Treating lupus and Sjogren's disease with hookworms

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When faced with the diagnosis of a chronic illness, an Allergy NZ member researched her options and decided to try a new experimental therapy. Lyn Jolly shares her findings and personal journey towards better health.

Parasites as a treatment

About eight years ago I was diagnosed with connective tissue (autoimmune) disease. Blood tests indicated lupus (SLE) and my symptoms — dry mouth and eyes, digestive problems, fatigue, and muscle aches and pains — indicated Sjogrens. This is an autoimmune problem associated with the body’s mucous membrane system being attacked.

In recent years I have consulted with two rheumatologists, a gastroenterologist and an endocrinologist, but they could only offer me the standard treatments of steroids. There seemed to be no long term solution available that was not fraught with side effects.

This left me with trying to manage the symptoms, and how best to prepare myself for what looked to be a life-long, chronic illness that was likely to be progressive.

Environmental changes

In early 2014 a friend alerted me to a book The Epidemic of Absence by Moises Velasquez-Manoff — a journalist and immune disorder sufferer. In it, he details the changes in our environment in the last 500 years that the immune system is not prepared for.

He describes the hygiene hypothesis and argues that our modern obsession with eradicating germs has backfired into an explosion of disease, specifically all the new diseases that have replaced infections to undermine our health. The modern immune system is stymied by the sudden absence of its customary microbial targets. With nothing constructive to do, it has developed numerous hypersensitivities, and turned on food and the body’s own systems. Hay fever is a modern disease, and house dust, cats, and peanuts are now common problems for children. Modern living has created a mis-match of the environment and what our body has evolved to respond to.

In the last 20 years a number of leading researchers have studied the immune system and the impact on the changes in our environment. One of the contributors they have identified to the current rates of immune disorders is biome depletion — the reduction in the diversity and some components of our gut biome. (Other factors include a reduction in our exposure to vitamin D, modern eating habits, our levels of chronic stress and a sedentary lifestyle).

Biome reconstitution

As a solution, Velasquez-Manoff describes helminth therapy, which is the deliberate infection of human patients with certain kinds of parasites, in low and controlled doses. Parasites have co-evolved with humans over millennia resulting in highly adapted interactions between the parasites and host immune systems to the point of co-dependency.

More recent and ongoing attention related to this experimental therapy has been under the umbrella theory of biome reconstitution. This is the re-creation and maintenance of the microbiome or the microbiota.

Research into the role that microbiome in the gut might play in the human immune system started in the late 1990s. The human body contains over 10 times more microbial cells than human cells, although the entire microbiome only accounts for about for one to three per cent total body mass, with some weight-estimates ranging as high as 1,400 grams. Eating yoghurt, taking probiotics containing live bacteria are examples of activities that help reconstitution of the biome. Some people drink unpasteurised milk to obtain the live bacteria that it contains. Faecal transplants are now accepted medical treatments for some bowel disorders in many countries including New Zealand. It is being used on an experimental basis for a range of other diseases that are thought to be caused by biome depletion.

Biome supplementation encompasses the idea of adding a wider variety of natural organisms to the ecosystem of the human body.

My personal experience

After extensive reading of what I found to be a fascinating topic, I printed off a few research papers and gave them to my GP and family members who had a medical research background. I was fortunate to have support from them, and was encouraged to give it a go.

While it is not accepted medical treatment in any country, it is estimated that there are between 6,000 and 8,000 people on helminth treatment throughout the world, and knowledge is freely shared in online forums.

My first dose of hookworm was in August 2014, and with three subsequent doses, I now have a full complement of about 150 on board. The dosage is quite individual but gradually building up to this amount is a common approach. Improvements often start at approximately five months into the treatment, and this has been my experience as well.

The improvement in my health in the last nine months has been dramatic. The chronic fatigue and the brain fog is resolved. My temperature is now stable. My blood tests show the leukopenia (low white blood cell count) have resolved.

There has been a marked improvement in my dry mouth. My dentist has said my saliva is not too bad now, and asked me what I was taking! My dry eye is almost resolved.

My digestive problems are significantly reduced and I am much less impacted by gluten. My aches and pains are now variable, which is an improvement on the situation before when they were progressive.

The online forum advises that improvements are likely to continue for two years and even into the third year, so I am hopeful that the residual symptoms continue to reduce. My plans for travel are now back on track!

It is important to emphasise that this is experimental therapy and people need to fully research it, understand the risks and keep their doctor informed if they wish to try it.

Comment from Professor Graham Le Gros at the Malaghan Institute

Our immunology research seeks to understand the parasite-induced cellular and molecular pathways that act to keep us in good health, and to find ways to stimulate the immune system when we are not in good health. There is interesting evidence that parasite infections can be either helpful or harmful depending on the situation and disease. We seek to understand the reasons why, so a safe and effective treatment can be devised that would not involve the parasites themselves, but perhaps the products they make or lookalike compounds that trigger the health-beneficial pathways. At present our investigations are solely at the preclinical stage; we do not treat patients or carry out research on people. Our objective is to seek evidence of safe, replicable outcomes, across populations.

Lyn Jolly lives in Palmerston North with her husband Pete. Lyn works at Massey University and in her spare time loves reading, travelling and gardening. She can be contacted for further information about helminth therapy on ljolly$vodafone.co.nz (change $ to @).

Post script

Following the appearance of this piece in Allergy Today Magazine (issue 156, Autumn 2016), Lyn's story was picked up by Stuff NZ, which subsequently published a more expansive article by Adam Dudding.

• I've got parasitic worms living inside me, and it's great. (Web.archive link - can be slow!)

Lyn is also featured in the following video, from 5.00 minutes in.

• Could a dose of worms be the answer to treating incurable autoimmune diseases?

A helminth that lives in the small intestine. Necator americanus (NA) is the only hookworm species used in helminthic therapy. Its microscopic larvae are applied periodically to the skin.

An organism that lives in or on another organism (its host) and benefits at the host’s expense. (The organisms used in helminthic therapy are, strictly speaking, not parasites, but mutualists, because they have a mutually beneficial symbiotic relationship with their hosts.)

An alternative term for helminthic therapy taken from a seminal publication by Prof William Parker [1] and used as the title of a citizen science Facebook group for discussion of issues relating to the epidemic of inflammatory and autoimmune diseases afflicting humans in the late 20th and 21st centuries. [2]

The reintroduction to the digestive tract of a controlled number of specially domesticated, mutualistic helminths (intestinal worms) in the form of microscopic eggs or larvae to reconstitute a depleted biome to treat or prevent chronic inflammation, autoimmune disease and other immune-related disorders, including allergy.

An organism that lives in or on another organism (its host) and benefits at the host’s expense. (The organisms used in helminthic therapy are, strictly speaking, not parasites, but mutualists, because they have a mutually beneficial symbiotic relationship with their hosts.)

An alternative term for helminthic therapy taken from a seminal publication by Prof William Parker [3] and used as the title of a citizen science Facebook group for discussion of issues relating to the epidemic of inflammatory and autoimmune diseases afflicting humans in the late 20th and 21st centuries. [4]

All the microorganisms living in and on the body, or the genome of these microorganisms. "Microbiota" refers to the specific population of microorganisms living in a certain part of the body, such as the gut. These two terms are often used interchangeably.

The specific population of microorganisms living in a certain part of the body, such as the gut. "Microbiome" refers to all the microorganisms living in and on the body, or the genome of these microorganisms. These two terms are often used interchangeably.

Microorganisms that are believed to provide health benefits when consumed.

An intestinal worm which grows large enough to be seen with the naked eye when mature but which is microscopic when administered in helminthic therapy. Wikipedia:Helminths

A helminth that lives in the small intestine. Necator americanus (NA) is the only hookworm species used in helminthic therapy. Its microscopic larvae are applied periodically to the skin.

An organism that lives in or on another organism (its host) and benefits at the host’s expense. (The organisms used in helminthic therapy are, strictly speaking, not parasites, but mutualists, because they have a mutually beneficial symbiotic relationship with their hosts.)