Author Topic: Post3.Hookworm therapy. My Qualityof Life has gone from 3-4 to 7.5-9 in 21mths  (Read 5431 times)

lornaz

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Post 3.Hookworm therapy. My Quality of Life has gone from 3-4 to 7.5-9 in 21months
Hello All,
Sorry I don't post a bit more quickly. I wanted to give you an overview of the mess I was in before I started therapy and how far I have come in 21 months.
Before I started this therapy, I felt so lack lustre and generally unwell I wanted to stay home, wasn?t confident I could travel anymore and didn?t want to live for another 30 years (I was 50 then) as I thought life would be too tedious, fatiguing and painful.  I?m not saying I was suicidal, but I just felt my quality of life was slipping away, well sort of had really.

Apart from having Sjogrens syndrome I have had severe migraine, and I had a very serious disc prolapse in my neck in 1997 which has taken years to rehab from. I have had a codeine dependence and been on anti-inflammatory drugs for 16 years to deal with the pain associated with this injury and I think the inflammation of the Sjogrens hasn't helped that. Also, the Sjogrens has produced loads of dental work so I have about 8 or 9 dental implants now and have experienced huge amounts of dental inflammation from all the root canal work that failed and extractions I have had.
The other effect of my ill health is I haven?t of recent years handled our hot weather in Australia very well and our summers have been quite a misery for me as I don?t temperature regulate well.
And of course extremely dry eyes and dry mouth. I?ll go into more detail about my bodily changes in those area since I took on the hookworms in my next post.

So after that litany of complaints ? my quality of life sat at about 3 to 4 (or 2 after all those dental operations) out of 10. Pretty dreary most of the time, although I always tried to look on the bright side.

21 months into Hookworm therapy a lot has changed. I will never be robust but I enjoy life and am happy. I have a quality of life that is often at about 8-9 most of the time. I can exercise most days.  I can engage with my family and friends and I can go out a lot more and go away now. Specifically:
?   After 16 years I have quit codeine and mainly take paracetamol about 95% of the time;
?   I not have to be off anti-inflammatory drugs altogether as the gastroenterologist says I have small ulcers in my upper bowel because of my prolonged use of them. But, I am doing it (2 month in) yet previous, 3 days in I would be in so much pain I couldn?t bear it. I attribute this to the hookworms who apparently reduce our inflammatory response. I have tried to get off the anti-inflamms for 15 years but have only succeeded now.
?   I now sweat (details next post) after the 3rd month of hookworm inoculation and my mouth is a lot less dry.
?   I use half of the eye drops I used to use and I haven?t had an eye flare up since I started the hookworms. More details next post.
?   I handled this last summer?s heat that lasted 6 months and was one of the hottest on record. Even my husband noticed that I wasn?t whinging the whole long season! What?s more we have been renovating and had trademens here for months and I have worked outside in 30C heat painting!  I would never have achieved that 18 months ago. 
?   My skin and nails have improved big time and they had become a big problem.
?   Migraines ? I am still on migraine meds but I was using 4 Maxalt wafers (Rizatriptan benzoate) /week (way too many). Now I use about 1 every 7-10 days. Anyone who suffers migraine will know what I?m talking about.
?   I have more energy in general and my head is a lot clear. I?m not in a haze the whole time.
And best of all, I seem to be improving over time still. So, maybe there is hope after all?

There are a few more changes I have forgotten but these will come up when I go over my specific notes and post more detail about my different changes and stages.
All the best
Lorna

Joe S.

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Carolina

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Viruses and parasites are not considered members of the normal microbial flora by most investigators because they are not commensals and do not aid the host.

http://www.ncbi.nlm.nih.gov/books/NBK7617/

Seriously, this is not a good idea. 

Elaine
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litliwlowa

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I gotta go with Joe and Elaine on this one.

Setting aside the heebie jeebies of the whole concept of willingly becoming infected with hookworms, lornaz, and even with your sense that your quality of life has improved since beginning this "alternative" therapy, my concern is more to long term unintended consequences.

When it comes to parasites, which live off their hosts, in my humble opinion it's a bit like playing roullette.

Belief is a strong force, and I can't help but wonder if your quality of life has improved more from the belief that these hookworms are helping (in effect the belief reducing the stress associated with being symptomatic - alleviate the stress factor given that AI's are stress sensitive, might account for some improvement in your quality of life separate and apart from this hookworm therapy)

Personally I don't think using parasites as a long term treatment is a good idea. Unintended consequences.
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Velcro

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I'm with the others on this one.  Also, quitting a long codeine addiction could also improve all those things you listed.  Less dryness, more alertness, more energy, etc.  I have yet to see research that has shown benefits outweigh long term risks.

"Side Effects of Hook Worm Therapy

Over time, hook worms can cause side effects that can be more dangerous, including increased risk for anemia. Protein deficiency can also develop, leading to an impairment of mental functioning  and stunting physical growth in some patients."

Velcro

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And I should have added that I'm not beating up on you.  I think every person has the right to make decisions about their own body and medical care.  I just don't want other new people coming in here and thinking this is a cure when it has no great research behind it and could potentially be harmful.  If it is working for you, more power to you.

Carolina

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Just to be even-handed:

There is research at the NIH on helminth therapy.  Lots of it.

Just put in Helminth therapy and the term pubmed and you will see all valid research on the topic.

Put the term 'pubmed' after any disease, treatment, medication, supplement  and you will find the research published.   Put the term "NIH" and you will find the stance of the NIH and related agencies on those topics.

Here is one published in January, 2014

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0061616/

Authors' conclusions: Currently, there is insufficient evidence to allow any firm conclusions regarding the efficacy and safety of helminths used to treat patients with IBD. The evidence for our primary efficacy outcomes in this review comes from one small study and is of low quality due to serious imprecision. We do not have enough evidence to determine whether helminths are safe when used in patients with UC and CD. Further RCTs are required to assess the efficacy and safety of helminth therapy in IBD.

On the other hand, an earlier chapter from a research book from 2009.

http://www.ncbi.nlm.nih.gov/pubmed/20054982

Abstract
There is an epidemic of immune-mediated disease in highly-developed industrialized countries. Such diseases, like inflammatory bowel disease, multiple sclerosis and asthma increase in prevalence as populations adopt modern hygienic practices. These practices prevent exposure to parasitic worms (helminths). Epidemiologic studies suggest that people who carry helminths have less immune-mediated disease. Mice colonized with helminths are protected from disease in models of colitis, encephalitis, Type 1 diabetes and asthma. Clinical trials show that exposure to helminths reduce disease activity in patients with ulcerative colitis or Crohn's disease. This chapter reviews some of the work showing that colonization with helminths alters immune responses, against dysregulated inflammation. These helminth-host immune interactions have potentially important implications for the treatment of immune-mediated diseases.


I'm not rushing out looking for this, personally.

 8)

Hugs,  Elaine (Carolina)
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Calli66

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Wikipedia has a good article on this topic.

stephL

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Lorna, thank you for sharing. I'm so happy to hear this great news, congratulations on your success!

I can see why you would be confident enough to try it because it seems to be a low risk treatment and it has the potential for the very big benefit of slowing disease progression.

Quote
Scientists have learned that people in good health and on a diet containing adequate amounts of iron can tolerate the presence of these worms in small or moderate numbers without any symptoms.
http://www.niaid.nih.gov/topics/hookworm/Pages/symptoms.aspx

How would I get access in the US if I decided to give it a try?












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aussie mum

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I read you post wrong.... I thought your symptoms improved once you were treated to kill the hookworm..... not treating you with the hookworm.
I'm glad you're feeling better and it will be interesting to see if this type of treatment becomes "mainstream"

Got to admit, the whole idea grosses me out a bit. Then again, leeches and maggots are commonly used as medicinal treatments.
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lornaz

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I guess I'd like to add that all the benefits I gained BEFORE I quite codeine, which has been a recent thing.  As far as anaemia and protein deficiency, that's why you tell your doctor and she/he checks all your levels to make sure you aren't straying into any territory that seems suspect. 
What has impressed me is the people in Devon in the UK at Autoimmune Therapies all have hookworms and have had now, some probably for about 12 years.  All of them had serious health problems which is why they were attracted to getting involved in this area. All of them with their various issues, like ulcerated bowels, Jasper Lawrence with his allergies, and goodness knows what other problems they all have, had found a reasonable or a great deal of relief from their issues.  The main side effects I have noticed mainly come when you first inoculate and your immune system starts 'waking up' and your bowel takes them on. There can be some cramping etc. which I found mild compared to what the hookworms appeared to have given me.

   It's easy to say 'worms are bad'. I think if you are really serious about exploring all possibilities you should read the scientific literature that is available and seek more answers from people who have had this therapy. When I asked my doctor, who is 91 years (but still very sharp) if there would be long term effects, he talked about how he studied under another research doctor who they called 'Harry Hookworm' and who eventually made some break through with malaria (back in the 1950s he was talking). He couldn't think of any long term side effects as long as the population was controlled, as they are in my case. An he knows more than most doctors about the topic. As I noted in a previous post, he actually thought is was an idea with merit as he says our immune system is not challenged enough these days and started going into a medical rave I didn't understand. He finished with -"well, if you get cramps or something, we'll give you a worming tablet and that will be that. No harm done."

There is an independent Yahoo website devoted to helminth therapy (hookworms, whipworms, etc) where EVERYONE has had hookworms for all sorts of diseases!

Yahoo Support Group for Helminthic Therapy

This has accounts of peoples' experiences, and you can ask questions of people directly. Just bear in mind people's privacy as there are many people who are quite hostile to the whole worm thing and most people aren't as open about it as I am.
You can browse the group by clicking  title="Helminthic therapy group" target="_blank">here. Membership is open but posts and the group can be browsed without membership, but posts are moderated to prevent spam.
Anyway, from here I'll let you know the first changes I notice into my therapy WHILE I WAS STILL TAKING CODEINE  :)

 Just to remind everyone I DONT WORK FOR AUTOIMMUNE THERAPIES in the UK!. I'm only doing this because I hated feeling like a bucket of merde everyday and think other people might benefit from this therapy.  But while I saw good changes to my skin and other parts of my body, it probably took 15 months before I really started to feel WELL. Mind you, I had had so much heavy dental work in that time that was bringing me down I'm not sure whether that slowed things up for me.

Hi STEPHL -
Just read your post. The hookworms are posted by airmail in a discreet little padded post bag to you and you apply a liquid onto an adhesive bandage (only an 1.5 inches wide) to your forearm and leave there for 12 hours (see my previous posts I have more detail). The hookworm are microscopic and delivered in this tiny test tube with a tight fitting lid and are microscopic so you can't see them. but I have always felt them. It makes the site itchy when they go in. This always makes me happy as I think 'get, off the little blights go to do their good work'.  Contact www.autoimmunetherapies.com  That's Jasper Lawrence who started it all and his small team of once sick people in Devon.


stephL

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Thanks for the reply, Lorna. I'll check out these resources and work on educating myself. To reduce the "being grossed out" factor, even though they can't be classified as part of gut flora, I'm trying to think in terms of these microscopic worms being a type of probiotic. :D
"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)

lornaz

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Hi Stephl, probiotic is the way I think about them. Actually, sounds weird but I think of them as my little friends now. You see over time I am gathering my own personal evidence that it is them that is working in me.  they don't like dental anesthetic, it makes them sleep for a few weeks and after dental treatment I generally go into a dip. My fingernail skin gets inflamed again and I get more fatigued until they wake up. Happily, if you get a 'top up' of about 10 hookworms from AIT, it stimulates them and wakes them up so can do this after operations if you know stuff is coming up.
AIT have collected the science reviewed articles from various scientific disciplines if you ask them they will give you the properly reviewed peer reviewed journal articles that gastroenterologists and microbiologists or whatever read. They are a bit heavy going (gawd and I did a bachelor of applied science in agriculture 25 years ago but its amazing what you forget!) but its the real thing, not an opinion piece on the internet somewhere.
but at the end of the day I fully recognise this is experimental and I am a happy guinea pig. I didn't want to wait 10, 15 or 20 years for science to make up its mind.
all the best.
Lorna

stephL

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Ok, it's good to know that their effectiveness could drop after dental work or surgery. I realize it's experimental but if it works and it's safer than adding methotrexate to my Plaquinil treatment, it may be my best option. It would be nice to see a few studies for Sjs and helminth therapy but oh well, ours isn't a very prominent disease priority so I wouldn't have expected it. I'm gonna keep an open mind and I'm excited about learning more. :)
"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)

litliwlowa

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Quote
I realize it's experimental but if it works and it's safer than adding methotrexate to my Plaquinil treatment, it may be my best option.
Now if it came down to a choice between methotrexate OR helminth therapy, I would lean more in the direction of helminth therapy (given what lornaz has shared of her experience thus far). As hypersensitive (and allergic) as I am to so many medications, I cringe at the thought of perhaps one day needing methotrexate.

In that circumstance, I think I could get over the heebie jeebie factor (and as lornaz pointed out a number of times, the hookworms are not reproducing "in there").
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