Wriggling out of food intolerance
John Scott describes how a dose of worms has dramatically improved his CFS. November 2009
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 hookworm, 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., a subgroup of Chronic Fatigue Syndrome characterised by inordinately exaggerated exhaustion following any activity, either physical or mental.
I was becoming impatient, not least because the only food that I was then able to tolerate was a solitary hypoallergenic formula feed 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 food intolerance.
Even if this aspect of my health proved not to be amenable to the help of a group of helminthic 'old friends', there is considerable evidence to suggest 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.
I was not well enough to travel to the tropics to collect a worm infection the natural way, by walking barefoot in open-air latrines, besides which, to do this might result in me picking up an altogether less friendly parasite, perhaps even with a nasty bacterial infection riding piggyback.
What I really needed was an easily accessible, hygienic source that would deliver worms direct to my home. At the time, I knew of only one such supplier - Ovamed, who sell pig whipworm eggs, but at a horrendously high price that put them beyond my reach.
More out of desperation than hope, I turned once more to the internet where, miraculously, I discovered Autoimmune Therapies, who sell Necator americanus, the hookworm used in the Nottingham trials, and at a much more realistic price than Ovamed's porcine product.
Reading the information available on the Autoimmune Therapies website and talking to the company's founder, Jasper Lawrence, I discovered far more about helminthic therapy than I had been able to glean from talking to the researchers who are working with the worms in the clinical trials context.
The latter must, by now, have a mass of clinical data from the trials carried out so far, but these have only looked at the safety aspects of using just ten worms in patients with only a couple of diseases, and the trials have been too short to assess efficacy in even these illnesses. In contrast, Autoimmune Therapies have provided realistic numbers of worms to scores of people with a growing range of autoimmune conditions, as a result of which, Jasper Lawrence and his colleagues have acquired a unique understanding of the therapeutic potential and use of hookworm.
After talking to these guys, it became clear that ten worms - the number I had received on the Hookworms for Crohn's Disease trial, and would likely have been offered again, if I were to obtain them from Nottingham - would not be enough to deal effectively with all of my problems, so I opted to purchase 35 Necator larvae from them.
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 commenced the journey that 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 fading, flat, 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 is something quite new - something I haven'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 defaecation 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 have been spared the worst gasro-intestinal symptoms, so these new digestive developments were obviously due to the presence of my new 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 the many weird symptoms that have manifested as part of my experience of M.E. is poor temperature control, and this has been a problem for me for many years, during which time I have had to carefully control the temperature of my environment in order to remain comfortable. In spite of installing numerous thermostatic heating controls, it has 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 to a healthy person, but a major improvement for me. And whereas, previously, it would take 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, although this 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. 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, and I 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 years, having been improving gradually for the previous couple of weeks.
During week seven, it dawned on me that I was also 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 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 which I could have reduced or even avoided entirely, had I introduced my 35 little wrigglers in stages, rather than all at once, but there is evidence that a more rapid introduction promotes a greater therapeutic dividend in the long term, so I had decided to go for broke.
Even though I was now on a roller coaster that 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 my immune system was now sufficiently subdued for me to resume eating these normal foods?
Bizarre though the idea may 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 - all without any adverse reaction, which was utterly amazing after so many years of overwhelming food allergy and 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 many other improvements, as a result of the considerable control that my resident technicians were clearly 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, almost imperceptibly.
I had recently felt able to trim the small hedge at the front of my house - something I have 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 am 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 Leg Syndrome that would often interrupt my rest, meditation and sleep, has 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, in spite of treatment, persist for two to three days, have almost disappeared.
There is still fluctuation in my health; there may still be foods that I can't yet eat; and the M.E. is still evident, although improved, but it is still quite early in the long process of readjustment between my new companions and my own body.
Based on the available information, I don't expect a final equilibrium to be reached until my helminthic helpers and I have been together for approaching a year, and the experience of the few others who have trodden this path before me suggests that the beneficial changes could even continue to accrue beyond this point. Obviously, the magnitude of any additional benefits will gradually reduce as time passes, but it is clearly not unrealistic to hope for yet further improvement.
My situation now is very similar to what it was 20 years ago, when I was 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. Today, however, thanks to just 35 tiny worms, I'm moving in the opposite direction - a truly incredible result!
One of the developments that I consider most significant is my regained tolerance for herbs and food supplements. After having been unable to tolerate any supplements for a number of years, I have now already reintroduced several, and am looking forward to once again being able to use food-derived 'medicines' to treat any illnesses that I might develop in the future. I should also be able to more effectively treat whatever degree of M.E. I might be left with when my wonderful companions have done as much as they can 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 now SO glad that I responded positively to this urgent prompting, because the particular hypoallergenic feed, which has been the only form of food that I could tolerate for several years, has recently been discontinued, and I am currently 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 have turned out, however, I can now look forward to the future with considerable confidence and optimism.
First Published in November 2009