I’m late in my 3 month report since I’ve been in neurological hell these last
few months. After getting out this and last year’s calendar, I discovered
(after the fact, unfortunately) that both episodes of nuerological weirdness
happened after a series of iron shots. Of course, they’re not supposed to cause
numb hands, dizziness, pin-pricks in the feet and hands, vein burning,
twitching, etc., so I get to be the medical mystery yet again and walk around
like the f***ing lab experiment that I am. If it is the iron shots, it took a
full 4 months to go away last year, and I had more shots closer together this
time, so I get to wait and suffer for a while.
The good news, is I went to the big guns, UCSF neurology department, (the
saddest waiting room you ever did see. I wanted to shout to the 40+ patients in
wheelchairs, shaking with parkinsons, etc. that there was a simple worm recipe
for their success, but I figured they might accompany me quickly to the
elevators). So I held my tongue, and met the head honcho,
“So you’re the hookworm patient!” I’m so notorious now at UCSF. Somehow
growing up, I anticipated my fame being tied to my prodigious talents, but I
digress.
They found nothing on the physical exam. Being quite a few inches taller than
the doctor, and having given up my car last fall, my muscle strength suprised
him and all physical exams came back normal. Blood tests normal. All that’s
left is to get an MRI and nerve conductivity test to check for brain
inflammation and tumors (lovely) and peripheral neuropathy, but he says he
expects them to come back normal. He said I needed “tincture of time” to figure
this out since there were too many confounding variables. If someone else says
I am in “uncharted immunological territory” yet again, I may scream.
I might add, that the year before hookworms, while experimenting with LDN, I had
a similar episode, though it presented with a rash all across my butt. That
time, I was also on sulfasalazine, so it was thought to be an acute allergic
reaction to sulfa, but when I stopped the sulfa, I regressed, necessitating
stopping the LDN, so I never did find out which one was the culprit. So there
is still a possibility that I have some gross immunological defect that when the
Crohn’s is put in remission, my nervous system goes awry, but it doesn’t fit
into the picture last year, as I was dosed with hookworms late December and in
remission by April, and didn’t start getting nuerological symptoms until the
summer, when the Crohn’s was regressing and after the iron shots began.
So I wait. And worry. And try not to. No more iron shots, to say the least.
On the Crohn’s front, these 10 little hookworms have done marvelous progress,
all starting from minute 7. I was high for a week, my pain dropped off by week
4, a little regression weeks 6-8, then I’ve settled into a happy place of
sleeping through the night, mostly solid stools, eating like a released prisoner
who’s only had bread and water for 10 years. (I know, against popular advice,
I’m enjoying Thai food, Indian food minus the pulses, tacos, cookies, toast
every morning, the occasional coffee, and to my utter and complete ecstasy,
cherries.) My latest CRP (done 2 weeks ago) was normal! Hurrah!
I’m not perfect; I still have mucus and urgency. The day after I ate cherries
and then walked to a cafe and had coffee and arrived home with my daughter and I
having to use the one toilet in our house I had a bit of a disaster in my pants,
but so far that’s the worst incident.
I thought I’d take advantage of the mess and do a smear under the microscope,
but all I saw was a very interesting onion skin, so I have to admit my
microscopic work leaves much to be desired. When I can feel my hands better, I
will embark on trial #3 of egg counting.
I’m kind of amazed that such a small amount of worms could do such wonders. I’m
just going to wait at this point and see if the nueropathic symptoms slowly
abate like last year. I may then experiment with adding more worms to see if I
get increased benefit. For now I’m trying to just enjoy my garden and my
children and the lovely offerings of the copious ethnic restaurants I’ve had to
walk by and smell for a decade in want.
On another note, I was interviewed for a CBS news piece as
was my GI at UCSF. Considering that in 2007 I was the first person to inform
him about hookworms, with his response being, “who knows what you’ll get in
Tijuana?” and now there are 5 of us “worm patients” trying this, I consider this
a great step forward. Although my constant nagging to get a grant to study us
or at least help us navigate through worm attrition, egg counting, etc., has
come up short. Won’t give up though, as I was voted “most relentless” in high
school.
If the nuerology fades away and I manage to up my worm count and actually hold
on to them longer than 6 months, I might relax and consider this a great
success.
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