Helminthic therapy, hookworms, whipworms and how I achieved remission from Crohn's - Part 2

@tsitodawg
I have never read anything that has made me so angry. Only those of us who are cursed to have Crohn's disease have any idea what a horrendous debilitating disease it is. I used to tell people that Crohn's disease isn't fatal, it will just make you want to kill yourself.
I was diagnosed in 1999 after losing 20 lbs in a month and having bowel movements that I described as passing shards of glass. I was one of the first people to try Remicade and the reason people look past the side effects is because they are sick and desperate. Remicade would work for maybe 2 weeks on me and then I would spend 4 weeks bed ridden waiting to get my next infusion. I never developed lymphoma but it tried to kill me twice. Once during an infusion, my throat swoll up to the point where I couldn't breathe. Luckily my cancer friends in the recliners next to me were able to alert the nurse. The last time I tried it we had to stop because I got an unbearable pain in my spine that nearly sent me to the hospital. I spent 10 years staving off doctors who wanted to remove my colon. Surgery is not a cure for Crohn's as it often just reappears at your stoma. So I found a good GI and a Colorectal Surgeon that I could trust and then went on to try every drug out there no matter the side effects. On my highest dose of Remicade, my insurance company was billed 17K for one infusion. I discovered TSO about five years ago but could not afford it at $2500 a pop every six weeks but was fascinated by the theory. I have tried Cimzia and had mild success with Humira when my insurance company accidentally doubled my dosage and my GI approved more frequent injections. I was so miserable in 2009 that my GI was suggesting prednisone(Devil's drug) and Methotrexate as my only possiblilities. These are what they give terminally ill people to extend their lives so they can take care of any business before they die.
So my husband made me listen to the Radio Lab where they spoke with Jasper L. I discussed it thoroughly with my family and my GI and then committed the funds in late December 2009. Unfortunately, this was at exactly the same time Jasper was transitioning out of the country and having difficulty reproducing the hookworms. I didn't receive my dose until late April and had to travel to Canada to accept the package. I had a little rash on my arm initially but had a terrible reaction that I can't pinpoint to the worms but ended up in the hospital a week after infection with the worst abdominal pains I have ever had. I was diagnosed with a distended bowel and sent home after 3 days. But I am a regular at the hospital, spending at least 5 visits a year with 2 extended stays. My prednisone was upped to 60 mgs per day at that point and I didn't start tapering till June. I bearly made it to my daughter's graduation in June and can't stand to look at the photos with my moon face and hump. But come July, the change was unbelievable. I haven't felt this good in 10 years!!!! I can do everything; travel, cook, spend extended time away from my house. For the last 10 years, I felt like I had been laying in the window seat waiting till I have to go to the bathroom again. My pain was so bad that my husband would wake up at 5am to give me pain meds so I wouldn't wake up vomiting from the pain. I am off all my Crohn's meds and even the high dose Hydracodone which I was taking at least 6 a day. This is why we are spreading the word about Helminthic therapy. I have people call, email me, and facebook me constantly because my family and friends are amazed at the change. We are in no way profiting from it. And if you will do enough research you will find people reproducing them and giving them away. What did your marketing professor call that tactic?

I do not want to argue, just want to throw another voucher out for believing Helminthic Therapy is truly trying to share his experience regarding how those worms have helped him. He's been very ill for a long time and now he's in remission. (I am also a friend of his on FB, as are some of my other Crohnie friends who do not even post on HW). (BTW - HT, maybe a different screen name would take some heat off?)

When I first started on HW, I posted so much about Prochymal... It's a wonder I wasn't accused of representing the company. And, in all honesty, I have considered buying stock. Would that make it illegal for me to discuss the benefits I received from the trial? I don't know.

But, we have several members here who talk about alternative therapies and their fears of the typical TNF drugs. Some talk of SCD as it's the cure-all to Crohn's. for Helminthic Therapy, it's the worms. For me it was the Prochymal. For others, it's the LDN.

I agree we are all here for support. I'm not that far away from the worm therapy myself and have discussed it with my doctors several times. It is a viable path for those who have exhausted all other paths.

We should not fear the treatments, I'm referring to biologics, when they have potential to give us our lives back. In increased risk of cancer is increased from a very small number. It's still a very small number. But, I welcome hearing everyone's story, personally. We're here to share... I'm sorry that it's gotten so negative here. Maybe we can just let it go and show respect for one another's choices.

in the meantime, I'll keep on hoping that Osiris can pull off an approval.

Post Edited (sr5599) : 1/7/2011 1:03:56 PM (GMT-7)

Jojanna, how many hookworms did you take? Did you do whipworms as well or just hookworms? How are you doing now? Are you planning on seeing how long you go before you redose?

I had horrible side effects to the hookworms as well, (and just for 10! I would have been hospitalized for sure if I did more originally) and know of two other patients that had to be hospitalized for doses of 20 and 25 hookworms. One got a lot better, but lost his worms, redosed, and had to be hospitalized again, he terminated. The other terminated before waiting for efficacy. They both had severe CD...

Of course, for their stories, I also hear of people with almost no side effects, who got off all drugs, and are in perfect remission for the first time.

I got through the initial side effects of the first dose and was in remission in 4 months. I could eat things I hadn't been able to in years (I was on SCD for 7 years, so a slice of sourdough was heaven.) But I redosed a bunch of times early on with just a few worms and lost efficacy. The second year, I redosed with 10 worms every 6 months and maintained remission that way. Last year has sucked; I waited until I had high inflammation again before redosing (still had some worms, but egg counts were really low; I get about 6 months before the egg count plummets and the CD returns; last year I had to go 9 months before I could get new worms ), and I had to go on Pred to deal with the side effects from 15 hookworms. They were just starting to work again (week 8-9) when I added TSO, the second and third dose caused a severe flare up and I had to go back on Prednisone (I was down to 2.5 mg.) Lost some of my 15 hookworms (egg counts went down after the TSO flare), so I redosed again in November with 10 more hookworms.

Bad side effects weeks 4-8 Now I'm waiting for the good times again...(I think I'm week 8?) It's been 6 long months of various worm side effects, with no rewards. :(

Moral to this worm story:

I certainly am not going 3-5 years without having to redose, and I know of no one with IBD who is.
Hookworms and whipworms (but less so) can cause severe side effects, but also are highly efficacious.
Some people get almost no side effects.
Redosing usually results in reduced side effects, unless you wait until your disease returns with high inflammation, then it sucks.
Worms may not work longterm, 2 long term users (4+ years) are having breakthroughs in their disease despite ample worm burdens. But their first few years were heaven.
Hookworms can contribute to iron and magnesium deficiency, even smaller numbers like 25, but for most people they're fine. I didn't start to develop mg deficiency until about 9 months after hosting.

I think women fair worse?
No one knows the correct dosing schedule.
It's extremely individual.
There are 100's of patients who have tried this so far, but one of the two companies destroyed all their records last year, so we don't know how they are doing longterm, or how many people are benefitting, but they claim almost 80% efficacy for all diseases .
Hardly anyone is doing egg counts that I know of, so we don't know if efficacy is diminishing because of worms dying off or what.
Australian researchers said the immune system curtails the numbers. Their unpublished CD trial had some losing efficacy and needing redosing within 6 months; worked for some to redose, not all.
Still seems safer then most IBD meds.

Hope you and helmintherapy experience long lasting benefits! No one should have to go through what I have this year with the worms, and 3 years into it. I was so hopeful and thought I had found THE ANSWER but now I'm not so sure. I also recommend you keep a good relationship with your provider, so you can always access worms when needed. (If they can stay in business and not get run out by the FDA!) DIY movement is just getting off the ground, but it's illegal to share infectious organisms in the US.

And I vouch for helmintherapy as well. We've talked on the phone and chatted on Facebook a lot. Just another smart guy with a horrible disease who has finally found something safe and natural that works! I was all over the forums when I first reached remission too. Now I'm the depressive nay-sayer who knows too much, but still believes in the worms' effects.

But I still think the worms are more effective then most IBD drugs; I've been on them all except for Cimzia and Tysabri. Hoping these hookworms bring me to a better place soon, so I don't have to try the next biologics!

Side effects that I experienced with the first dose: fever , increased diarrhea, gas, abdominal pain...reactive arthritis, edema, intense fatigue, fatigued muscles from not much exercise.

Side effects to doses when I had no inflammation: diarrhea, gas, increased urgency, from weeks 3-6, on and off

Side effects to last 2 doses of hookworms (15 and then 10) with high inflammation: fever, nausea from weeks 2 on, increased diarrhea and urgency, increased mucus (can't blame the worms, might just be colonic inflammation), upset stomach, fatigue

My husband got dosed with me this last time, with 25 hookworms. So it's been great comparing myself to someone without IBD. He's had bad nausea on and off from weeks 2-8. Weeks 5-8 he's had on and off looser stools (cow pats he calls them) with some urgency. (Very, very rare for him, he says he only has such stools when he drinks huge amounts of coffee or too many peanuts.) He's fatigued a lot, exercise for him is off; some days he can't push himself on the bike like he used to. His acid reflux is a lot worse, which I've heard from other patients. Poor man, no gains so far, only negatives. (He's using them for metabolic syndrome, but mostly to be a safe resevoir donor for me if AIT and wormtherapy go out of business.)

The other thing we noticed in parallel with this last dose is muscles got EXTREMELY sore from not much physical activity. For example, I walked on the beach in the sand and then had very, very sore muscles all throughout my calves down for a week. Rolled a heavy cart around a few days before Christmas, and my neck is STILL sore.

I'm going to do an egg count on both of us today and see if the worms have matured. I've noticed that as soon as they start laying eggs (in my experience, between weeks 6-9) improvememt begins, and the side effects start to drop off.

Most people start to get efficacy in the third month.

Some people get no side effects AT ALL. (Can I just say that I am extremely jealous?) Those on Prednisone, Humira, or other immunosuppresives do much better with the side effects.

TSO caused me nausea and diarrhea for a few days with the first dose, fever and pain and diarrhea with the second dose for a week, total liquid evacuative diarrhea and terrible pain with the third dose non stop for 10 days, lost 10 pounds, which didn't respond to 40 mg. of pred; had to do 60 for 4 days to even get any effect.

I am the side effects queen, though. I think I'm one of the most reactive people to hookworms to date. I have no idea why TSO was such a disaster. I want to try trichuris trichuria, but after the TSO, I'm afraid. (And Marc from AIT says those who have been exposed to TSO get worse side effects from TT...hmm.)

But like I said, some people get little to no side effects. I think IBD patients have it the hardest; because normal people respond to worm infections with pain and diarrhea, increased eosoniphils at the intestinal site, fatigue, etc.

I had the side effect of total nuetropenia to 6MP (almost died), tripled CRP and 3X worsening from Humira , Remicade worked for a year, but contributed to scar tissue in my descending colon, which then had to be removed, the next dose of REmicade caused me horrific acne, yeast infection, and herpes infection, which I never knew I had (had been married to my husband for over 13 years by then), and I've experienced all the joys of Prednisone.

I was very surprised by my worm reaction, but I was the second person with IBD to try them. First woman. I have no idea how common the side effects are; you'll have to ask the providers and trust that they are honest, and trust that people provide follow up, which a lot of them don't. I've heard from a patient who had her colon removed after trying worms from AIT (it was just too late) but she had no follow up at all from them, so I don't know if they even know and include it in their statistics? Also, some people go into remission and don't respond until they lose their worms or efficacy.

I find wormtherapy.com to be much more methodical with their tracking, and much more honest about the positives/negatives of the therapy. They provide hookworms out of Tijuana, don't have TT yet but are getting it.

Good luck!

Good Evening All,

Hey Nanners, how are you doing?

This is all very interesting. I have wondered what's being going on in worm therapy but have been dealing with multiple issues, cuz after 25 years of IBD the issues are always multiple, and dealing with present demands. I friended (hey friended isn't in the dictionary; it's not a real word.) Bertie to start my investigation of it, and he brought me back here.

I'm really glad I came.

Question? Has any one done this therapy with a fistula. I have a well established colo-cutaneous (5 years) and probably another between my small and large, for lord knows how long. Crohn came out of a 9 year interrupted remission but it's now not as violent as the first 15 years.

I've got TPN Jacked into my heart as I type and have done this for the last 161 days. Actually, I don't mind. I've put on 18 pounds and don't feel as weak. Still I've maxed out on my weight, 110lbs because I am missing my central abs and have a rather large hernia that can tear.

So, reading this conversation along with Berties posts, and now 7007's, clarity and description, I'm thinking some more.

Things started going to hell when I got CD related tendinitis and after 4 months and nearly every other day tearing (lordy that hurt) I stumbled into my Rheumatologist'S office. Hell I even let her shoot me with a steroid/ something else combo shot. That hurt so bad that she gave me two Tramacet and a few samples to take home. The shot made things worse, I had a pocked of liquid stuck in that mess, along with a tear and tendinitis.

Guess what folks, Tramacet has codien in it. I took the 2 she gave me that night and then white knucked some more. Toradol, my pain killer of choice did nothing. (My body tolerates it extremely well, which makes me an oddity, but I have to say, finally! A drug in my favor. I hate opiates.) I didn't take any more till my gall bladder brought out the catapult and threw a stickler. Little too many sources of pain at once. Over 5 days I took 4 Tramacet, got constipated and pushed some undigested food up the fistula. Hello abscess, I know, it was inevitable.

I also had ERCP for the gall stones, opens the common bile duct. Better than surgery to deal with the gall bladder, that.


I went back to the Rheumy, who is one of the good doc's, and she started talking about LDN as a last alternative to help my shoulder; she gave me a scrip saying the choice was mine, promised me it would not mess with my stool, and then I did my research. What do you know? It's being studied for use in IBD. A two-fer, I'll take that.

The first double blind for LDN was done this year with same success, about 67%, as the other drugs. The only side effects being disturbed sleep and better dream recall for a few weeks (not every day). All it does is increase your endorphin production for a bout 4 hours a day.

Endorphins, in turn support (do not suppress) the immune system.

Within a week the pain in my arm, all tendons became inflamed, and it moved back to the shoulder. I get an ache now when it rains, and it's weak, but I have full range of motion.

As for treating the CD. I have virtually no pain due to CD -- the abscess yes, but it's not going to fix that. I have more energy than I would with no drugs. I really don't do BP drugs well. I too am a reaction queen, nice to have a kindred. The energy I have on LDN is smooth, and mellow, polar opposite of steroids I still need naps some day, it fluctuates, but I wake up awake, I can push through a day without too much damage, a low day after is about it, ok, two. It does allow me to cope where I am, mostly.

Question? Is there knowledge of any combining LDN with Helmintherapy?

I can see how these could work together. I think there's some one else I can ask, I'll let you know when I find anything out.


One more question? What would something like Cholysteramine, which is a bowel salt, binding the poop (I take it for short bowel, and it's perfect. Firms without constipating.), would help mediate some of the poop problems of introducing the worms...?

You know I have troubles with the Yahoo forums, not getting responses, loosing posts. Annoying.

7007 perhaps you could ask and LDN + worth therapy person to post their experience here? Just a thought. I'll explore if I must :)

Also, Asking about Cholysteramine (also known as Questran) bile salts, if they would effect worm/egg production, and which binds the stool, to those who are researching H.therapy would be a good idea. It could save some folks many many many trips to the can, and the wasting that comes with that.

Also I wrote Dr Zagon at Penn State this morning and got a speedy reply. (PSU is where they are testing LDN for CD)

Here are questions and his responses, cut an paste from his email back to me.


Do you know of anyone who is using LDN along with Helmintherapy?

Response: NO.


Does/could LDN help mediate the side effects some go through after introducing the worms?
Response: An interesting idea that needs to be tested.


Would LDN do anything to prevent the worms from doing what they do?
Response: I don't think so - short of interfering with cell proliferation - reproduction perhaps.


Comment: LDN works through the OGF-OGFr axis. I would suspect that OGF would be far better to try initially to see if the system is even working towards what you want. LDN is intense, and involves pharmacokinetics [what the body does to the drug as oppose to what the drug does to the body] in the processing of the drug - and it depends on the rebound effect.

*Note on meaning of rebound effect: LDN works by shutting off the opiate receptors, which then forces the body to produce more endorphins.

* Note 2, I'm not sure what OGF-OGFr axis are... Anybody? Though I can find out...

That's too bad. It's the never ending chit of IBD.

LDN is an opiate agonist and cannot be taken with opiates, I should mention that.

Did it occur to anyone that maybe LDN and salfa drugs cannot be mixed?


Does anyone know of someone with fistulizing CD using Worm Therapy?

@Nanners - no, it's not my real name.

MToronto 2,
you asked: "what is OGF - OGFr axis,

Here:
http://www.ldnscience.org/what-is-ogf

GF is short for Opioid Growth Factor (Met-enkephalin).

The body naturally produces morphine-like substances known as endorphins under certain conditions. Endorphins have numerous functions ranging from control of pain and mood, to regulation of the immune system, growth of cells and angiogenesis.

One endorphin that has been studied extensively in relationship to cancer is known as ‘Met-enkephalin’. Because Met-enkephalin has been shown to control growth of cells, it is often referred to as ‘Opioid Growth Factor’, or ‘OGF’.

Dr. Ian S. Zagon and his team at Hershey Medical Center, Penn State University first discovered the role of OGF in controlling growth of cancer in 1987. Since that time, over one hundred research projects have been undertaken by Dr. Zagon and his research team to clarify OGF’s mechanism of action and its potential use in cancer and other diseases.

Synthetic OGF is a small protein molecule which is not absorbed when administered orally. It has been used clinically in injectable form in various trials for treating cancer, autoimmune disease, and AIDS.

Opioid Growth Factor is a member of a group of agents collectively known as ‘Modulators of Opioid and Receptor Activity’ (‘MORA’). Another related ‘MORA’ drug discussed on this website is Low Dose Naltrexone (LDN).

Here's another work of Professor Ian Zagon and other:

http://www.news-medical.net/news/20100824/Research-on-OGF-OGFr-complex-helps-to-understand-pathobiology-of-diseases.aspx

Sorry, I don't mean to hijack your thread, Herbert Smith,

but I felt I had to answer MToronto2, asap and here. I also have to say that these subjects discussed in this thread is one of the most interesting threads at the moment here at HW in my opinion.

It's fantastic to find out if helminthic therapy and LDN could be a combo, I can't wait for more information on this. For me personally, since I can't use any known Crohns med's so far, because of a kidney cancer, I always have to look for other options. So far, LDN is keeping the inflammation down, and has done so for more than three years, thank God, but I always need to be searching and researching.

Yes, well, if it's MM it's me. Do you know of others with fistulizing CD that has has used HT?

Thanks Bertie, grins.