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Back in the hospital again.  Two new small rectal abscesses.  What the hell is going on?  I never had abscesses, fistulae.  Are the hookworms doing anything negative since they are unable to do their positives whilst on antibiotics?  My GI says if the infection doesn’t clear in 2 weeks, then the only option is a colectomy or temporary one.  Um…what?  The rest of my colon is inflammation free for the first time, my ileal-cecal valve hasn’t had activity for years, it’s all focused right at the end of the sigmoid and rectum.  I’m not going to cut my entire colon out because the end is infected…and if the infection clears, he wants me to do Tysabri, since Humira made me worse so Cimzia probably won’t work, and the only other option is another biologic being used off label for psoriasis.  Carries the same infection and lymphoma risk as the other biologics.  Tysabri doesn’t carry the infection or cancer risk, but you have a 1 in 1000 chance in getting a fatal brain infection.

Aren’t my choices lovely?  Life offers such wonderful crosswords.  I can’t get the worms to work until I’m off antibiotics.  I can’t get off antibiotics without developing more abscesses.  I could be hopeful, get the infection cleared, temporarily use Tysabri to keep the inflammation down (I’d rather die in 2 weeks then have a long, drawn out death from lymphoma and as a gardener, I’m constantly getting scraped with dirty wounds. ) then reinfect with a larger quantity of worms, come off the Tysabri, and never, ever let myself run out of worms again for longer then just a week or two.

Anyway, I thought I’d share a song with all of you struggling with similar decisions, for everyone who’s ever had their hopes dashed time and time again and had to carry on.  The camera work and recording quality is terrible, but it’s all I could do in the hospital.

Enjoy.

 

Just did an egg count: 550 epg.  Many eggs outside the grid (19!) so nice active population.  Which means the hookworms survived the IV antibiotics Flagyl and Cipro, plus a few days of oral, then 3 weeks of Augmentin, another antibiotic, and all the miscellaneous painkillers, CT scans with contrast, etc.

And I’ve been doing a lot better this last week.  I’m sleeping through the night without having to get up to use the bathroom.  Stools are magically solid each time, with little to no mucus, and no blood.  I’m going about 3 times in the morning, and maybe another one in the evening.

Still have pain in my rectum, still not right all the way.  I find out next Monday exactly what’s going on as I have an MR enterography scheduled.

Could the antibiotic/probiotics be working well?  (I upped my probiotic regime after starting IV antibiotics.  I take s. boulardii and VSL #3, 3-4 times a day.)  I’m also taking 4 sulfasalazine a day without issue.  (Except that I’m getting sunburn very easily and have some tinnitus.)

Today is my birthday, and I thought I’d be sicker then this.  But I’m pleased to have solid stools coming out, and even though I’m itchy with yeast and hemorrhoids, I am tolerating more foods and will be enjoying a flourless chocolate cake slice this evening with Coconut Dream ice cream.

I also should add that I started drinking a little raw milk every day.  About 1/4 a cup, and I usually drink it with one dose of my probiotics.  A good friend of mine with Crohn’s swears by it and has better, more immediate efficacy then he got on the hookworms, which he lost after about 9 months.  It’s been nice having a  little in with my black tea in the morning….yum.

So are the hookworms finally helping, was it all the antibiotics/probiotics?  I guess I find out on Monday what’s really going on, and then I get to decide my next move.  (Should I sit with what I have now, go on Cimzia, try human whipworms…oh the choices in the Crohn’s disease arsenal…)

Off to soak in hot tubs, get a massage, and plant sweet pea flowers.  Life is finally good, I’m getting more energy, back in the garden, biking again, building my muscles back from the atrophy of the hospital.  Let’s see if it lasts…

 

Sometimes I have to write about the good times.  This blog has too much negativity it seems.   Yesterday, after sleeping through the night and having good dreams, I woke up to a solid bowel movement.  Granted, there was blood when I wiped, and it hurt coming through, but to have a solid bowel movement is such a joy.

I felt so happy yesterday, no nausea, some energy.  I went for my one hour walk, on the beach, besides the bluest ocean I’ve seen for days, the first day after a storm, clouds billowing out beautifully.  I was still a little loopy from the Benedryl I’d taken before bed (I seem to get Benedryl hang overs), but it just added to the mystery of nature. The ripples on the waves as they’re kissing  the sand is even more impressive when a little wacked out on Benedryl. Read the rest of this entry »

I’m going to take a break from blogging for the summer.  I just want to have some time away from thinking about worm therapy, and need to give the new things I’m doing some time to assess before writing about them.  I’ll still take comments and answer questions, so keep ’em coming.

My action plan:

15 new hookworms

SCDiet (mostly)

l.glutamine/l.arginine 4 g/1g

reservetrol 150 mg.

Udo’s Choice Super Bifido Plus probiotic (2 caps a day, working up to more) +

Udo’s Choice  Super 8 Hi-Potency Probiotic (1 cap a day, working up)

Fish oil: 3000 mg EPA/DHA (Nordic Naturals Ultimate Omega)

Vit D: 7000 – 10,000 IU a day

Magnesium glycinate 350 mg. (about all I tolerate before getting loose stools)

magnesium chloride baths: 2 a day (this is helping with the magnesium deficiency symptoms, thank God!!)

multi vitamin + extra Vit A (since I am low in this)

meditation (1 -2 X a day), lots of sun, exercise, and prayer

I had an MR enterography done recently.  It showed mild inflammation in the ileal-cecal valve with minor scarring, a very inflamed sigmoid colon, and my first ever fistula, going from the colon to an ovary.  Very disappointing.  So though the hookworms have helped fabulously, the wait to reinfect (I went 9 months this time) led to some pretty bad inflammation.  My GI said the entire wall had eroded through, which is what led to the fistula.

Whipworms may help more, but AIT decided not to offer them to me due to anger about some of these blog contents.  I may get access to them from another source down the road.  But for now, hopefully the above plan will help things heal.  Enjoying the summer bounty, the fruits of my trees in strict moderation, unfortunately (will a summer ever come where I can eat my plums with abandon?)

I hope everyone else has a much easier time with helminth therapy.  It has not been a fun road for me, though I am grateful for the opportunity in trying them.  Hopefully good days are to come.

May all of you with Crohn’s find relief.  Here’s a prayer for your suffering: may you find what you need to get well.  May you live pain free and free from fear.  May your meals be joyous and deprivation be an unknown concept.

Finally, please pray for all of those people suffering terribly from this disease. I am not that religious, but prayer has been shown to work, and it’s cheap and easy!  For everyone who reads this, send a silent vision of wellness for humanity.  May we all return to a perfect state, and send our suffering to the wind, to be whispered then forgotten.  Peace to all.

I did another egg count; my old way (which I now realize is wrong) was to count all the eggs I saw, whether in the grid or not.   This egg count = 1300 epg, which is similar to what I’ve been getting since reinfecting with 10 hookworms last September.  The bad news, is the egg count hasn’t gone down at all, so my regression isn’t due to any worms dying, or loss of fecundity.

But I did a much more thorough microscope evaluation this time, and 12 of those eggs were out of the grid.  So my real egg count would be 700 epg.  Which makes a lot more sense worm-wise, since I’ve been wondering how my egg count could be so high for such a small amount of worms.

The Nottingham allergy trial gave everyone 10 hookworms and did quantitative egg count in all 15 participants.  2 didn’t show an egg count at all, and the other 13 had from 90 – 200 epg.  Another study, which followed one person infected with 5 parasites over the course of 17 years, estimated that the average egg count for a single adult female in the prime of her life was 50 epg.  So a count of 700 epg would assume 14 females.  My first counts of 800 epg after the initial 10 worms could have been more like 400 – 500 epg depending on how many eggs were out of the grid.  So I may have gotten a disproportionate amount of females, or this is just the margin of error involved in the process.  I know egg count isn’t definitive of population, since the egg output is supposed to peak at 6 months, and decline more significantly after a year of so.  Also, many texts I’ve read said that Necator lives an average of 2 years, but can live up to 17, but most likely, every year, worms are dying or just moving into middle age.  Do female worms go into menopause and stop egg laying?  Does it matter?

A light infection is considered < 2000 epg.  I was getting a little concerned, when I was getting 1400 epg, thinking, God, I’m going to move into a medium intensity infection, which is where the iron deficiencies usually strike, and since I’m already dealing with iron and magnesium deficincies, what’s it going to be like adding more worms?  Both times last year, my Crohn’s improved while my mineral deficincies got worse, but the first time, I got a series of iron shots that probably threw the low magnesium even lower, and the second time, I got pregnant, which also uses up a larger amount of minerals.  Of course, then the miscarriage, so I’m limping along trying to up my mineral consumption, while still losing it from diarrhea and menstruation every month.

But I feel bolstered that I have plenty room to add and will still be in the low intensity infection range.  But I wonder, for those getting 50 worms, what their egg count would be?  25 females would be about 1250 epg, so it would still be in the low intensity infection range.  And I wonder if we need a medium intensity infection to stay in remission?  Would I not have these drops of efficacy if I hosted a higher number of worms?

Oh God, too many unanswered questions.  I wish I knew the protocol that would work the best and leave me suffering the least.

Back to the microscope, hoping I can put myself out of my misery soon.

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