hookworm therapy for PMR?

Posted , 7 users are following.

Have any of you had experience with using hookworm to dampen the autoimmune system and reduce the symptoms of PMR?  Evidence seems to be accumulating on the effectiveness of this in treating other autoimmune disorders.

When I was first diagnosed, I assumed I’d have to take some prednisone for months or years and everything would be dandy.  However, based on the experiences of those on this forum, and my own overwhelming fatigue, I am getting less optimistic.  I would welcome a few intestinal fellow travelers if this would allow me to avoid both chronic inflammation and the side effects of long-term use of prednisone.

For information on this, you can google “hookworm” and “autoimmune,” or look for the program on parasites.

I’d really appreciate any information anyone might share on using this approach for PMR.  Thanks!

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  • Posted

    You can't be serious!  Sorry.... Which is worse.... Prednisone or hookworms inside my body!

     Don't get carried away...

    • Posted

      I am completely serious.  Compared to the effects of PMR and the side effects of prednisone, a few hookworms seems pretty minor.  (The number of larvae you introduce is limited, so you do not have a huge number and anaemia.)  Also try googling "radiolab" (an NPR program) and "parasites!"  
    • Posted

      Hi snapperblue; I havn't read any of the other replies yet, but please don'tt even think of going anywhere near a "hookworm".  If you read anything re hookworms, it only takes ONE larvae to infest your whole body, and in a VERY short time....and once there, it is VERY unlikely that you will EVER get rid of them. Just read some of the medical probs of Africa, and you'll  see the damage that hookworms have done to the African population.  There certainly wouldn't be any need to worry about GCA or any other medical probs, as the hookworm would kill your liver in no time at all....hopefully you have your answer to your question....Bron
    • Posted

      True, a heavy load of hookworm causes anemia and general ill health.  This is a major health problem in Africa and was in the southern US in the early 20th century. Hookworm was essentially wiped out in the US by sanitation, including outhouses 6 feet deep (farther than the larvae could travel). Hookworm is dangerous in a situation where people are repeatedly exposed and have lots of worm.  I am not suggesting this!

      Like many parasites, hookworms have very specific needs at each stage of the life cycle.  You cannot get intestinal hookworms by ingesting the eggs, for example- the larvae have to enter through the skin, molt to the next stage in the blood, emerge in the lungs, be coughed up and swallowed.  That stage can develop into the adult form in the gut.  The adults produce eggs that go out in the feces- if it is warm enough, they hatch into mobile larva that infect by burrowing into skin of another host. 

      So hookworm does not multiply in your body. Every adult in the gut comes from a larva that entered your skin. You can control the level of infestation by the number of larvae you expose yourself to.

      You can also rid the body of the worms with standard helminthicides. 

      I am not totally nuts!  I have a PhD in biology and have taken a course in parasitology.  If you look up “autoimmune” and “hookworm,” you will find lots of articles on the topic.

       

    • Posted

       hookworm, one of the most widespread and insidious parasites afflicting developing nations, according to a collaborative study at UCSF and Yale University.
    • Posted

      Among parasitic diseases, hookworm infection is second only to malaria as a cause of disability worldwide. While not usually fatal, the infection is debilitating, slowing children’s development and causing or exacerbating iron-deficiency anemia, which can be serious in young children and pregnant women, especially in those who already are undernourished.
    • Posted

      All these things are quite true. However, the use in medicine would be carefully controlled. Snapperblue has already explained how it works. All the facts you have quoted are relevant to people paddling in water that is infected so the larvae get through the skin and set off on their life-cycle. The more larvae get into the skin, the greater the infestation. In the use she is talking about you introduce known amounts into the gut, they won't go anywhere else. 

      It is perfectly reasonable and good biological science and is being examined in research projects under carefully controlled conditions. You cannot compare that with children paddling in filthy water in Africa.

    • Posted

      you get it from the soil not the water... don't worry sooner or later we will have enough hookworm problems as we import more and more produce from countries who use raw sewage as fertiliser... there is a vaccine being developed agaisnt this parasite but not available for some time yet. wearing shoes is the best way to avoid these worms especially in warm countries with poor hygene. not having any bare skin contact with soil. washing forieng vegetables with soil contamination should be done with rubber gloves.
    • Posted

      Oh thanks - should have checked that bit. But the same applies about the cycle.
  • Posted

    Good grief what an horrible idea. I know these things must have some purpose but no thanks! Parasites can cause all kinds of unwanted damage in a person.....
  • Posted

    There is research ongoing at a central England university - can't remember which at the moment and it has been discussed on the forums before, 2 or 3 years ago. It isn't mainstream medicine yet - but several of us said we'd willingly be guinea pigs! 

    In fact though - one of the ladies who said she'd he happy has been off pred for some considerable time now!

    Snapperblue - you DO mostly get over it and off pred. I'm still on pred after 10 years of PMR but I am unusual in that sense and I feel very well on a dose of 4mg. Don't despair!

  • Posted

    last August I came off Prednisolone for about 8 weeks after being on a fairly high dose for 11 months. All side effects dissapeared including the gained wieght, the hump the hair loss and the awful rash on my arms.... Then I had a relaps and was back to square one. Wish I had found this forum back then because I would probably be down to 5mg by now.

    However none of the problems that Pred can cause would ever make me want to infest myself with this horrible parasite that causes so much misery in poor countries. I remember way back in the Sixties visiting my doctor who had seen his first case of Hookworm... He was mortified and worried because suddenly we in this country had been exposed to a parasite that is very hard to eradicate. He said 'Oh my God our sewer systems are going to be overun with this now and that means our soil will no longer be safe for kids'.. Hookworm transfers through the skin if you run about in bare feet. Many pets nowadays are infested, especially in poorer areas and many are being imported illegally completely ridden with them and other even worse parasites.

    Do not be stupid! Until something is available to completely irradicate parasites from the system don't try mad theories. However clever they sound somone somewhere... probably a child, will suffer from this idea.

     

    • Posted

      Thankyou Christine Fay; I know that there are many things that I do not know (and I do not have a Ph in Biology...although have studied it); but from my Clinical Experience, I certainly would not like to see Hookworm, or any of the devastating worms of other countries, deliberately introduced into anybody, even if under a controlled experiment....thankyou fr your support, and thoughts.   Bron
  • Posted

    Hi Snapper Blue,

    I have read a lot about helminth therapy in the past and I agree it certainly looks promising.  I would be tempted too, but the initial side effects gave me pause.  If you try it, I would love to know how it went.  It makes a lot of sense.  I thought there was some research going on in the UK and perhaps other places.  But I haven't heard any followups on that research.  It was a popular therapy 100 odd years ago as a way to lose weight!!

    • Posted

      The rationale behind treating autoimmune disorders with parasites  makes sense to me too.  In the eons in which the ancestors of hookworm lived in the ancestors of humans, host and parasite coevolved.  Humans developed an immune response and, the theory goes, the hookworms developed a way to dial down the human’s immune reaction.

      I am not too worried about the side effects- they can be unpleasant, but, conveniently, they are treated with prednisone, which I will already be taking!

      Hookworm therapy is so successful for remitting/relapsing MS that the company that sells the larvae in England will refund the fee if a client does not experience substantial improvement in a year.  When have you ever been offered a money-back guarantee on a medical treatment! 

      So far, most of the evidence is anecdotal, just reports from people who tried it and experience dramatic improvement in their Crohn’s, Sjogren’s, psoriasis, allergies, or whatever.  The research Eileen mentioned in the UK (Nottingham) is one of the first (on human subjects) comparing those receiving hookworm versus a placebo.  A recent study in the US did this using pig whipworm on bowel diseases; the results are not published, but at least some of the subjects were really disappointed when the study ended and they could not longer get worms. (Pig whipworms can’t live more than a few weeks in humans, so they had to keep re-infecting themselves.)

      A recent study found a peptide produced by the hookworm that inhibits the immune system, so it may be possible to get the effect without the actual worms. (Described in Science Daily August 2014.)

      If PMR were the benign, easily-treated condition that many doctors believe it is, I would not do this.  But the more I learn, the less I believe that!  I think I am looking at long-term inflammation that has a lot more evil consequences than aches, stiffness, and even the killer fatigue.

       

    • Posted

      I should have mentioned that the Nottingham study is on patients with remitting/relapsing MS.  I can't find any reports on use in PMR.  

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