* your experience with TSO, hookworms, whipworms, and other alternative remedies

* incubation techniques, egg counting  (I can teach you how to do a McMaster egg count, show how to recognize hookworm eggs, the equipment needed, etc.)

* the legalities of this therapy.  With the recent FDA classification for hookworms as a drug, what legal rights to we have as patients?  Are we allowed to share? Are we allowed to host worms even if they are illegal to obtain?  What about children?  Do we have the right to prevent disease, or only use worms to treat disease after it’s occurred?

*alternative ways of getting the worms safely other than the commercial companies

* how to bring more positive attention to this therapy

* how to encourage our doctors to research, further the research, use us as case studies, etc.

* how to affect the FDA ruling and help the paradigm shift along

* creating an open-source, public database on our side effects, blood tests, reactions, proof of efficacy or lack thereof, etc. to keep track of our data and have a place that interested parties can see what other people are going through, their lab data, how long progress lasts, egg counts, etc.

* and just to meet with other people trying this or who would like to try it, to help normalize the whole concept of hosting worms

Please contact me by clicking on the contact link, where you can email me a personal message stating your interest.  Let me know when you are available, whether weekend or weekday is best, evening, etc.

We are all in this together, and giving each other support for our various trials and ailments would be wonderful! I think it’s also time for a robust DIY community to form. I realize most of you will not be able to come to California, just hoping there are enough people in the Bay Area interested in something like this.  Perhaps we could put up notes or do a virtual stream during the meeting, if other people would be interested in joining,  but unable to in person.

Thanks!

My CRP has risen slightly, and my symptoms are a little worse, but it’s not from a declining worm burden. Now I’ve hit my PMS week and the anxiety is creeping back, despite the transdermal magnesium, and I have had trouble falling asleep the last few nights. I pick up more magnesium chloride today; I’ve been using the same foot soak for the last week since I ran out, don’t know if that makes a difference nor not. I’ve also had more twitching, a little dizziness, and pin pricks, so perhaps my minerals have dropped.

I think it’s time for returning to a better diet, and adding probiotics. I was going to add more hookworms, but now I’m wondering if that would help or hinder. I know I’ve only had 20 worms total, so there is room to add. Not sure if that makes things better, or where the point is that you have enough and you’re not going to do any better with more?

My GI said that doctors are getting increasingly skeptical about helminth therapy – not because of the science, but the practical application of them. UCSF was never in favor of AIT, and now with the latest two Nottingham trials that were not very positive, it looks like the excitement is falling. Especially as no one can get worms except for TSO now.

I just want to have consistent wellness and someone else figure this out for me. I wish I knew precisely what was going on, whether I do indeed have severe mineral defincies that are causing many of my problems, or if there is some neuropathway that the worms have altered that are causing anxiety, muscle twitching, and the rest.

Bone broth soups, transdermal magnesium, and hope. Vitamins, minerals, and probiotics. Wait for my period… What else can I do?

Egg count is supposed to peak around 6 months, then decline.  My last innocualation was the end of September, so 6 months ago.  I wonder if we should reinfect twice a year, or if it’s based on the amount of worms you get and keep?  Does egg count correlate with symptoms?

At least they’re still alive, so I have something to incubate.  I’m off to the garden store to get some vermiculite.  Then I’ll get my petri dish ready, and try to incubate again….

Anxiety has crept back the last 2 days, but I think it’s hormonal, since I should be getting my period any day now.  I’m also incredibly weepy.  Muscle fascilations and heart palpations have increased, so will try to up my magnesium supplements, and it’s time for a good calcium supplement, and just generally better nutrition.  I hope it’s just deficincies and when corrected, I’m in a good place.

I don’t know how long it will take for my psyche to realize that I have found something that works and should continue to work.  But years of fear have taken their toll, and it’s a challenge to reprogram a 21 year fear.  And I’m really not taking my supplements regularly, so it probably will take some time to correct years of defincies, alas.

But at least the worms are alive, and working!

So, adding worms added to the population, if you analyze the population by egg count.  It also seems to be helping with symptoms.  I don’t know how many other people are measuring their egg count, but now we have proof.

Had a little less anxiety last night; benedryl worked again to get me to sleep, and I got a good 8 hours.  I still feel like a nervous wreck, though.  Tried EMT (emotional freedom technique) but got nothing out of it.  Will have to try again.

At least the worms are still alive, though what they’re doing to help me right now I can’t say.  I did just get fitted for a bra, and I am a full cup size bigger than ever before, so weight-wise, they’ve improved that.  But emotionally, I am worse than I ever have been in my life, so…

Ah well.  I’m still alive, right?

(image from: http://www.flickr.com/photos/prep4md/2772121447/)

The Nottingham dose-ranging trial has a list of quantitative egg counts per dose.  According to that chart, 10 and 25 larvae resulted in an average of 100-300 epg.  50 had a higher egg output, as high as 650 epg.  This chart states that 50 worms results in an average of 1600 epg.  The World Health Organization defines moderate-intensity infections as those with 2,000–3,999 eggs per gram of feces, and heavy-intensity infections as those with 4,000 or more eggs per gram.

This book says one can estimate worm burden roughly by 500 epg per worm, but that doesn’t seem to correspond to these other charts.  This study followed a male infected with only 5 hookworms for 18 years! His epg was between 1000-1500 epg.

This study estimates necator by 25 eggs per gram of feces per adult. (www.ajph.org/cgi/reprint/50/6_Pt_1/837.pdf)

I am counting 1050-1200 epg from my recent dose of 10.  So I suppose from all of this information, I could estimate that I have at least 5 females.  The above information seems very contradictory.

Any parisitologists reading this, could you clarify why there are so many variations in estimates of egg output and population density?

http://www.docstoc.com/docs/599020/Macmaster-counting-Technique-ppt

except rather than making a large volume of flotation fluid, I mixed 40 g of salt with 100 ml. of water.  I wrote about the technique and where I got my supplies here.

I did it twice to compare, with the same 4g. sample of stool, but for each chamber I used a different pipetted solution of stool/salt water solution.  In other words, I filled one chamber, stirred and pipetted a second sample for the other chamber.  Then cleaned the slide, and did it again.

I am at 6 months post re-inoculation with 10 hookworms.  Quantitative egg count?  1050 epg the first sample, 1200 epg the second.  The last time I counted it was 800 epg. Plus or minus a few eggs, this is roughly consistent.

I wanted to do an egg count to assess my numbers, since tomorrow I am getting a brain MRI with contrast and on Thursday, a partial crown with local anasthetic.  The second may affect the worms, so I’m waiting at least 5 days after the crown and then will do another count to see what I’ve got.

If the egg count drops off and they die, then I will reinfect with 10-15 worms.  If I still have some, I may do nothing.

We wondered last year about immunity to hookworms, whether those with Crohn’s couldn’t hold onto their infection as long as others, why I lost my population, etc.  It’s nice to know that after 6 months, a mere 10 hookworms are still kicking out a steady egg production.

As far as doing the egg count, it’s not that bad.  If you’ve had IBD for any length of time, you are well versed in shitting into a plastic cup.  You only need 4 g. of stool, which is like a tablespoon.  I work next to an open window for the mixing and filtering of the stool, but I don’t find the smell that offensive.  I know that at times my stools and gas can smell foul; I would choose not to test during those days.  The actual egg count is not smelly at all, since you are mixing a large volume of salt water with a very small volume of feces, and the slide chambers are small, so there isn’t much to smell.  I’m sure incubation will be worse.

Will let everyone know the results after the MRI and dental work. And I have to say, for a non-scientist, it’s rather fun to identify and count the little egg shapes with multiple ball-like clusters in it. I enjoy playing with beakers!  Until the studies are published, it’s up to us to troubleshoot and figure out why we are losing worms, what kills them, and how long they procreate and are effective.

Try it!  I advocate putting the microscope in your own hands.:

Results from 10 larvae? 800 epg

I’ll walk through my steps one by one. First, I bought the materials:

digital scale: myweigh ibalance 500 (more expensive then the cheaper models, but comes with a 30 year guarantee)

microscope: Wesco binocular, with lenses from 4X to 100X

measuring devices: one glass cylinder 50 ml., 1 plastic graduated flask, 500 ml, and 1 200 ml. glass beaker

cheesecloth, spoon, salt, water

pipettes

1 McMaster grid slide, bought from this site: http://www.vetslides.com/

First, I went to the bathroom in a plastic container. I weighed a piece of paper on my scale, then added 40 grams of salt. I then filled a plastic beaker with 100 ml. of water. Mixed well, until the salt dissolved. Then I measured a small plastic container and added 4 g. of stool to it. (If the plastic weighs 1.5 grams, for example, you would add stool until you get to 5.5 g.) I put the stool into a glass flask and added 56 ml. of the salt water mixture. I made sure to rinse the plastic cup with stool in the salt water, so as to capture all of the contents of the stool. Then I stirred the contents with a plastic knife until it was well mixed. I took the contents and strained it through a single layer of cheesecloth several times (it helps to have two glass open flasks for this.) Then I pipetted the mixture into both chambers of the McMaster slide and let it sit for 5 minutes. (Well, really 10 as I paused to have breakfast.)

I put the slide into the microscope at 10X 10 magnification. It takes a while to get used to the binocular lenses; I’m sure the technique improves with experience. The challenge I had is one focus allowed me to see the grid, the other focus I could see the eggs. A faint blurry line sometimes could be seen, but not always. I suggest shelling out extra for the green lined grid slide.

The eggs should look like this: (photo courtesy of www.flickr.com/photos/prep4md/2772121447/)

Because I couldn’t see the grid lines well, every time I identified an egg, I’d notice something around it, like little food blobs that had a particular shape or color to them, so I wouldn’t count an egg twice. I carefully went up and down each grid slide, and counted eggs. On the left side, I found 7 eggs, on the right, 9.

I added these up and multiplied by 50, resulting in 800 eggs per gram.

I should do multiple stool samples for accuracy. Right now my eyes hurt. I’m just happy I actually found and identified something.

So yes, 10 little hookworms result in 800 epg 4 months later. Happy egg counting!

http://books.google.com/books?id=8AWz0cS6e9kC&pg=PA115&lpg=PA115&dq#PPA115,M1

This article goes into great detail on the advantages of each method:

http://www.ajtmh.org/cgi/content/full/77/6/1087

Incubation temperature is important, and 30C (86 degrees farenheit) is optimal:

http://www.ncbi.nlm.nih.gov/pubmed/3569472

I’ll provide an equipment list and write about the process once I’ve ordered the supplies, and tried it out. Oh why didn’t I take a science class in college? An art major in oil painting is not helping me out here…perhaps I’ll start a larval triptych!