Ups and Downs and Holidays

Dec. 28, 2013

I expected many more ups and downs with this last inoculation, and the past week I have experienced some downs. I have been extremely exhausted but am not doing anything to exhaust myself, and am experiencing more of the old Crohn's like symptoms, especially pain, bloating and diarrhea. Once again, this may be my actual disease, or side effects associated with the HW or a nice combination of both. Around the holidays we all tend to binge on food a little bit, and while most people are concerned about gaining weight, I worry more about what this will do to my digestive system and usually it wreaks havoc.

In any event, I'm feeling slightly better today, and hope to continue to improve. I am also looking forward to getting my next WW dose. There is a new dosing regiment for the whipworm, where you take it more frequently in smaller doses. I think there is a lot of promise with this schedule. I'll try and post something at the end of January. Happy New Year!

-Amy

50 Hookworm, Big Rash, Feeling Good

12/8/2013

I am cautiously excited about my most recent hookworm dose as the past couple of days, gut wise, I have felt pretty good! I inoculated on Tuesday evening, felt the itch immediately and have a very intense rash (these are all good things.)

I have had less urgency going to the bathroom and my stomach has felt pretty good most mornings (which is rare.) I also seem to have more energy and my sense of smell for some reason is improved (not that it was bad before but now it is heightened)

As I said, I am cautiously excited because I want to keep my hopes in check, but feel like this may be the start of some more noticeable improvement

I was thinking the other day that while I haven't seen really obvious changes, there have been smaller less noticeable improvements that have sort of snuck up on me such as: 1) The fact that I haven't needed to take prednisone since early August (and was taking it most of the summer.) 2) I have slightly less urgency in the mornings, and 3) I am able to run regularly with few problems. While I am hoping to eventually feel a lot better than I feel now, I should take the time to notice and appreciate these smaller signs of improvement because they still count.

Thanks for reading!

40 more Hookworm

August 12:

Last week I received (as expected) 40 hookworm organisms! Hooray! I inoculated on August 5, and felt the itch and got a nice rash.

These are of course great things because it means that it took (technically at least.) Hopefully this inoculation "woke the worms up" from their "nap" while I was taking antibiotics, and I will start to be feeling some good effects in the next couple of weeks.

It is difficult to tell how I am doing overall because I have been under some serious stress in my life right now which undoubtedly has an impact on my symptoms and overall health. I'm trying to keep things as regular as possible. I'm excited to go on vacation on Saturday and relax by the ocean in Cape Cod... I'll post another update in the next couple of weeks, especially if I notice some good differences!

Thanks for reading!
-Amy

Maintaining...

July 29:

It has been a while since my last post, but I have since ended my course of antibiotics- which is a wonderful thing- and I am ANXIOUSLY awaiting the arrival of my next HW dose. I am especially anxious because while taking the antibiotics I may have harmed my worm friends, and by inoculating soon after my course of antibiotics ends will hopefully "wake them up."

According to the literature on Hookworm inoculation, antibiotics can create a period where hosts may lose some effectiveness from the worms. Since I don't feel that at this point I have really gained much effectiveness (although maybe a little) from the worms, I don't feel very different (good or bad). I have also been taking a lot of probiotics which may offset some of the damage to the worms, and help the overall symptoms of Crohn's. When and if people experience benefit from the worms varies greatly but I am within the time frame of when I should expect to see some benefit. I am taking into account the antibiotics which may prolong the benefits even more.

As always, I'm trying to stay positive, I'm continuing to eat healthy, exercise and I have been getting some good ol' vitamin D (sun!!) I should receive my next HW batch early next week and will update then.

Thanks for reading!
-Amy

Ups and Downs and antibiotics...

July 18:

Aside from it being extremely HOT (at least for Vermont) I have had a rough couple of days but am on the mend. I am one of the "lucky" 30 something % of people with Crohn's who get something called fistulas which are essentially an infection caused by inflammation. They are rare in the disease, however they are very difficult to get rid of. My GI and I have a pretty good system where I notify him when I feel one coming on, and he will prescribe flagyl (which causes extreme nausea, tastes metallic, and makes me gag) and a 7 day course of this usually takes care of it temporarily. I typically have a fistula flare every 6-12 months depending on how my disease is overall. For the past couple of days I have been very sedentary because I have been in too much pain to move around, which has been kind of miserable.

Yesterday I felt the beginnings of healing and while healing can be slow, it is a GREAT feeling! I'm feeling more optimistic, and hopefully will continue to get better. One other thing about flagyl a drug I hate more than prednisone, is that it makes the helminths go dormant and in some cases may kill them. From what I have read though, killing helminths is actually pretty difficult to do, and a short course hopefully-crossing my fingers- won't do to much. I spoke with my provider and he said something similar. Also, my next dose of HW is scheduled to arrive shortly after my course of antibiotics ends, so I'm hoping this will wake the worms up!

And yes, I googled "sleeping worms" for this :)

Thanks for reading!
-Amy

No More Prednisone (at least for now)

July 10:
For those of you who have never taken prednisone, it is hard to explain how awful it makes you feel mentally, emotionally, physically... but now I am beginning to feel like this!

I'm still continuing to feel pretty good, even though I ate a couple small things off the diet today. Hopefully it won't set me back too much. I just went for a lovely HOT run even though it's 8 pm. which was a great end to the day. I'm also feeling really grateful for all of my friends and family who have been SO supportive during this time. It means so much to me that people continue to ask how it's going, and read my blog. THANKS EVERYONE! That's all of now!

-Amy

Tapering off of prednisone and still feeling good

Saturday, July 6:

I am now down to 10 mg of prednisone, but am continuing to feel good. It feels GREAT to get off of prednisone because it truly makes me feel CRAZY!


I have been sticking to the SCD diet which I think is helping. I have been following it 100% for about three weeks now. My ultimate goal in doing the helminthic therapy is to be able to eat whatever I want (within reason) AND feel good, but I recognize that in order for the therapy to work I need to keep my symptoms under control. I have been taking probiotics every day, and am increasing the amount I take which will only continue to help. I have been running a lot and trying to drink lots of water which comes naturally when it's really hot out (as it has been.) Today and yesterday I took some allergy medication which has been shown to help with helminth side effects. It seems to be helping although I think there may be some placebo effect taking place as well. Either way, I'm just happy to be tapering and still feeling good.  I will need to wait and see what the next couple of weeks bring, but by mid July I should start to notice some good benefits from the helminths. That's all for now, thanks for reading!

-Amy

More Whipworm friends and continuing to feel better

July 2:

Last night I consumed my third dose of Whipworm, shooting back 200 ww ova down the hatch! Below is a picture of the vial they come in. It's very small, about the size of my pinky. The first two times I drank the ww ova my stomach felt a little unsettled immediately after, but I didn't really experience anything this time and what's even more exciting is that I actually feel pretty good this morning.

I woke up really early (as I have been doing with the stupid prednisone which makes it difficult to sleep) and would normally have to go to the bathroom right away. However, this morning I was able to hold it and go back to sleep which is something that I am rarely able to do because as soon as I wake up I experience tremendous urgency. I see this as a small success, and hope to have more days like today. As I posted previously, mid July (which will be almost 50 days since I inoculated) is typically the time when people hosting helminths start to experience some good effects from the HW, and now that I have about 400 WW I should start to notice some of the benefits of both in late July/ early August. That's it for now, thanks for reading!!

-Amy

Feeling Like a "Normal" Human Being

June 24:

After a rough couple of days I feel much, much better. I love the feeling of getting better after being really really sick, it makes me feel superhuman!

Or maybe that is just the steroids... Anyways, I'm hoping to not only recover from this virus that I've had, but also start noticing some of the benefits from the helminths soon! Mid July is when I should start to see some changes, but it could take longer. The process is long, but I'm trying to eat healthily, rest and take care of myself as much as possible to ensure that my worm friends settle in. That's it for now. Thanks for reading!

-Amy

Off the tracks but I made it to the station eventually..

June 22:

So I guess I'm using train metaphors now....Anyways the last couple of days have been rough to say the least... I woke up in the middle of the night on Wednesday night with harrowing stomach pains. Typically when this happens I will spend some time on the toilet and things eventually resolve themselves. This was by far the worst stomach pain I have EVER experienced. This is what I felt and looked like...

There were intermittent waves of burning, nauseating, sharp pains that would not go away. This soon lead to projectile vomiting, and stuff coming out the other end too :/ From 3:00 a.m.-11:00 am the next day this continued, at which time I went to the emergency room at my doctor's recommendation. They helped hydrate me, checked to make my organs were all working (and thank goodness they were), gave me some heavy duty pain meds and sent me on my way...

The remaining question is, what was wrong- which is still not entirely clear. At first I thought it might be the worms, but to have such a strong reaction to side effects from the worms is extremely rare. Other variables in this equation were questionable chicken, a fluke Crohn's "flare", a stomach virus, or some combination of all of these things. Thankfully I am finally starting to feel like a normal human being, am eating solid meals, and no longer have the harrowing pains. My worms are also safe and sound. Hopefully I will continue feeling better.

Thanks for Reading!
-Amy

On the Right Track

June 18:

I had a long talk with my provider today, and although I having been having a lot of symptoms, he felt confident that it means the worms are working and just trying to attach, and find their home. I think I may be over-analyzing things and I really need to practice more patience and have faith in the process. It is a natural human reaction to feel that something is wrong when you don't feel good, so I'm allowing myself to be a human being but not get carried away with questioning :) My next dose of WW is July 1, and I will do 200, so hopefully something will start happening soon.

I felt pretty good today, even though I was up a good portion of the night in the bathroom... I was able to run 10 miles this morning, and it was a perfect day to do it, then I spent the rest of the day relaxing. I'm looking forward to some much needed time off this week from work and school, and am looking forward to spending it with friends!

Thanks for Reading!
Amy

Back on Prednisone but staying positive

Saturday June 8

So I have been having some symptoms/side effects, and can't really tell what's causing it. I had a couple really good days at the beginning of last week, but have been having a lot of pain, blood, etc. that has made me think it would be best to do another short course of prednisone. As much as I hate it, it seems to get things back under control.

I'm also going to make more of an effort to follow the SCD diet which will only help me to feel better and then the worms have more of a fighting chance. When people are actively in the middle of the flare, it's less likely for the worms to attach in the small intestines. It's important to get things under control so the worms are able to begin helping.

I'm on day 25 post HW, which is when people have reported some side effects. I'm also post one month  + a week since doing my WW which is ALSO when people report side effects. I am hoping that these side effects or symptoms clear up, but I'm trying to stay optimistic. My next WW will be July 1, so I'll update then. Thanks for reading!

Amy

Update

Saturday June 1:

No real news to report, except that I don't feel much worse or much better. Some people experience a "bump" in symptoms during this time where they enter a short period of remission. Sad to say I don't think I'm there, but I continue to be optimistic that something should start changing soon.

I took my second HW vial on Wednesday night- and it tasted "salty like tears" (the words of my provider) but went down easy. My stomach was not happy two days after which could have been from the WW or something else. I had really bad abdominal cramping in the middle of the night that woke me up but no diarrhea or anything.. It has since passed which is nice. It's now just time to wait.... and I'm trying to stay patient.

Thanks for reading,
Amy

Update

5/25/13

10 days post inoculation, and feeling okay. My rash has gone down significantly, and is hardly visible or itchy. I'm glad about this for purposes of blending in with strangers, but it was kind of cool to show it off to people.

I have developed what feels like a sinus infection, and my head feels like a balloon which is no fun. In the hookworm timeline, some helminth hosts do report a cough and respiratory symptoms, so I'm keeping my fingers crossed that this is another sign of inoculation success. These symptoms happen as the hookworms migrate from the skin to the lungs, where they are "coughed up"and propelled into the digestive tract. I have also considered that being on prednisone (which I am) can leave one vulnerable to more infections because it suppresses the immune system, so it may be more of a result of this than the helminths. There are lots of variables to consider, and I'm trying to keep things as constant as possible so that I know when the helminths start working :)

I'm trying to stay optimistic, in spite of some annoying side effects. My next whip worm dose will be coming up soon, and I will report back then.

Thanks for reading,
Amy

5 Days Post Inoculation

Sunday, May 19: According to the Hookworm Timeline Days 3-5 post inoculation may cause respiratory symptoms, GI symptoms, and the rash may flare a bit. These symptoms are because the larvae migrate into the lungs where they are coughed up (you don't feel them or anything) and then they go down into the digestive tract. While I don't have a cough, sore throat, or anything I do have GI symptoms, and the bumps from the rash appear slightly more raised (see picture below). Everyone's course is different with helminths, but experiencing some of the expected side effects tells me that it's working :) 

I visited my doctor on Friday and she gave me a short course of prednisone at my request. My provider (The company that provides the helminths to me) has said that people sometimes go on a short course of prednisone to deal with the side effects, but only short term. On another note, my doctor has been incredibly supportive throughout this process. She has been open to alternatives and has agreed to support me and provide any necessary medical intervention along the way. Day 6-14 people sometimes experience a sudden but short term remission of all symptoms and side effects, so I will report back if that occurs- with elation! 

Thanks for Reading!

Two Days after Inoculating

5/20/13

Two Days After Inoculation Thursday, May 16: Rash went down a little compared to the day after inoculation. It still continued to itch, but topical Benadryl seemed to do the trick. My GI symptoms kicked up almost immediately though with lots of gas, bloating, stomach pains and all the "fun" stuff that goes along with it. The side effects are similar to what I experience when having a flare- so it could be some of that too. 

Helpful Documents

Here are some helpful documents for understanding Helminthic Therapy. These are some of my favorite, but more resources can be found on the AT website:
http://autoimmunetherapies.com/

Timeline for Hookworm
http://www.foodsmatter.com/natural_medicine_comp_therapies/helminthic_therapy/articles/hookworm-timeline-03-12.pdf

The Science Behind HT (Helminthic Therapy)
http://www.foodsmatter.com/natural_medicine_comp_therapies/helminthic_therapy/articles/hookworm-timeline-03-12.pdf

Stories of Success
http://www.foodsmatter.com/natural_medicine_comp_therapies/helminthic_therapy/articles/hookworm-timeline-03-12.pdf

Successful Inoculation: Hookworm Trial 3

5/15/2013

Hi all,

I received my batch of HW yesterday, and the inoculation seems to have been very successful (see photo below) with a lot of itching and many little red dots. I'm very excited and feel like my journey will now begin!

On the not so positive side- I do seem to be having some really bad stomach pain, and associated symptoms. It feels like it could be related to the actual Crohn's, but I haven't had a morning this bad in a while, which leads me to believe it could also be a result of my " worm-friends". If this persists, I may contact my doctor and go on a short course of prednisone, but I'll wait and see because I really hate prednisone.

Thanks for reading!

Another Update: Hookworm Trial 2

So, I felt an itch which is a good sign, but no significant rash (only two small red marks as you can see below) According to my provider, a therapeutic dose would produce a larger rash, with more dots because they are entry points into the body for the helminths. I'm going to get another dose next week, and hopefully it will produce a huge rash (I don't often hope for a big rash on my arm).

I feel slightly frustrated that I need to keep dosing, but it's sometimes just the way it goes according to what my provider has told me. The helminths are very sensitive to temperature changes and sometimes they die off. Keeping my fingers crossed for a new dose of happy and living organisms in the next couple of days.

Hookworm Trial 2

5/6/13

Hi Everyone! I just received my hookworm and I'm hoping it will work this time. I just applied the bandage with hookworm from the vials as instructed. See photos below: first is my inoculation station, second is the hookworm on my arm. They say an itching sensation happens soon after inoculating which lets you know that it's working, so I'm keeping my fingers crossed. I will keep updating to let you know how it goes.

-Amy

Update

4/30/12

Seems as though the HW didn't take. Going to get a new supply in a couple of weeks. Trial and error...

:)

Day 1: Post Inoculation

4/30/13
Hello Friends!

Last night I finally started the Hookworm and whipworm therapy! I was nervous but also excited! The whipworm was successful, but the hookworm might not have worked. It doesn't last very long in the refrigerator, and it spent three days in there, which may have been too much. If that is the case I will just try it again.

So far, I haven't noticed any symptoms which are sometimes quite strong in the first two weeks following inoculation. I actually feel great today, aside from being tired from life and not getting enough sleep...

I'll keep you posted on the hookworm success and how the rest of it goes.

Thanks for following!

Amy

Welcome to the blog!

Hello!

Thanks for reading this blog on my experiences with Helminthic Therapy, an alternative treatment for many autoimmune disorders in our society today. My purpose for starting this blog is to update and educate friends, family, and other interested parties.

Background:

My name is Amy, I am 27 years old and I have had Crohn's Disease, a gastrointestinal autoimmune disorder, since the age of 13. I live in Burlington Vermont, with my boyfriend Bill and I'm currently in graduate school for my Master's in Social Work. I am an avid runner, and enjoy spending time with my friends and family.

Upon receiving this diagnosis, my doctor prescribed almost every medication that was available to Western medicine for the treatment of Crohn's, but I was unable to keep my symptoms under control. I was on a high dose of prednisone, a steroid with terrible side effects such as insomnia, acne, bloating, and irritability. I was also taking antibiotics with equally as horrible side effects, as well as a couple drugs which suppress one's immune system. After months on these horrible drugs, and no improvement, my parents and I both looked to alternatives.

I started the Specific Carbohydrate Diet, which put me into remission for nearly two years. The diet is something I still believe in, and adhere to as much as is humanly possible. Unfortunately it requires very strict adherence- and it has been difficult for me to continue on it 100% which means more symptoms.

In the past 5 years or so, I experimented with Pharma again- and very recently considered starting one of the biological injection drugs, in spite of the high risk for a variety of side effects. I have always been weary of the drugs available to people with Crohn's Disease, and felt that starting one of these drugs would be untrue to my beliefs. I also feared living with some horrendous side effects, including the looming possibility of developing cancer!

One day, a few months ago, my boyfriend started reading more about helminthic therapy, and brought it up as a possibility. I had heard about this before on an NPR program covering the topic of parasites, and while I was intrigued by it before, I never considered it as a viable option. I was also deterred by it's lack of availability of it in the United States, and the whole idea of actually infecting myself with a parasite! In spite of my reservations, I started doing some extensive research, and found that actually starting the therapy would be much more feasible than I ever imagined.

With the help of my provider, who answered my MILLION questions, I started the therapy, and feel optimistic that it may provide some relief from my disease in the future.

If you have any questions- please ask!

Thanks for reading,
Amy