Egg count is supposed to peak around 6 months, then decline.  My last innocualation was the end of September, so 6 months ago.  I wonder if we should reinfect twice a year, or if it’s based on the amount of worms you get and keep?  Does egg count correlate with symptoms?

At least they’re still alive, so I have something to incubate.  I’m off to the garden store to get some vermiculite.  Then I’ll get my petri dish ready, and try to incubate again….

Schistosoma mansoni proteins attenuate gastrointestinal motility disturbances during experimental colitis in mice

http://www.wjgnet.com/1007-9327/16/703.asp

Injecting worm proteins  into mice given colitis resulted in decreased gastric motility (less bowel movements) and amelioration of inflammation.  Pretty good stuff.  This means that worm proteins will eventually be the next Prednisone, and the live worm won’t be necessary.  I wonder how often we would have to take them?  Will they be a shot, a pill, or an enema?  Can we get out of the mice model into some human studies before those with IBD lose their colons in waiting?

Abstract

AIM: To investigate the therapeutic effect of Schisto­soma mansoni (S. mansoni) soluble worm proteins on gastrointestinal motility disturbances during experi­mental colitis in mice.

METHODS: Colitis was induced by intrarectal injection of trinitrobenzene sulphate (TNBS) and 6 h later, mice were treated ip with S. mansoni proteins. Experiments were performed 5 d after TNBS injection. Inflammation was quantified using validated inflammation parameters. Gastric emptying and geometric center were measured to assess in vivo gastrointestinal motility. Peristaltic activity of distal colonic segments was studied in vitro using a modified Trendelenburg set-up. Cytokine profiles of T-lymphocytes isolated from the colon were determined by real time reverse transcriptase-polymerase chain reaction.

RESULTS: Intracolonic injection of TNBS caused severe colitis. Treatment with S. mansoni proteins significantly ameliorated colonic inflammation after 5 d. TNBS did not affect gastric emptying but significantly decreased the geometric center and impaired colonic peristaltic activity 5 d after the induction of colitis. Treatment with S. mansoni proteins ameliorated these in vivo and in vitro motility disturbances. In addition, TNBS injection caused a downregulation of effector T cell cytokines after 5 d, whereas a S. mansoni protein effect was no longer observed at this time point.

CONCLUSION: Treatment with S. man­soni proteins attenuated intestinal inflammation and ameliorated motility disturbances during murine experi­mental colitis.

© 2010 Baishideng. All rights reserved.

Every day, there are more and more “waiting for the cure” searches, meaning, people know the website and are typing it in full.  Yet I get very few comments on this site, and many of them are from the same readers.

So I’m wondering, how do you know about “waiting for the cure?”  Is your doctor telling you to check it out, is it something you’ve stumbled upon after reading or seeing the news about worms?

You can contact me privately by clicking on the contact link, if you’d rather no one knows but me.  Or you can post a comment anonymously by making up a name and using a false email.  (Does that work?)

I know most people are afraid of other people knowing they are trying or even interested in worms.  I have no high profile career to lose, and want everyone to know about this worm option, so I’ve sacrificied any notion of privacy and just used my real name for the CBS piece, the yahoo message board, etc.  I haven’t used my name in this blog, but most people know who I am regardless…

Just wondering what everyone else is thinking these days of worm therapy and how you got here.  No real reason but curiousity and a dose of vanity sprinkled with paranoia…

I’m going to do an egg count this week. Assuming it is the roughly the same as last time, I will hit 6 months from my last dose at the end of March. It may be that I infect every 6 months until I have enough worms to keep me well. I wonder if the infection itself is part of the solution? How many people have lasted beyond a year with relief? Is the number of worms critical? Do you reach a point that a certain number of worms = efficacy, then more becomes harmful?

Assuming I can get trichuris trichura, will that help? Since I have mostly colonic Crohn’s, would the whipworms be more efficacious to my rectal symptoms? Would the combination of hookworms and whipworms be more effective than hookworms or whipworms alone? How many whipworms then to add? What would be the side effect profile if one were infected with hookworms for 2 years already?

Too many unknowns. Too much to play with. The research is slow, and we are experimenting far outside of their perameters anyway. The celiac trial infected with 10 worms, then 5 a few months later. Who chose that number? The MS trial in Nottingham will infect with 25 worms at once. And no one is using trichuras trichura in research at all. The TSO you drink every 2 weeks.

Oh, what to do. I guess I’m lucky I have the hookworms at all to play with, assuming they’re still inside me, which I’m sure they are because of my symptoms. Just had a solid bowel movement, with no pain, after sleeping through the night (though I am having to wear panty liners now to catch the drip.)

I am just so sick of this experiment, I want to be fully well. But I’m working on being thankful for what I’ve got. The scientific spirit lives on, and I must keep experimenting on myself until I get as close to total wellness as I am able.

I still remember perfect health. I’ve got the body of an athlete, if only it is given a chance to right years of wrong. I may never achieve that, but I’ll be damned if I give up trying.

1)Soft toilet paper is expensive! And when you go to the bathroom 5X as much as the average person, you have to use that many more rolls. This is unfair. The economy toilet paper hurts if you wipe more than one time. But there is not much toilet paper on those soft rolls. Do you ever feel like you’re the only one replacing the roll in the bathroom and you just changed it a few hours ago? I want a toilet paper tax credit.

2) VSL#3…it’s the only probiotic they’ve done extensive double blind studies on. But it’s covered by insurance only if you’ve lost your colon and are suffering from pouchitis. I want my insurance to cover it so I won’t have to lose my colon and suffer from pouchitis. Where’s preventative medicine? The full dose costs $500 a month and I can’t afford that. So I take 1/4 a dose, or often 1/8 a dose. I could save money on toilet paper if I could afford my probiotics!

3) And who pays for the annual colonoscopy? First you have to buy the disgusting liquid that evacuates your bowels violently. Then you have to pay for that many more rolls of toilet paper. Gas to drive to the hospital, time off spent at work. And just to get the bad news that your colon is still inflamed, you get the co-pay of $500 – $1000 to make the news that much more difficult to stomach.

4) If you’re lucky enough to have insurance, and it will pay for your medicine, but you’re unfortunate enough to be on Remicade or Humira, there’s the $75 or greater co-pay for something that helps for only so long, all the time wondering if you’ll be the percentage that gets lymphoma, and then you’ll have to pay for that!

5) Food – It would be much cheaper if I could only digest beans. Or whole grains for that matter. I know how to eat and I know how to cook cheaply. The two include whole grains and pulses, which go through me rather rapidly, and then I use up more toilet paper! I could feed my family for $500 a month if only I starved. And if you’re on SCD, prepare to spend double on almond flour, 1/2 and 1/2, and vegetables that are often out of season. I’ve got endless kale in the garden, purple cabbage, and fava beans, but they all give me gas, and then I need more VSL and toilet paper, and in the end, I’ve saved nothing.

6) All those vitamin defincies cost money replenishing. Magnesium chloride for my foot soaks at night. Calcium citrate, magnesium glynicate. And iron, vitamin D, fish oil, B vitamins. We want to be healthier, we just can’t swallow the amount of pills it will take to get there. Or afford them when they run out. I have to admit, though, that CVS was having a sale on fish oil, so I bought a 4 month supply. And they don’t even cause fish oil burps! Now I can lower my inflammation AND prevent heart disease? The heart disease would be covered on insurance, but the fish oil that prevents it is not.

7) Hookworms, TSO and whipworms. I payed $7,800 for some worms. Call me a sucker. My insurance will pay for me to die from a fatal brain disease if I try Tysabri, but they will not pay for some worms to prevent me from needing Tysabri. I’ve read that people have gotten TSO covered on their flex spending account. I never got a doctor’s prescription for hookworms, nor was it from a pharmaceutical company, nor is it approved by the FDA. So thousands of dollars for some worms. Thank God for credit cards, before they reduced my credit to 0. The worms were worth it, but when we’re shelling out almost $10,000 for something that has lived inside of us and in the soil since the dawn of humanity, something’s gone very wrong.

Microscope, weighing scale, McMaster slides, and incubators. Because the FDA has ruled hookworms a drug, but will not pursue liscencing it in such a way that it could be covered like a drug, I have to figure out how to incubate the worms myself . This costs money and time! Where’s my worm equipment stipend? We should get bonus points for figuring this stuff out for other people, before the studies. Special credit for an artist with no scientific background. And educating my doctors. I don’t want an honorary diploma, I want the money it takes to earn one so I can pay for my damn microscope.

9) Let’s not forget the extra water, laundry detergent, and energy it takes to wash extra underwear. And the lifespan of said underwear is lessened from abuse. We need an extra underwear stipend. Do you panic when you are on the last pair? Do you have to go to a laundrymat and hide your laundry from fellow washers? Have you ever just thrown a pair of underwear away when you are caught out unaware that the coffee you shouldn’t have drunk has just kicked in? I once left a pair in the Museum of Modern Art in New York. I have such fond memories of shitting in my underwear while walking across the park for the first time! And then having to walk to the museum, wait for tickets, and find the bathroom eventually, realizing it was by then a hopeless cause. Since then, I’ve always kept a spare pair of underwear in my purse. And if you need Dipends at night, the humiliation of wearing a diaper in your 30’s should be worth something.

10) Let’s try not to mention the amount spent on Immodium over life. I could buy a second house.

11) And the co-pays to my psychologist lamenting the past. And learning how to live with the future.

12) How about work lost from the disease itself? I could have been an international spy, but I have Crohn’s disease. Instead I blog in the wee hours of the morning when I should be doing push ups and studying Arabic to prepare for my next case.

13) Let’s end on a lucky number. Maybe I’ll win the lottery and be able to afford endless soft toilet paper.

But I read about transdermal magnesium and first did a 1:1 ratio of magnesium sulfate (Epsom Salts ) to water, warmed it up until hot, then soaked my feet in it for 20 minutes.  That afternoon I didn’t have the racing heart I’d grown accustomed to every afternoon since January.  (and September – December)  I fell asleep that night without the necessary combo of 2 Benadryl, 3 mg. of melatonin, and Ambien.  The next day I bought some magnesium chloride from a vendor at the farmer’s market (none of my local health food stores carried it, though it can be found online.)  I tried to make “magnesium oil” but it stings when I put it on, so I prefer the foot bath. I cup of magnesium chloride to enough warm water to barely cover my feet.  I reuse it about 4 times, then dump it out and start again.  I also rub it on my face, legs, and arms while I’m soaking my feet.

I thought it was a fluke, so I’ve waited a week before reporting on it.  Now I’ve slept unaided every night since then, which is amazing considering I was back on Ambien since the second week of January, and fearing dependence and withdrawal.  I even have added back in marijuana and alcohol without ill effects, and the last few months it’s been causing worse insomnia and increased anxiety.  Woo hoo!  I’m feeling back to my normal, happy self, and it was as easy as a foot bath!

I’m due to get my period this week, so I should be a grumpy, nervous mess.  Even more proof it’s working.

I visited my psychiatrist only 9 days ago and she suggested the Celexa had “petered out” and I should add a low dose anti-psychotic that they use for depression that also helps with sleep.  I never got the name of it, I was too depressed.  What, 2 months on Celexa, with really only a few weeks of relief, and it had already stopped working?  I cried for a day, then had an enormous pie party to bake for (try inviting 71 people over for 21 pies made in 3 days when you’re suffering from “major depressive disorder” and anxiety.  I pulled it off, but I wish I had discovered the transdermal magnesium before that week.)

Now I get to focus on a trip to LA that was previously making me incredibly anxious (and now I’m getting excited about) and the Hookworm Incubation Project.  My Crohn’s symptoms are slowly coming back (more mucus, more bowel movements, a sore butt because of it), and I’m wondering if I just need a redose every 6 months or something.  I love the high, but I got a full 6 weeks of side effects last September, including neurological ones, so I’m not that keen.  I also need to do an egg count.

Hopefully I’ll manage both before we leave, and the little yogurt maker will be incubating away while we are out.  We have a secured, seperate locked room, so no animals or children can mess with the experiment.  I still feel paranoid about writing about it, but how else are we going to learn about it?

I won’t provide links to the transdermal magnesium, since it’s mostly testimonials, but I recommend anyone suffering from depression, anxiety, insomnia, muscle fascillations, charlie-horses, longstanding IBD, to soak your feet in hot liquid magnesium chloride or sulfate every night.  It’s a wonderful cure.

Worms and foot baths.  Highly recommended.

There’s a new film about to be released on using parasites as therapy by Sharon Shattuck called “Parasites: A User’s Guide”. Click on helminthic therapy and scroll down for a full list of research papers on using worms for various autoimmune diseases.  It looks like it will be entertaining, and she’s hoping for help with locations to screen her film, if you’ve got connections to your local movie theaters.  You can contact her through her website.

I will be trying to incubate again this week.  I will share my methods of success or not.  Meanwhile, here is another place where someone is experimenting with incubating hookworms.  Let’s help one another, shall we?

Update:  someone suggested two links for incubating instructions.  The first:

http://www.mja.com.au/public/issues/178_02_200103/lan10157_fm.html#CACJFHGC

From this post (they were incubating dog hookworms, but I imagine it would be the same for necator americanus:)

”

1: Details of isolation of third-stage larvae from infected dog faeces and of preparation of faecal samples from the human volunteer for microscopy

Isolation of larvae: Equal volumes of faeces and vermiculite were mixed well in a one litre plastic container, moistened and incubated at 30oC, being stirred daily. After five days, the mixture was spread onto large glass Petri dishes, covered with a 5 mm layer of washed, coarse river sand and overlaid with two layers of damp surgical gauze. The top layer of gauze (into which infective L3 had migrated) was removed (and replaced) at 12-hour intervals, to be rinsed in distilled water. Larvae were retrieved from the suspension by gravitational sedimentation, and stored in BU buffer (50 mM Na2HPO4, 22 mM KH2PO4, 70 mM NaCl) at 12oC to preserve their infectivity.”

And the second site, with a good second page on identifying the difference between hookworm larvae and stronglyoides:

https://openaccess.leidenuniv.nl/bitstream/1887/13930/12/Appendix+01.PDF

“Preparation of the culture:
1        Put a flat cylindrical disk (40mm x 4mm) in the middle of a 10cm petri-dish
2        Put a circular filter paper (80mm) on top of the disk
3        Add water up to just below the level of the disk
2g stool sample         Petri-dish
+ vermiculite
Filter paper Cylindrical disk Water
4        Mix 2g of faeces with equal volume of vermiculite/coarsely ground charcoal
5        Label the dish lid with the patient’s number and the date
6        Keep away from direct sunlight
7        Add water when needed
After 7 days incubation:
8        Remove the filter paper and the faeces
9        Pour the water from the petri-dish into a conical settling tube
10       Rinse the petri-dish with a little water, pouring it into the same settling tube
11       Label the tube with the patient’s number
Allow the larvae to settle at the bottom of the tube. 2 hours later:
12       Pipette 1 OOul of sediment from bottom of tube onto a microscope slide
13       Systematically examine the whole drop using X4 objective
14       Switch onto X10 to distinguish between hookworm and oesophagostomum
15       Count the larvae
16       Add a drop of dilute iodine in KI solution to kill the larvae if necessary
NB       If using tap water, boil to kill plant nematodes and to remove chlorine
Cultures checked daily, to remove maggots and break up fungal hyphae
Iodine solution: 0.3g KI and 0.2g I2 in 10ml water. 1-2 drops in 1 ml water”

Happy hookworm growing!  Scientists, we could use some help here…

The Crohn’s? No pain, no night sweats. No diarrhea throughout the night. I can eat a huge variety of foods I couldn’t before. For this I should be grateful.

And I am, I am. But I’m at the tail end of a few weeks of badly chosen foods. Chinese food followed by cabbage followed by raw vegetables followed by homemade pickled beans. The culmination which means more frequent bowel movements, a diarrhea thrown in, more mucus, more gas. I ran out of VSL#3 a few weeks ago and was substituting some old probiotics, and have started iron pills. I was praying for constipation from them, but no such luck. And I’ve got a bad cough, so I’m just feeling a little sorry for myself. I’m still going to the bathroom at least 3 times a day. SOOOO much better than before, but I just want to have a solid bowel movement every single day, eat some raw vegetables and not have to worry. Is that too much to ask?

The mental agonies of a lifetime of Crohn’s are just not easily swayed. The SSRI has helped – until my hormones tried to envoke the first period after the miscarriage. Two weeks of PMS…the return of anxiety, insomnia that I shut off in a day by swallowing Ambien every night. I hate being on medications at all, the irony of which I am off all Crohn’s drugs, but now need Celexa and Ambien. It’s like the volcano of fears that lay hiding behind the surface of survival have bubbled up. Pay attention to me! You ignored me! I want their ugly bile to spray out into the atmosphere never to return.

How do you erase 22 years of illness? I’m delving into the psychology of my upbringing, working every day to appreciate the little things. But I was talented, advanced. Preened in private school, taught I could do wonders. Learned languages, wanted to travel, I could paint, draw, compose, write. Leaped tall buildings in a single bound.

I’m also good at calculus.

And what have I done with it? I’ve lived in Italy, learned to speak French. Worked as a nanny in Ireland, am respected by my doctors for my acquired knowledge. I’ve met and married a saint for a husband, kept the relationship for over 15 years, had 2 children naturally, nursed them for 2.5 years. Kept them from autism, autoimmunity (so far.) I homeschool, bought a property in the second most expensive place to live in the United States, co-own the house and lot next door, created an enormous garden that people express envy and awe at every time they see it. Have created an artistic community here. Sold paintings, made people cry with my music. Tried hookworms. Learned more than I ever wanted to about them. This blog. All with terrible Crohn’s. A triumph!

Why do I still feel like such a failure?

Every moment is punctuated by the fear of returning to that desperate place. Being housebound, emaciated, with nothing left to try. It was a reality just a few years ago. Even the hookworm journey was frought with stress, as I had strange reactions, experimented with weird dosages, lost the worms, had to try again. Then the FDA steps in, shuts down struggling worm vendors, the Nottingham studies are not very successful, the science rambles on. I like to help everyone with my McMaster egg counts, but why the hell am I doing it at all? Where are the helmith immunologists holding my hand and telling me what to do?

How many gratitude journals will it take to recognize my triumphs? My friends battle cancer, divorce, losing their careers, their houses. I am lucky compared to them. I never had a career to lose. I have a chance again for wellness. The worms have helped and for many that is more than they’ll ever get.

I suppose if I were raised in poverty I would already feel wildly successful. It didn’t help to live near OJ Simpson. For neighbors to sit in their Jaguars and scratch their plastic surgery perfect noses. We were not rich, but surrounded by the ostentation. I had talent and drive to make up for the lack of millions, but Crohn’s finally eroded so many dreams that I became afraid to try again.

I’m supposed to be going back to LA in a few weeks and I am terrified. Will I sleep? Will my father ask why I haven’t finished by book yet, why I’ve only made $800 for a painting and haven’t shown in a gallery for years? Any drug addict can get pregnant, so my children are nothing but successful genes passed on, in his eyes. I try not to listen, but it still really hurts. He’s been healthy his entire life. Is 83 and never been on a single medication. How can he understand? Will I run into my classmates who are now billionaires instead of millionaires, who also have successful marriages and children and not feel like somehow the top of the class has failed in not standing beside them in all their fame and glory?

Does Stephan Hawking feel sorry for himself?   Would he feel sorrier if  he’d never written a thing?

I’m trying to relish my daughters’ smile. I do, everyday. I hug my husband. I walk to the beach and meditate. My daughters are selfless, they are glorious. I get praises constantly on their character, their beauty, what a great job I’ve done.

Every day, I pray for peace and healing. I pray that more people with IBD will know about the worm option, so that they can prevent their intestines from being cut out, from the ravages of this terrible disease.

Mostly I pray that they can be prevented from the mental despair of giving up time and time again. For the heroism involved in choosing what to eat and wondering if it will hurt coming out, for braving through college and childbirth and just life without chronic illness, chronic fear.

I hope that my children and our future don’t have to walk this path. I sometimes hope that I can breathe out a wisp of curative so that humanity can return to wholeness. Is there a reason for my suffering or was it merely the lack of microbes? My life is beautiful, it’s not that bad. I should be happy. I am.

But will I ever be whole again?

I got 10 new hookworms in February 2009, then 10 more in late September 2009. My last egg count was 1400 epg. My CRP (measure of inflammation) has been normal since March 2009.  So 20 worms are working for me.  Weight’s been normal since March, I can eat most foods but still get diarrhea from too much fiber.  Now my hormones are causing anxiety/depression, but I’m assuming that’s un-worm related.   I’m almost 38 years old.

I wish we knew the ideal dosing number and dosing schedule.  It seems that those with the best response are getting at least 20-30 hookworms, though I also know of Crohns patients who had to terminate because 20-25 worms were way too much at once.  I wish these studies were faster since we’re just dosing in the dark.

The asthma study:

http://www.ncbi.nlm.nih.gov/pubmed/20030661

Experimental hookworm infection: a randomized placebo-controlled trial in asthma.

Feary JR, Venn AJ, Mortimer K, Brown AP, Hooi D, Falcone FH, Pritchard DI, Britton JR.

Division of Epidemiology and Public Health, University of Nottingham, Nottingham, UK.