if this happens, it'll be a giveaway that it was always about cash and not about supposed irresponsible medical practices.

I'm keeping out of trouble these days by writing. I've signed up for a writing course that I can take from home, at my own pace. Perfect for a sometimes on, sometimes off Lyme patient that has trouble going out in public most of the time. Maybe if I learn something, I can improve the quality of this blog. Wouldn't that be nice?

Thursday, May 7, 2009


The reading spot
Quick update: I seem to be getting hammered by the Plaquenil. Right at the end of week three I developed a poison ivy-like rash on the backs of my hands, arms, and other areas. And the herx! For a day and a half I had every symptom at once. WHAM. My LLMD congratulated me. It seemed incongruous until I realized he's happy because the new meds are stirring things up, proving their usefulness. The Doc mentioned that I'll be on Plaquenil and Biaxin for three more months, and asked if I was interested in moving things along a bit faster by adding Tetracycline back into the mix. It's kind of like asking if you'd jump off a cliff to feel better. Yeah, as long as I live through it. "Bring it on." So, the next month should be um, interesting.

Administrative note: be sure to check out the pictures of the barn, posted by request.

When I first became ill, and during those first horrible six months or so, I kept thinking in terms of "when I get better". As in, "Well, that project is on hold for now. I'll finish it when I get better." "I feel like crap all the time. I just want my life back."

Over time I've come to understand that it's not reasonable to put my life on hold. My life isn't gone. It's just different. Each day is another in my life, regardless of how good or bad I feel, how much or little I can accomplish. How many days (years) am I willing to lose waiting? How much negative energy do I generate by not being content with my situation? By holding anger just beneath the surface at the senseless non-medical lyme-related difficulties caused by people in positions of control that haven't a clue? [ yes, just beneath the surface ]

I still feel bad most of the time. I still can't do very much. I was able to paint some primer on those barn doors, but haven't done anything else for a week because of pain. I was able to install a new fan/light in the bathroom ceiling, but what would normally take an afternoon took a month, a little bit at a time, and I still had to call an electrician at the end because I got lyme-confused over the wiring and feared burning my house down.

The smell of spring
No matter how I feel, I still take my dog for a short walk every day at the farm across the road. It's good for both of us. We especially enjoy this time of year, not too hot, and Stewart likes to eat the alfalfa shoots in the hay field.

On particularly bad days I sequester myself deep in the house, windows closed for quiet, blinds down against the bright sunlight. But most days I'm able to tolerate at least an hour or so in the garden, sitting and reading or writing under the apple tree, or next to the pond waterfall watching the fish.

Most days I can accomplish something, no matter how small. Sometimes it's just making a meal. On better days I dream up projects - brand new ideas, well outside the gray box that is lyme. I plan them knowing full well that I probably won't feel this good for long. I'm careful not to start something big that actually needs to move along to completion. Instead I try to break up tasks into tiny bits, and do what to most folks would look like nothing, and to me is meaningful work, for which I am grateful.

Saturday, April 25, 2009

Barn doors

New doors on an old barn
Today I hung a pair of doors on the barn. I built them from scratch, out of plywood and 1-by-3 pine to close in the smaller half of the barn to be used by my son, the potter, as a ceramics studio. The larger section is full of an old VW bus with a good engine, no windows, and a family of birds nesting inside; a red wood canvas canoe upside down on sawhorses waiting for me to get well and take it to the north woods; and a riding lawn mower with two flat tires from sitting all winter with no grass to mow. My son still needs to buy a secondhand wheel and possibly a small kiln, but for now he has doors, at least.

Two weeks ago I started a new drug regimen. Plaquenil and Biaxin. Plaquenil to break up cystic lyme and Biaxin to kill it when it emerges. Plaquenil is a strange drug. It's been used for rheumatoid arthritis for 50 years, but no one knows how or why it works. It also makes you go blind, possibly, so I've scheduled an eye exam as a baseline. So I'll know when I can't see anymore. Otherwise I wouldn't be able to tell.

Another odd thing about Plaquenil: if you take it for a month, and then just stop, you have probably messed up your bowels permanently. I'm not sure I get this. But it's a long-term treatment, and I have to see it through. Should be no problem. I'm guessing I'll be on it for six months.
What's in the barn
Always hesitant to read too much into a small sample, but I think I'm improving. Now that I've said this, tomorrow will be hell. It's a lumpy ride, but there's a discernable uptrend overall.

With the warmer weather I'm spending more time sitting in the garden. Stewart, the faithful bulldog, lays underfoot, crushing the flowers and the spearmint leaves. We soak up the sun together, watch the goldfish flitting about in the pond, and listen to the buds opening on the apple trees.

On bad days I shoot at crows with a BB gun, rarely making contact, trying in vain to silence their insistent cawing, to stop the sound from boring through my brain. On good days I feed the squirrels and smile watching the large red-bellied woodpecker pecking at the suet cake. So many birds are moving north! The other day I was treated to four bright yellow male American Goldfinches, and a host of drab brown/yellow females.

Life is good, and getting better.

Tuesday, March 31, 2009

March: still sick, but improving

It's been almost a month since my last post. I think the more my health improves, the less interested I am in posting, or thinking about Lyme disease.

Not that I'm all better, of course...

I'm finished with the course of Ceftin and Biaxin. And I'm a bit confused as to what was herx and what was normal lymie-ness. The fatigue I reported in my previous post came back periodically throughout the month, as well as almost constant neck and back pain. There were a few days here and there of nasty neuro (I feel like an unhappy troll hiding under a bridge, waiting for it to stop), and some brain fade during the periods of fatigue. Still struggling with ringing ears and sensitivity to noise.

But... there were also periods, like during the last Diflucan course, where I felt pretty darn great, and am beginning to feel like my old self again, both physically and mentally. I just have to remain objective, and not be too dismayed when the lyme comes crushing back in a day or so.

Is it possible to have a "wrist herx"? Last week my left wrist hurt so bad I was beginning to think somehow I had a stress fracture. Both constant toothache-y pain, and *very* sharp pain if I so much as turned my hand slightly in the wrong direction. Screamingly sharp. I thought it was unlikely I had broken it, and figured it was either lyme-causing-tendonitis, or tendonitis-made-worse-by-lyme. Either way, I know tendonitis is really hard to heal, and takes a long time.

Well, after 3-4 days of this, and taking the occasional Tylenol with Codeine so I could sleep through the pain, it just went away. Completely. I can do anything with the wrist now, and no pain at all. What the heck? I'm happy, but confused. It's not all in my head, really! :) All I can figure is that it was a herx reaction. Many folks report joint problems, almost always knees. I've never had any problems with my knees, but early on could hardly use my hands due to pain in thumb and wrist joints. But even that wasn't nearly as acute as this recent condition.

I'm feeling increasingly like I'm in a "middle place". Still ill, still disabled, but often don't feel like it. Early on, I was so sick I couldn't even begin to think of "doing anything". Plus, I'm kind of hunkered down in the finance department, having not earned a dime in a long time now, and the prospect of reversing the disability denial merely a concept, not reality. But now that I'm getting better, I feel like using this time to do something. Anything.

The financial writing is coming along, though it'll never pay more than lunch money. But it keeps me busy.

I've always liked the idea of being able to express myself artistically, but never had any easy, innate talent, and always put off working hard at it. So, for Christmas I asked for, and received, a beginner Bob Ross oil painting set (don't laugh, I like Bob Ross :) . Now that the weather's warming up, I'm going to try a bit of oil painting. If I can relax into it, and not do too horribly, it should end up being healing and entertaining. Or it could turn out to be just frustrating, we'll see...

I felt so good one day that I packed my backpack and went for a hike! Really! I packed everything needed for an overnight (about 18 lbs.), and headed up a mountain on the Appalachian Trail an hour from home. Just packing and driving there tired me out, but I proceeded very slowly, enjoying the fresh air, and the motion of my body. I ended up only going 2.5 miles, resting a couple hours, and turning around and heading back to the car. But it was good. I just figured I didn't want to push a good thing, and that when the end of the day came, I'd be better off sleeping in my bed than on the ground. I was glad to have the gear and food so that I could have stayed out if I'd wanted. I was pretty sore the next couple of days, but I survived. It was a pretty teeny hike for a former thru-hiker, but it's a beginning. I'm hoping for a repeat soon.

So now I'm off meds for a week or so, letting the body regroup a bit. Next week I see the LLMD again, and find out what April's little medical adventure will be.

Thursday, March 5, 2009

I want my Diflucan back

Hi folks,

I'm one week into my course of Ceftin and Biaxin, and I figured a quick update was in order.

In the hiatus between Diflucan and the current meds, I experienced worsening symptoms. First, some neuro issues I mentioned in the last post, and then a couple days before I started the new stuff, crushing fatigue.

It's really hard to get across to someone who hasn't experienced this. At one point I finally got myself into the bedroom, with eyeglasses and a book, sitting in bed. Exhausted. Now, all I had to do was reach over about 18 inches and pick up the book. Not possible. So I just sat there, willing it to float over to me. Unsurprisingly, this didn't work.

This level of fatigue lasted about a week. I found it interesting (and dismaying) that it even occurred on waking in the morning after a good night's sleep. Get out of bed, and instant exhaustion.

Yesterday the fatigue lessened, but is still lurking. It was replaced by pain. The usual lyme muscle inflammation of back, shoulders, and neck that I often have, just worse. Oh well. I'll take fatigue and pain any day over anxiety and brain fog.

My doc says it's probably too early to herx from the new meds. So all this is just going off the Diflucan? I'm not sure. Sickening how fast the gains retrace. Anyway, I'm able to get some writing done - both freelance financial analysis articles, and writing code (before I got sick I worked as a programmer). This stuff becomes much harder, to impossible when the brain messes up.

Tune in next week or so for the "herx report". Ha ha.

Wednesday, February 18, 2009

A quick update

Well, I'm now a poster child for the Buhner Protocol, and not in a good way. My liver stats are looking quite wonderful these days - it took over a month-and-a-half for the spike caused by the Buhner herbs (one or more of knotweed, andrographis, cat's claw, sarsaparilla, eleuthero) used at full dose to get back in the normal range. I do believe it was the herbs, as the timing coincided perfectly, both on the upswing, and then the recovery.

Because of the happy liver I was able to complete a 30 day course of Diflucan. I didn't get as much of an obvious flare up as I expected. On the fifth day I felt it pretty strong - neuro and fatigue - but it passed. Through the month, I alternated between many good, and some VERY good days, and some not too good. The not goods' were fatigue lurking if I tried to do too much, then WHAM. And same old issues with smells, blurry vision. I'd say not as irritable as usual (my wife may not agree :).

And no crying, thank goodness. I think it's the tetracycline that does that. Reminds me of that scene from the movie Bedazzled (the 2000 remake with Brendan Fraser) where he's the sensitive guy on the beach, and every time he looks at the sunset he breaks into tears because it's so beautiful. He ends up choking out through the tears "Aw, when is that darn thing gonna set!?" Well, that's me on tetracycline :)

I am on a ten day break, and then I start something new. A month of Ceftin and Biaxin. I imagine eventually I'll return to tetracycline, and perhaps even Mepron, but for now I think my doc is exploring how I'll react to something new. There are a lot of potentially useful combinations that I've never been exposed to.

Perhaps the diflucan was doing quite a bit. 24 hours after I stopped I began a day and a half of pretty nasty neuro stuff - the anxiety, insomnia, sensitivity to smells, blurred vision. It hasn't been that bad in a month or more. Interesting... Fortunately it's gone for now, and I feel pretty "normal".

Thursday, February 12, 2009

CT Bill HB-6200

So, with the prior post as a lead-in, I think you get the picture that I'm no political activist. But I am concerned about potentially losing my lyme doc due to flat-earth "scientists", epitomized by IDSA types, who say that chronic lyme does not, cannot exist. Aside from leaving the ill untreated, what this position implies about the patients is arrogant and insulting at the very least.

I recently learned of Connecticut Bill HB-6200: AN ACT CONCERNING THE USE OF LONG-TERM ANTIBIOTICS FOR THE TREATMENT OF LYME DISEASE. It's just been proposed, and is being voted on probably next week by the Public Health Committee of the Connecticut General Assembly.

The gist of the bill is that lyme docs will be able to continue to prescribe long-term antibiotics to patients they've clinically diagnosed with lyme disease. They'll be safe from IDSA, CDC, and insurance company legal harassment.

I felt strongly enough about it to send this letter (below) as an email to my state rep and senator, as well as the chairs of the Public Health Committee, and several members who were involved in the sponsorship of the bill. I urge you to do the same. This bill is in it's infancy, and has a long road before it could become law. The IDSA-types spend a lot of time and money lobbying to have stuff like this killed. I'm hopeful that one small voice can make a difference. Here are links to all the email addresses of members of the CT House and Senate.

My name is Joe __________. I live in ___ _______, CT, and I have Chronic
Lyme Disease.

I just learned of the existence of this bill, and am writing in
support of it. This is a very important bill, and I hope it's passed
into law quickly.

Until I was bit by a tick in July 2007, I lived an active life, as
husband and father, and primary wage earner in my family. I worked as
a computer programmer for a financial services firm in NYC. In my
free time I enjoyed hiking and backpacking.

I'm slowly getting better, but 18 months later I still can't work, or
hike, and I still rely on my family to assist me daily. The sole
reason I'm improving at all is that I'm receiving long-term antibiotic

I've struggled with two issues during this period.

First, lyme itself. The symptoms are disabling and nasty, ranging
from extreme fatigue to paralysis of limbs and face, to inability to
walk, talk, think clearly. I never paid much attention, as I figured
it could never happen to me, and lyme's easy to get rid of with three
weeks of antibiotics, right?

Second, and unfortunately, worse than the lyme itself, is the
controversy surrounding it. It's not enough that we're still learning
about the disease, and how to treat it. But we also have the IDSA
proclaiming that there's nothing to learn. That lyme is trivially
easy to cure. And worst of all they're not content to let others have
their view, but instead act aggressively to bring legal action against
any doctor who retains an open mind on the subject.

Passage of this bill won't resolve this controversy. But it will at
the very least ensure that patients like me won't have their only hope
for eventual remission and healing legislated away. It will protect
the doctors who actually look at, and listen to their patients. These
doctors aren't academics working with statistics. They see very, very
sick patients every day. According to the IDSA, these doctors are
wrong to treat us. The IDSA is, of course, also saying that all these
patients aren't really sick.

It's not "drug-seeking behavior". It's not malingering. It's not
long-standing psychological issues. It's not "all in our heads".

I hear continually about the dangers of long-term antibiotics. Though
they're routinely prescribed for acne. And if they cured something
horrible, like cancer, or MS, you can bet we'd use them. Well,
untreated chronic lyme *is* horrible.

Please help. During my illness I have met many other people like me.
We aren't any different from you, except that we got sick with a
controversial disease. We just want our lives back, and to protect
the few caring doctors that are our only hope for recovery.

Thank you for reading.

Lyme wars: what can I do?

I've been reading about LymeMD's legal troubles, and it concerns me. Here's yet another case of a good doctor being brought up on frivolous charges by the state medical board (Maryland in this case). There's a very good chance that this doctor will at some point no longer be able to practice, or at least to see Lyme patients.

I've had some really excellent days sprinkled into a month of generally feeling pretty good. This is unprecedented. I still have some issues, but I feel like I'm actually getting well again. Before we break out the champagne and confetti, I do realize that my lyme doc may put me on a different drug (currently on diflucan) in a few weeks, and it could stir the lyme beasties again. I don't know how much I should expect this to last, but for now I'll take it.

So, putting those two thoughts together: where would I be today if not for my LLMD? What hope would I have for a full recovery if I called to schedule my next appointment and was told he could no longer see me? I couldn't imagine a worse scenario. Lyme is nasty. Being caught up in the middle of the lyme wars, and getting no treatment, and being told I'm crazy and just have to live with it, is a whole lot worse.

I've never been interested in political debate, and don't feel there's a lot I can do within a cumbersome governmental and legal system to effect change. But I did get a lesson on how effective one person can be years ago when I took my Boy Scout son to a town meeting as part of his work on a merit badge.

It just so happened that the meeting the month before was a big one, dealing with plans to spend a lot of money to make changes to the town green. A year earlier the side of the green with lots of shops had been repaved with cobblestones, nice lighting added, parking reworked. It was nicely done. This proposal was to do the same for the "other" side of the green, which has a different flavor - not many shops, mostly churches, law offices, etc.

There were many people that were in favor of this proposal, and a lot of planning work had been done, and presented. It was a shoo-in. This night's meeting was just the follow up, hearing one or two more details, and then the expected all-in-favor vote.

Living under the rock that I call home, I knew nothing about any of this. I was just trying to be a good dad, taking my son to a town meeting, explaining procedure to him and such. When I saw how much money they were planning to spend, I muttered "wow, that's crazy". My son nudged me and said "speak up!". So, after considering a moment, I stood up and offered my opinion, as public comments were welcome. I sat down, and some other guy stood up and said, "yeah, what he said". And that was it. Everyone came last month and spoke in favor. They didn't come to this meeting.

A few minutes later, the proposal was voted down. I was absolutely stunned. I still think it was too much money to spend for that work, but I also think it was a failure of government that my few relatively uninformed words could have such effect, especially when there were so many in favor.

I am reminded of this every time I think my voice carries no weight. And every time I drive through the village green :)

This post is already quite long, so look for another one shortly showing where all this rambling led me.

Sunday, January 25, 2009

Under Our Skin

Time for a quick update. My liver readings are back in range - AST: mid 30s, ALT: mid 80s - so I'm able to resume medication. I started diflucan a little over a week ago. This is a one-month course, without tetracycline this time. So, if there are any organ problems, it'll be easy to tell who the culprit is. I'm still only taking milk thistle and NAC for liver function, and staying off the Buhner herbs completely.

I've had a couple of symptom flare-ups since I started the diflucan, but not the severity I was expecting. Good (I'm getting better)? Or bad (drugs not working)? Who knows. Probably neither, as I still have a low-level of all the usual problems. Especially sensitivity to odors. It seems like I'm "not right" unless I'm either breathing fresh air from outdoors, or in my bedroom with the heavy duty air purifier running. And it's too cold here in Connecticut to stay outside for too long...

I saw the documentary Under Our Skin yesterday at our local library. Very good! It should help those who are close to a lyme sufferer to understand a bit better. And for those recently infected, and getting their short course of abx from their GP... well, this will scare the heck out of them. Even though I expected it, the movie had quite an emotional impact on me.

Tuesday, January 13, 2009

Waitin' around

Not much has happened in the couple weeks since my last post, except that my liver readings are slowly coming down. I need to confer with my LLMD, but I imagine we'll wait another week or so before I get back on abx, as the enzymes are still higher than my (already-high) baseline.

For those keeping score at home, the last reading was January 5th: AST 38, ALT 128.

My LLMD is familiar with my high baseline of ALT between 70 and 110, and is comfortable treating and monitoring. But since there's no apparent explanation of last month's spike (I think it was the herbs, but still don't know WHY), he wants to make sure there's nothing else wrong with me.

So on his recommendation, I saw a liver specialist (gastroenterologist), who is not lyme-literate, and brushes off my well-documented chronic lyme history. He doesn't come out and say it, but I think he's of the school where "chronic lyme" doesn't exist. He's unwilling to accept that the lyme could be at all responsible for the fairly high baseline. "It's all in my head."

So the liver doc's testing for Wilson's Disease, which I could tell was a reach for him, but he felt he had to come up with something original, and not something imaginary with a host of made-up symptoms like lyme. Waste of time. But I'm playing along, for now. I'm willing to do the urine and blood tests, and I'll even get my eyes checked for K-F rings (I need an eye exam anyway). But the only way to completely rule out Wilson's is a liver biopsy. Ha ha, no thanks.

I still don't know why, but unfortunately everything points to at least one of the herbs being the culprit for the spike readings.

Interesting thing: I've been off meds for five weeks now, and I'm feeling better than usual - about 70%. So, is it the break from meds (no constant herxing), and/or did the herbs play a part?

My friend, and fellow lyme sufferer Chronic Triathlete turned me on to this great blog LymeMD. It's in my favorite blog list on the right. It's written by a LLMD in Maryland.

One thing this doc said that's interesting (and I paraphrase loosely) is the idea that perhaps we can *never* eradicate the lyme from intracellular spaces, so drugs that bust cysts and L forms may actually "harm", as it may only be the spirochete form that causes most of the symptoms. Treat to get under control, then let sleeping dogs lie, with a bit of abx in the bloodstream to kill any bacteria morphing into spirochetes.

Gotta ask my LLMD's opinion of that. I have a feeling this is his unspoken approach as well. No cure, but shooting for long periods of remission, and minimal relapses.

In other news, my disability appeal has been denied. According to the insurance company (and their ID doctor) there's been nothing wrong with me all this time. ["There is no chronic lyme"]

Not sure where to go from here. I hate, hate trying to persuade obstinate faceless entities that have their interests above that of their clients. And talking to, and paying, attorneys is no fun either. Even though I disagree with his political views, what I need right now is an Alan Shore (Boston Legal). Someone smart and passionate, who understands that there are many lyme sufferers and literally all are being treated unjustly. And who'll take the case pro bono for a client without a job :)

Yes, my employer finally let me go. They've been patient. I've not worked since September 2007. They say I can get rehired when I get well. And ironically, this week I've felt better than ever, almost (but not quite) able to go to work. Ever pragmatic (not pessimistic), I don't expect it to be all roses going forward. But I do seem to be improving a bit, and I've been enjoying it.