Sunday, November 23, 2008

General update

White Breasted Nuthatch

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

Financial concerns

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

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

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

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

Recent medication outcome

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

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

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

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

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

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

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

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

The Holistic approach

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

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


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

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

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

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

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

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

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

Tufted Titmouse

Dark Eyed Junco

Downy Woodpecker

Black-capped Chickadee


mrsj said...

Hi, I just discovered your blog... and your beautiful pictures! I can't wait to be back home near the Appalacias for a visit in a couple of weeks...