Tuesday, January 15, 2008

Treatment Update

Hello, I'm here!

Sorry I fell into a black hole for awhile. With my grandfather's funeral, the holidays, and a severe crash that lasted for three weeks, I barely had the time and energy to get through each day for awhile. But I'm happy to say that with the new year came a new run of good health, and I've been doing well the past two weeks.

As always, it's hard to keep an accurate perception of things while in the midst of a crash. During the holidays, I was feeling pretty down, certain that none of the effort or expense of treatments this past year has had any effect at all. Lab tests taken in December showed little change, and my doctor in NYC sent me the results with a note that said, "About the same. Continue treatment." I was pretty bummed.

Once I started to feel better, I decided to take a more analytical approach (watch out, here's the engineer in me coming through again). I track how I feel each day and the amount of exertion and stress I had. I just use simple number ratings, from 1 to 5, that I jot in my journal at the end of the day (and, yes, I graph them!). So I let the numbers tell the story.

It turns out that, although I had some really great months this past year, the overall average was about the same as it has been for the past 6 years. That was kind of depressing, so I decided to look at my level of exertion. That graph went steadily up from January through the end of the year. I had a couple of bad crash months when I wasn't able to do a lot, but overall, I am able to be more active on most days than I was a year ago. This is exciting!

I also noticed that I did especially well during the three months that I took Naltrexone (which is supposed to help increase Natural Killer (NK) cell function). So I asked my doctor if I could try that again, and she agreed. She said many of her patients feel better on Naltrexone, even if the lab results don't show it. It might have been coincidental, but I'll try it again and see.

So, here's the basic summary of my treatments this past year:
  • I took a low dose of Valcyte for two months (Jan - Feb) but quit it because my white blood cell count dropped so low.
  • I took Valtrex (sometimes 500 mg per day and sometimes 1000 mg) for 9 months and am still on it (downsides include the expense and sometimes GI problems).
  • I took Naltrexone (3 mg per day) for 3 months (Aug - Oct) and felt pretty well, so I'm going to try another 3 months of it.
  • The results? I still feel about the same on average, but I'm able to be more active. That means that I'm functioning at a higher level than a year ago. I guess I feel about the same because as I've improved I've automatically increased my activity level.
So, I'm quite optimistic about the new year. I'll let you know how the second round of Naltrexone goes, and I'll try to get back into the blogging habit.

Now, I'm heading outside to throw a football with my son.


Anonymous said...

That last line made me SMILE! I'm glad you started tracking things, because it makes sense that you would automatically increase your activity. Here's hoping the trend continues!

Sue Jackson said...

Jennie -

That made me smile, too! So nice to be able to do more with my kids these days.


Unknown said...

I was diagnosed with CMV 10 months ago by Dr. Martin Lerner in Beverly hills Michigan. He believes that most Chronic Fatigue syndromes are virus related and he specifically tests for CMV< EB, and HV6, Lymes. With extreme fatigue, muscle aches, and pains, lack of sleep, lack of appetite, nausea, etc. I saw him at a 3.0 energy level and am now at a 4.5 after six months of Valcyte. google his CFIDS site and read about his latest research and published findings so that your local doctor can run the needed viral blood work and also the treatment. You do not have to go to him now..he is 82 and has spent his life along with several others including Dr. Montoya out of NY. I have started my own blog on blopspot..JewelsInLife.com CMV

Sue Jackson said...

Thanks for the comment, Julie. I am very familiar with Dr. Lerner and his work. My own viral loads are fairly low, so antivirals helped me a little bit but not a lot. I am so glad that he was able to help you!