Killed the Worms

About a month ago, I killed the hookworms.  Although they were helping so much!  The IVig brought me to about 60%, but I still had anal mucus, acne, and some abdominal pain, looser stools.  After getting through the side effect period of the hookworms, where things got worse all over, including pain, all pain vanished by week 8, no more mucus, my skin cleared up, and I could get away with the occasional dietary infraction.

But around late March, after just 3 months of hosting, my symptoms of magnesium deficiency started to worsen again.  I had gotten a little slack with my seaweed and magnesium supplements (the seaweed seems to help the most), so I tried just adding them in and going back to the epsom salt foot salts and baths, but I continued to have more involuntary muscle twitches, all over my body, and my calf muscles started to cramp easily.  My big test is how long I can stand on my toes – it got down to 3 seconds before I’d cramp.  I also started having difficulty in staying warm, regulating my body temperature.

This went on for several weeks without any improvement; I kept giving myself diarrhea by taking too much magnesium (which really isn’t that much; over 400 mg. of the magnesium glycinate and I get loose stools.)  I have extended release forms that aren’t as likely to cause diarrhea, but they also don’t seem to work as well.  Finally, I started having difficulty falling asleep, and was beginning to get anxiety. All lovely symptoms I experienced for years on the hookworms, not identifying the cause.

So after a particularly miserable trip in Yosemite, where I had to take Ambien, herbs, melatonin, and Benedryl to sleep, and I couldn’t hike much without muscle weakness, I killed the worms.  I hated doing it, after all the time invested, and the fact that they were working in every other way.

It helped a little, but my experience with magnesium is it is very hard to correct once fallen to these levels.  I get better, then I’ll have a few days of loose stools or sweating, and I am back to my toe or finger twitching constantly, not having the strength in my hands.  I am also very tired, and easily fatigued.

I took a blood test two days after killing the worms, and my Red Blood Cell Magnesium test was low. Below normal.  My experience with this test is I am still symptomatic until I get a little above the low normal range.

The rest of the blood test was perfect.   Perfect!  No inflammation, CRP and SED were at 0.   Lymphocytes, Neutrophils, perfect.   So the IVig and the 10 hookworms, the paleo diet (I do cheat with homemade sprouted beans, cheese, homemade yogurt, and the occasional corn chips, were working!) I have been very non-diligent with curcumin, green tea, and fish oil, so I think it was mainly the IVig and the worms.

Now, a month later, my acne is returning, I am having anal mucus every day, and some random rectal pains.   (Although I had a few of those with the hookworms; I feel like sometimes it’s scar tissue or nerve pain residual from the abscess and surgery.)

I have also gone the full 8 weeks apart from the IVig for the first time, which I am now moving back to every 6 weeks.  I spoke with my doctor, and we’re going to try reducing the dose by 1/4.   Instead of 35 g. a day for 4 days every 8 weeks, we’re going to try 35 g for 3 days every 6 weeks. I’m hoping this helps the headaches too, which become monstrous by day 3-4.  But I don’t know how long my veins are going to last with this. I’m told you can administer IVig subcutaneously,  though it can cause irritation under the skin.  I guess I can always get a port if I have to.  The home nurse can only get an IV started in one vein; the rest are so small and just collapse once the needle is in there.  So long term, the vein could become scarred…

So here I am, still magnesium deficient, but at least I’ve got it up so that I am sleeping without aid.  I just cut out black tea, alcohol (which I was only having very occasionally), and am taking the green tea/curcumin combo only once a day, so they don’t block absorption of the magnesium.  I’m soaking in epsom salts once a day (feet or bath), and rubbing on magnesium lotion before bed.   I just ordered my very popular brown seaweed supplement (it was on Dr. Oz, so is sold out everywhere), and will try doing that 3 times a day, since that seemed to help the most. I also ordered a sublingual elemental magnesium formula, and I bought some nutritious herbs to substitute for the black tea.  (nettles, red raspberry leaf, oatstraw, parsley, alfalfa.)

Garin notices his muscles cramping,  having much more fatigue with work outs, and muscle twitching when he forgets to take his magnesium supplements for even a few days.  I also heard from another patient that he is also having issues with muscle cramping, and has had involuntary muscle twitching while hosting hookworms, symptoms he’s never experienced before. He doesn’t have IBD.  It doesn’t seem to be a common issue with hosters; I don’t know why only some of us develop iron or magnesium issues.  My iron, by the way, was fine, a little on the lower side, but not bad for a woman hosting hookworms with IBD.

So, I’m hoping to get the magnesium to a good level.  I ordered more IM shots, though they really hurt and I can’t always tell if they help.  Sometimes they seem to make me just feel weird.

I may consider just adding a few hookworms in down the road – if 10 can be so effective, maybe 3-5 would be all I need along with the IVig and everything else.

So here I am.  165 pounds, which is great news.  No pyoderma – that cleared up several months into the IVig and never came back. I get IVig this week, so I’m hoping that will halt the Crohn’s symptoms creeping back.  I still hate dealing with this stoma…

  1. David Boone’s avatar

    I struggled with misdiagnosed Crohn’s for ten years (they said I had UC because it was all in the colon). Had an ileal anal pouch procedure that went bad after a few years because I really actually had Crohn’s the whole time. Went through all that you are going through and it makes me sad that there is not more that can be done. In the end, I got a permanent ileostomy and my life turned around so quickly and so much for the better that it is hard to put into words. Its been 8 years and I barely remember my old life (I am like that, tend to live in the moment to a pathological degree). I did not want an ostomy and fought hard against it for many years, but it saved my life. So, think about it and talk about it with your doc…..

  2. Linda Hagar’s avatar

    I just read your May 14 update, and it has a lot of great information. I am taking tons of calcium (too much, I need to cut down) to keep my body from forming painful oxalate crystals. All of the calcium makes me deficient in magnesium and iron and I have had calf cramps as well. I’m glad you are doing better! I look forward to more updates!

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