In January 2006, Jasper Lawrence was trudging through the trenches of Cameroon's latrines with one goal — to infect himself with parasites. It was an act of desperation. He suffered from an assortment of allergies and seasonal asthma so severe he could no longer play with his children or climb stairs without taking a long rest. Inhalers did him no good, and prednisone, his prescribed oral steroid, put nearly 40 kg onto his slender frame. Something had to give, and traditional medicine offered no relief. It was not a doctor's prescription that led him to Africa's cesspools. It was merely a crazy idea borne from David P. Strachan's 'hygiene hypothesis'1. And it worked.

According to Strachan's theory, so-called modern illnesses, such as allergies, asthma and Crohn's disease, have increased exponentially since industrialization in countries such as the United States because improved sanitation practices made people's body ecology too sterile. Antibiotics, vaccines and purified drinking water have purged the environment of contaminants so effectively that human bodies have rebelled against the lack of parasites with sometimes severe autoimmune responses.

Helminths such as this hookworm have shown preliminary promise in treating MS, but rigorous studies are lacking. Credit: Ingram Publishing/Getty Image

Lawrence's self-administered treatment was so successful that, during autumn 2007, he set up Autoimmune Therapies. For US$3,000, the company will infect a patient with hookworms to treat a slew of autoimmune diseases, including multiple sclerosis (MS). The treatment is called helminthic therapy, after the parasitic worms (helminths) used to infect patients. The research behind this treatment is in its nascent stages; however, Lawrence says that since his own helminthic treatment, his symptoms have not returned. He also claims that of the 30 or so patients he has treated with helminths for MS, all but one have found the treatment effective — and the one patient who did not benefit had failed to comply fully with the protocol. However, no rigorous studies have been done to back up this assertion. Autoimmune Therapies has designed a study to validate the technique's efficacy, and is seeking sponsorship from various MS charities in the United Kingdom.

All those treated by Autoimmune Therapies have one thing in common: like Lawrence, they feel that mainstream medicine has failed them. It is easy to understand why they think that. Conventional treatments for MS are not only extremely expensive, costing tens of thousands of dollars a year, but also have life-threatening side effects. One extreme example is natalizumab, a monoclonal antibody that risks causing a viral infection of the brain called progressive multifocal leukoencephalopathy. There is only a 1 in 2,000 chance that a patient will contract the virus; however, if they do, it usually causes death or severe disability. And there are no guarantees that patients will see results.

Desperate MS sufferers who believe they have exhausted the therapies offered by conventional medicine sometimes look elsewhere for help. They often take their cues from the media, which trumpet each small trial result as a major breakthrough, even in the absence of rigorous scientific testing. These patients often play a dangerous game. New treatments can have unknown side effects, causing more harm than good. And, although the worms that brought Lawrence to Cameroon seem to have only mild side effects, many other unconventional MS treatments carry much greater risks.

Worms and stents

The helminthic therapy that Lawrence advocates is based on the idea that, over the millennia, our immune systems have developed in the context of minor infections, such as hookworms. The worms are thought to use an immunomodulatory mechanism that controls the responses of the immune system. Without this control, the immune system can overreact, perhaps causing autoimmune and allergic diseases such as MS and asthma2. Perhaps the best evidence for this theory in relation to MS came from Jorge Correale of the Raúl Carrea Institute for Neurological Research in Buenos Aires, Argentina. In his studies, most of which were observational, he noted significant decreases in MS symptoms where there was helminth infection2.

It is no surprise that helminthic therapy has prompted discussion among patients, advocates, researchers and physicians. “The research is interesting, but it's preliminary,” says John Fleming, a neurologist at the University of Wisconsin-Madison. “Unless there's a controlled clinical trial, you're not going to get objective evidence as to how it works and what the safety issues are,” he says. “That's the trouble with just giving people helminths wholesale — you have no objective feedback on what's happening.” Fleming is currently conducting clinical trials on helminthic therapy but he does not recommend it to MS patients. Many patients are trumpeting the treatment's effectiveness, however, even though there is considerable uncertainty in the scientific community. Timothy Coetzee, chief research officer of the US National Multiple Sclerosis Society, includes among his responsibilities listening to public demands for alternative treatments, and directing funding towards clinical trials to test their efficacy. He said about helminthic therapy: “My view as a past scientist, as well as head of the society's programmes, is that whenever one sees this kind of vigorous debate over a hypothesis, it points to the need to do additional research.” Under his direction, the society is funding Fleming's research.

Another prominent alternative MS therapy uses mechanical devices rather than worms. The treatment is based on a theory developed by physician Paolo Zamboni of the University of Ferrara in Italy3. It suggests that unusually narrow veins suppress normal blood drainage from the brain and spinal cord, a phenomenon called chronic cerebrospinal venous insufficiency (CCSVI), ultimately leading to MS. Treatment involves using either stents or angioplasty to open up the veins to increase blood flow. The theory was published in 2009 and, thanks partly to the credulous reporting in the media, MS patients started clamouring for treatment. Late in 2009, one patient undergoing CCSVI treatment died from a brain haemorrhage and another required emergency open-heart surgery to repair damage caused by the stent procedure.

Despite the enthusiastic claims of its advocates, there is no conclusive evidence that CCSVI is a real phenomenon. “The jury is still out on its efficacy,” says Coetzee. “Robust research is underway to figure out standards for evaluating CCSVI and its potential role. And the only way to determine the true efficacy of a treatment for CCSVI is with controlled clinical trials.”

Other MS researchers are less equivocal. The possibility that families will “pool all of their precious resources to pay tens of thousands of dollars” for questionable treatments puts the burden on the medical community to police itself better, says neurologist Dennis Bourdette, director of the Multiple Sclerosis and Neuroimmunology Center at Oregon Health & Science University. Bourdette says that physicians promoting such unproven MS therapies are “criminal, unethical and represent the worst of the medical practice”.

Since antiquity, apitherapy — the medical use of honeybee products — has been used to treat a wide variety of maladies from arthritis to MS; however, such treatments have not survived the rigours of evidence-based medicine and are therefore considered anecdotal in nature. Subjecting MS patients to bee stings, a homeopathic therapy claimed to relieve pain, loss of coordination and muscle weakness, was shown to be ineffective in several US and Canadian studies — although the risk of anaphylactic shock is real enough.

Another example is chelation, in which patients are injected with a crystalline acid that binds to heavy metals in the bloodstream before being excreted by the kidneys. Chelation is used to treat lead poisoning and to remove excess iron following blood transfusions. But it can be dangerous, causing anaemia if there is no excess of heavy metals. The National Multiple Sclerosis Society has described chelation as painful, ineffective and dangerous4. Other therapies that focus more on lifestyle, such as tai chi, yoga and a low-fat diet, seem to be harmless; tai chi and yoga have been clinically shown to improve balance, and all three are thought to lower blood pressure and improve cardiovascular health, but their effects on MS remain unproven. There are also suggestions that vitamin D shows some promise in the treatment of MS. In a 10-year, non-placebo-controlled study, taking vitamin D supplements was found to lower the chance of women developing MS by 40%; however, evidence to back this up remains elusive.

Looking for evidence

With so few conventional treatments and a host of alternative therapies, it is important for both medical professionals and patients to approach therapy with healthy scepticism and a large dose of common sense. Fleming says he receives many requests for helminthic therapy from his patients. He tells them: “Always stay with your own neurologist, and there are many treatments in the pipeline. You shouldn't do something based merely on hope. It could be dangerous.” The National Multiple Sclerosis Society recommends that patients consider five questions before pursuing alternative therapies. What does the treatment involve? How and why is it supposed to work? How effective is it? What are the risks? And how much does it cost? (see 'Assessing the alternatives').

Table 1 Assessing the alternatives
Full size table

Despite the shortage of treatment options for MS, an enormous amount of research is going into new drugs, including alternative therapies. Research on helminthic therapy is taking place around the world, and several laboratories see potential in isolating the molecules responsible for autoimmune suppression. But there are no guarantees at this point for a timeline or a treatment. The National Multiple Sclerosis Society is also investigating various options. Coetzee argues that “any comprehensive research strategy will need to explore therapies such as CCSVI, helminthic therapy, and vitamin D. At the same time, we're looking for the initiating factors so we can end MS forever.”

Until more is known about MS, patients will remain frustrated by the lack of treatment options. Fleming is sympathetic to the plight of the desperate patient but urges caution. “It takes many, many years, but there's a lot in the pipeline now,” he says. “If you reject the scientific model — the pipeline for finding safe and effective things — then you have chaos.”

But Lawrence thinks we have no time to lose. “It's incredibly frustrating to know that in 20 years there are going to be millions of people who are going to be suffering from these diseases because the treatments haven't been blessed by people with lab coats,” he says. “My attitude is that if you know you are going to be sitting in a wheelchair in 10 years, I think your attitude would be a little different.”

It is no surprise that patients turn to unproven solutions when they have nowhere else to go. It is the duty of the medical and scientific community to investigate all the viable options, to give patients advice based on sound and safe science, and to avoid raising unrealistic expectations. Without careful guidance, patients might come out of these alternative treatments in worse health, both physically and financially.