Worms to my Rescue!

Sorry!

michellerowley — Mon, 10 Oct 2011 17:37:39 -0700

A quick apology to everyone who asked a question in the past … crap, like 6 months. Tumblr was sending me notifications via email when I got questions, and I guess it stopped doing that a while ago. I’ve answered a lot of questions this afternoon, so I hope that’s helpful! I will try to fix the notification issue and be more on top of sharing my progress.

It is true that no news is good news… I’ve been feeling quite well so I haven’t thought about posting here. I inoculated with 50 more larvae recently and getting some increased improvement. I’ll wait a few more months to see if things continue to improve or level out.

I was wondering if the worms are visible at all, I have eczema and think that the idea of having visible worms showing through my skin as some pictures I've seen online that claim being hookworms would drive me insane!

Mon, 10 Oct 2011 17:35:09 -0700

Hey Anon,

The hookworms ultimately live in your intestines, so there won’t be any problems of them showing through your skin. The images you’ve probably seen are either of another parasite, or they are of the hookworms squirming against an intestinal wall, not on skin.

When you inoculate, they will burrow through your skin and leave a rash, but they’re microscopic at the time of inoculation, and the rash will go away after a few weeks.

Hi Michelle! I'm just wondering if you get sick (not sick from allergies/food intolerance).. but sick from colds, flus, viruses more often now that you are hosting the worms? I am just wondering if the way that helmenthic therapy works is by slightly suppressing the immune system. I am very curious to know about this! Thank you for this website and answering questions! Hope you are doing well. Cheers, Alan.

Mon, 10 Oct 2011 17:33:05 -0700

Hey Alan!

This is a great question. I’ve actually noticed that I get sick much *less* often since inoculated. In the last year I’ve had one cold and it was the mildest cold I’ve ever had. I don’t think the worms suppress the immune system, I think they modulate the production of T-cells in a way that makes autoimmune malfunction less likely - that’s my impression from the literature I’ve read.

I’m doing really well, thanks for your question!

I'm about to have a dosage of 25 hookworms. Now i'm thinking maybe this is too high? Maybe 10-15 would be better. I'm a slim person and I'm concerned how I'll react.

Mon, 10 Oct 2011 17:31:16 -0700

I think the typical dose is somewhere around 30. I have a friend who just inoculated with 35 a few months ago, and they were pretty flu-y until just recently.

I think no matter how many you take, the first time you take them it’s going to make you feel like crap. But once you get over the hump, it gets much, much better!

Hello Michelle

Many thanks for your fascinating worm blog. I'm thinking of getting some worms myself. I suffer from multiple food allergies but I should really say food intolerances because what I have doesn't require an epi-pen. It just makes me feel lousy, a lot of brain fag. I also acquired a diagnosis of ME/CFS along the way. My question is whether you think that this treatment is suited to food intolerances/ME as opposed to classic allergic and auto-immune diseases like asthma, Crohn's, UC, MS and the like. I appreciate you're not a doctor and may not feel qualified to answer in which case no problem. If you know anyone else who might know.... Many thanks, Gerry Rowe

Mon, 10 Oct 2011 17:29:55 -0700

Hey Gerry,

What I can say about my own experience is that my problems with food seem to be both intolerance and classic allergic reactions. They were also much more obviously allergic reactions the more I encountered a food. I didn’t have an Epipen until last January even though I’ve felt like crap and been generally sick since the 1988 or so.

If I were in a position of being generally sick and didn’t really have many good options, I would try the worms all over again for sure. They do make things worse for a couple months, but then it’s a slow climb to feeling a lot, lot better.

I’m sorry you’re so sick. I hope you get to feeling better somehow, very soon!

hi, michelle -- i'm blogging my own HT experience now, thanks in part to your own fine example. here's the link: http://gettinghealthiernow.wordpress.com/ if you'd like to link to mine, or just stop by to make a comment, feel free. hope you're feeling great, and eating all sorts of yummy things.

- terry

Mon, 10 Oct 2011 17:22:54 -0700

Hey Terry!

Thanks for sharing your blog. I’m going to check it out, and I’m answering this question in order that the URL will get posted to mine.

Today I ate a breakfast burrito with eggs, hash browns, cheese and salsa inside a real wheat tortilla. And I had 2 cups of coffee! :)

what's your vitamin D level? if it's lower than 50ng/ml you should supplement until you're in the 5-80 range. Also, why don't you also try whipworm?

michellerowley — Mon, 10 Oct 2011 17:01:00 -0700

I just got my D tested for the third time, and I haven’t seen the numbers but my doctor said they were “borderline high” and I should cut back on supplementation. Finally! After a year and a half of 10,000 IU a day I’ve gone from 24 ng/ml to I’m guessing ~75 ng/ml. I think it has definitely helped me.

On the whipworm, I’m hesitant to add them in because I’m having such good results with the hookworm and if whipworms don’t agree with me I’d have to kill all the worms and re-inoculate with hookworms. That would be a big hassle. But if I don’t get what I feel is “full” remission from the hookworms in the next year or 18 months I probably will add them on.

can you please post an update on how you're doing?
Thanks.

michellerowley — Mon, 10 Oct 2011 17:00:00 -0700

Wow, I guess I stopped getting emails when I got messages here! I apologize to anyone else who wrote to me - I will get back to you all as soon as I can.

I inoculated with 50 more larvae about 6 weeks ago, and I’m starting to get some more improvement! I accidentally ate some banana bread a few weeks ago and nothing happened at all, that I could tell.

It’s clear to me that I do better during some parts of my hormonal cycle than others, but all things seem cyclic with the worms, so that’s not too surprising. I will see about getting a few more larvae next year if I think there’s still room for improvement.

How are you doing these days?

michellerowley — Sun, 10 Apr 2011 19:40:00 -0700

Hi Debora!

I’m doing well - So well, I guess I’ve neglected my blog a bit (oops).

I wouldn’t say I’m by any means “cured”, but the treatment has allowed me to live a nearly-normal life. My joint pains are gone! I can eat in any restaurant with minimal if any reaction - the reactions that I do have are mild and short-lived (usually similar to hay fever - fatigue, sneezing, etc.). I have a truly unbelievable amount of energy, and the fog in my brain is gone as long as I eat what I know agrees with me, the list of which has expanded greatly. I don’t take Benadryl anymore (I used to take it every day) and rarely need Advil (I used to take that almost daily for the joint pain).

I’m going to get a second, smaller dose of hookworm larvae here, soon, so we’ll see if I can attain an even greater response. If not, I am still happy with how much they’ve helped me! I would do it all over again in a heartbeat.

Thanks for checking in. I’m still keeping up with you and the others on the forum, even though I rarely post!

Take care —

you should check your blood levels of vitamin D sometime and if it's not between 50ng/ml and 80ng/ml, up the dose.
It's really great that the worms are working for you!!

michellerowley — Sun, 10 Apr 2011 19:31:00 -0700

I just had my vitamin D levels tested a few weeks ago. The last time they were tested was one year ago. Back then, the level in my blood was 24 ng/ml. This year, it’s at 54 ng/ml!

For reference, I get very little natural sunlight because of where I live and work. I have been taking about 10,000 IU/day for the last year.

Dear michelle,
i suffer from heavy allergic reactions since a long time aswell. Suffering from allergies since i am 12 years. I wanted to ask you: Did you ever feel that incredible dizziness after eating something? And does youre joint pain worsen then after eating? I suffer exactly from that experience.... hard to describe. When i eat something during the break in my work... i cant concentrate for the next half hour. Its really awful. now i am taking the hookworm and i hope it slowly will get better. Maybe you have time to answer. Thanks and all the best to you! Marty

michellerowley — Sun, 10 Apr 2011 19:29:00 -0700

Hi Marty!

My apologies for not answering sooner. Yes, I used to have a lot of dizziness after eating, and chronic joint pain especially in the hips and shoulders. I still do get that foggy-headed tired feeling every so often after eating, but the reactions are much reduced and very tolerable. I have no more joint pain at all.

I still avoid the foods I was most allergic to because having hookworms has definitely *not* been a silver bullet, but things are getting better all the time. Thursday will be my 1 year wormiversary and I’m pretty sure that I haven’t hit the peak of my improvement, yet.

Congratulations on getting your worms! Try to keep a positive attitude and have faith that they will work. It can take a *really long time* compared to modern medicine, but I think the results are worth it. Remember to take good care of yourself while you wait!

you should do a post answering the anonymous questions you got! :-)

michellerowley — Sun, 10 Apr 2011 19:23:00 -0700

I KNOW, I can’t believe it’s been so long! I’m going to answer a few, now. :)

Now taking anonymous questions

michellerowley — Mon, 07 Feb 2011 18:55:09 -0800

A while back someone let me know what a pain it was that my blog wouldn’t allow questions to be asked anonymously. I checked it out, and the poster was not joking - it was super annoying. I’ve changed the settings and anyone can now ask a question anonymously.

Thanks for reading, and I’m looking forward to your questions!

Did you have skin prick tests done before the worms, and if so are you going to have your allergy testing redone? Are you able to tolerate foods now? Did you have GI problems along with the food allergies?

michellerowley — Mon, 07 Feb 2011 18:51:00 -0800

I did have skin prick testing done in 2007, but no foods registered at all on the skin. I did react to every type of dust mite and many types of mold and pollen. My allergist told me that negative skin-prick results for foods were only about 60% reliable, so I didn’t put too much stock in it and I don’t plan to have it redone.

I’m now able to tolerate all foods that I’ve been willing to try. Some still precipitate a reaction, but a much-diminished one. There are a few foods that previously required my keeping an Epi-Pen available, and I haven’t quite gotten up the courage to try those. Honestly, when something makes you that sick it’s hard to stomach, anyway, so I haven’t had the urge.

My allergic responses were largely GI-related, in addition to joint pain, mouth ulcers, fatigue and cardiovascular symptoms. The worst allergic response I ever had (the one that prompted the Epi-Pen prescription) started with allergic diarrhea ~20 minutes after consumption, followed by bradycardia, low blood pressure and loss of consciousness. After this incident I had the worst set of beau’s lines in my thumbnails that I’d ever experienced or seen in anyone (I commonly get beau’s lines when I’ve had a very bad reaction, but I don’t know if it’s common among others).

Allergy testing is nice, but for food allergies I don’t consider it very reliable. Elimination diet and food challenge/response testing is the way I figured out my allergies, however if you go this route I encourage you to work with an allergist and/or have an Epi-Pen on hand and help nearby. You never know when it could be the big one.

10-month progress report

michellerowley — Mon, 07 Feb 2011 18:35:16 -0800

I’ve had a few requests recently to post an update about how I’m feeling. I know I’ve been deficient in posting my progress and I’m sorry for that! I heard many times before I got my worms that people tend to get better and then drop off, having gotten on with the business of living. That’s definitely (and thankfully) what’s been going on with me.

I’m going on 10 months post-inoculation, and am still seeing slow improvement. I have noticed recently that my moods aren’t all that stable and I’ve been wondering if that could be residual food reactions. I don’t seem to get much in the way of joint pains, heartburn or nausea anymore, but I occasionally get unexplainably melancholy (sometimes downright inconsolable) after some meals that would previously have made me sick as a dog. It’s probably just a coincidence, but something I’ve been thinking about recently.

Some random stats:

* I’ve been taking 10,000 IU Vitamin D per day for several months. I’m pretty sure now that it’s Vitamin D that made my skin and hair so soft back when the worms started working. I wonder if they improved my ability to absorb Vitamin D? In any case, in addition to soft skin, I tend to be less moody and sleep better when I remember to take the D.

* I’m taking a multi-vitamin that has 20,000 IU Vitamin A in particular. A friend mentioned a possible link between inappropriate autoimmune responses and Vitamin A deficiency which prompted me to start taking it. I haven’t been very consistent yet, so I don’t know whether or not it’s making a difference, but I’ll try to do better and report any changes that might be related.

* I stopped drinking caffeine about 2 months ago and have since stopped having anxiety in large crowds and when giving presentations at work. Even a single cup of green tea brings the anxiety back on like gangbusters, so I’ve switched to peppermint and don’t let myself look back. This is probably not related to my autoimmune issues, but I figured I’d mention it anyway!

Helminthic therapy in the news!

michellerowley — Thu, 09 Dec 2010 12:49:53 -0800

A recent scholarly journal article was published detailing one man’s battle against Ulcerative Colitis, and how he found worms to help himself instead of going down the road of drugs and surgery and colostomy bags. Here are two news pieces that discuss the article:

http://www.cnn.com/2010/HEALTH/12/09/worms.health/index.html

http://www.boston.com/business/healthcare/articles/2010/12/06/studies_hint_parasites_can_be_good_for_you

Wormy Holidays and Winter Colds

michellerowley — Thu, 09 Dec 2010 12:48:00 -0800

Thanksgiving with my new buddies was delicious. I tried a little bit of everything, including some stuffing that had a little beef in it. (By accident. For those who don’t know me, beef is the reason I carry an Epipen.) Oops. Luckily, that only resulted in mild nausea. I consider it a huge success!

I’ve also achieved another big worm milestone - my first major illness since inoculation. I caught a pretty rough cold that I think my body tried valiantly to fight off for about a month. I think I finally threw enough alcohol and sleep deprivation at it, and it got me. Now I’ve got symptoms of bronchitis, but things are slowly on the mend.

I think there are two things to note in my illness experience. First, I don’t think I knew I was getting sick because “feeling kinda bad” is a normal state for me (before the worms). So it wasn’t until I felt *really* bad (and was coughing up bloody stuff) that I knew I was sick. When it didn’t go away completely, I didn’t really notice - again, because I didn’t feel all that bad. Not any worse than a year ago’s “normal”.

Secondly, I do think I got over this second wave much more quickly once I took it seriously and actually rested. Of course, there’s no way for me to know if it has anything to do with the worms, but I wanted to share my thoughts on it, anyway!

Wormy update!

michellerowley — Wed, 27 Oct 2010 17:02:18 -0700

I’ve gotten about 5 messages in the past week asking how I’m doing. Sorry I’ve been AWOL! I’ve been sick off and on over the past month (completely unrelated to my hookworm buddies) so I haven’t had the energy for much updating.

My 6 month wormiversary came and went on October 14th. Things are still improving on the food front! Lately I’ve been able to add back (in small quantities) several types of fruit, some nuts, and - hallelujah - cross-contamination from fryers doesn’t seem to bother me anymore. Bring on the sweet potato fries!

While I have been able to eat a lot more without getting sick, I haven’t noticed any improvement in my sneezing this fall. I still sneeze about 10-20 times a day and my nose is often very stuffy. I’m sure the seasons changing is making this worse than it normally is, so maybe I have improved overall but this allergy season is just particularly bad. Either way, I am considering adding some more worms on top of the original batch to see if that leads to further improvement. Also: waiting longer!

One last note about the last couple months - I’ve started supplementing my vitamin D after having a huge downturn in my improvement at the end of September. I had read many things about vitamin D deficiency so I figured I’d give it a whirl. I can’t believe how much it seemed to help, and really quickly, too. Within a few days of taking 10,000 IU/day of liquid vitamin D I was less moody, sleeping better, and my skin was freakishly soft. Was it all in the D? Who knows. It seems to be helping so I’m going to continue with it.

And if you’re one of my friends I’ve been pestering to try a D supplement… thanks for putting up with me. I’m just trying to help! :)

Why I won't open-source my infection

michellerowley — Sat, 04 Sep 2010 13:31:00 -0700

Ever since I started this blog, I’ve had many suggestions/requests that I “open source” my helminthic infection. I won’t be doing that. Up until this point I’ve ignored these requests, but it occurred to me that people might be interested to know why I feel the way I do.

First of all, I’m a software developer. I get the point of open source software, and I believe in it. I also do whole-heartedly believe that an open source of hookworms would be helpful to many people, particularly in the case where the main barrier to getting the treatment is cost. However, as for my own infection, I’ve licensed it in the same way that software is licensed, and this license doesn’t allow me to share. And I respect the license in the same way I hope anything *I* publish with a license will be respected.

I also won’t be “open sourcing” my copy of OS X or my recent iTunes purchases, so please don’t email me asking for copies of those, either.

have you considered whipworm as well? It should only help, right?

Sat, 21 Aug 2010 11:11:17 -0700

I haven’t considered whipworm at this point, mostly because of the cost. I’m waiting to see if I achieve what I would consider to be full remission within a year. If I’m still having symptoms next summer I’ll definitely try adding whipworm to see if the combination brings more improvement.