Monday, February 07, 2005

Ceftriaxone Day 6: 15 to 33 percent!

Note on 2/9/05 to those who may read this later, to find out what I did. I was infused with one gram of ceftriaxone intravenously, at a hospital. Then the home nursing people came to my house the next day and taught my wife and I how to do it. They placed an IV needle with tube in my arm. We left it there for six more days and I did the infusions myself each day, at one gram per day, using premixed solutions that they provided and left with us. So that was a total of seven days at one gram per day. We may do this again in a month, depending on what my doctor says.

Let's start with the important stuff first: Mike, based on today's mission after breakfast, I am now wearing your watch and driving your second-hand, red Ford Festiva!

I'm infusing right now. I went to the neurologist's office this morning (Monday) to calibrate his hand dynamometer against mine.

The new one I bought is a different type, and it has been saying since it came on the evening of Friday, Feb. 4 that my left grip strength is 44 or 45 pounds. The readout on the doctor's was 38 on Jan. 10, and 33 on Wednesday, Feb. 2, the same morning I started the ceftriaxone treatment. But I assumed that the units were different, so I needed to compare them and get a factor.

The decline from 38 on 1/10/05 to 33 on 2/2/05 amounts to 15 percent. I don't know how to explain it, but I could not top 33.

Each time I use the doctor's dynamometer I pump it three times as instructed and read the score. Then I do this twice more. Then I do it the same way with the other hand. So you wind up with a set of three numbers for each hand. Both the dynamometer he has and the one I have are amazingly consistent in terms of the top score you can hit. You might tire yourself out and go lower, but no matter how hard or how often you try, you can't beat your top score for that day.

This morning, with some dread, I squeezed three on the doc's dynamometer. It read 44. Then I took two more readings, of 40 and 43. Then a few minutes later I squeezed my new dynamometer, which I had brought to the office, and it read 44.

The devices calibrate exactly! [2/25/05 note: This impression is incorrect. The instruments are quite different, and only coincidence made me think they calibrated. However, the strength increase was quite real.]

This means that my earlier readings of 33 and 38 on the doc's dynamometer can be compared to both the current readings it gives, and the readings my dynamometer has been giving over the weekend.

According to our objective measure, my grip strength is stronger. Just like the rodents in the Rothstein study published on Jan. 6 in Nature.

That's great news. And like the rats in the study (if I read it correctly), the effect occurred within about 48 hours of drug application. I'm sorry I did not test myself on the 3rd, but I did not have time to go to the neurologist's office to use his dynamometer (my dynamometer had not yet arrived), and the insertion of the needles that day stressed me so much that I spent the rest of the day recovering.

I have not been testing my right grip strength during this period, because the IV needle is in the right forearm, and I don't want to disturb it with muscle clenching.

If we take the 38 score on 1/10/05 as the baseline, then at 44 I have improved 15.78 percent. If we take the 33 score of 2/2/05 as the baseline, then I have improved 33.3 percent.

Either way, this is an amazing result.

I was so distracted I accidentally injected myself with two cc of heparin instead of one. But I seem to be OK. I did call the home nursing people, and the operator said to call the pharmacist. That's not the right answer. The right answer is: "Here is the supervising nurse today, who will help you." That's the first time the home nursing people have sucked. Up till now they have been great.

Now, being a skeptical mind as I am, I have been trying to find a way to explain this improvement as a combination of psychological stress, and inconsistent technique with the dynamometers. And I think it can be explained that way, but not in a way that fits with my experience.

This is why they do double-blind, controlled studies of groups of patients, to rule out the Maybe Scenario to their highest statistical satisfaction.

And I'm just one guy, and my body, and my ALS, and its rate and severity, are no doubt different from yours, but to me, for my purposes, this is an objectively measured, unexpected increase in grip strength.

I feel just as weak and stumbly as before, but this therapy looks promising to me. I am going to ask my doctor to try two or more grams a day for seven days, in one month's time.

And yes, I am familiar with the Awakenings scenario, where the patients get better for a while, then revert. I'm not about to think of this as a cure. And I do want to see what the data says next time. But unless it has some delayed boomerang effect, it may be adding time to my clock.

We Shall See.

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