TSO and Food Allergy & Asthma

We stopped the herbs about 6 weeks ago. And in all fairness, the last months before stopping, our adherence to the protocol was hovering in the 70% approximately. So I really can’t be all that surprised that my son ended up with an asthma issue despite having been on herbs. I think that what happened was that the pollen (being sky-high) along with a cold – gave him a cough that lasted nearly 3 weeks. We upped the inhalers – both emergency & steroid – according to our action plan. We did hydrotherapy. And we started acupuncture & cupping each week.  At this point, off herbs, I’ve observed:

• the return of eczema (it was creeping back in with our lax herb taking) 
• a more frequent cough 
• episodes of hives – to things we’ve “tolerated in past” – such as a vitamin c drink 
• his skin is more dry (he is constantly licking around his lips, and so he’s got chapped edges below his bottom lip) 

And so we are at a turning point. After my most recent conversation with the TCM doc – she suggested we expand the asthma protocol. While I don’t know what the number of pills would be per day, it would add to our already average 30-40 daily pill regimen. While I have the utmost respect and admiration for our practitioner, this plan is daunting. I know because we’ve already had a hard time sticking to it. So adding will make it even more challenging. And I know what it gets us – daily pill swallowing with a parachute. Don’t get me wrong – the parachute is awesome, but I want more for all the effort that goes in it. I want new foods. I want total freedom from inhalers for my son. And so, this approach has moved into second place.

 First place is now occupied by helminths. As I’ve mentioned previously, The Epidemic of Absence, was mind blowing. And I think it should be required reading for any practitioner who sees pregnant women or children. I have been fortunate in the last several weeks to have conversations about some of the topics discussed in the book. And this has lead me to TSO or Trichuris Suis Ova or Pig Whipworm.
While I continue to keep necator americanus in my sights – or human hookworm. I am moving forwards with TSO for a variety of reasons – the biggest of which is that you dose every 2 weeks. Therefore there is no guessing if the worms have matured, are still in the intestines, have been somehow eliminated…. you know if you drank the vial you have them in your body. And so, if they work for you (and that is an IF), once you’ve taken your dose you are good to go until your next dose.
While I’ll briefly list some of the positives of hookworm – TSO is where we are most likely headed for now.

• Cheaper 
• No need to redose so frequently 
•  At a certain point, you can probably manage your own re-infection so you are not tied to any provider 
•  The worms take up residence for 12-18 months 
•  There seem to be more studies linking hookworm to allergy symptom relief

I have been working on a “paper” to get my son’s allergist on board. My thinking is that – maybe I’d like to give him the doses in the hospital until I’m sure he can tolerate it. And, I would like to possibly do more challenges. I mean, if the goal is to get more foods – let’s get more foods. But unless his IgE levels drop, that would have to be something done in the hospital as a food challenge. And I’m not sure allergen specific levels will drop – especially given that helminths, as far as I can tell, in general elevate IgE even further. And so if the levels don’t drop – how will I know it is working? Well, we tried out a kung fu place this past week – and my son left the session coughing. In fact, I think it took us about 2 days to fully recover. They have carpet in this place – since they do a lot of throwing, weapon banging, jumping…. and it must be infested with dust mites. This is definitely something we will try on TSO. And if he doesn’t cough – that would be a huge indication that we are getting benefit.

 I’ve been thinking about helminths for my son – and I am able to partially wrap my head around the idea that he needs something he doesn’t have. It’s like having a car without coolant or radiator fluid in it and it keeps over heating. The one area that I am still not totally convinced that this is the complete reason – is why are his levels of IgE elevated to begin with? Is it that he came into this world expecting to host? Or is it still something like toxins that are setting his immune system off in the wrong way?

So what is the plan? If we move forwards (which I am deciding now) we will start on 1000 ova/2 weeks. We will know if it is working after the 10th week. That seems to be the sweet spot. And so, we’ll test IgE & do things like go back to the Kung Fu place. If we are not getting a benefit, we will up the dose to 2500 ova/2 weeks. The repeat the same testing after about 10-12 weeks on this protocol.

The obstacle in my decision process is – what does this buy us long term? From what I can tell, you need to stay on this protocol indefinitely in order to experience whatever benefits you get. If you stop, the benefits stop. I’m not sure what this does for us long term – since my son is still relatively young – before puberty – is it possible this will re-educate his immune system? Will this be a gateway for us to detox better with things like alpha lipoic acid (which I think triggers asthma for us right now so I’ve stopped). Will this get us used to a more free life and ultimately we’ll end up exploring the more long term helminths – like necator americanus? Or will it not work at all, and we’ll be back where we are now? What will his IgE levels look like on this therapy – or post if we discontinue? What will his reactivity look like? If we move forwards with this – I will post on these issues/results.

TSO Safety 

Now, I won’t dive too deep into the science – but here are the studies and anecdotal reports that give me hope. “Evidence of the safety of TSO is now available for more than 200 subjects enrolled in clinical trials….Overall, the evidence of safety of TSO is strong. The side effects have been absent or mild and spontaneously resolving. TSO has been administered to subjects at risk, such as patients with IBDs receiving immunosuppressants concomitantly with TSO, without any adverse effects. Also, it should be noted that given the frequent presence of T suis in farms and the long history of pig farming all over the world, the absence of report in the medical literature of cases of farmers found to be infected with T suis represents a substantial, although indirect, evidence of safety.”

*1  Trichuris suis ova: Testing a helminth-based therapy as an extension of the hygiene hypothesis Corresponding author: Marie-Hélène Jouvin, MD, Beth Israel Deaconess Medical Center, 330 Brookline Ave, Boston, MA 02215. Jean-Pierre Kinet, MD Division of Allergy and Immunology, Department of Pathology, Beth Israel Deaconess Medical Centre and Harvard Medical School, Boston, Mass. “Conclusions: This new therapy may offer a unique, safe, and efficacious alternative for Crohn’s disease management. These findings also support the premise that natural exposure to helminths such as T suis affords protection from immunological diseases like Crohn’s disease.”

*2 Trichuris suis therapy in Crohn’s disease Gut. 2005 January; 54(1): 87–90. doi: 10.1136/gut.2004.041749 PMCID: PMC1774382 R W Summers,1 D E Elliott,1 J F Urban, Jr,2 R Thompson,1 and J V Weinstock1

TSO Efficacy in food allergy 

 Bear in mind, there have been no official studies with TSO and food allergy. The one study done with allergic rhinitis dosed the patients every 3 weeks (and the sweet spot seems to be 2), and so it’s lack of findings of efficacy could be a problem of how the dosing was timed. But here are some anecdotal reports that give me hope:

 “In our study in adults with peanut or tree nut allergy, the only end point was safety. We assessed some standard allergy markers without knowing whether they would be predictors of TSO efficacy. We observed no significant change in allergen-specific serum IgE levels. There was no change in skin prick test reactivity, except in 1 subject who had a general decrease in reactivity and lost reactivity to peanut, which was the clinically dominant allergen for this subject. Four subjects reported a decrease in seasonal allergies while receiving TSO.”*2

“The story of a boy with autism has raised much interest among parents of autistic children or children with food allergy. This boy had severe autism characterized by self-abuse, agitation, aggression, anxiety, obsessive/compulsive behavior, behavioral rigidity, impulsivity, “stimming” behavior, and extreme sensitivity to external stimuli. He was also allergic to pecan nuts and presented with seasonal allergic rhinitis. At the age of 15 years, he was started on TSO at a dose of 1000 ova every 3 weeks for 26 weeks. No clear effect was observed. The dose was increased to 2500 ova every 2 weeks. After 10 weeks at the higher dose, most of his autism symptoms had improved substantially. His seasonal and food allergies were gone, and he was able to eat pecan cookies without having any reaction. After 2 years, the dose of TSO was reduced to 1600 ova every 2 weeks, and the autism symptoms reappeared. The dose was increased back to 2500 ova every 2 weeks, and the autism symptoms improved again.

He is now 21 years old. He has been on TSO continuously since 2008 and has not experienced any AEs. He is free of repetitive and disruptive behavior and cured of his allergies.” *2

Here is the same story from above – as told by the father of the boy on his website:

“Many people taking TSO for Crohn’s Disease reported losing all their allergies while taking the medication. My son has had seasonal allergies and a life-threatening tree nut allergy his entire life. He has carried an Epi-pen since he was 4 years old and we found out (the hard way) that he had nut allergies. We had him tested and his scores for tree nuts on the blood tests for allergies were off the charts. The few times he has come into contact with nuts the reaction has been swift and severe. These would often be caused not by actually eating a nut, but simply by touching something that was at one time stored next to something with nuts. He once touched an m&m candy that had been in a bag with nuts, then touched his face; his face blew up like a balloon and he almost went into anaphylaxis. Several months into the TSO therapy, my son, for the first time in his life, accidently ate a pecan cookie. Pecans are the nuts that he is most allergic to, both by blood test score and by our experience with him. He had absolutely no reaction of any kind. He has also had no seasonal allergies since he started TSO, something he was always plagued with in previous years. Evidently, the TSO therapy has eliminated my son’s allergies, consistent with the accounts of the Crohn’s patients.” http://autismtso.com/about/allergies/

Beyond Food Allergies, Allergies, and Asthma - or Why I can't stop thinking about giving my son worms

Anyone who lives with food allergies and/or asthma knows - it can really make life, regular life, school life, travel life, social life... challenging.  Depending on the severity and the number of food allergies, for example, it can make eating out frightening, if not impossible.   Doing things spontaneously, or longer than planned, can be problematic if you have to get home to prepare food that is safe.  You just can stay later and then catch a bite on the way home.  Distances traveled, and the amount of time you can be somewhere, are dictated by the proximity and access to safe foods and emergency medical care if needed.

This has been our life for the past 7 years.  My son has yet to eat the food in a restaurant (not that most food is something so palatable that I bemoan it's absence, but...).  I've flown with him once, when he was about 5 months old and "food allergies" wasn't yet part of our vocabulary.  We've missed parties, playdates, events, trips.... all because of food.  Well, food, fear of food, and then my own fatigue at somehow coordinating these things safely and prepping something that he'd actually eat - which sometimes just becomes too much for me - so I cheap out and we avoid.  I'm not proud of this - but I am doing the best that I can.

Enter:  an article of interest

There is a health group that I belong to from whom I get frequent emails.  Always interesting, sometimes impressively informative, and just persistently present.  One day I got an email "Article of Interest."  These are the emails I wait for.  They are usually relevant publications with scientific backing that add to my arsenal of information.

And so I opened it, and clicked Men's Health: The New, Ancient Cure for Immune Disorders.
The article is a tear jerking (for me and others living with food allergy) and fantasy provoking story about two separate individuals, who for health reasons (one life threatening food allergies and asphyxiating asthma, the other for debilitating Crohns), allow themselves to be infected with helminths... worms... parasites.

"Yuk," my mother gagged as I read this to her in between my son's music classes.  "Why would anyone want to do that?"

Good question.  So I thought about it.  Why would anyone want to do that?  Why would we maybe want to do that?

Let's go back to the article for a moment.  In it, a man, Bear C he is called, the one with the food allergies and asthma, the one who previously would be thrust into anaphylaxis if he ate a peanut... that one - mistakenly eats half a bag of potato chips fried in peanut oil.  Upon realizing this - what do you think he does - of course, I must reveal at this point that he is hosting a tapeworm - does he panic and call 911?  Inject himself?  Die?

None of the above.  He finishes said bag.

That's where I wanted to cry.  Not that I'd necessarily feel comfortable enough, even if my son was hosting a tapeworm, to give him peanut products - but the fact that he lived.  That his immune system was quiet while he enjoyed, and after he enjoyed, these chips.... that's where the joy is.

Why would anyone want to host worms?  Why would we want to host worms?

I can imagine eating out.  I can imagine traveling.  Not even traveling, I can imagine going to a party with my son, and not having to huddle and hide from the food table... not have to ask everyone before we shake their hand, they touch him... What did you eat?  Can you go wash your hands?   Take flack from disgruntled parents who just don't get why they can't send their kid on the field trip with a peanut butter sandwich.  Worry about spilled milk.  Buy bread baked at a bakery without worrying about sesames or eggs.  Eat grapes and melon in the spring without itchy lips and mouth.  Work more since I could send my son to school with a safe lunch that he would actually eat.  Be a part of more things.  Travel and stay in hotels and areas without worrying about an asthma attack, or where the ER is, or why he just coughed.

I know that we are currently committed to our protocol - but I can't get those worms out of my mind.  It's like being in a serious relationship and just wanting the guy in the next cube so badly, you can't even focus on your work.  Well - a bit like that.

It's actually better.  Freeing my son of food allergies and asthma, would be the best thing I could even imagine.  Nay, it will be amazing and I can't wait.