I have neglected this site.  Well, I’ve been in Venice.  And Italy.  Only for 2 weeks, but  I like to say, “I just went to Paris”.  Anyway, it shows how well I am doing, that I’ve even went.  Though I have no idea if it’s the worms.

Since I’ve neglected writing, there has been a lot going on in the worm world.  TSO trials have begun for Crohn’s disease in the United States and abroad.  Helminth therapy is being discussed all over the press, from Moises Velasquez’s book An Epidemic of Absence, to news articles from CBS to Science, all about the potential benefits of being infected with worms.

And what about me and my worms? I don’t know if I’m even hosting hookworms.  I still need to do an egg count, and see if any of the 8 I dosed with are still alive.  I don’t know how much sub Q IG is helping  on its own;  (I switched from IVig to subQ IG, which means subcutaneous Immune Globulins, which I do a dose of 50 g weekly. ) It seems to help.  The pyoderma around the stoma has never come back.  The Crohn’s?  I’m not really sure how much inflammation I have since I’m overdue for a test.  I need to do a colprotectin stool sample and take blood CRP and SED measurements.  From how my gut feels, I suspect some low grade inflammation both in my ileal-cecal area and the rectum, since I have periodic burny pain in the former and too much mucus coming from the latter.  Though the mucus is also dependant on my sweet consumption; more honey and sugar equals more mucus, when I cut back, it also recedes.  Though I don’t seem to have the willpower to keep to the right diet for long.

I am 175 pounds, however.  I need to start exercising more because I can’t say it is all muscle.  On the one hand, it is nice to have a little extra fat for once in my adult life, and I am enjoy having breasts and thighs, but my belly is getting to be too much, and my arms are starting to look bad.   I know it is from eating too many carbohydrates, and if I could just stick to a paleo diet I would return to about 165 pounds and stay there, depending on how much I exercise.  But I guess a testament to how well I’m doing is my reluctance to be fully strict with diet.  In other words, I’m mostly getting away with it. And REALLY enjoying food.

The colostomy is probably helping me to maintain relative remission, because of the constant inflammation I had in the rectum and multiple bowel movements before that; it was harder to reach a consistent level of health.  But I also hate it, it leaks sometimes and I can’t control it.  I have no idea when I’m going to have gas or a bowel movement, I can be caught in the worst places (most recently, on the 1.5 hour bus ride preceding the 2.5 hour train ride back from Siena to Venice, in which the seal completely failed, and I had shit coming down my underwear, into my pants, smelling terribly so that I would get up and move down the train after every fart  With not enough wipes to clean myself, stuck in a tiny train bathroom, Italians knocking to get in, I cursed that colostomy.  But I survived, made it back to my apartment in Venice, walked the streets of Paris, Venice, and Siena with strength and unending curiousity, feeling a sense of sadness for not being whole, but enjoying the hell out of it.   I was there. I was well enough.  And I drank lots and lots of wine.

In two weeks I go down to reinfect with 10 more hookworms in Mexico. National Geographic TV wants to film me.  I’m not sure what to think.  One might ask why I keep doing this if I don’t even know if the worms are in there.  That maybe I’m just chasing something that I think is helping, when in actuality, I’m some desperate individual hooked on getting infected with a microscopic parasite.  But as the avalanche of studies and news articles pour in about the connection between a loss of commensals and the growing tide of autoimmunity, heart disease, cancer, depression, the list of ailments is going on so long, I can’t even remember them all, it makes you want to do everything you can to prevent the modern ills of society.  And I don’t know if the worms are going to effect my Crohn’s, or if the IG is pulling all the weight, or the turmeric supplements, or the diet that I try to follow.  And at this point I’m trying not to care so much. I’d rather go to Italy.  I’d rather drink “un demi-litro” of wine, and forget my troubles for a while.   I know that when the worms are working, my skin is clearer, I can get away with eating more non-species appropriate food.  I can go on and on with energy to push myself more than the average woman.   Or maybe I just think the worms are doing this, and then it’s the power of the placebo to keep my health above water, so I’m not always sinking from average to below average, or god forbid, the dreaded flare up from hell.

Maybe the worms are doing nothing, but preventing me from getting cancer, or heart disease, or Parkinson’s, like my mother.  I’ve learned not to rely on them 100%, however, that diet, and exercise, and meditation, and friendships are just as important, and it’s the daily habits that add up to the lifetime of disease, or hopefully, health.

I’ll update the science, the links, the data from my bloodtests.  I’ll let you know what the worms do in 2 weeks, if I get another high from them, or diarrhea, or nothing.  Who knows?

I still want to get rid of this damn colostomy, but until my next colonoscopy, I’m trying to enjoy my life, develop my pedicab business, plant the winter garden, paint my house, homeschool my children, refinance my properties, get all of my friends to move onto the block, and hopefully, start painting again like the masters I saw in the Musee d’Orsey.  Play more music with people.  Drink more cappucinos and wine.  Walk for hours, smoke more, love more, and try to forget for a moment, this monster called Crohn’s that I should never had to experience in my life, and maybe, just maybe, my dream of going to Italy without a bag, without a disease, without a constant fear of what is quietly destroying myself inside quiets down to a dull, then silent whisper.

Maybe one day I can imagine myself well.  And then they can invent a pill that makes you forget all that you suffered from before.  So that when I look down at all of my abdominal scars, I can wonder what tree branch I caught myself on when I stumbled in that forest of abandon.  Or maybe I tripped on a cobblestone and scraped myself on a gondola as I fell drunkenly into the canal.

Will I still be travelling to Mexico every 6 months for more worms?

 

I killed the worms off late April, and did OK for a while.  But slowly, more mucus began coming out of my rectum, which started to bleed, more rectal pain, and then I began to feel more tired and inflamed.  I went to a new naturopathic doctor, who put me back on large doses of natural anti-inflammatories. (Curcumin, green tea extract, and high dose fish oil.  Plus, 4 packets of VSL#3 DS a day, l. glutamine, magnesium glycinate, amino acids, and we added glutathione and milk thistle to help detox.)

I also returned to a strict paleo diet, but only lasted 3 weeks before I caved for melted chocolate and honey, wine and popcorn, (chewed up to get the yeast, butter, and coconut oil, then spit out to avoid the fiber. ) The diet and supplements helped.  I also began putting ozonated oxygen suppositories up my butt at night, and though I smell like ozone, the bleeding and mucus is subsiding.

I began B12 shots a few weeks ago, and that is helping with the on and off neuropathy and twitching.  I think it was both magnesium and B12 I’ve been deficient in, among other mysterious nutrients.

But the supplements and probiotics are costing me a fortune, so I’m going back for more hookworms soon.  I want to get a few more mercury amalgam fillings removed and replaced, then will fly down to San Diego and reinfect with 7-10 more hookworms so that I don’t have to be so perfect with diet and supplements.

Moises Velasquez-Marnoff wrote a quick NY Times piece on autism that is getting a lot of attention.  His book, “An Epidemic of Absence” hits the shelves in November.  I know I’m in a little of it, and really not looking forward to reading about my failures with worm therapy.  And here I am, going back to Mexico soon for yet another dose, but this time, I have more things that I’m depending on instead of just the worms. It should be a good book, Moises is an intelligent writer and has spent a while interviewing and piecing this idea together.

I had my GI look at my rectum a few weeks ago, and had an MRI endoscopy to look at the rest of the bowel. He found mild inflammation in the rectum, and mild inflammation in the terminal ilium.  I was surprised that it wasn’t worse because of my symptoms.   It’s probably better now, considering I have little pain left and way less mucus, but I’m still bleeding on and off.  I hope the worms put an end to all of that; when I was hosting them in early spring, I had almost no mucus at all.

My GI told me that maybe in a year, we could revisit the colostomy. He still thinks if I were reattached, I would have too much urgency, since the muscles of the rectum are still scarred and atrophied now from inactivity.  But it put a little ray of hope in my hope-starved soul, so I’m going to try to find anything that heals scar tissue, since I despise this colostomy.

No pyoderma, it never returned since starting the IVIg.  I put the IVig back to its largest dose – 35 grams for 4 days, monthly.  But this past round, I did it at 6 weeks, and after 3 days, I couldn’t take the headache, so I didn’t take the fourth dose.  I still haven’t looked into subQ therapy; I may switch to that weekly, but don’t know if it packs the anti-inflammatory punch that the IV does.

The summer has been nice; I started a pedicab business, just went out on Labor Day weekend and gave people a bunch of rides.  I am sore and tired today, but proud that I could do it.  Two little old ladies told me I was “quite a gal”, as I’m the only female out there in this business.  Little did they know I had a colostomy strapped down under my biker shorts, and weighed 30 pounds less just a year before from surgery and infection.

So, the wormy quest for health continues.  I’m looking forward to the initial high from the hookworms, since I could use the energy to paint my house before winter settles in.

I’m trying to learn my lesson that a strict diet is forever, I need to take supplements forever for good health,  and am trying to enjoy when times are good and rest when they aren’t.  I still want to be superwoman, though. It’s hard having this disease when your spirit is this size of a mountain and your ambition never ends.  I wasn’t meant to have a disease.  I’m ready to for it to end.

I killed the hookworms off at the end of April. So now it’s been 2 months hookworm-free. Physically, I have regressed somewhat. Anal mucus is back, most every day, I have more random anal pain. My acne at first got worse, but now looks better.

The hookworms were keeping the Crohn’s in remission, but…too many side effects. And I’m talking about the long term side effects. Not many worm hosters are 4 years into this. At first, I get high and happy from the hookworms, tons of energy for the first week. Then the side effects kick in at the end of week 2 and last until week 8, then the physical improvements begin and the Crohn’s improves.

It took 10 months for the mineral deficiencies to set in the first time. Magnesium loss – manifested at first as involuntary muscle twitches, then toe and calf cramps. Then as it kept falling, anxiety sets in, then insomnia. It suuuucks.

This last December’s innoculation only lasted until April before the magnesium fell enough to start causing constant symptoms. I don’t mind the muscle issues, but the emotional ones become too much.

I had gone on antidepressants to deal with the anxiety and insomnia two years ago. I had to take a combo of ambien, melatonin, benedryl, and valerian just to sleep on the bad nights, and it would still take several haunted hours to fall asleep.

Interestingly, my poor husband, who got 25 hookworms 2 years ago and 25 in December, no IBD or bowel issues, good absorption and digestion, started getting depressed last year and also went on antidepressants. He was feeling overwhelmed and didn’t want to get out of bed. He was having more leg cramps at night, and sometimes it seemed as if he had restless leg syndrome. He only hosted hookworms for me anyway; his walnut allergy never went away, so when I killed the hookworms and he didn’t need to host them, he killed them too. And guess what? His depression lifted, he dropped the Wellbutrin, and 2 months later he is back to his happy self.

Do hookworms cause depression and anxiety? Probably indirectly. They also can eliminate depression and anxiety for some, that happened to me at first. Though they may be manipulating seretonin and other such things in the gut, their constant drain may just deplete the body of certain minerals essential for nerve and muscle function, and magnesium affects the mood and mind, I’ve unfortunately discovered.

Why are other hosters fine? I don’t know. Maybe they have higher dietary intake of all the nutrients. Maybe they haven’t hosted for long enough. But I’m starting to see the advantage of a species that works much more gently on the body.

A few other long-term hosters are having issues too. Bubbleboy just killed the hookworms because he was becoming too depressed and unmotivated. Garin’s sick of hosting them and the constant nutritional supplement regime he takes to keep deficiencies at bay. Jasper was suffering from depression after leaving the US, and had some pretty extreme emotional issues even here, but whether or not the worms had any contribution is unknown.

While some responders are in their first flush of remission, most don’t know that the glory days seem to be the first 2 years, then the worms benefits diminish for some, and most need to go back to a cleaner diet, or start building to higher numbers, more species, or both. There are enough people doing well longer term that it’s worth pursuing, but I’ve only seen a few lucky people who are in remission for years without issues. Some lose their worms and just need redosing, some lose benefit, or like some of us, suffer too much from the negatives.

I left all the worm forums since there are a handful of diehards who have gotten great benefit from the worms, and seem to have their blinders on. They will not tolerate negative talk about one’s provider, my reflections on magnesium deficiency are met with so much derision (it couldn’t possibly be the worms, my blood tests, my husband’s experience, other hosters suffering the same muscle issues, it all must be suspect or I must have ulterior motives to bring down the worm world)…let’s just say it’s not supportive or very balanced. I miss the excellent links to all things Old Friends, worm-related, or autoimmune, but I don’t miss the drama.

I wish every experimenter luck- if the worms work for you, enjoy your first two years. Pay attention to symptoms of iron or magnesium loss, preventive supplementation may be better. For me, bringing up my mag levels has not been easy – too aggressive supplementation and I get diarrhea, the shots hurt and only last for a few days. I’m still twitching and cramping somewhat, but I have abandoned my antidepressant for the first time in 2 years and I’m sleeping without aid and have no anxiety. PMS is also a lot milder.

I really should get a colonoscopy and see where I’m at. I did just reach 170 POUNDS (I was down to 138 lbs last summer), though I need to cut back on chocolate treats (honey based) and cheating with tostadas and corn chips-I’m starting to collect fat. I’ve been biking a lot more, though sometimes I wonder if it makes my butt ache. I think the IVig, the probiotics (VSL#3 DS and multaflor,) and diet are pulling most of the weight.

The neverending experimentation continues, I still hate having a colostomy and dream that I can get it reversed. I’m enjoying feeling so strong and heavy. Mostly, I’m trying to get on with my life and support my children through their lives, help heal the trauma of Mommy’s rough last few years.

But the hookworms are dead and gone, and I will probably not host them again. They work for my Crohn’s, but not my sanity.

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…

Finally, some good news to post after 2 years of misery.  I’m feeling great!  Hurrah!

The hookworm side effects peaked as scheduled, worst week was week 6, when I had pains in my rectum, intestine, and scheduled a colonoscopy, afraid for more inflammation.  I had another round of IVig (getting 35 g a day for 4 days, or 140 g, now every 8 weeks.) on week 7, then things started going really well.  Pain disappeared, and I was constantly hungry, which happened with my first few years of reinfection.  From Valentines day to now, I have gained 15 pounds!  I look great, albeit a little fat.

I’m also doing a lot of physical work on my garden, and on my neighbor’s farm.  My back is getting stronger.  I’ve dug a pond, planted 50 foot rows of peas, pumpkins, lettuces.  I’m starting Fairytale Farm up again, and buying a pedicab that I will turn into a pumpkin to be both carriage and vendor for a roving farmer’s market.  So life goes on.

The best news is my gastroentrologist, Dr. Terdiman, told me I could put off my colonoscopy for a few more months since I am doing so well.  I’ll do an MRI endoscopy in a few weeks, and test my blood to see how things are there.  Colonoscopy probably will be around June/July to be at the one year mark since the ostomy, though I’m trying to time it around reinfection, since I was planning on adding another 10 hookworms around the 6 month mark.

I’ve been doing egg counts,  ye old Mc Master style, and have found 2 eggs, then 5, then 5.  This was across the entire slide, not just in the grid.  I’m starting to think I was infected with way more worms the first few years than I thought, since I had much higher egg counts, usually 10 – 15 at a time, using the same method.  But I’ve also been taking curcumin and the IVig itself may help fight the worms.  I’m going to switch over to the method that other egg counters use, involving the use of fecalyzers and zinc sulphate, so I will post my results from that soon.

The stoma itself is frustrating.  I have to bind it in a hernia belt built for ostomies, though I don’t use the hole that is supposed to go over the stoma that the bag goes through, because then there is nothing to hold the protrusion of the stoma in, so I just smash the whole thing, and try to catch when I have gas or stool, then stretch it wide to give it space.  We’ve cut the hole bigger so I’m not having constant leaks, but if I go more than 10 minutes without it bound, the stoma protrudes too much.  A home ostomy nurse came and thought that I was not only prolapsing, but herniating as well, thus the belt.  Something that the UCSF stoma nurse and surgeon didn’t think looked “too bad”, although it doesn’t comfort me to hear they’ve seen worse, because there is always worse, especially among colo-rectal surgeons who work at a huge teaching medical center specializing in IBD.  Luckily, the pyoderma is still 100% gone, so the IVig is doing its thing.

I’ve been straying off my diet which is bad, because it’s not really causing any problems other than sometimes gas that gets stuck around my narrow bend in the ileal region, so I have less motivation to keep on the straight and narrow.  I notice my skin is clearest and my gut happiest when I’m eating on my diet…unless I have too many nuts and raisins, or coconut and raisins.  I really should just stop eating raisins.  I’m afraid the area with the stricture is worse in general, and even though I tolerate kale, lettuce, and other fiber I couldn’t before, this area can get stuck for days, so I fear what we’ll find on the tests.

Lots going on in the worm world, I’ll have to write a separate blog post for all of it.  But for now, at least, I feel good, and just hope it lasts longer than a few months.  Viva la worms!

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