Week 3 Review

For 4-5 days early in the week I had really bad gas.  It didn't manifest in pain or bloating but the smell was truly toxic and prolific.  My wife wondered if it might be my GI microbiome re-aligning with the helminths.  That sounds a bit feng shui to me but I think the gas is likely helminth related because otherwise my diet hasn't changed.  These symptoms are listed in the hookworm timeline as an uncommon but observed side effect that may happen in week 3.  Fortunately the gas passed a few days ago.

I was also surprised that the spots that make up my rash have become raised and more pronounced this week.  The hookworm timeline suggests this may be a consequence of the hookworms becoming adults and attaching to the intestinal wall and the immune system is reacting in kind to both the worms and the debris left in the skin.

Week 2 Review

I had more bloodwork done yesterday and everything is in range except for my platelet count, which is still low from my 6MP encounter.  But the good news is that it is slowly climbing.

On Monday I reduced my prednisone to 15 mg/day per doctor's instructions and will continue to taper down 5mg every two weeks.

I've felt pretty good for the last couple of days.  While the hookworm timeline says this about the right time for a "worm bounce" (a sudden improvement in symptoms) I actually attribute feeling a bit better to the lower prednisone dose.  Prednisone makes me feel really wired and each time I have lowered my prednisone dose, I've felt a little calmer.

Week 1 Review

Today ends the first week of helminthic treatment.  The rash on my arm is less red overall although the individual hookworm entry points are now much more distinct.  I really had only one day of slight itching and no other significant changes.

Day 3

Or, "What to Expect When You're Expecting.. Worms"

Jasper Lawrence and John Scott have put together an excellent hookworm timeline.  In the next few days the hookworms should be migrating via the lungs to the small intestine where they will mature.  At the same time the whipworm eggs should be hatching in the small intestine and after a week they should migrate to the large intestine.  It will be weeks before the worms are mature and probably months before I really know if they are helping to maintain Crohn's remission.

Day 2

I have had only a very slight periodic itch at the inoculation site.  The rash itself is already starting to fade and look more diffuse but at one point in the day the little marks looked particularly crisp and I counted roughly 20 of them but at the center they were so clustered it's easy to believe all 35 may have made it in.  I have circled the rash site in the photo below.

Day 1

Today is inoculation day.  I am beginning with 100 TTO and 35 NA.  As mentioned in my previous post, I am taking prednisone so my reaction to both the TTO and NA is likely to be duller (less itching or other effects) than had I not been on prednisone.  AIT actually recommends taking prednisone to patients who have or think they might have a stronger reaction to infection.

The TTO comes in a small vile to be ingested.  I was a little surprised that when I was going to swallow it nothing came out.  The surface tension of the fluid was actually holding it in place because the vial is so small.  Tilting the vial more slowly instead of trying to take it like a shot of whiskey did the trick.  I then rinsed the vial with tap water drinking the rinse water each time.  The solution is slightly salty but there's hardly enough of it to really even taste it.

The NA kit comes with two small vials.  The first contains the hookworm and the second contains a rinse solution to dislodge hookworm that may be hanging on to the sides of the vial.

One applies the hookworm on a bandage and then uses the rinse solution on the hookworm vial.  The rinse solution is then also added to the bandage.  The bandage has adhesive on all four edges to keep the solution in but really the cotton part of the bandage does that well enough - it's not a lot of fluid so the bandage feels only ever so slightly damp.  I added a little bit of loosely wrapped co-flex just as insurance that the bandage would not come off.

Within five minutes I felt the first pin prick and then shortly after a cascade of other little pricks.  After ten minutes the excitement was over.  I will continue to wear the patch for at least four hours in case there are any stragglers.  I haven't noticed any itching or other ill effects.

I began this procedure at approximately 3am while the rest of my family was asleep.  Because of the prednisone this is when I wake up "normally".  While supportive, my wife didn't actually want to see me doing this so it's the perfect time.  I have to admit a slight urge at 4am to shout, "Argh.. The worms have got me!"

Baseline

Due to my recent bad reaction to 6MP I wanted to make sure I had a good baseline to start from before treatment with NA and TTO.  I had blood work done this morning and both my doctor and myself were surprised to find that one of my levels, the platelet count, had not completely rebounded.  Normal platelet counts should be between 130-450 billion/L but mine is at 115.  While this is low it's certainly not critical and with hookworms sitting on the shelf I've decided to go ahead and begin inoculation tomorrow.

My CBC showed red blood count, hemoglobin, hematocrit, and white blood count are all in normal ranges.  Furthermore segmented neutrophils, lymphocytes, monocytes, eosinophils, basophils, and absolute neutrophil are all in normal ranges.  Platelet count (115) differs from norm by roughly 15 billion/L.  Iron and B12 were also in normal range.

My weight is 84 kg (increased weight due to effects of prednisone) with height at 1.8 meters.

My current drug and supplement regime includes:

• Asacol (3200mg/day)
• Prednisone (20mg/day)
• Entocort (9mg/day)
• Flintstones Complete Multivitamin (1 a day)
• Ultimate Flora Adult 15 (1 a day)
• Vitamin D Supplement (2000 IU/day)

The Flinstones vitamin is chewable and contains iron (not all multivitamins do).  I will over the next weeks be tapering both the prednisone and entocort and in fact have already tapered the prednisone down from 40mg/day in mid-April.