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Crohn's Disease Forum » Your Story » Success Stories » Helminthic therapy success for 11-year old


02-13-2013, 07:13 PM   #1
Marci
 
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Location: Montana
Helminthic therapy success for 11-year old

My 11 year old daughter is nearing the 15 month mark with her hook worm helminthic therapy. It's been about 3 months since I wrote the one-year summary (I'm posting it below) and I wanted to give an update. My daughter has not been on ANY medication (including over-the-counter immodium) since this post. She has solid stools most of the time, and I can count the intestinal cramping episodes on one hand. (And frankly we wonder if those few episodes aren't related to school/stress and not Crohn's?). We are not so naive to believe there won't be hiccups down the road, but the helminthic therapy is thus far miraculous.

Here is my posting from a few months ago on the Yahoo helminth forum:

"Our first year with Crohn's disease & helminthic therapy"

In October of 2011, our (then) 9 year old daughter was diagnosed with Crohn's disease. We had been working with our family physician for close to 6 months to uncover the root of her intestinal pain, chronic diarrhea and steady weight loss. During this half year, she went from 92 lbs. to 69 lbs. and we were becoming frantically concerned for her well-being. It was finally through referral to a G.I. specialist, colonoscopy, endoscopy and MRI that confirmed her disease.

Several days after her official diagnosis, we met for a consultation with her
G.I. doctor to hear his plan for treatment. His recommendation was to begin I.V. treatments of Remicade combined with Imuran. Weekly, then tapering off to every 8 weeks within a year. I was shocked by the invasiveness, the potential life-threatening side effects, and the cost (approximately $6,500 per treatment). I knew there had to be alternatives. I venture to guess I spent over a hundred hours researching on-line, calling folks with Crohn's and reading books ordered on-line.

It was during this intense period of research, that I came upon helminthic
therapy. And I realized I'd heard Jasper Lawrence on an NPR broadcast some years earlier. I dug through podcasts from "This American Life" and found the show I remembered. My husband and I were convinced that this approach, combined with a modest pharmacological program, was our best hope.

We did not enter lightly into our treatment decision for our daughter. Again I
spent countless hours researching and reading about helminthic therapy and we believed that we had nothing to lose, and only to gain. We chose to begin a course of Entocort steroids to bring my daughter's intestinal swelling down quickly, combined with 1500 mg. of Pentasa per day. She got good results fairly quickly from these medications, but after a month or so seemed stalled. At the same time we started these prescriptions, we contacted our provider to begin our daughter's helminthic journey.

Almost exactly a year ago, two tiny little vials arrived in the mail. One for
our daughter, the other for her dad. Our provider allows for a parent to engage in this therapy for "comfort" purposes. It was with much excitement and a bit of anxiety that we applied the `bugs' (as we call them in our family) to the upper arms of dad and daughter. There was a strong stinging sensation and itch about 10 minutes later. It was bothersome, but tolerable for a 9 year old to bear. Neither dad nor daughter noticed a cough in the ensuing week, but were careful not to spit out the bugs as was cautioned by the information from our provider. A rash persisted at the inoculation site for several months. But this was also tolerable.

Over the next five months or so, we kept our daughter on 1500mg of Pentasa daily. And we kept a journal on how many intestinal cramping episodes she had per day. Diarrhea episodes, eating habits, weight gain, etc. Her progress was an improvement to her overall health, but Crohn's was far from in a state of remission. We knew it could easily be 6 to 8 months before any benefit from the helminths would be apparent. Sometime around the 6 month mark, it became apparent that our daughter was having fewer cramping episodes, and would have consecutive days of solid stools. We were cautiously optimistic that the `bugs' were kicking in!

Then came the set-back. In April (the 6 months of helminths mark) pertussis
(`Whooping cough') broke out in our county and in our daughter's 4th grade
class. Our family physician recommended she run a course of antibiotics
prophylactically to be sure she didn't contract pertussis (even though she is
vaccinated against it). Long story shorter, the antibiotics cause the hookworms to become basically dormant, and our provider sent us another dose of 35 `bugs' for our daughter in early June of last year.

The second dose was barely noticeable in regards to side effects. And over the next several months, the second dose went to work waking up the dormant hookworms from the first dose. My daughter was on summer break, and doing a poor job keeping up with her daily Pentasa. By August, unbeknownst to us, she was going days without any prescription medication. And lo and behold was actually experiencing little or no intestinal cramping, having solid stools quite often, and had gained weight over the summer. She looked good, and she felt good. When school began this past September, we made the conscious decision not to have her take mid-day medication at school. We've also empowered her to take Pentasa when she deems it necessary.

In Nov. [2012], we had bloodwork done on our daughter, and scheduled a one-year check up with her G.I. doctor. He was extremely impressed with her progress and utterly in agreement that the helminthic therapy is a large part of her overall wellness. She has no anemia, has gained over 15 lbs. and simply looks and feels good. While there is still an indication of some internal swelling from the `sed rate' shown in her bloodwork, the improvement from a year ago is stunning! Our beautiful little girl is yet again thriving.

Suffice it to say in our family, we are convinced that we've chosen the most efficacious treatment course for our child. And are so far thrilled with the results of her helminthic treatment.
02-14-2013, 09:46 PM   #2
David
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Location: Naples, Florida
Welcome to the community Marci and thank you so much for sharing this amazing story! I'm so pleased to hear that the therapy has been going well.

What specific tests are they conducting to monitor her disease state or I guess I should say, lack thereof?
02-15-2013, 04:21 PM   #3
Marci
 
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Join Date: Oct 2011
Location: Montana
Hi David,

We have been and will continue to monitor her through periodic blood panels for her GI. As of her November 2012 check up and labs, he feels that she's 'good-to-go' for a full year unless there are any changes. The bottom line is she looks great, feels great and is thriving. Hooweee!!!
02-15-2013, 05:31 PM   #4
xmdmom
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Join Date: Jun 2012
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Marci,
I'm very interested in your daughhter's story. Could you tell me where your daughter's Crohn's was located, and what was the severity at diagnosis? Had she been anemic or had elevated inflammatory markers prior to the worms? Also, would you be willing to share where you got your worms? Do you know others who have used hookworm for Crohn's?

Thanks for posting! Wishing your daughter continued good health and well-being.
02-16-2013, 11:48 AM   #5
Marci
 
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Join Date: Oct 2011
Location: Montana
Hi 'xmdmom'
When officially diagnosed with Crohn's, my daughter was severely anemic, her sed rate was quite elevated, albumen very high, etc. etc. Her blood work one year after hook worms was fantastic. All numbers normal except the sed rate was slightly raised. (and only slightly). I could give you exact figures if you wish on all panel results.

Her Crohn's is in the terminal ileum and was severe enough that the GI's first recommendation was Remicade i.v. treatments weekly, then bi-monthly tapering off to every 8 weeks indefinately. That combined with Imurane. A very powerful and toxic course of action to be sure! Before we made our decision for treatment, I researched these drugs, and called other Crohn's patients using Remicade. For several of the adults I spoke with, it's been a miracle, but for a young child there are severe risks including a rare type of lymphoma in adolescents that's always fatal.

If you'd like to email me, I'll give you the information on the provider we use. ([email protected]) We've been *really* happy with them, with their knowledge and follow-through.

I *personally* know of no one else using this therapy. Although we are in rural Montana, we *do* know of others with Crohn's. Adults and children. We have become evangelists for helminthic therapy, but it seems most people are squeamish about the idea and would rather trust in Pharmaceuticals than alternatives. Sigh.
02-17-2013, 03:34 PM   #6
Marci
 
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Join Date: Oct 2011
Location: Montana
I wanted to provide the FDA warning associated with Remicade. A BIG reason we chose not to accept this treatment option for our daughter:

Remicade (infliximab)

Audience: Rheumatologists, gastroenterologists and other healthcare professionals

FDA and Centocor notified healthcare professionals of revisions to the WARNINGS and ADVERSE REACTIONS sections of the prescribing information for Remicade, indicated for the treatment of rheumatoid arthritis and Crohn's disease. In controlled studies of all TNFα-blocking agents, including Remicade, more cases of lymphoma have been observed among patients receiving the agents than among control group patients. Malignancies have also been observed in open-label, uncontrolled clinical studies at a rate several-fold higher than expected in the general population. Patients with Crohn's disease or rheumatoid arthritis, particularly patients with highly active disease and/or chronic exposure to immunosuppressant therapies, may be at a higher risk (up to several fold) than the general population for the development of lymphoma. FDA has recommended a warning concerning malignancy be added to the labeling for all therapeutic agents that block TNF.
03-26-2013, 02:04 PM   #7
cbear290
 
Join Date: Jun 2012
Location: Ann Arbor, Michigan
My husband has crohns disease and we have been searching for a helminthic therapy provider but cannot find one that will ship to the US. Can you please let me know where you got the worms??? Our other option is to drive to Canada and wait for a shipment from the UK. Thank you so much!!!!
03-26-2013, 02:40 PM   #8
Marci
 
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Hi Claire,

I replied to you via email :-) Godspeed!
03-28-2013, 01:38 AM   #9
CarolinAlaska
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Very interesting story, Marci! Thanks for sharing!
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-28-2013, 02:18 AM   #10
rollinstone
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Thanks for sharing the story, I know there are currently helminthic trials going on in the US, I'm hoping the results are good so it can become a more recognized treatment, I'd love to be able to do a one off treatment even if it's every six months rather than pop all these pills everyday. I'm also very hopeful for SSI vaccines. I think in the next few years we're going to have a lot
More effective treatments for crohn's, for some maybe even a cure.
04-05-2013, 12:45 PM   #11
jagundo
 
Join Date: Apr 2013
Location: Orlando, Florida
Hello Marci,

Thanks so much for this informative post. I actually just joined this forum after reading your daughters success story and have sent you an email as well. Im very interested in speaking with you in learning about the clinics and provider you used for this method. My daughter was diagnosed in Oct 2012 and it seems that the progress has continued to declined and as an effect of the meds, new challenges are being introduced. It's like a vicious circle that will end bad. My daughter is only 8 and already, has seen a drastic life change.

I cannot and will not stand on the side lines without taking aggressive actions and will definitely not let the Dr's keep trying to correct the problem by throwing more meds at it.

I hope to hear from you soon ([email protected])

Thx.
Jack



My 11 year old daughter is nearing the 15 month mark with her hook worm helminthic therapy. It's been about 3 months since I wrote the one-year summary (I'm posting it below) and I wanted to give an update. My daughter has not been on ANY medication (including over-the-counter immodium) since this post. She has solid stools most of the time, and I can count the intestinal cramping episodes on one hand. (And frankly we wonder if those few episodes aren't related to school/stress and not Crohn's?). We are not so naive to believe there won't be hiccups down the road, but the helminthic therapy is thus far miraculous.

Here is my posting from a few months ago on the Yahoo helminth forum:

"Our first year with Crohn's disease & helminthic therapy"

In October of 2011, our (then) 9 year old daughter was diagnosed with Crohn's disease. We had been working with our family physician for close to 6 months to uncover the root of her intestinal pain, chronic diarrhea and steady weight loss. During this half year, she went from 92 lbs. to 69 lbs. and we were becoming frantically concerned for her well-being. It was finally through referral to a G.I. specialist, colonoscopy, endoscopy and MRI that confirmed her disease.

Several days after her official diagnosis, we met for a consultation with her
G.I. doctor to hear his plan for treatment. His recommendation was to begin I.V. treatments of Remicade combined with Imuran. Weekly, then tapering off to every 8 weeks within a year. I was shocked by the invasiveness, the potential life-threatening side effects, and the cost (approximately $6,500 per treatment). I knew there had to be alternatives. I venture to guess I spent over a hundred hours researching on-line, calling folks with Crohn's and reading books ordered on-line.

It was during this intense period of research, that I came upon helminthic
therapy. And I realized I'd heard Jasper Lawrence on an NPR broadcast some years earlier. I dug through podcasts from "This American Life" and found the show I remembered. My husband and I were convinced that this approach, combined with a modest pharmacological program, was our best hope.

We did not enter lightly into our treatment decision for our daughter. Again I
spent countless hours researching and reading about helminthic therapy and we believed that we had nothing to lose, and only to gain. We chose to begin a course of Entocort steroids to bring my daughter's intestinal swelling down quickly, combined with 1500 mg. of Pentasa per day. She got good results fairly quickly from these medications, but after a month or so seemed stalled. At the same time we started these prescriptions, we contacted our provider to begin our daughter's helminthic journey.

Almost exactly a year ago, two tiny little vials arrived in the mail. One for
our daughter, the other for her dad. Our provider allows for a parent to engage in this therapy for "comfort" purposes. It was with much excitement and a bit of anxiety that we applied the `bugs' (as we call them in our family) to the upper arms of dad and daughter. There was a strong stinging sensation and itch about 10 minutes later. It was bothersome, but tolerable for a 9 year old to bear. Neither dad nor daughter noticed a cough in the ensuing week, but were careful not to spit out the bugs as was cautioned by the information from our provider. A rash persisted at the inoculation site for several months. But this was also tolerable.

Over the next five months or so, we kept our daughter on 1500mg of Pentasa daily. And we kept a journal on how many intestinal cramping episodes she had per day. Diarrhea episodes, eating habits, weight gain, etc. Her progress was an improvement to her overall health, but Crohn's was far from in a state of remission. We knew it could easily be 6 to 8 months before any benefit from the helminths would be apparent. Sometime around the 6 month mark, it became apparent that our daughter was having fewer cramping episodes, and would have consecutive days of solid stools. We were cautiously optimistic that the `bugs' were kicking in!

Then came the set-back. In April (the 6 months of helminths mark) pertussis
(`Whooping cough') broke out in our county and in our daughter's 4th grade
class. Our family physician recommended she run a course of antibiotics
prophylactically to be sure she didn't contract pertussis (even though she is
vaccinated against it). Long story shorter, the antibiotics cause the hookworms to become basically dormant, and our provider sent us another dose of 35 `bugs' for our daughter in early June of last year.

The second dose was barely noticeable in regards to side effects. And over the next several months, the second dose went to work waking up the dormant hookworms from the first dose. My daughter was on summer break, and doing a poor job keeping up with her daily Pentasa. By August, unbeknownst to us, she was going days without any prescription medication. And lo and behold was actually experiencing little or no intestinal cramping, having solid stools quite often, and had gained weight over the summer. She looked good, and she felt good. When school began this past September, we made the conscious decision not to have her take mid-day medication at school. We've also empowered her to take Pentasa when she deems it necessary.

In Nov. [2012], we had bloodwork done on our daughter, and scheduled a one-year check up with her G.I. doctor. He was extremely impressed with her progress and utterly in agreement that the helminthic therapy is a large part of her overall wellness. She has no anemia, has gained over 15 lbs. and simply looks and feels good. While there is still an indication of some internal swelling from the `sed rate' shown in her bloodwork, the improvement from a year ago is stunning! Our beautiful little girl is yet again thriving.

Suffice it to say in our family, we are convinced that we've chosen the most efficacious treatment course for our child. And are so far thrilled with the results of her helminthic treatment.
04-05-2013, 04:54 PM   #12
my little penguin
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Join Date: Apr 2012

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Welcome Jack
Please check out the parents of IBD forum

here---->
http://www.crohnsforum.com/forumdisplay.php?f=49

My son is 9 and was dx at age 7 so I know where you are at.
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DS - -Crohn's -Stelara
07-02-2013, 05:16 AM   #13
Dwild28
 
Join Date: Jul 2013
We tried it for our son too. It's working!!!
07-02-2013, 09:48 AM   #14
rollinstone
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Dwild, welcome to the forums, feel free to say hello and share your story
07-31-2013, 07:55 PM   #15
Lov-it
 
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Join Date: Dec 2012
Location: Saint Joe, Indiana
Hi Marci

Can you help me locate a HT provider? We live in Northeast Indiana. My email address is [email protected]

Thanks
Michael
12-27-2013, 12:56 PM   #16
bmj210
 
Join Date: Dec 2013
Marci:

can you please email me your helminth therapy provider information? My 13 yr old niece has been been dealing severely with Crohn's for over a year. She is on Remicade, various vitamins, Prednisone and nothing has really worked. Furthermore, she has been recently diagnosed with arthritis in which more medications were prescribed which are furthering worsening her condition. She was recently hospitalized and discharged on Christmas Eve only to be readmitted today. We are desperately seeking treatment for her condition that will be beneficial. Any and all information that you have will be extremely appreciated.
Warm Regards,
Bobbie ([email protected])
12-28-2013, 05:41 PM   #17
rollinstone
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Hi BMj, sorry to dissapoint you but the helminthic trials recently finished and they were not very effective. Have you asked the GI about fecal transplant? Or if you're in Canada the SSI vaccine trial. Or the anti-map trial. All of which have shown to have promising results in preliminary trials. God bless, hope your little one heals soon
12-30-2013, 04:04 PM   #18
bmj210
 
Join Date: Dec 2013
Hi Joshuaa:
Thanks for the information and the kind words. I will definitely look into the fecal transplant and anti-map trials. Thanks again.
-Bobbie
12-30-2013, 04:51 PM   #19
my little penguin
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BMJ you may want to try in the parent forum..
here-->
http://www.crohnsforum.com/forumdisplay.php?f=49

lots of different parents have tried many different things with their kiddos


all concerned caregivers are welcome
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