Wriggling out of total food intolerance, M.E. and Crohns disease
My story thus far
For my story up until this point, see: Total Food Intolerance - A Medical Black Hole.
A glimpse of possibilities
Taking part in the short Hookworms for Crohn's Disease trial at Nottingham University in 2007 had provided me with a brief but tantalising glimpse of how my health might be improved by hosting a small colony of benign intestinal worms, and I was determined to acquire a long-term infection as soon as possible.
To this end, I had secured the agreement of my gastroenterologist, who referred me back to the trial team for reinfection. However, in spite of an earlier indication that they would be willing to provide me with a further dose of hookworms, the trial coordinator then told me that this would not be possible until the study was complete.
This was a considerable disappointment because the trial was taking an inordinately long time - probably due to difficulty finding sufficient volunteers willing to host a small worm colony - and it became clear that the trial would not be complete until the middle of 2009.
In the meantime, I had required further bowel surgery, to repair yet more Crohn's-related intestinal strictures, and I was still unable to eat any normal foods due to multiple allergies and overwhelming food intolerance, not to mention having a number of other long-term health problems, including M.E.
I was becoming impatient, not least because the only food that I was able to tolerate was a solitary hypoallergenic formula prescribed by my GP, and I realised that, were I to lose my tolerance to this also, I might well follow in the footsteps of those, such as Annabel Senior, who have lost their lives as a result of medicine's failure to engage with total food intolerance.
Even if this particular aspect of my health proved not to be amenable to the help of a group of helminthic 'old friends’, there was considerable evidence suggesting that I should at least benefit from a reduction in allergic symptoms, and an attenuation, or perhaps even cessation, of the development of intestinal strictures.
As one door closes…
It was extremely frustrating to know that a possible solution to at least some of my health problems was wriggling in a laboratory at Nottingham University, just a few miles down the road from where I live, and that I was being denied access to them. What I needed was a source that would deliver worms direct to my home, and I knew of only one such supplier, a company called Ovamed (since replaced by Tanawisa) who sold pig whipworm eggs, but at a price that was beyond my reach.
More out of desperation than hope, I turned once more to the internet, where, miraculously, I found that there are companies that sell the hookworm, Necator americanus (NA) - the worm that was used in the Nottingham trials - and at a much more realistic price than the porcine product.
I soon discovered that there was already a small community of helminthic therapy self-treaters with far more knowledge about the therapeutic use of helminths than I had been able to glean from talking to the researchers who are working with the worms in the clinical trial.
The Nottingham scientists had only looked at the safety aspects of using ten worms in patients with only a couple of diseases, and the trials had been too short to assess efficacy in either case. In contrast, the members of the online helminthic therapy community were using worms to treat a wide range of autoimmune conditions, and a growing body of knowledge was building as a result.
Unfortunately, understanding about how best to dose with hookworms was still in its infancy at that time, and the company I purchased from recommended I start with 35 NA. This was far more than are needed, and I would subsequently have to deal with prolonged gastrointestinal side effects as a result of this excessive dose.
The experiment begins
My new team of little wrigglers arrived at my home in two tiny vials, each containing only a couple of millilitres of clear, colourless liquid. These few precious drops held the microscopic hookworm larvae which, after being carefully dispensed onto a dressing and placed on my arm, began the synchronised burrowing that would commence the journey which I hoped would ultimately bring me so much relief.
On the second day after my new gut buddies moved in, their ministrations brought significant relief from the nasal congestion that I had had, on and off, for most of my life. The only relief that I had been able to obtain previously had come from taking drugs, but all of these had presented unpleasant side effects, such as the migraine headaches that invariably followed the use of steroid nasal sprays.
An itchy rash, which had developed rapidly at the site on my arm where my invisible friends had entered their new home, began to reduce somewhat in intensity on the third day. Tiny bright red dots then became visible within the main central area and the itch continued with a vengeance, though, fortunately, this responded well to generous applications of Benedryl cream.
The bright red dots intensified on the 4th day and became quite raised, remaining till the seventh day, after which the redness, bumpiness and itching all began to subside. By the second week, the rash was flat, fading and no longer itchy.
Towards the end of the second week, my nose became clearer than ever, and the third week brought a distinct sense of perkiness - a quality that had been sadly missing from my life for many years, buried deep beneath the thick blanket of M.E.
Both the clearer nose and the perkiness continued for another three days, until I was eventually plunged back into the much more familiar continuous exhaustion, beginning a see-saw fluctuation in symptoms that would continue for the next few months.
Ups and downs
At the start of week four, I had a day without any headache - a departure that was extremely rare for me - and my nose was so clear that I began to find myself breathing through both nostrils at once. Again, this was something quite new - something I hadn't done much since I was a child.
Such was the depth of exhaustion that I had grown accustomed to, it would normally take an inordinate act of will in order for me to initiate any movement at the start of each new day. However, on the fourth day of the fourth week, I woke to find myself raring to go! For the first time in many, many moons, I couldn't wait to get up and greet the day.
As it happened, I was to have visitors that day - something that would usually wipe me out for several days at least, yet, on this occasion, I not only survived the visit unscathed, but actually had moments during the day that brought back distant memories of what it felt like to be well.
I began the next day by celebrating a distinctly less severe level of exhaustion than I would have expected to experience after a visit, but, then, I noticed a change in my bowel habit. My normal, single daily defecation was replaced by several smaller ones, and the warning sensations before these were more like those I associate with impending diarrhoea.
This gastrointestinal sea change continued with a sudden increase in gas production, and was accompanied by periods of queasiness and even a couple of unexpected spells of sweating.
In spite of having Crohn's disease and, over time, developing strictures that have required surgery, I had been spared the worst gastrointestinal symptoms, so these new digestive developments were obviously due to the presence of my little friends.
The diarrhoea began at the end of week four, accompanied by nausea, more gas and sweats - no doubt all due to my body's attempt to rid itself of what it perceived to be 'invaders'. But, undaunted by the onslaught against them, my already highly treasured companions continued their ministrations and, at the start of week five, delivered another headache-free day.
One of several weird symptoms that have manifested as part of my experience of M.E. is poor temperature control, and this had been a problem for me for many years. During this time, I had to carefully control the temperature of my environment in order to remain comfortable, and, in spite of installing numerous thermostatic heating controls, it had still been necessary to resort to frequent adjustments to clothing during the day, and to bed clothes at night, in order to maintain comfort.
Half way through week five, I began to realise that I was able to tolerate a slightly lower ambient temperature, and found that I could keep the temperature in both my lounge and bedroom half a degree Celsius lower than I would have needed previously - an insignificant change for a healthy person, but a major improvement for me. And whereas, previously, it would have taken me over an hour to cool down sufficiently after a shower to be able to put my usual clothes back on, I was now able to get fully dressed less than half an hour after showering.
Having been unable to eat normal food for many years, it was fortunate that, during most of this time, I was not really interested in normal food. I could inhale the aroma of other people's cooking, but not feel any desire to eat what was being cooked. Now, at almost the sixth week since inoculation, I found myself suddenly taking an interest in any cooking smells that assailed my nostrils, and I began to have yearnings to eat whatever foods were being prepared - my first experience of real hunger in years.
Then, just as I was beginning to adjust my thinking towards the possibility of maybe trying some normal food again, I began to get stronger abdominal cramps and more diarrhoea as week six began.
From then on, diarrhoea, gut ache, nausea and intestinal rumblings began to be the norm on about three days out of every seven, interrupted only by occasional constipation, and accompanied by increased fatigue. The latter, however, was not so much my usual ‘weary-but-wired’ fatigue as an almost pleasant, very relaxed, languorous state, and I was actually feeling quite perky again in spite of this. And my headaches were also now significantly less severe than hitherto, so there was plenty to feel grateful for while sitting on the loo!
Early in week six, I began to feel pleasurably better than I had for a very long time, with a new buoyancy and optimism. I also realised that the eczema in my ears, which used to itch more or less constantly, unless regularly creamed, was now somewhat less itchy than it had been for many years, having been improving gradually for the previous couple of weeks.
During week seven, it dawned on me that I was no longer being woken during the night by the intractable catarrhal throat irritation that had dogged my nights for countless years. What an absolute joy it was, finally to be free of that particular symptom!
Week eight brought another headache-free day and, in week nine, I had a truly remarkable encounter with my osteopath.
He and I had often discussed M.E. while he worked on my back and, having told me that M.E. is a condition that he sees in a significant number of patients, he had explained that he doesn't need a patient to tell him that they have this illness because its presence is clearly revealed by the quality of their tissues.
On this particular occasion, which was prior to me telling him about my hookworm experiment, he said that not only was there a marked improvement in the longstanding problem with over-tight ligaments in my lower back, but the quality of my tissues was now also quite different, and no longer what he would expect to find in someone with M.E!
Then, I was promptly brought back down to earth by several days of feeling quite lousy, as if I had an infection. Yet I recognised this as potentially another positive development, because an absence of infections had long been a feature of my condition. Others around me would drop like ninepins when bugs were going around, but never me! My immune system was apparently in permanent overdrive.
If the sudden light-headedness, weakness, runny nose and sore throat that I now had were indeed the symptoms of an infection, then perhaps this was evidence that my immune system was at last being brought back into line by my accomplished companions.
For the following few weeks, the gut symptoms held sway and I continued to experience frequent nausea, general abdominal discomfort, diarrhoea and increased fatigue. All of this could have been reduced, or even avoided entirely, had I introduced my 35 little wrigglers in stages, rather than all at once.
Even though I was now on a roller coaster that would one day lifted me to the heights and then, the next, plunged me back towards the depths, there was already SO much to be grateful for, and I had absolutely no regrets. I knew that the gastrointestinal upheaval would eventually be over and my carefully chosen companions would re-establish their ancient role and keep their covenant with my species. So I dug in and looked forward to that day.
Not just a dream
I don't normally remember dreams but, eleven weeks and five days after my new 'old friends' moved in, I woke suddenly in the night with an extremely vivid recollection of a dream.
I was in an oriental take-away (not my usual haunt, of course!) trying to decide what, if anything, I could safely eat, when I became aware of someone telling me that I could have rice, meat and vegetables.
Could this, I wondered, be a message from my little hookies that they had subdued my immune system sufficiently for me to resume eating these normal foods?
Bizarre though the idea might be, this dream did appear at just the time when allergies typically begin to respond, so, over the next few days, I began, very gingerly at first, to try a little chicken and, as that was OK, some rice, and then potato. That I coped with all of this without any adverse reaction was utterly amazing after so many years of overwhelming food allergy and food intolerance.
As I experimented, I found a few foods that brought on some of the old symptoms, although not so much the abdominal pain, which had been the worst feature of my reactions to food, and I eventually established a list of foods that I could tolerate, including a good selection of proteins (white fish, goat's milk products and eggs); starches (rice, potatoes, buckwheat and polenta); root vegetables (carrot, parsnip and sweet potato) and several fruits (apple, pear, peach and raspberries). And chocolate, which I just HAD to try and, to my delight, found I could also now tolerate!
From week 13 onwards, I began to feel generally rather good and, by 18 weeks, my boon companions were treating me to meals consisting of gradually increasing portions of a variety of normal foods, along with a correspondingly reduced quantity of my formula feed. At week 20, I counted 45 foods that I could tolerate and, by week 24, I was meeting half my nutritional needs with normal food.
At week 26, I had my first meal in 16 years without any of the special feed, and, the following week, had three entirely normal meals in a row, although this revealed that, while I was able to tolerate the food, my gut was not coping as well as it might with the additional bulk, having only had to deal with a highly refined, low-residue diet for so many years.
So much to celebrate!
The diarrhoea, which had continued as an intermittent backdrop to all the other developments, finally petered out at week 24, at which point I calculated that I had had a total of 47 days of diarrhoea during 19 weeks. As this was the only major 'side effect' I had experienced, it seemed a very small price to pay when viewed alongside all the benefits that were now evident.
As well as the really quite astonishing fact that, after such a short space of time, I was now able to eat a sufficiently large range of foods to be able to enjoy what was beginning to look like a normal diet, there had also been several other improvements, as a result of the considerable control that my resident technicians were exerting over my longtime errant immune system.
As I took stock of the events of these momentous months and reviewed the detailed diary I had kept, it became clear that, during the time between starting to eat normal foods again and finally waving goodbye to the diarrhoea, several additional aspects of my health had gradually been improving, in many cases imperceptibly.
I had recently felt able to trim the small hedge at the front of my house - something I had had to get others to do for me for such a long time - and, although exhausted afterwards, I didn't need several days in bed to recover, as I would have done in the past. Admittedly, I was weak and wobbly the next day, but I felt remarkably well at the same time, and exhilarated that I had achieved so much.
Whereas exhaustion had previously encompassed and pervaded every aspect of my life and been inescapable, it was, by now, far less extensive and much more clearly defined. It would still come and go, but now started from a higher base line, so I actually got to have moments without it, and it was easier to manage with judicious resting.
I found that I no longer needed to go back to bed for a couple of hours in the middle of the day in order to prevent myself from sinking into extreme exhaustion, and a brief rest in a chair was now all that was required to recharge my battery. Perhaps this was related to the positive changes in my tissues detected by the osteopath, and which he has since confirmed are continuing, towards normality.
After years without a single headache-free day, I was now enjoying periods of up to nine days in a row without this affliction, in addition to the greatly improved temperature control, and the generally much clearer nose.
Even the Restless Legs Syndrome that would often interrupt my rest, meditation and sleep, had ceased to be a problem, and the excruciating itches that would frequently develop on my hands, feet and back without any obvious sign on my skin, and which, in spite of treatment, would persist for two or three days, had almost disappeared.
There were still fluctuation in my health, still foods that I couldn't yet eat, and the M.E. was still evident, although improved, but it was also still quite early in the long process of readjustment between my new companions and my immune system.
Based on the available information, I didn't expect a final equilibrium to be reached until my helminthic helpers and I had been together for approaching a year, and the experience of the few others who had trodden this path before me suggested that the beneficial changes could even continue to accrue beyond that point. Obviously, the magnitude of any additional benefits would gradually reduce as time passed, but it was clearly not unrealistic to hope for yet further improvement.
My situation at this point had become very similar to what it had been 20 years previously, when I had been forced to take very early retirement due to the M.E. and had already lost a number of foods from my diet as a result of the encroaching food allergy and intolerance. Now, however, thanks to just 35 tiny worms, I was moving in the opposite direction - a truly incredible result!
One of the developments that I consider most significant was my regained tolerance for herbs and food supplements. After having been unable to tolerate any supplements for a number of years, I was already reintroducing several, and looking forward to once again being able to use food-derived 'medicines' to treat any illnesses that I might develop in the future. I hoped that I would also be able to more effectively treat whatever degree of M.E. I might be left with when my wonderful companions had done as much as they could to restore my health.
Looking back eight months, to when I decided to take the plunge and acquire some health-promoting helpmates, I remember feeling a surprisingly strong sense of urgency that drove me to make the final decision quite quickly, in spite of the cost involved.
I am so pleased that I responded positively to this urgent prompting, because the particular hypoallergenic feed that was the only form of food I could tolerate for several years, had recently been discontinued, and I was coming to the end of my remaining stock of this lifeline.
Had I not decided to employ a team of time-served technicians to tinker continuously with my immune system, there would eventually have been no food left that I could eat, and my survival would clearly have been in doubt. As things had turned out, however, I could now look forward to the future with considerable confidence and optimism.
(By John Scott, November 2009. Originally published on the Foods Matter website.)
Seventeen month review
Seventeen months after I acquired a small team of tiny hookworms to keep my errant immune system in check, I am still 'over the moon' with the results - very much enjoying having more energy and being able to eat many normal foods again.
Although my food sensitivity had become global by the time I got the worms, the range of foods that I can eat has continued to increase since getting them. I was able to begin eating normal food again at 11 weeks post inoculation with the first 35 hookworms. At 20 weeks, I could tolerate 45 foods, and, at 30 weeks, about 63 foods. I then added a further 10 hookworms at 53 weeks, and yet another 10 at 67 weeks. At 70 weeks, there are only a few foods left that I can’t tolerate.
I am eating a full range of foods again and really loving it. As I type this update, I am munching my way through a turkey salad containing cucumber, parsley, lettuce, fresh garden peas, spring onions and home-grown mung bean sprouts, all doused in olive oil. I'm also drinking a pint of fresh raw veg juice (carrot, parsnip, beetroot, broccoli and kale) - not bad for a guy who hasn't been able to eat any fruit or veg for about 20 years!
In addition to the miraculous reversal of the food intolerance, my 'true', IgE-mediated allergies have all disappeared as well, so that I can now spend all day outdoors, when the pollen was at its height, without even the slightest hint of a sniffle. The rhinitis has completely gone and the sinusitis is gradually diminishing, along with the eczema. The antihistamine/nasal spray routine has become a thing of the past!
My headaches are hugely reduced, both in frequency and severity, and my dodgy temperature control has completely normalised. I am now actually enjoying the hot weather for the first time in many years. I had had to have air conditioning installed years previously because I wasn't able to cope with the heat in summer, but I’ve rarely had it on in months at this point.
Although the results have been truly spectacular, the remedy was of course not really a 'remedy' at all, in the normal sense of the word, but simply a return to sharing life with a few symbiotic microorganisms that mankind has travelled with for many millions of years, until Western man summarily dismissed them when he adopted modern hygienic practices.
The 'illness' that I’ve had for the previous thirty years (with so many manifestation that doctors couldn't get their heads around them, and preferred to dismiss them all as psychosomatic) was probably not really 'allergies', food intolerance', 'MCS', 'migraine', 'M.E.' or 'Crohn's disease', etc., at all, but simply Helminth Deficiency Syndrome - an as yet undiscovered reality on a par with vitamin deficiency.
On the strength of my experience thus far, others with similar problems have begun to take the plunge and get 'hooked' themselves. A very good friend who has the same extreme degree of food intolerance, as well as MS, has also inoculated with hookworms and, after a rather rough ride with the temporary gastric symptoms that occur in the first few weeks after inoculation with this species, she was already feeling better than she had for many years and had already been able to resume eating normal foods again. 
What amazed me, when she and I compared notes, was how uncannily similar her progress had been to my own, with milestones being passed in the same sequence, and at very close to the same timing.
I began to experience a sense of well-being for the first time at about 30 days post inoculation with hookworms, my friend at 43 days. I began suddenly and unexpectedly to take an interest in cooking smells for the first time in many years at day 39, and she observed herself responding unusually positively to seeing food on the TV at 47 days. I experienced real hunger for the first time at 43 days, and she reported feeling the first pangs of hunger at 60 days - and described herself as 'ravenous'! It’s the same pattern, just delayed by a couple of weeks in her case, and she later also said that her temperature control has been a lot better since week 6, and that she no longer needs as much sleep, which, again, mirrors my own experience.
Eleven year review
At eleven years since all this began, I continue to maintain my hookworm colony and I’m still enjoying the benefits reported above. However, now that I’ve reached my eighth decade of life, age is beginning to take a toll. I’m no longer as sprightly as I once was, and the acuity of my senses is diminishing. Nevertheless, I can still eat everything I want to, and my Crohn’s disease, allergies, sinusitis, chemical sensitivity and Restless Legs Syndrome are all still in remission.