A new drug free way of treating Crohn's disease?
I am the mother of a sixteen year old boy, Sam, who was diagnosed as having Crohn's Disease in October 2008. He had both an endoscopy and colonoscopy and other tests. Ulcers were discovered throughout his digestive tract in his stomach, ileum and colon. The pathology was not that the findings were "indicative of Crohn's disease" or "suggestive of Crohn's disease". No - the pathology was unusually decisive in my son's case - he has Crohn's disease.
Through a combination of inspiration, my knowledge of my son, and extensive research on the internet, I have been able to get Sam into a drug free remission from Crohn's. The title of the website is a misnomer - he is not "cured" - he will always have Crohn's disease. Nevertheless, I am optimistic that the symptoms will not recur provide he follows this one rule - he should avoid all lactose in his diet.
The ScienceIn my previous life, I worked as a statistician. I like to think that I make hypotheses and draw conclusions based on scientific fact, rather than talking unscientific and unproven "rubbish" because I believe something to be true. I also know that a sample size of one (i.e. my son) is far too small a sample size on which to base scientifically valid findings.
Nevertheless, through the research that I have done on the internet, together with my own (alternative) conclusions which are compatible with the results of research studies that already exists, I am hoping to show that there is a need for further research into this subject.
Research that I believe needs to be carried out will be highlighted. I am also hopeful to receive anecdotal tales (albeit unscientific) from other sufferers of Crohn's who follow my suggestions, to see how they get on. I have no medical training. I have not worked with people who have Crohn's disease. I am not infallible. If you believe that I have written something on this website that is technically incorrect, then challenge me. I am happy to be challenged! Only by questioning the norm can we hope to learn and grow.
The only thing I ask is that you do not dismiss what I have to say because of your own preconceptions.
I base my hyphotheses and conclusions on evidence, data and scientific fact.
Challenging Current BeliefsThe current thinking with Crohn's disease is that it is is an autoimmune disease, caused by the immune system attacking the gastrointestinal tract and so producing inflammation. I am hoping to demonstrate to you that Crohn's disease, at least for some of its sufferers, is not an autoimmune disease, but instead the immune system is attacking bacteria that enter the digestive system. These bacteria (unproven, research required, only a hypothesis at present) feed on lactose. The bacteria can be found in pasteurised milk and cause Johne's disease in ruminants.
It is now known that the helicobacter pyloris bacteria can cause stomach ulcers, so it is not an unreasonable hypothesis that bacteria can also cause Crohn's disease in certain individuals. I would also add the caveat that in people who suffer from Crohn's, there is also a genetic factor that makes them more susceptible to the bacteria. I am not for one minute suggesting that Crohn's is an infectious disease that could be passed from person to person.
Mycobacterium Avium Paratuberculosis (MAP)
The bacteria that may be responsible for Crohn's disease is called MAP, an abbreviation of Mycobacterium avium paratuberculosis. This bacteria is found in the gut of 100% of people who have Crohn's disease (see reference below - I have not made this up!). It is not usually found in the gut of people who do not have Crohn's disease. The bacteria can be found in pasteurised milk and causes Johne's disease in cattle. Johne's disease has striking similarities to Crohn's disease
In the laboratory of molecular research at the VA Medical Center in the Bronx, Robert Greenstein, M.D., director, and his researchers have consistently isolated RNA belonging to Mycobacterium avium paratuberculosis (MAP) from 100% of patients with Crohn's disease, but this microorganism is not isolated from patients used as negative controls. If MAP is indeed a causative agent in Crohn's disease, this changes the entire IBD paradigm. These findings, in Greenstein's words, "change the I in IBD from 'inflammatory' to 'infectious.'"
Existing Research and Alternative Conclusions
Studies have been carried out investigating whether antibiotics that kill the MAP bacteria are an effective treatment for Crohn's.
One such study, Antibiotic treatment of Crohn's disease: results of a multicentre, double blind, randomized, placebo-controlled trial with rifaximin, concluded that "Rifaximin 800 mg b.d. was superior to placebo in inducing clinical remission of active Crohn's disease, although this difference was not statistically significant".
Another, Two-year combination antibiotic therapy with clarithromycin, rifabutin, and clofazimine for Crohn's disease, concluded that,"Using combination antibiotic therapy with clarithromycin, rifabutin, and clofazimine for up to 2 years, we did not find evidence of a sustained benefit. This finding does not support a significant role for Mycobacterium avium subspecies paratuberculosis in the pathogenesis of Crohn's disease in the majority of patients. Short-term improvement was seen when this combination was added to corticosteroids, most likely because of nonspecific antibacterial effects."
The BMJ themselves have concluded that "At present there is little evidence of benefit from antibiotics (including antimycobacterial therapy), either as a substitute for or as an adjunct to corticosteroids or mesalazine, for inducing remission in ileal or colonic Crohn's disease."
Someone is missing the point!
Fanfare of trumpets please, this is my bit!
Here are some facts:
- Researchers have consistently isolated RNA belonging to Mycobacterium avium paratuberculosis (MAP) from 100% of patients with Crohn's disease
- People who do not have Crohn's disease test negative for MAP (or are seven times less likely to test positive for MAP according to a different study carried out by the American Academy of Microbiology)
- Milk (perhaps containing the MAP bacteria) was not excluded from the diet of the study participants - so they could have been continually reinfected with the MAP bacteria.
- Bacteria are very good at developing immunity to antibiotics
So, my alternative conclusion would be that the MAP antibiotics had a short term beneficial effect because they worked for a short time. However, as the study participants continued to consume products containing milk/lactose, the MAP bacteria were being continually reintroduced and ultimately they developed an immunity to the antibiotics.
Further Research Required
A study could be be carried out where there are three treated groups. In the first treated group, patients are given an initial dose of antibiotics to kill the MAP bacteria and products containing milk should be excluded for the entirety of the study. A second treated group should be treated by exclusion of milk products alone. A third treated group should be treated by exclusion of lactose alone. Obviously there should also be a control group.
I am not convinced there would be a statistically significant difference between the three treated groups, although it would be interesting to know. I would hypothesise that patients would be in remission longer in all the treated groups than in the control. Sam is symptom free without antibotic treatment.
Why Lactose and not Milk?
Again, this is an unproven hypothesis based on my experience with Sam. Sam has been symptom free since removing lactose from his diet. However, he still enjoys milk, cheese and yoghurts from Lactofree (no, they are not paying me. Perhaps they should!).
It is worth noting that in the beginning Sam did have a couple of minor relapses, characterised by liquid poo. In each occurrence, we could trace him mistakenly eating something that contained lactose - in one case it was a biscuit, in another, it was pepites of chocolate in a "healthy" nut bar.I have therefore hypothesised that the MAP bacteria survive by eating lactose. When their food source is removed, they die. In a more permanent way, perhaps, than treating them with antibiotics. Lactose is a sugar, so it's not unreasonable to suggest it as a food source.
However, I have no evidence for this, other than my experience with Sam, which I realise is flawed as one cannot draw conclusions from a sample size of one. Research to prove or disprove my theory would be great!