Thursday, October 16, 2008

Symptom tracking

My symptom chart (click to enlarge)
Zero: feeling good      Three: feeling horrible
I've begun keeping a simple spreadsheet and chart of my general groupings of symptoms:
  • Neuro "faded-ness": easily startled, sensitive to light, sound, smell, very slow brain processing, inability to filter multiple input streams, like someone speaking to me while the television is on, loss of coordination and dexterity, ringing ears.
  • Neuro "jangled": irritability and rage, blurred vision, insomnia, low-level unfocused anxiety, ringing ears here also.
  • Fatigue: zero energy, too exhausted even to think, or to get off the couch. Constantly leaning or sitting, very slow walking.
  • Pain: usually consists of headache, neck, back (large muscles), and occasionally hands and feet.
  • Numbness: tingling and lack of feeling in hands and feet, and also various involuntary twitches, that sometimes last for a day or two.
I simply fill in each day, each symptom group, with a value from 0 to 3. Zero is "feeling great". Three is rare, and horrible. (Hmm, I guess zero is pretty rare, too) I like the visual aspect, as it allows me to see at a glance, and to show the doctor, "how I'm feeling". I got the idea of the chart from fellow Lyme sufferer Chronic Triathlete.

This particular chart begins when I started on the Mepron/Zith combination. And I just fudged the early values, as I didn't have the chart then. But it's easy to see the spike in week three (ugh), and then some respite. And then a haphazard return of symptoms. Not sure how much significance to attach to all this, but the picture helps to put it in perspective.

I've got a new symptom, that I'm not charting yet. Memory loss. Doctors asked me about this before, as it's a common Lyme symptom, but I never had a problem with it. Now I'm not so sure. In just the past few days there have been several situations where I draw a complete blank. Like what did I eat today. I remember some of it, and know there was something else, but it's just GONE. And today I noticed in my day-by-day pill container that I'd only taken one zithromax yesterday, instead of two. I'm supposed to take one in the morning, one in the evening. What bothers me is that I have absolutely no recollection of taking them or not. Usually there'd be a teaser of memory that would allow me to piece events together, but this is just a blank. I'm a bit surprised that I'm still developing new symptoms.

By the way, I just viewed Chronic Triathlete's latest post. It's an informative video about the lyme spirochete that you may want to check out.


Andrea Runyan said...

Yeah, I've had memory loss too.

I've also been calling things by the wrong word. It's pretty funny! I called the bookstore the grocery store, said my boyfriend's beard was "touchy", and said my fleece sweater was a "foam sweater."

The Buhner protocol has some good herbs for mental symptoms, like Smilax (Sarsaparilla) and Huperzine A. Do you have the book (Healing Lyme)? It has some sections on treating mental symptoms.

Joe said...

I keep thinking of the bad joke that I think I have memory loss, but I forget.

Yeah, the word substitution thing is odd, and very specific. It's like a whacked out synonym-finder. And what's more, you know it's happening, but can't do any better. I was trying to say "the medical community" and all that came out after several tries was "the medical, um, bunch". And, yes, it is pretty funny. Especially "foam sweater", ha.

I've just read Healing Lyme, and am waiting to receive the five herbs I plan to start with: andrographis, cat's claw, knotweed, smilax, and eleuthero. I want to start with those, ramping up gradually, and then may consider adding other parts of the protocol.

I have a couple of Buhner questions for you - I think I'll post them as a comment on your blog instead of here (hopefully that's blog courtesy?)


Geophile said...

Good luck with the Buhner protocol! It was intense for me when I started it but maybe the fact that you've been on abx will mean you won't herx as much on the herbs.

Joe said...


Thanks for your comment!

I see my LLMD tomorrow. I've done 5 weeks tetracycline, and now 6 weeks Mepron and zithromax. I expect he'll have me take a week off, do blood tests for baseline organ function, and start on .... who knows?

I figure he'll want me to wait for the blood test before I start the herbs. And then I'll be herxing like crazy on the new abx - at least that's what usually happens. So, the new abx and the herbs might floor me for a bit, but hey, it means bugs are dying.

I say this now - wait two weeks for all the whining to start :)