Tag Archives: flare up

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.

 

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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 7. No bounce.

Hey folks.

Not much going on here that’s out of the ordinary. Just having a giant skin flare-up that’s causing me much grief today. I’m a huge, itchy, wanting-to-cry mess. I’m not sure if this is from the immune response to my new, still microscopic pets but I’m looking forward to better days. I know they’ll come eventually. I’ve also had some weird tingling/numbness in my hands and wrists that isn’t quite normal for me.

So, again, here is what could potentially be going on with me right now. This is taken directly from the document titled, Hookworm timeline: what to expect after inoculation with hookworm larvae, written by John Scott:

Day 6 to end of Week 2

Typically, not much happens during this period, unless it is a continuation of symptoms that started within the first few days. The only change that may occur is a possible ‘bounce’. This is a fairly unusual phenomenon observed in some subjects but not described in the literature.

The ‘bounce’ is a period in which all the subject’s usual symptoms (Crohn’s, asthma, allergies, etc.) disappear, sometimes completely. It typically occurs around the end of week one, perhaps as early as day five and even as late as week two. It can last about a week, but may appear for only 3-4 days, or, rarely, last for almost two weeks. Often this cessation of symptoms is accompanied by a wonderful feeling of calm, serenity, well-being and happiness.

It is easy to take a ‘bounce’ as evidence that the worms have ‘worked’ and that all will be well form this point on. Unfortunately, the ‘bounce’ never lasts, so one should not suddenly abandon whatever medications one is taking, or the diet one is following! This phenomenon is only temporary and not an indication that one has achieved remission in record time.

The appearance of a ‘bounce’ may be due to the fact that the body suddenly finds it has an appropriate target at which to aim its immune artillery. Alternatively, it may be due to something that the larvae are doing that elicits a strong response that quells inflammation. Either way, the ‘bounce’ is something to be enjoyed… while it lasts.

The worms are now maturing in my intestines. Soon they will be visible to the naked eye. Cool, huh?

I’ll post some more interesting bits tomorrow. In the meantime, if you’re reading this and would like me to cover a question you have or another related topic please comment and let me know.