Running the Numbers (June/July, 2009)

I have entered another two month’s worth of numbers into my stats program and analyzed them. I had my best month ever in June, and it is easily visible in the chart included below.  I had many days with only one or two symptoms, and felt much better, than I have since I became ill. The mean number of symptoms per day was 4 in both of these months, as opposed to 8 or more in past months.

Partly because I felt so good, I started sleeping less than I should so that I could start ramping up my work (6-7.5 hrs sleep). I should note that in July I was a bit more variable than June, with night sweats and headaches for almost a full week starting around the 6th and ending on the 12th. Also, perhaps due to lack of sleep, the week of the 18th was a bit worse with two bouts of severe fatigue on separate days and a lot of napping.  In general, July was not as consistently good as June, but the average was still excellent. My wellbeing score is the best it’s been since last August; 0 or higher every day in June and most in July (trend is highly significant)

Here is an excerpt from my symptom graph showing the wonderful dip in June:

Recent Symptom Summary
Recent Symptom Summary
Most Common Symptoms:

  • Headaches: I had one about every other day in June, half as often as in the previous two months. In July I had headaches on 20 days.
  • Napping: I napped about once every other day, half as often as in the previous two months
  • Fatigue: I marked fatigue about once every 4th day, less than half as often as in the previous two months
  • Glands: The lymph nodes under my chin were swollen almost every day
  • Facial tingling: In June, about once every two days (more than normal), back to normal in July (3 days).
  • Dizziness: About 3 out of every 4 days. Mild and frequent. Slightly less (1 out of every 2 days) in July
  • Ringing in Ears was gone in June but back to almost every other day in July.
  • Shortness of breath; neck pain; light sensitivity; back pain; and cognitive impairments went down to <= once a week
  • Other symptoms were gone entirely or almost entirely.
  • Immune: on the decrease; even sweats (which had increased in April). Highly significant overall trend.
  • Pain: Highly significant decrease in all pain symptoms, including headaches, back pain, etc. FINALLY!!!
  • Cognitive symptoms: continued decrease
  • Nervous symptoms: continued decrease

Some things to note about this graph:

  • Thickness 
days symptom
 30 ,min is 0). Thus, swollen lymp nodes and headaches occur about half the time, while tremor and sound sensitivity occur only a few days a month.
  • This chart indicates the most objective thing I have, the number of days on which a symptom occurred. It does not show severity. In June and July even frequent symptoms were less severe, a wonderful change in and of itself.

4 thoughts on “Running the Numbers (June/July, 2009)

  1. Hi there – I hope you are the person I ran into last month in Dr. Cameron’s office. You quickly showed me your computer graphs when I asked for the symptom sheet that we fill out each visit.(I am sorry I didn’t talk to you more – I remember you telling me you were on pennicilin. Last month he gave me Mepron – what patients with malaria have. My system could not tolerate it – severe vomiting, diarreha, etc. Last week Dr. Cameron gave me 3,000 mg. a day of pennicilin. I have not read your blog, but please tell me how long you have been on it and how you feel. I also remeber you me telling me one day you just woke up and felt better. I am hoping that day comes soon.

  2. I am the person you met. I was on Mepron for months — didn’t affect me negatively though. Now I’m on the Pen VK like you. I’ve been on it since February 09, and yes, June 09 was wonderful (but I haven’t continued at quite that level, though I am still much better than the bad times last year).

    Anyway, I think each person is affected very differently by the antibiotics, and the right combination for one person may not be right for another … which is why we need folks like Dr. Cameron who have years of experience to base their treatment decisions off of.

    I hope the penicillin helps you! Please feel free to contact me again if you have questions or thoughts I can help with.

  3. how does Pen VK help? I’ve had Lyme for at least 6 years but was only diagnosed 3 years ago. I have been on and off of long-term antibiotics and am currently back on amox…. i was on malarone as well but i was throwing up all the time, so i went off of it. i’m considering going to IV abx because the oral abx are killing my stomach… thoughts? you sound like you’ve had a lot of experience!

  4. I don’t really understand how each of the antibiotics helps, which is why I went looking for an expert who had a lot of experience with Lyme patients. My guess is that the details of what to do vary for each patient, and timing matters as well. Also some people tolerate some antibiotics more than others and so on … I’ve been very careful to use a lot of probiotics with every antibiotic I took though, including sacromyces (to protect my existing gut flora) and yogurt/a variety of other probiotics (to help replenish stuff as needed).

    In the end though, even probiotics won’t overcome a drug that causes a really bad reaction. For example, when on Ceftin, I had diarrhea 4 times a day… had to stop taking that one.

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