Hello to All,
I neglected my blog and email this summer. I suppose part of this is because I just wanted to enjoy myself and forget about being sick for a while (as much as that is possible). The other part is because I feel stuck, unmotivated, and frustrated. I’ve done hundreds of hours of research and feel that I know almost everything there is to know about this disease. I’ve been through almost 2 years of antimicrobial treatment and 1 year of serious detox before that. Though I’ve made a number of improvements, I’m still not well. In summary, my problems below the neck have improved considerably, but certain neurological problems have worsened.
I thought that this would be a good time to take stock of my healing progress. Here is the status on my symptoms:
- Headaches: lessened in severity and frequency, but still a problem 10 – 15 days per month
- Joint pain: gone
- Muscle pain: improved – occasional pain in right side of neck and shoulder ( I love Cryoderm topical for this)
- Irritable bowel: gone, or perhaps just being managed with magnesium and fiber?
- Depression: intermittent and milder (managed using exercise, 5-htp, l-tyrosine, and l-phenylalanine)
- Fatigue: improved from the past two years, but still a problem
- Vulvodynia: gone for months now
- Tooth pain: improved but still flares occasionally
- Food intolerance: much improved
- Chemical sensitivities: improved but still a problem
- Heat sensitivity: improved but I have to be careful
- Light sensitivity: started in 2011. Improved since then
Problematic or worsening symptoms:
- Dizziness/light headedness: a daily problem for me. This started with an episode of vertigo in 2011.
- Heart palpitations: a new problem that developed in December of 2012
- Anxiety: still a big problem, (especially when I get dizzy I tend to panic)
- Cognitive dysfunction: still a problem, especially decision making, organizing, and short term memory
- Insomnia: worsened in December
I summary, my symptoms still wax and wane. I have more pain-free days with good energy, very few days where I’m completely miserable and dysfunctional, lot of days where I just feel crummy and tired. The dizziness is my most disabling symptom at this time. I frequently cannot drive because of it.
So what the heck is going on?
My doctor ran some blood tests: ferritin, thyroid, thyroid antibodies, the usual blood work up, and a nutritional test called a Spectracell. My ferritin (iron storage) is rock bottom at 4.0, my thyroid is low, no thyroid antibodies (hurray!) and I have a few other abnormalities. I await the results of the Spectracell.
My new treatment plan:
- Serious iron replacement
- Boost thyroid with SSKI iodine. If not helpful, switch to thyroid meds
- A new antimicrobial regimen using a tincture called Quintessence by Bio Pure. This contains herbs popularized by Stephen Buhner, including knotweed, stephania, andrograhis, red root, and smilax.
- Peony for blood
I’m starting very slowly, one herb at a time to determine tolerance. Wish me luck.
Until next time,