Tag Archives: how it works

Day 29. Tales from the Crypt(o).

It’s been nearly one month since I infected myself with hookworm! And speaking of infection, I have a shiny new one to report on which caused me to have minor surgery in the emergency department yesterday. I’m fine. I just have a skin abscess (that is roughly the size of a golf ball) due to taking immunosuppressant drugs. It’s pretty gross. Much grosser than parasitic worms that feed on my blood. It’s also very painful. They even gave me Vicodin for it which really knocks me out. I’d much rather have something like this than chronic itching, however. And said chronic itching is back in full force since I stopped the steroids in order to heal this wound.

Plus, I’m now on antibiotics. I’m a bit worried about my worms. There are some antibiotics, like amoxicillin and clindamycin, that will most certainly eliminate helminths. I’m taking Bactrim which is not listed as a known antihelminthic (worm killer). It is possible that even short courses of antibiotics could cause a return of symptoms in some people. I’m not at that stage yet but I worry that my worms will be affected by this.

I want to reiterate that this skin infection has nothing to do with the worms. It’s caused by prednisone which has far more dangerous side effects and is also approved by the FDA. Oh, and it’s much more socially acceptable to take prednisone than it is to take worms. And by socially, I mean foolishly. I say all of this and still use prednisone. Until the worms start to work, prednisone is a necessary evil.

The purpose of this post is not to complain about stuff. I came to tell you about a parasite I had back in 2006. Cryptosporidium!

Cryptosporidium is a nasty little parasite. From the CDC website:

Cryptosporidium is a microscopic parasite that causes the diarrheal disease cryptosporidiosis. Both the parasite and the disease are commonly known as “Crypto.”

There are many species of Cryptosporidium that infect humans and animals. The parasite is protected by an outer shell that allows it to survive outside the body for long periods of time and makes it very tolerant to chlorine disinfection.

While this parasite can be spread in several different ways, water (drinking water and recreational water) is the most common method of transmission. Cryptosporidium is one of the most frequent causes of waterborne disease among humans in the United States.

Where I contracted crypto was one of two possible scenarios: tubing in Lake Erie or helping family members clean up after a flood. No one else in my family (or anyone I know) was graced with crypto. Just me! I was sick for over 3 weeks. At that time, I had stool cultures done through the laboratory I worked in. The health department called about my diagnosis. It was pretty funny answering the phone there and talking about myself. And then they called my personal phone and were very confused as to why they were talking to the same person who took the call at the laboratory.

Crypto really does cause geysers. Geysers for days. And days. And days!

The weirdest thing about crypto was that it cycled or came in waves. I’d be miserable for 4 days and then I’d have a break for 1.5 days. It tricks you into thinking you’re better and then it comes back in full force. When you hear someone say they lived in the bathroom, that really happens! I laid on the floor with a pillow and blanket and truly made myself at home.

My point in telling the crypto tale is that the past experience with a parasite and this new experience with parasites are worlds away. Cryptosporidium was contracted “in the wild”. My human hookworm infection is controlled. I don’t even notice the worms are there. In fact, had I not intentionally infected myself I wouldn’t know they were in my gut at all.

Thanks for reading! I’m going to try and update more than once per week in the future.

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Day 23. Merry Wormsmas.

I’ve made it to day 23 without any sort of geysers. Phew!

I’ve been on steroids for the last week. Yesterday, I took my last dose of those and today I am experiencing joint pain, severe itchiness, gut aches, and dizziness. I decided to call my doctor and see if I could get some more prednisone to get me through Christmas. She refused to give me more steroids and told me that I should just take Allegra or Benadryl. She was forgetting what I told her when I last saw her: that I take enough antihistamines to cause toxicity. I take 1,080 mg of Allegra per day. That’s 6 of the 24 hour tablets. She was forgetting the gasp and scowl she gave me when I told her just how much I was putting into my system and just how little benefit I was getting from all of those pills. Today, I told her receptionist that I just wanted to be able to enjoy the holidays. They could not have cared less.

I’ll stop whining now. I do have perspective and realize it could always be worse!
Here’s what’s happening on “the timeline”:

Anyone reaching day 23 without experiencing significant symptoms will almost certainly be in the clear.

Allergies may get somewhat worse in the first 4-5 weeks, due to an increased inflammatory reaction, before usually improving after this.

Worms begin producing eggs between weeks 6 and 8, and, although egg output may remain low for several more weeks, some hosts have reported that they experienced the start of long-lasting improvement at 7 or 8 weeks.

And since I don’t have very much to offer this week in the way of interesting/fun material, I’ll leave you with a fun and festive song written by John Scott:

A Helminthic 12 Days of Christmas

On the twelfth day of Christmas
my true love sent to me:
twelve donors pooping,
eleven stools-a-steaming,
ten eggs-a-hatching,
nine technicians counting,
eight doctors doubting,
seven asthmatics singing,
six autistics mingling,
five years relief,
four months wait,
three days itch,
two plastic tubes,
and thirty five hookworm larvae.

Day 16. They’re moulting! MOULTING! (Or my little babies are growing up!)

Oh, hi there!

I’m happy to announce (happy is being used very loosely here) that over the weekend I broke down and had to go and basically beg for steroids to control the immune response I was having from my lovely little hookworm pets. As unpleasant as I was feeling, I take it as a good sign that maybe (just MAYBE!) this journey shall not be in vain! Sorry to sound all biblical and shit. I don’t really feel as if I’m moving mountains or paving the way or anything like that. There have been many far braver souls before me. (muahaha!) Okay, I’ll stop now.

The side effects I was feeling were completely normal and expected. No gastrointestinal issues really besides a mild gut ache — Just an epic skin flare-up (the kind where you scratch until you bleed), joint pain, and rather intense tingling and numbness in my hands.

So, if you’re following along I’ve been referring to the Hookworm timeline: What To Expect After Inoculation With  Hookworm Larvae — written by John Scott (who is a serious wealth of knowledge). I’m getting pretty close or damn near to the stages you are about to read below at week 3. I’m going to summarize what John wrote and edit the English a bit since he is from the UK and some of you people will just ask me too many damn questions or wonder why he spells diarrhea funny. (I kid! I love your questions!)

Week 3 to week 10

The hookworms moult and become adults after reaching the intestines, and attach to the intestinal wall towards the end of week 3. Their eventual home is usually the lower reaches of the small intestine, unless this has been surgically removed, or an individual has hundreds of worms.

Side effects at this stage can include, in order of occurrence: fatigue, cramping, bloating, gas, epigastric pain (stomach ache all over the abdomen), diarrhea, nausea, and a recurrence of the skin rash. A few people have reported constipation.

For those individuals who get gastrointestinal side effects, these are most likely to occur around day 21, as a result of the body’s attempt to expel the worms by deploying eosinophils – white blood cells that attack helminths – to cause eosinophilic enteritis. In most people, this inflammatory response translates to a few days of loose bowel movements or diarrhoea, perhaps accompanied by fatigue. A few people may get prolonged gastrointestinal symptoms continuing for many weeks, even into the low 20s, but it always resolves eventually, without treatment, and with no harm done.

The severity of the side effects varies enormously from person to person. Only a small percentage – perhaps five percent – experience stronger side effects, including pronounced diarrhea and cramping due to gas, which can be spectacularly bad and has been described as ‘toxic’, ‘industrial’ or ‘otherworldly’. Rarer still are fever, night sweats and joint pain. For those suffering the worst side effects, even if it is only a few percent of those who try the therapy, the effect is such that study or work would be very difficult. (Sorry, but I had to keep the “toxic/industrial/otherworldly” part in there. Cuz, well, it’s me.)

All the side effects except the skin rash normally reduce sequentially with successive doses. 

The skin rash at the inoculation site may also recur during the gastrointestinal side effect phase, perhaps because the worms shed cells and debris from their skin as they migrate through the host’s skin, and, when the worms attach and put the same kind of material (their skin) into contact with the host’s immune system in the intestines, the host’s immune system releases antibodies to those types of cells or proteins wherever they occur, whether in the intestine or in the skin.

Strangely, the first few hookworm doses produce a successively more pronounced skin rash, with the fourth or fifth inoculation leaving some people with a very impressive ‘love bite’, perhaps even surrounded by a halo of apparently bruised skin which can become raised and may be as itchy as the rash site itself.

Apart from the skin rash, which tends to ease after a few days, all the other side effects typically come and go, and the experience can be very much like riding a roller-coaster. There is also enormous variation between individuals, with some people getting no symptoms at all, and others experiencing relentless fatigue, disabling abdominal pain and geysers of diarrhea.(Geysers, people!) 

None of the geyser stuff has happened to me and I’ll be quite content if it does not, thank you very much. The inoculation rash has flared up a tiny bit and you can see many little dots where the little larvae entered my skin. Photos don’t do it much justice. It’s difficult to see the dots via photograph and it is diminished due to the way the rest of my skin looks.

And lastly… if anyone knows of any good doctors near me, in Cleveland, Ohio, that will actually listen and be supportive of me during this process and not look at me as if I’ve sprouted a second head after mentioning undergoing a treatment NOT approved by the FDA (*gasp!*) please throw me a bone. I’m not saying anything super negative about my doctor. She is just anti-drug (which I normally like) and won’t give me prednisone so I need to go to urgent care or emergency departments for it. I will say though, that I don’t care one freakin’ iota if something is approved by the FDA or not. I could go on and on about this but you’ll be even more bored than you already are.

As always, thanks for your support and for even just reading.

 

Day 10. FAQ.

Hi guys. I have not yet succumbed to the “worm flu” but I have been feeling a little off, especially this evening. Nothing too crazy. Just dealing with the same out of control skin flare-up, some mild joint pain, tingling in my hands/wrists, occasional mild dizziness, and fatigue. Apart from being maddeningly itchy, the rest is pretty easy to deal with. I will survive!

Today, I’m going to answer a few questions that I’ve been asked as well as list a few other frequently asked questions (Mom, that’s what FAQ means!) and answers. I encourage more questions! Keep them coming.


Questions From Friends

Jnettie asks, Q“What are these worms living on in your body? (Basically, are you about to become super model thin?)”

A: Jnettie, you of ALL people will love this answer. Basically, the worms are vampires. They will be feasting on my blood. They are not yet, at this point in the timeline, feasting on me. Right now they are still maturing. Once mature, they will attach to the mucosa of my small intestine and basically feed on my blood with those very sharp teeth of theirs. This is why anemia is a side effect of helminth infection “in the wild”. When a person becomes infected with hookworm “in the wild” they can be infected with hundreds of worms at once. This, for obvious reasons, can make the host very ill. It is also known that hookworm secrete a powerful blood thinner which can obviously contribute to the above issue. When undergoing helminthic therapy, you are taking what’s called a ‘therapeutic dose’ of helminths, small enough to be benign and not typically cause such adverse effects.

Peppermint Patti asks, Q: “How do those worms NOT multiply all up in you?”

A: PP, it’s impossible. They cannot reproduce inside a host organism. It goes a little something like this: the adult helminth lives inside the host intestine, producing eggs, which are then shed with the host’s feces. The eggs typically become infective or hatch into larvae while in the soil. The eggs need to be in an ideal environment with the proper amount of time, usually about 8 days, to hatch. The larvae can survive in water for around a month or so. When in soil, they have been found to be able to migrate around a foot each day for up to 6 days — this is one of the reasons why outhouses were designed with 6 foot holes. Supposedly, they can only migrate 1 foot per day. The larvae can’t reach the surface of the holes if they’re 6 foot deep because they will die first. And as you know, we have modern sanitation in this country and our waste is treated. You won’t ever get worms from me. In a nutshell, I took a dose of 35 hookworms. 35 hookworms is the maximum amount I have until I inoculate a second time.


Typical FAQs in “the literature”

Q“Are helminths easy to eliminate?”

A. Yes. Very. You can take a single dose of an anti-helminthic drug called albendazole or a 3-day course of mebendazole via a prescription from your doctor. See the diagram below. Notice how there is no suggested treatment for a light infection. Anyone undergoing helminthic therapy would be considered having a light infection.

CDC treatment diagram. notice "light infection" -- that'd be me.
CDC treatment diagram. notice “light infection” — that’d be me.

Q“Can you accidentally kill your helminths?”

A. Yes. Not many things kill helminths but it is possible. Nitrous oxide is pretty well-known in the helminthic therapy world as something to avoid. Helminths are extremely sensitive to it. So, I must stay away from Redi-Whip *sad face*, Easy Cheese *double sad face*, and Whip Its *triple sad face*!  I am advised to try to avoid antibiotics and anesthetics as well as they may interfere with the efficacy of helminthic therapy. If I accidentally kill my pets, my provider will supply a supplemental dose for a fee.

Q: “How long does helminthic therapy take to work?”

A. The answer to this is unknown. The length of time is different for each and every case. It’s dependent upon your specific disorder, genetic makeup, disease history, medications taken, and so on. Typically, if you are going to benefit from helminthic therapy, you begin to see signs of improvement between 3 and 6 months after beginning treatment. Although improvements can be seen as early as 7-9 weeks, 4-5 months is more common and 9 or more months is part of the normal range. Subtle changes in the immune system will usually be ongoing for several months or even years. The full effects of helminthic therapy are typically achieved after a year of more of hosting helminths and in some cases up to 2 years.

Day 3

Still alive here. Haven’t died from the worms yet.

I’m going to include some information I have here, and this will probably be a regular thing as the timeline progresses, from a document I have obtained from the wonderful Helminthic Therapy Support Group on Facebook. These folks know their stuff and have been a terrific resource for me and for countless others. Facebook isn’t always so bad. (Thanks HTSG!)

The following smaller italicized text is taken directly from the document titled, What to expect after inoculation with hookworm, written by John Scott, April 2012:

Days 3-5

Having migrated from the skin, via the bloodstream to the lungs, during the first two days, the still-invisible larvae then burrow through the lining of the lungs to join all the particulate matter – dust, smoke particles, pollen, etc. – being swept up along the ‘escalator’ of hairs that lines the inside surface of the lungs. This ciliary conveyor belt eventually transports the larvae to the throat, where they transfer from the airway to the gullet before continuing on their journey down to the stomach and on to the lower intestine, where they will spend the remainder of their 3 to 7 year life span (average 5 years). 

Occasionally, the migration of the larvae through the lungs may make some people cough, though this dose-related effect is actually quite rare. Coughing up phlegm and/or spitting should be resisted from days 2-5 to avoid expelling larvae that might be passing the throat at the time, on their way from the lungs to the gastrointestinal tract.

Common side effects at this stage are, in descending order or occurrence: a flare of the skin rash at the site of inoculation, fatigue, diarrhea, cramping and gas, nausea and vomiting. Children may display behavioral changes akin to those seen in a child with flu or allergies – lethargy, crankiness, etc.

(Yes. People do treat their children with helminths. Don’t judge.)

So far, no side effect to report here besides the inoculation rash. As I’ve mentioned before, the rash is not bothersome to me in the slightest due to all of the other skin eruptions I’m dealing with currently. The site actually feels a bit sore when I touch it. Maybe that’s to be expected? I did, after all, have 35 hookworm larvae crunching and munching their way through my dermal layers. Delightful, eh? I think so. Check out the photo at the top of this post and you can see their ‘dental plates’. He looks quite angry about something.

That’s all for today. I’ll educate you some more tomorrow.