Lyme Chronicles

The IDSA shows their true colors -- once again

2010-02-04T10:30:00.002-05:00

I just received an email update from CALDA. It seems the IDSA has trouble following rules. You can read about it here:
http://www.lymedisease.org/news/lymepolicywonk/336.html.

They ignored the voting requirements that they agreed to in the antitrust settlement with CT Attorney General Blumenthal. Instead of voting on each guideline, requiring a supermajority to keep it, they flipped the logic to require a supermajority to change the guideline. It's a little more complicated than that, but is well explained in the link above.

This kind of manipulation of the truth is exactly why the IDSA and its guidelines are such a thorn in the side of Lyme patients. I'm disappointed, but not surprised, that this group which holds so much sway in the medical community cannot be relied on to act and with integrity. The IDSA is building a very clear history of bad choices, and of not acting in the public's interest.

The Attorney General has requested that the vote be re-done before the final report is drafted. We'll see if they comply. If they do not, and our interests are once again bulldozed under arrogance and greed, perhaps at least now the average family doctor will look with a healthy skepticism on the IDSA Lyme guidelines.

As a Connecticut resident, I just sent a short email thank-you note to AG Blumenthal, and I suggest you do the same. attorney.general@po.state.ct.us

Quiet time

2009-12-04T00:13:00.003-05:00

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.

Your input urgently needed

2009-07-19T00:35:00.006-04:00

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.

More garden photos

2009-07-18T13:43:00.010-04:00

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.

Enjoy.

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!

The pond garden

2009-07-17T11:51:00.020-04:00

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

Goldfish

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

Pictures of the garden

2009-07-16T13:03:00.032-04:00

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.

On the roller coaster again

2009-07-15T17:41:00.010-04:00

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.

Definitely getting better

2009-06-07T16:59:00.003-04:00

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?

Acceptance

2009-05-07T13:36:00.011-04:00

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.

Barn doors

2009-04-25T00:38:00.015-04:00

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.

March: still sick, but improving

2009-03-31T14:16:00.004-04:00

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.

I want my Diflucan back

2009-03-05T18:59:00.002-05:00

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.

A quick update

2009-02-18T15:15:00.003-05:00

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".

CT Bill HB-6200

2009-02-12T11:02:00.002-05:00

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.

Hello,
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
therapy.

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?

2009-02-12T10:21:00.002-05:00

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.

Under Our Skin

2009-01-25T13:46:00.002-05:00

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.

Waitin' around

2009-01-13T01:34:00.003-05:00

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.

Feeling better

2008-12-31T18:14:00.005-05:00

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!

One step forward, two back?

2008-12-23T00:54:00.002-05:00

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.

Supplements

2008-12-11T18:47:00.003-05:00

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.

Still waitin' on the liver

2008-12-10T23:29:00.004-05:00

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.

Misbehaving organs

2008-12-03T15:44:00.003-05:00

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.

Thanksgiving

2008-11-27T15:21:00.005-05:00

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.

Squirrels keep me busy...

2008-11-26T16:02:00.002-05:00

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.

General update

2008-11-23T11:00:00.000-05:00

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