Helminthic therapy(treatment using hookworms)

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Re: Helminthic therapy(treatment using hookworms)

Postby Apuman » Wed Oct 12, 2011 5:17 pm

mrbarlow wrote:Even if the effect is modest I think £2600 for at least 3 years treatment is reasonable. Think about the cost of interferon which is marginal in effectiveness to say the least. Overall I would say Auto immune Therapy's staff were very helpful. Prior to treatment I had a 90 minute over the phone consultation with Marc Dellerba. I have also had conversations with Jasper. Both have shown an ongoing interest in my progress. Sometimes they are a bit slow to respond but I put this down to increasing interest in the Therapy for a whole range of auto immune diseases.


I would agree that the price they ask is justifiable. I often get similar reactions when I tell people about the price, but knowing what's involved, it makes sense to me.

In my experience with AIT, I've also found them to be quite friendly. Sadly, friendliness doesn't equal professionalism, and I'm really about at my wit's end with them after 6 weeks of trying to get my replacement dose sent here. Half of my emails are never replied to, and when Jasper finally responded confirming shipment, he said he had shipped it air mail and that there was a good chance it wouldn't arrive. I was given no tracking number or any way to know where the package is. When I'm paying more than twice the price of a FexEx package to have my dose shipped, I'm pretty peeved that he decided to take this path.

I've since sent a very stern but civil email expressing my frustrations. I pretty much said that it was not acceptable, and asked that he kindly send a package FedEx. Predictably, I've received no reply.

:-x :-x :-x
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Re: Helminthic therapy(treatment using hookworms)

Postby Lyon » Wed Oct 12, 2011 5:32 pm

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Re: Helminthic therapy(treatment using hookworms)

Postby Apuman » Wed Oct 12, 2011 5:54 pm

I'm not out to bash or unfairly sour reputations, but people have the right to know, and AIT needs to be held responsible for their actions (or lack thereof.) They are a business and need to handle themselves as such. I've just sent another email...
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Re: Helminthic therapy(treatment using hookworms)

Postby Lyon » Wed Oct 12, 2011 6:00 pm

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Re: Helminthic therapy(treatment using hookworms)

Postby mrbarlow » Thu Oct 13, 2011 2:48 am

Apuman wrote:I'm not out to bash or unfairly sour reputations, but people have the right to know, and AIT needs to be held responsible for their actions (or lack thereof.) They are a business and need to handle themselves as such. I've just sent another email...


Hmmm - something is going on?

Ironically I owe them $150 and despite several emails to arrange payment have not had a reply :lol:

Still I wonder whats going on and am a little worried. Perhaps time to set up the 'home incubator'
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Re: Helminthic therapy(treatment using hookworms)

Postby Apuman » Thu Oct 13, 2011 10:15 am

mrbarlow wrote:
Hmmm - something is going on?

Ironically I owe them $150 and despite several emails to arrange payment have not had a reply :lol:

Still I wonder whats going on and am a little worried. Perhaps time to set up the 'home incubator'


This reminds me of a time that me and a friend went and pulled money from a dysfunctional cash machine. He went in first, and came out smiling because it had given him an extra $10. Of course I got all excited, but when my cash came out, it was $10 short. :?

Anyway, I'd say that if you're going the home-grown path, it may be wise to start now while you're positive you have an active source to draw from...
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Re: Helminthic therapy(treatment using hookworms)

Postby Apuman » Fri Oct 14, 2011 10:23 am

OK, update:

I'm typically a very patient and easy going person, but when that doesn't get results, I often resort to being the squeaky wheel.

Emails sent to Jasper and Marc saying I would have to resort to a PayPal dispute seemed to do the trick. Friendly as usual, they apologised for their poor communication and offered to refund what I had paid for shipment. For reasons still unexplained, regular mail seems to be their only option at this point. The chances of me getting my dose in Peru seem slim to none at this point.

Jasper did relate a bit of interesting news: AIT is in the process of getting helminthic therapy accepted as an official form of treatment in the UK. He seemed to hint that things are looking quite hopeful. I'll be wishing them success on that front. They're also working on a new business model, so it will be interesting to see what they have to offer in the near future.

I was on a bit of a rant in my previous posts, frustration was taking hold pretty hard.

The situation, as it stands, is that I will be without helminths for the near future. :-|
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Re: Helminthic therapy(treatment using hookworms)

Postby Lyon » Fri Oct 14, 2011 11:10 am

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Re: Helminthic therapy(treatment using hookworms)

Postby HelminthicTherapy » Sun Feb 19, 2012 9:39 am

Please let us know how you're doing now. Have you tried contacting Garin at http://www.wormtherapy.com? His phone number is 1-888-898-9676. He is also offering helminthic therapy and I found him to be a lot more responsive than Jasper. He may be able to ship you the dose much faster.
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Re: Helminthic therapy(treatment using hookworms)

Postby JasperLawrence » Thu Feb 23, 2012 9:05 pm

Hi there,
We can try DHL in South America. My experiences of it have not been good as I explained when you signed on for this, but we can try.

We have had success with Brazil recently, but when I lived in Central America, Belize, for about four months, airmail and DHL/FedEx all took the same amount of time to arrive. Some of it was comical, for instance the DHL shipment that went to Trinidad, Peru twice, Costa Rica and finally arrived at my local airport after six weeks. On the very day it arrived DHL called to admit they had no idea where my package was. Their phone call could not have been fifteen minutes after the call from the airport telling me the package had arrived.

So my faith in shipping to places like Peru, as we did warn you at the time, is very low. But that does not mean we are not willing to try, and given our communication issues we will do so for free.

With respect to communication issues, yes things are going well here in the UK in ways I did not dare imagine. However we are not there yet, and may not succeed in what we are trying to do.

However, since I no longer need fear that anyone we hire would be subjected to the horrors my wife Michelle and I endured, having to leave the USA to continue to provide this therapy and to avoid prosecution, the loss of our children, etc., we have hired a customer service manager.

If you email Autoimmune Therapies these days at customer_service@autoimmunetherapies.com Ross, our new guy, is required to reply within one working day, Monday through Friday. Remember he is in the UK, so is on GMT, and does not work on weekends.

Once he is fully trained we are going to hire a Customer Relationship Management (CRM) system, and hire another two customer service representatives. one in Canada, and one in Australia, from within our client population. So they know what they are talking about. The objective is to establish 24/7 customer service, with issue tracking through the system, automated surveys to resume gathering data on response rates, etc. But primarily to provide the best customer service possible, with response times of less than 24 hours.

So our issues due to an inability to hire, and growth, are at an end.

I apologise unreservedly for the issues you have experienced, and we will ship you a dose, and keep doing so, for free, until you receive it. Of course, as I said when you signed on, I cannot control, or therefore be held responsible for, the vagaries of the Peruvian customs system or distribution networks. As you are aware the standards for companies like DHL and FedEx, even in Europe, is very, very different from that in the US.

Please contact Ross at customer_service@autoimmunetherapies.com right away and we will get it out next week.

Again, my apologies, but I just could not bring myself to hire so long as someone working for us might be prosecuted for doing so.

Thanks, Jasper
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Re:

Postby JasperLawrence » Thu Feb 23, 2012 10:14 pm

Apuman wrote:Trichuris trichiura live can live 20 years in a human? I wasn't aware of this. AIT was only offering a guaruntee of 18 months for whipworms, vs. 3 years for hookworms.

Not according to the parasitology texts, whipworm live on average two years, not twenty. I have read elsewhere that a single hookworm draws six pints of blood a day, as one for instance for how absurd how much "information" about hookworm and whipworm can be on the internet. In fact, Necator Americanus, the species we use draws, per adult, per day, either 0.01ml or 0.03ml. Depends on which source you read.

The FDA actually isn't allowing Jasper to do any business in th US now, which has set about all of the changes that have occoured in recent months. After an unsucessful attempt to restart his business from Belize, he moved to England, where he is now based. He's had trouble getting the incubation process going again, mostly due the the difficulty of incubating worm larva in a cold british climate, and literally needing to start from scratch after losing all of his equiptment. He's just been able to start producing hookworms again, and he's now focusing on getting whipworm production going again.

That was two years ago now, we now have a dedicated lab staffed with a PhD, whose career prior to us was working on microbiology, vaccine trials and evaluations, etc., in South Africa. The lab runs very smoothly now, when he does not have a cold of course... ;-)

The FDA drama is also why I've been camped out in Canada, as the athorities won't allow him to ship to the US. :? I'm just glad the waiting is almost over.

I'm actually sort of looking forward to the innoculation in a twisted sort of way. I'm sure it won't be pleasant, but it'll give me something to brag about to my hard-core tatooed and pierced friends! :lol: Methinks it's time to win some money on fear factor!


Careful, some of my friends and relative stopped inviting me to their houses after I announced my infection. I have been speaking to people I have met, old friends, and seen them slowly start to lean away from me. Despite the fact that it is, for all intents and purposes, impossible to accidentally infect someone with either of these organisms, witness our issues with re establishing the lab, a lot of people are terrified they will catch it from you.

One of our early clients made the mistake of telling his employer, he thought he was helping him out having gotten good results and his boss suffered from allergies and asthma just like him. I think the term is constructive dismissal. He lost his job, anyway.

So be careful who you tell, although it does make good party conversation, but if you are looking for a friend for the night probably best not mention it.
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Re:

Postby JasperLawrence » Thu Feb 23, 2012 10:31 pm

Apuman wrote:
Considering that hookworms are migrating through tissue immediately and evidently using methods to avoid your immune system from the git-go, maybe 2 or 3 weeks before expecting to see some kind of noticeable effects?


That is a very unusual response time, more typical is six to nine months to respond. As you point out given the relapsing remitting nature of the disease it can be hard to be sure you are responding at all. But I also know many with RR MS have it seasonally, see this example who was in our first cohort in September, 2007: http://autoimmunetherapies.com/candidat ... erapy.html

Quoting:
"Ric's" Account of treating relapsing remitting multiple sclerosis using helminthic therapy
At age 35 years I was in perfect health, at the top of my career and leading a very active lifestyle.
Early February 2003 I had a sudden MS attack and was given a diagnosis of Multiple Sclerosis, completely paralysed from the neck down.
I consider myself lucky to some degree, my type of MS is Relapsing Remitting which means the body repairs itself but is susceptible to further attacks.
So far and with time I've recovered nearly completely after each attack, just experiencing residual damage.
I have experienced an attack every year around April-May like clock work since my first attack, until this year.
Here's a brief history of my MS attacks which required hospitalisation, of which I also have records and MRI scans.
First attack 2003 complete paralysis neck down.
Second attack 2004 limited use upper arms
Third attack 2005 vision loss
Fourth attack 2006 unable to lift left leg
Fifth attack 2007 unable to regulate body temperature
Attack Free 2008 (note, he has emailed me updates but too busy to update site, he continues attack free as of late 2010)
Since the beginning of my MS I have always eaten a very healthy Low fat diet, exercised daily, and taken nutritional supplements - fish oil, evening primrose oil and a good multivitamin. MS Therapies tried thus far: Betaferon (Beta Interferon), Copaxone, Minocycline and Low Dose Naltrexone. Although these therapies work well for some, and more than likely helps slow the progression, I continued to have my annual attacks and my MRI scans showed activity.

After watching a BBC documentary showing low incidents of autoimmune conditions in Africa amongst those infected with helminths (parasitic worms), headed up by Dr. Weinstock and his experiments with TSO (Trichuris Suis Ova), I dug deeper and came across Autoimmune Therapies headed up by Jasper Lawrence.

I was part of the first group to receive helminthic therapy in the form of hookworms From Autoimmune Therapie's on September 25, 2007, Since my first inoculation I've been inoculated with a total of 100 hookworms.

Although this appears to have stopped my multiple sclerosis from getting any worse, as Jasper predicted it has not repaired the damage done up to this point. During the time of my annual MS attack I still experienced very light exacerbations of old MS symptoms which is a reminder that my MS is still present however under control. My hope is that over the next twelve months I will be free of the exacerbations as well. But, my MS is not getting any worse, and this year for the first time I had no terrible experience with paralysis or vision loss. Fantastic.

Also I would like to point out my hay fever and allergies are 100 percent gone!

So far so good!

Ric

End Quote

Others who have gone on helminthic therapy, for MS as well as other disorders, have reported major improvements even within the first week, but it's easy to see how the placebo effect may influence that. They usually tell people that they'll need to wait 8 weeks before starting to see benefit from hookworms. I'm certainly hoping for the quickest reaction, but I won't be surprised if I don't see one right away. There are antigens and misdirected T-cells circulating around in my blood that may take time to come into balance.

Another explanation for why people see a response so fast, apart from placebo, is that the infection and immune response distracts the immune system, which is a system of limited resources. I myself while in a bad asthma attack contracted a bad case of poison oak, and as long as I had a rash my asthma stayed gone. There is also an account online of a father of a profoundly autistic child, who got "hundreds" of chigger bites on his legs while camping with his dad. His dad remarked that his autism almost completely disappeared, and set out to find some benign infectious organism to distract his son's immune system. He is now a very active advocate for TSO for autism: http://autismtso.com/about/the_story/

And then the question begs: If this relapse starts diminishing sooner than expected, can that be attributed to the hookworms, or is it like any neuro would say, just the natural course of the disease? I'll definetly be using my past relapses as a basis, (and I really hate to use two MS cliches in one paragraph) but there's very little about MS that can be said to be "typical"

Get a pre and post MRI, one of our clients did, his neurologist was not informed of his use of hookworm. The results were so good that the neurologist recommended halving his medication, ascribing the results to a strong response to Copaxone. This subject is going to be presented by us as a Case Study at this year's Autoimmunity Conference in Granada, if anyone wants to attend.

By the way, do you know of the MS/whipworm study that's underway at the University of Wisconson? I'm very interested in it, but it seems that it's constantly being postponed.


No idea, but there is a study at Nottingham in the UK for RR MS using hookworm, not sure where it is although I have read that Nottingham is struggling to obtain funding.

Wonder why that would be?
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Re:

Postby JasperLawrence » Thu Feb 23, 2012 10:33 pm

Apuman wrote:Thanks Bob,

Even in the two days since my last post, I can feel improvement, so it seem to be going well, as far as relapses go. The worms may be playing a part in this improvement, but with all of the suppliments and herbals I've been taking, I certainly can't pinpoint it to that.

As you say, the real test of their effectiveness will be time. Going on a regimine of vit D, soy lesicen, and tumaric didn't prevent another attack from happeneing, so as they may (or may not) be helping to reduce the severity of this relapse, they wern't able to prevent it.

AIT says that people usually don't start seeing benefits until 8-12 weeks after infection, so my disease course over the next year will provide the best picture of how well this procedure is working :wink:


That quote was for seasonal allergies, with the relapsing remitting MS, it is difficult to be sure of response times, but we believe it is more like six to eight months. I think you mis remembered our conversation in that respect, or someone screwed up when discussing it with you.
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Re: Helminthic therapy(treatment using hookworms)

Postby Apuman » Mon May 21, 2012 9:22 pm

Hello to everyone!

I want to stop in to give an update of my situation as it stands, since recent events have given me the first real reason in quite a while to give an update. Also, thanks to Jasper for coming by to share his own perspective on some of the different things that have unfolded.

Also, it's worth mentioning that AIT now has a dedicated customer service representetive, which made for an easy an pleasurable customer experience this time around

So as I write this, I'm staying here in Canada about one week after taking a new dose of 35 hookworm larvae. My reaction thus far has been minimal, as far as side effects from the dose are concerned. There was some itching at the infection site for a few days, but no swelling and no rash ever developed. I've also experienced no loose stools since I took my dose, and only some mild congestion on the second day.

Let me now give a summary of how my MS has been fairing since my first dose, just over 2 years ago. Prior to taking my first dose, I was having serious attacks about every 4 months that would affect large areas of my body, having significant effects on my motor skills and sensation. In the past two years, there have been flare ups, but the severity has been limited and recovery has been complete in each case.

All signs in this past year have been especially positive. The last noticeable bit of activity happened last August with just a bit of the "neck buzz" making it's self known for several weeks. Even some of the "perminant" damage that came about from earlier attack seems to be slowly fading. I've been making a point to stay physically active, doing aerobic poi exercises on most days.

AIT is recommending that I increase my dose by 100 in 3 months or so. I feel good about my decision to go on helmnithic therapy. I'll state again that I can't say that my improvements are a direct result of the hookworm infection. That said, when I look a my situations both before and after going on helminthic therapy, I'm happy with the course things have taken over the past two years.
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Re: Helminthic therapy(treatment using hookworms)

Postby mrbarlow » Tue May 22, 2012 6:20 am

Thanks for the update Apuman.

Im at the 16 month mark having had 3 doses (cumulatively 105 to date) and am doing reasonably well. My symptoms are limited to some buzzing in my feet on and off. Occasionally in my hands. My vision in the left eye occasionally goes a little hazy. However nothing that stops me doing anything. I'm working full time - indeed recently coped with 22 days of 12 hour shifts.

The subject of worm numbers has come up before on the AIT private and there is some suggestion that 150-200 are the figures for full remission of RRMS. I may ask AIT for a top up in early 2013 assuming no relapses before then.

Otherwise I stopped taking Rebif 3 months ago. My diet is predominantly Paleo and I have a fairly extensive supplements regimen.

Keep posting and good luck
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