I did it. The hookworms are in!

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patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/2/2009 8:42 AM (GMT -7)   
I've been lurking without posting much lately, and this is why...

I administered my first dose of helminthic (worm) therapy yesterday morning.

Yes, this was a MAJOR decision, and not one that was made lightly, or without the oversight of qualified medical specialists.

So, now I have WORMS! I just had to share. It's not exactly something I can tell everyone.

I'll redo my signature with a link to my blog, and keep anyone updated that cares to check in.

In the mean time, if you can spare a few good thoughts for my new creepie-crawlies, I'd be mighty thankful.

Best of luck to you guys too, and if your path ever turns down the road of worms, keep my name handy. I'm always happy to share.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. Leaning towards Failure there too.
Currently on:
Cimzia (started 2-12-09) Again, not helping much, if at all.
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Feeling a bit jaded lately, but trying to keep my chin up.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/2/2009 9:03 AM (GMT -7)   
Sending you lots of good luck that this does the trick and gets you feeling better soon. Do keep us posted on how you do.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/2/2009 1:39 PM (GMT -7)   
Hello! Did you go to the clinic in Tiajuana? How many new friends did you get? I hope they settle in gracefully and thrive! I've heard it can take many weeks until you see the benefit, and the beginning might be a bit rough. But I definitely think they do actively control some of your immune system in your intestines. The benefits being documented for allergies and asthma is amazing!! Please journal for us and let us know how it goes.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/2/2009 3:29 PM (GMT -7)   
Wow, Spiders, how exciting! How did you get them?

Good luck - we'll keep everything crossed for you :-).
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/2/2009 4:50 PM (GMT -7)   
I got them mail-ordered from Californ-i-a. :-) So far everything has been easy-peazy. Itchy, but easy.
Thanks guys!

I have to ask the company exactly how much info I'm allowed to share, as there seems to be a serious practice confidentiality issue. But once I know how many beans I'm allowed to spill, I'll share my journals. :-) In the mean time, I just followed the links from this forum to different news articles and clips, and ended up doing it! I'm so excited!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. Leaning towards Failure there too.
Currently on:
Cimzia (started 2-12-09) Again, not helping much, if at all.
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Feeling a bit jaded lately, but trying to keep my chin up.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/2/2009 5:05 PM (GMT -7)   
If you need someone to talk to, don't forget that Keah (one of our mods) did the worm therapy a few years ago. I think someone on the UC forum is currently doing it too.

I don't blame you for being excited! It *is* exciting!

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 8/2/2009 6:23 PM (GMT -7)   
Wow, I've never heard of such a therapy. Best of luck and I hope you get the results you're looking for.
Diagnosed with CD July 2007.
Hospitalized:
July 2007
August 2007
December 2008
January 2009
July 2009


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/2/2009 7:12 PM (GMT -7)   
Oh girl! You did it? You actually did it??? WOW! I'm am sooooo sending you good vibes. I've got all of my fingers and toes crossed. Keep us posted. I want to know how you're doing. And keep that chin up!

7007
Regular Member


Date Joined May 2007
Total Posts : 59
   Posted 8/11/2009 8:07 AM (GMT -7)   
I did hookworms for Crohn's too. Just redosed February 2nd (I tried them last year but lost them at some point and regressed.) I took 10 this time, and did blood tests before, and monthly. Just got my 6 month one back and it was perfect! No inflammation, everything else normal! I've gained 25 pounds total since trying hookworms. My hair has grown back in healthy, and people who haven't seen me in a while say I'm the best I've ever looked.

I was on the Specific Carbohydrate Diet for the last 7 years. Now I can eat most anything. Bread, pizza, beer, even salads! I'm not perfect symptom-wise; still have some mucus and urgency. But before hookworms, I had night sweats every night, was fearing surgery for a stricture in the ileal-cecal valve (and in much pain from it), and had to eat mostly blended foods. I now sleep through the night, have very little pain (my ileal-cecal valve is scarred, and I still get residual pain from a prior surgery to remove my descending colon, but it's very minor compared to the debilitating pain before) and have mostly solid stools! So my progress is amazing. I haven't been on any medications for the last 2 years, so it is assuredly the hookworms that are working. I'm hoping that I get that last 10% improvement in the next few months, or perhaps at some point I will add more worms.

I have figured out how to do egg counts, since it was very frustrating last year to not know what was going on, and now I want to keep track of things. I hope to figure out how to incubate them so I can self-infect when needed.

Anyway, I am very pleased. I was interviewed on CBS a few months back: http://cbs5.com/health/hookworm.treatment.therapy.2.1016319.html

What they neglected to mention is that both the man who was interviewed and I had horrible first-time reactions to the worms. You respond with inflammation, trying to expel the worms initially. I tried 10 worms and Scott 25; I got edema, arthritis, and increased diarrhea from about weeks 3-10 (the diarrhea lasted about a week.) He had to be hospitalized. We both were very sick and on no meds. It helps to have something to curb the reaction. So it's not all a piece of cake initially, but you start feeling better about the second month in, usually improvement really kicks in by month 4. Not everyone gets a bad reaction, most people on Humira or other immunosuppressives fare better.

This last dose caused almost no side effects; so for most people, it's the first time that is the worst. The immune response is learned afterwards. NO one knows yet how many worms are needed, but for me, 10 has worked to normalize my CRP and ESR, so they seem to be enough.

I wish there was more interest and money in this, as I have my health for the first time in a decade. I've had Crohn's for21 years and have tried everything; Humira, Remicade, 6MP, etc. And all it takes is 10 worms?

I'm in contact with a small handful of IBD patients trying this, and most people are getting at least some efficacy. I'm not sure if anyone has successfully come off of all meds. Hookworms seem to make UC worse, but not Crohn's colitis. (Mine is most active in my colon, rectum, and ileal-cecal valve.)

There are two companies selling hookworms, and there is also TSO (pig whipworm.) My hope is enough people try this so that we can prove efficacy, and perhaps eventually it will become more mainstream? Nottingham is studying it currently, but only testing Crohn's for 3 months, so I'm not sure how positive their study will turn out to be.

Anyway, good luck. I hope your side effects aren't too bad, and about 4 months you get a perfect blood test too!

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 8/11/2009 10:36 AM (GMT -7)   
Hi good luck really hope that it works for you Bev x

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/11/2009 1:05 PM (GMT -7)   

Geez.  And here I thought our challenge was to get rid of the worms and bugs!!  Doesn't worms such as Hookworm get into your heart and cause havoc?  I'd never heard of this strategy as help for crohns symptoms.  Not sure I would ever try it either but I'll be anxious to follow your posts to see how it all turns out.

Worms!  EWE!! smhair


Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/11/2009 1:22 PM (GMT -7)   
Now if it doesn't work you can go fishing. I would have sent you some night crawlers for a lot less green though..
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/11/2009 1:31 PM (GMT -7)   
Ha Ha. Thanks for the laugh Sniper!
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


7007
Regular Member


Date Joined May 2007
Total Posts : 59
   Posted 8/12/2009 7:08 AM (GMT -7)   
There was a good article in the New York Times last summer that explains it better:

http://query.nytimes.com/gst/fullpage.html?res=9400EEDB1739F93AA15755C0A96E9C8B63

IDEA LAB; The Worm Turns

By MOISES VELASQUEZ-MANOFF
Published: June 29, 2008

In the early 1990s, Joel Weinstock, a gastroenterologist, encountered a puzzle. The prevalence of inflammatory bowel disease (I.B.D.) across North America increased markedly during the 20th century. Many thought that ''bad'' genes would eventually explain the spike, but Weinstock didn't buy it. In areas where fewer than two generations ago the I.B.D. incidence might have been as low as 1 in 10,000, it was now 1 in 250. A defective gene couldn't spread that quickly, he reasoned. It had to be something in the environment. But what? Stumped, Weinstock tried turning the question around. Instead of asking what triggered I.B.D., he asked what, before the 20th century, protected against it? ...

Worms?

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 8/12/2009 11:15 AM (GMT -7)   
Oprah had a good show yesterday with Dr. Oz on worms, and parasites. It was kinda funny to watch oprah shrill up when he pulled a 30ft long dead tapeworm out of a glass jar, and had her help hold it.
FaceBook; http://www.facebook.com
cadillac_rick@hotmail.com


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/13/2009 12:54 PM (GMT -7)   
I did a little research on this and I've gotta tell you, I still cannot get comfortable with ever doing it.  The thought just literally creeps me out.  And this comes from someone who isn't afraid of spiders or mice or other creepy, crawly things.  But a worm is a living, full of blood and guts, creature crawling around in there and laying its egg.  Ewe!!  No way!!!!!  I hope it works for whoever is brave enough to give it a shot.

Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


7007
Regular Member


Date Joined May 2007
Total Posts : 59
   Posted 8/21/2009 7:31 AM (GMT -7)   
Tysabri scared me more.

I hate to tell you, but you're already crawling with parasites. You've got mites on your skin and eyelashes, your intestines are filled with bacteria. They're all microscopic, as are the hookworms when they enter your skin. It's not like you feel them inside of your gut once they've settled in.

When I compare myself now to when I was on Remicade or Humira, I am SO much healthier, can eat pretty much every food, and am at my highest weight in 20 years. (Excluding pregnancies.) As gross as it sounds to have 10 hookworms, now I pat my stomach in gratitude and feel a sense of fondness for them in making me so well. And I don't have to worry about progressive multifocal leukoencephalopathy! (1 in 1000 fatal side effect from Tysabri, which was my next choice if hookworms didn't work.)

Sorry if I sound like a hookworm infomercial, it's just so nice to be in remission for once. I was extremely sick the last 2.5 years and thought I'd have to have another surgery, so I'm just ecstatic I've found something safe that works.

I wrote about the whole experience trying hookworms on a blog, for those of you who are more interested in hookworms for Crohn's: www.waitingforthecure.com

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/21/2009 10:40 AM (GMT -7)   
7007 - I know just who you are because I was inspired partially by that interview on CBS, so thank you for taking the time to do that. It reached me, and gave me a little push. And I'm so glad!

I've had a couple of really good weeks since the wormies went in - and I mean GOOD - like NO vicodin for pain, no immodium - Nothing! But, I know those "euphoric" periods were premature false alarms... but if the worms can make me feel that good BEFORE they're even in full growth and effect (I'm not even one month into treatment yet) - imagine what they can do when they're working at full capacity!!!!

I really am excited about this. It's the first glimmer of real hope that I've felt in YEARS. And like you said - it's less scary to me than Tysabri and the "white brain matter" and lymphoma and what-not. It's not like I had a medicine cabinet full of options and I chose the creepy bugs, even though that's what people seem to think. The last week or so has been annoying because a lot of my symptoms have returned. But, I really do think it's only a matter of time before they get settled in and I feel better for "REAL"! I've had a taste of the good life. I will patiently wait for more!

I wish I had time to respond more here... I just had to pipe in as I was doing my daily forum read-over. Thanks again, 7007, for taking the time to do that interview. And for walking this road before me. And for finding this forum so that I'm not the only one who sounds like a worm-infomercial! I will probably be talking to you again. :-)
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 8/21/2009 10:56 AM (GMT -7)   
I have seen what hookworms do to a dogs brain.....They die,the dogs do........
SnowyLynne


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 8/21/2009 12:36 PM (GMT -7)   
I hope they give you safe relief. Look forward to hearing more.

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/21/2009 1:01 PM (GMT -7)   
The hookworms used in human helminthic therapy are NOT THE SAME as those that cause your dog health problems, nor are they tapeworms that eat your food, nor are they transmittable under any earthly circumstances to your family or others. That being said, they are still worms, and some people (understandably), will never read past that. ((shrugs))

Most people jump to that conclusion, understandably. If you take the time to read 5 minutes worth of information, you'd see that it's a whole different world than what you think of when you think of parasitic worm infections. My worms are from a controlled, screened, and regularly tested source, I'm given a set number (that will NOT MULTIPLY WITHIN MY BODY!), so there's no chance of them "getting out of control", and if at any time I change my mind - one pill and they are gone in a matter of hours like they never existed. There's no serious side effects like cancer or lymphoma or arthritis even, so I didn't feel like I had any reason NOT to try. They are "safer" than Tysabri, in my humble opinion, and that's the only Crohn's med I haven't failed yet.

And whatever "transmission signal" the worms emit to convince my body to "calm down" and let them stay attached - that signal is coming through and also calming down my crohn's. As I said in my previous post, I've been able to go days without symptoms, and I'm no where near the point at which the worms are taking full effect yet. They're signal is getting through, though, and I can't wait until it's on my body's radio all the time!!!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 8/21/2009 6:02 PM (GMT -7)   
You are on prednisone, too? How can you tell whether it is the pred or the worms that are making you feel better?

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/21/2009 7:53 PM (GMT -7)   
Njmom,

Without worms, good days on prednisone still required pain pills, imodium, and still involved a lot of fatigue and nausea.

WITH WORMS, good days involve prednisone until I'm tapered off, but NO pain pills, NO imodium, I have energy... it's like night and day.

For example, I had an entire day where I went hiking, ate lunch out, didn't feel like I was going to pooh my pants all day and thus wasn't stressed over poohing my pants all day. In short, I had a VERY un-crohnie-like day for me, lol! I MIGHT manage a day close to that at 60mg of Prednisone, 4 imodium, 3 vicodin and a lot of hope, but I couldn't tell ya the last time I felt that good. And wasn't popping pills.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 8/22/2009 3:32 PM (GMT -7)   
here are a few studys about pigworms and auto immune diseases..
 
Crohns:
(76% patients got significantly better = remission )
 
Ulcerative colitis:
http://www.ncbi.nlm.nih.gov/pubmed/15825065
( 43 % got significantly better )
 
MS:
 

ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 8/22/2009 4:35 PM (GMT -7)   
No one has yet mentioned cost, or some details on where exactly to obtain the worms. I'd be interested to hear such details.

Thanks in advance,
Robert
Crohn's since 1988
3 resections

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