Wednesday, December 31, 2008

Feeling better

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

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

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

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

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

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

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

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

Tuesday, December 23, 2008

One step forward, two back?

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

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

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

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

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

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

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

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

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

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

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


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

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

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

Merry Christmas.

Thursday, December 11, 2008

Supplements

I could open an herbal pharmacy

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

Just thought it might be interesting to some folks.

Wednesday, December 10, 2008

Still waitin' on the liver

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

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

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

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

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

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

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

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

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

Wednesday, December 3, 2008

Misbehaving organs

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

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

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

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

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