Tag Archives: hives

Nearing month 6. Comparison photos and observations.

Hi everyone.

I’m six months* into this worm business and now I’m here to show you some actual results. So basically, I’m here to back my shit up with photographic evidence!

As I mentioned in my last post, my skin is roughly 99% clear. I have a few small areas on my hands that are dry and itchy. I’ll take it.

That’s the funny thing with those of us who suffer (have suffered) from skin issues. We have the physical marks to show you that we’ve healed. We can show you before and after shots without much difficulty.

I won’t keep babbling on. I’ll preach more after I post the photos.

Top left: before of chest. Top right: after of chest. Bottom left: before of hand. Bottom right: after of hand.
Top left: before of chest.
Top right: after of chest.
Bottom left: before of hand.
Bottom right: after of hand.
Top left: before, arm. Top right: after, arm. Bottom left: before, arm. Bottom right: after, arm.
Top left: before, arm.
Top right: after, arm.
Bottom left: before, arm.
Bottom right: after, arm.

And there you have it.

I just want to sort of leave you with these photos without too much celebratory hoopla.

I know some of you will still doubt these results. I know some of you will think “Well, gee. This is just a fluke.” Or, “Well, uh, maybe her skin just cleared up on its own.” Or “placebo effect…” Or any number of speculations. And I’ll say this: That’s fine. I’m so very glad that my mind is open enough to have tried this therapy. I’m so very glad that I am who I am and that I’m not afraid to be adventurous and also not afraid to go against what a doctor would advise. I’m so very glad that I decided to not sit around and stay miserably itchy and sore day after day because I was afraid of a few worms. I’m so very glad that I didn’t wait for a drug that would never come or a doctor that would never listen.

Given the choice between chronic hives and parasites, I’d take the parasites in a heartbeat.

* Please note that while my results thus far are pretty wonderful, they are not typical. My provider has reported that it is very clear that at least 50% of those who try helminthic therapy will not see results before the 6 month mark. Most will not respond until after 6 months and some could take up to 2 years to see any results. While some hosts will see a sudden change, others will not. Some will experience such gradual changes that they will not even notice benefits. Persistence is required and you must fully commit to the therapy for two years to really know if it’s working or not. I myself still have room for improvement, of course. 

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Day 59. (Someone Else’s) Success Story.

Hello loyal readers. (I know there are at least a few of you!) As promised, I’m going to share a helminthic therapy success story. But first, I want to update you all on MY OWN progress because I’m selfish like that. It’s all about me, me, me!

Let’s look at our handy-dandy timeline, shall we?

Weeks 12-20

Although some hosts have reported experiencing the start of long-lasting improvement at 7 or 8 weeks, the worms only really start to ‘work’, and symptoms begin to ease, at around 12 weeks. Allergies and asthma, in particular, generally (but not always) resolve between the 11th and 13th weeks. By week 20, the worms are usually in their stride.

I was going to update last week on the state of my skin but I decided not to. What I’m about to tell you should really be HUGE but I’m going to make light of it because that’s what I do. I’m a cynic. Last week, my skin was clearer than it had been in about two years. I was only a tiny bit itchy in a few small areas. I was so amazed that I think I was in shock and I hardly mentioned it to anyone because I just didn’t want to get my hopes up. Even Andrew, who barely notices anything unless it’s a scantily clad babe, noticed my skin and commented on it several times. (Andrew is my almost husband for those not in the know.)

I’m really glad I didn’t get my hopes up. That little stint of relief lasted about 5 days. The hives came crashing back on Sunday in full force along with my menstrual flow. I talked about this with my friends in Helminthic Therapy Support and they reassured me that symptoms tend to come and go within the first 12 weeks of therapy. Andrew and I have both decided to take it as a good sign that the worms are doing their job.

And now, I’ll shut up about me and I’ll tell you about Courtney. Courtney is someone I met in the Helminthic Therapy Support Group on Facebook. She posted her story about a month ago and it got me all choked up. Courtney is a young woman who suffers from Crohn’s disease. She told me that her mom was the person who first told her about helminthic therapy and was encouraging her to try it. Like many of us, Courtney was afraid to try this therapy. She says that it took her two years after her mom first mentioned it to finally try it. What you are about to read was written by her and shared with her permission (and I may edit it a bit to better fit this screen). Courtney posted this success story just after her two-year mark of hosting helminths.

I just hit my 2 year anniversary with helminths (hookworm specifically) a couple of days ago. I’ve been treating for Crohn’s Disease, which I’ve had symptoms of for most of my life; I was diagnosed at 19 and started hookworm at 29 years of age.

For me the improvements didn’t start happening until several months in, and once they started they were VERY gradual and I didn’t even recognize improvement until one day I just realized I hadn’t had any abdominal pain for a while. That pain is something I lived with daily for YEARS and after eating ANYthing. And all of a sudden one day, I realized it was gone. I was eating without pain. And very slowly I started noticing other improvements as well.

When I started with HW I was having as many as 20-30 trips to the bathroom per day and through the night. I had a ton of intestinal bleeding. I was almost entirely home bound because I simply couldn’t be far enough from a bathroom long enough to get anywhere, including across town to pick up my son from pre-school.

In spring of 2012, my parents had planned on going on a cruise that they had booked ages before and my mom told me when she got back that she had been afraid to leave because she thought I might not make it. I was surviving solely on Absorb Plus at that time – no solid foods and was very under weight.

In Dec of 2012 is when I got my first shipment of 35 hookworm. It was around 4, maybe 5 months in that I noticed my abdominal pain had disappeared. Slowly my stools were becoming less frequent (10-15 times per day/night). Then they started firming up slightly. Then I was noticing less and less blood. I would have 1 good day out of 7, where I would only be in the bathroom a few times and I’d have energy and feel GOOD. Some kind of turning point happened this past summer and I started feeling human again. I was able to go outside and do fun things with my kids again without being exhausted 5 minutes into an activity and desperately wanting to lie down. I wasn’t constantly running to the bathroom. Now, I have really good days probably 65% of the time.

I haven’t had ANY blood in my stools in months now and my stools are mostly always formed. Most days I’m only having a couple of BMs which are not painful. The urgency is MUCH better. Despite having a bad stomach virus twice in November, I have been able to bounce back pretty well and I’m back to formed stools and no pain. I do still feel like I have some more healing to do but after being VERY sick for so long, I absolutely realize there is a lot of damage to heal, and that takes time. I also have 2 young boys, one who is still nursing; I’m not getting enough sleep because of those things, and I frequently feel stressed, so when those things are factored in, it’s really amazing how far I’ve been able to come!

For a while I was using LDN (low dose naltrexone) as well as helminths but now I’m using helminths solely (with the exception of some vitamins/minerals, and being careful with my diet) and I’m still seeing gradual improvement. This has been the single most helpful thing I’ve ever done for the Crohn’s that I’ve dealt with forever and thank goodness my mom kept bringing it up (I should know by now to listen to my mother, she has a good track record of being right.)

Cool story, huh? I think so. And yes, I agree with Courtney. Our moms are usually right.

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 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.

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.

Inoculation Day: Take 35 helminths and call me in the morning!

Well, I did it.

My worms arrived this afternoon.

I had considered posting photos of all of the materials that arrived but I thought better of it. As I’ve mentioned before, I won’t do anything that could potentially jeopardize my providers operations. I’d like to continue to receive therapy from them and I’d like for others to be able to continue as well. So, I’ll have to do it the old fashioned way and describe it all in writing. Don’t worry, I’ll throw up a few photos to keep things interesting.

After allowing the materials to come to room temperature, I started to prepare for inoculation. Two small vials, one bulb pipette, and a gauzy bandage were received. (No instructions come along in the package in case of interception by unknown entities. You’re sent all instructions via email.) One vial contained 35 hookworm larvae (which are not visible to the naked eye). The other vial was an unknown solution of perhaps saline that was simply used to rinse out the larvae vial and bulb pipette after placing all of that material onto the center of the bandage. After all of this was complete I slapped the bandage onto my inner, upper arm.

inoculation bandage!
inoculation bandage! there are worms in there!

That’s really all there is to it friends! But wait, I haven’t really gotten to the good stuff yet.

In my instruction packet, I had read that you should start to feel a stinging/burning/itching sensation right around the 7 minute mark. This proved to be fairly accurate in my case. This is how you know your larvae arrived to your home alive. You’re feeling them burrow into your skin. No big deal, right? Honestly, it’s not a big deal at all. It’s much less horrifying than it sounds. And for me, a person who has burning/itching skin on the regular, this shit has NOTHING on what I deal with daily. For example, the hives I have elsewhere are much more bothersome to me right now. So much so that I don’t even feel the inoculation rash at all. However, I’ve read and am told that the inoculation rash can get worse as the treatment timeline progresses.

The photos below show the current state of my skin. I have other areas that I haven’t photographed out of decency. These photos show the reasons why I’ve infected myself with parasitic worms today.

crook of my arm; urticaria/eczema.
crook of my arm; urticaria/eczema.
stefarm2
crook of my other arm; urticaria/eczema.
stefchest
chest, shoulder,neck,breast; urticaria/eczema.
stefhand
hand and wrist; urticaria/eczema.

 

I’m about 6 hours post inoculation and I’ll be leaving the bandage on for a full 12 hours. All larvae should have wriggled into my bloodstream by now.

I have access to a great document (written carefully and expertly by a fellow helminth host) that includes a rough day by day timeline of what to expect post inoculation. It contains information on where your larvae should be in your body and when and what side effects you’re likely to experience on certain days.

I’ll be documenting all side effects and anything that I feel at all here. I’ve been in touch with my provider this evening and have let them know that my worms arrived alive. My next dose of hookworm should be arriving in 3 months time. Exciting!

Stay tuned until tomorrow when I post photo(s) of the inoculation rash. I’m afraid it(they) may pale in comparison to my urticaria photos from today.