Month 8: Still worse

So I was curious what my CRP level would be last week, 9 weeks after
my last dose, which caused nausea for 3 weeks straight, instant liquid
diarrhea for a week, and my bowel symptoms have regressed since then.
So, the bad news, is normal is <4, mine was 14. So, I’m not in
remission anymore, though even when it was almost normal, I certainly
didn’t feel in remission.

I never took my CRP the first 3 months after initial infection, when
my ankles were ballooned to twice their size, I could barely walk, I
had terrible diarrhea. It could have been 3 X that, or more. I only
waited until the arthritis was totally gone, symptoms had improved to
the point of not getting up much in the night, and a few solid stools.
All this was lost once I added the last few cohorts.

So after crying for two days and nights straight, I’ve been thinking.
Had I never took that blood test at 4.5 months, I wouldn’t have
presumed I was in remission, I would have thought I was much, much
better, but still had far to go. I was aiming for the 11 month
remission mark, after all. Instead, I was shocked in the doctor’s
office. I’m in remission? How come I feel like shit? That was a few
days after the last dose, so I was having liquid diarrhea, and
expected the blood results to be very bad, reflecting larvae in my
blood stream.

I would have been way more prudent with diet, and I would have had
more patience with the year’s therapy. Although, I may have made the
mistake of adding more larvae, thinking that I still needed more.

If I could go back and do it all over again, I would have waited for
the full 4 month mark and see what 10 larvae could do, without adding
any. Perhaps 6 months. If I remember, the Australian proof of
concept study (which I totally disregard, but cling to now in
desperation), the 5 who got reinfected at 6 months did suffer for
quite a few months after that, finally getting better by month 11. So
it took 4 months the first time to return to baseline, another 5
months from the second dose to recover. My sensitivity is obviously
huge, so now I’m wondering what was the impact of adding a few larvae
every few weeks; the cumulative effect, then finally slamming that
last dose, perhaps it was just too much, and now I’m suffering the
deleterious effects.

Of course, my biggest fears are somehow the added larvae displaced the
first, so I am left with not enough. Or worse, my immune system has
overriden the worms’ effects, and all is lost.

What doesn’t make sense to me, is you would expect the bad results to
happen sooner after one was once infected, not delayed. Perhaps for some
of us, the effects of reinoculation are delayed instead? God, I hate
having no data to refer to.

All I can do at this point is wait. This last inoculation isn’t
acting like the first. With the first, arthritis came at week 3 and
was gone by week 10. It was horrible. Diarrhea started day 3,
severe, went until day 10, then was on and off until about 16 weeks,
and things were improving, but I started adding more larvae at week
10. None of the added cohorts caused problems, except on my period,
until the last one…

This time, I had instant diarrhea again, but the arthritis didn’t kick
in until about week 6 or 7, and is still present, but is about 1/80th
of the severity of the first time around. Mild nueropathy has
accompanied the mild arthritis. I also was an emotional wreck,
although with good reason, around weeks 3-6 with this last cohort.
Bowel movements continue to fluctuate; full blown diarrhea to a few
semi-formed stools, mucus is much less than it used to be, but
obviously, my inflammation is much more. I’m still 152 pounds though,
so I’m holding on to my weight. My skin looks clearer. And little
fuzzy hairs that have been sticking up, indicating breakage of my hair
probably from malnutrition (and I’ve had this now for the last 3
years) is growing out smooth, so obviously, I’m absorbing better, and
I have way more energy then I did the first few months for sure. And
I’m eating things that would have sent me into a full blown flare, but
they’re not, though now I’m going to stop being so risky.

I don’t know what to make of it all. I have been such an anomoly that
I have no one and nothing to compare myself to. It doesn’t make sense
that the worms would work the first time, enough to reduce my
inflammation to near normal, and then they wouldn’t. So it HAS to be
the reinoculations (I hope, I hope) but to know for sure, I just have
to wait.

For the truly sensitive, I would be very wary of reinfection. If I
could have just had patience, I may have been in a much better place
right now.

It is no fun being one of the first.