The Light at the End of the Tunnel
by Julie Doyle, Human Para Executive Director
On my way home from the 2017 MAP Conference in Philadelphia, I had to drive through a tunnel which ran underneath a mountain. Tunnels have always made me a little nervous due the confinement, but I relaxed as I saw daylight coming from a small hole on the other side. As I focused on getting to the light, it occurred to me that this tunnel was a great representation of my journey with Crohn’s disease. For so many years I moved forward through life in the confinement of disease. Darkness was my companion, and I felt alone and different from those around me. But as my body healed on antibiotic therapy, I came back into the light of living a full and joyful life free of chronic disease.
This conference was a gathering of MAP researchers from around the world. The excitement was palpable, as new information was shared and partnerships were formed. The body of collective work that this group of researcher put forth on MAP science was astounding, and a bit overwhelming. I wanted to stop time and meditate on the implication of the information that was zinging around. Plans to move the science forward solidified by the end, and I am optimistic that amazing things will spring from this meeting.
For those who missed them, these are the Tweets of information shared in the presentations I thought you would find particularly interesting. We’re working to process and upload the presentations and interviews as fast as we can.
Dr. Collins: MAP is not free living nor ubiquitous in the environment. It needs to be in a host.
Dr. Collins: 91% of US dairy herds likely now harbor MAP.
Dr. Collins: 40% of North American zoos have had a case of paratuberculosis, and petting zoos are a particular risk to kids.
Dr. Vivek Kapur: Some MAP proteins are detected by month 2 in animals, but curiously low or absent in clinical disease stage.
Dr. Marcel Behr: In situ hybridization and PCR for MAP IS900 and other IS series give false positives.
Dr. Adrienne McNees of Baylor: 70% CD patients MAP positive, 49% controls are. IS900 and culture testing.
Dr. McNees: High percentage of MAP positive controls could confirm widespread MAP dissemination.
John Aitken: Understanding Crohn’s disease is not rocket science – it is far more complex.
John Aitken: Cell wall peptidoglycans produced by human MAP cause inflammation and are not recognized by patients with the NOD2 mutation.
John Aitken: 15 CD patients, 13 controls. All 15 CD positive for hMAP culture, 12 positive for PCR. 2/13 controls positive.
John Aitken: IS900 MAP series is not in all human MAP isolates. DNA is hard to extract from dormant MAP.
John Aitken: A method to destroy biofilm in humans is very important. MAP produces daughter cells in a biofilm matrix.
John Aitken: Sadly, I think we have an epidemic. MAP in humans is not challenged by many antibiotics.
Dr. Horacio Bach: CD patients have a higher response to MAP antigen PtpA than controls. PtpA decreased after AZA and 5ASA.
Dr. Tim Bull: Humans are not the host MAP wants to be in – MAP wants to be in cattle.
Dr. Tim Bull: MAP doesn’t like dying. It goes dormant after freezing. MAP is sensitive to Vanco, and at least goes dormant.
Dr. Tim Bull: In culture, high iron and zinc availability is essential for MAP growth.
Dr. Tim Bull: If human MAP likes dormancy, is that due to gene expression or genetic differences? 34 hMAP strains reported.
Dr. Tim Bull: Human MAP strains may be able to “see” humans differently than cattle due to dormancy/other genetic regions.
Dr. Tim Bull: Vitamin K can reactivate dormant MAP.
Dr. Tim Bull: Adding 5ASA, Vit K and TiKa (a peptide in culture media) to MAP cultures brings MAP out of dormancy.
Dr. William Chamberlin: “Do antibiotics have a positive effect on Crohn’s Disease? Absolutely.”
Dr. William Chamberlin: A more effective approach to CD is AMAT plus an immunomodulator to stimulate innate immunity.
Dr. Thomas Borody: Clofazimine will hone in on the organ that is most infected and will stain it blue/purple.
The FDA began a named patient non-TB mycobacteria program for clofazimine in January. Easier access!
Dr. Todd Kuenstner: Purpose of the UVBI therapy in CD is that in the past it’s been effective in Hep C and other infections.
Dr. Harry Oken: A low DHEA value may be. marker indicative of CD. Night sweats may also be a little known symptom of CD.
Dr. Ellen Pierce: The idea that anencephaly may have an infectious cause is not outlandish & may explain the Yakima cluster.
Dr. David Graham: Increase of CD in the country of Bahrain. Incidence is about 1/200 people. Maybe due to dairy from AUS/NZ.
Dr. David Graham: Bahrain MAP testing of CD patients was 4 samples over 3-4 weeks. If 1 test, 76% +. If all 4, 100% positive.
Dr. Irene Grant: Best way to test milk for MAP is PMS phage assay & culture. 2017 study bulk tank milk 59% positive for MAP.
Dr. Irene Grant: 2014 retail infant formula study from 18 countries found MAP by PMS phage assay in 42.4% of samples.
Prof. Thomas Borody: We don’t use only two anti MAP antibiotics because bugs develop resistance.
Prof. Thomas Borody: Crohn’s disease located in the small bowel is not a reaction to your normal flora. It’s an infection.
Prof. Tom Borody: Future therapies in Crohn’s 1. AMAT plus AntiTNF followed by 2. Repeated FMTs and possibly 3. Immunization.
Prof. Thomas Borody: Vit D is important. As you raise Vit D level, intracellular pathogens decrease.
Dr. Ira Shafran: New CD treatment is a pyramid of two pancakes w/butter. AMAT on the bottom, biologics on top, butter is surgery.
Dr. Ira Shafran: We actually see rising MAP titers and more symptoms in some patients treated with biologics alone w/o AMAT.
Dr. Ira Kalfus of RedHill Biopharma: All current compounds used to treat Crohn’s disease have some antiMAP activity.
Dr. Robert Greenstein: Crohn’s disease may be the tip of the MAP iceberg.
Dr. Robert Greenstein: The primary action of traditional Crohn’s disease therapies is really against MAP.
Dr. Greenstein: 5ASA inhibits MAP, not MAA. It’s a laser for MAP. Mother nature’s anti-mycobacterial antibiotics: Vit A&D.
Dr. William Chamberlin: Immune deficiency and infection are flip sides of the same coin.
Dr. Leonardo Sechi: Antibodies to MAP proteins found in multiple sclerosis, Type 1 Diabetes, Hashimoto patients vs. controls.
Dr. Gilles Monif: Giving a very interesting debate between Robert Koch and Louis Pasteur on whether MAP is zoonotic.
Dr. Gilles Monif: Milk based foods adulterated with MAP form the zoonotic bridge between animals and humans.
Dr. Gilles Monif: While MAP has no difficulty crossing species lines, it does so at a price – loss of virulence.
I drove home thinking: What can be done by Human Para and our patient community? The answer I believe lies in awareness and community. We need to make the world aware of this science through social media platforms, by sharing our knowledge with those around us, and by talking to our doctors. We may not have large amounts of funding or important connections, but we can use our social media networks to spread this science around the world for free. And we all have a different set of skills. By putting those skills together and working as one community with one voice, we can be infinitely more effective than when we work alone. I’d encourage you share the science and connect with our group in whatever way you feel you can.
I know many of you have experience the separation of chronic illness, or have seen it through the eyes of someone you love. A shift is happening in medicine that I believe will allow all of us to reach the light of health eventually. The time of immunosupression is ending as MAP science comes into the light. We’re all on this difficult journey together, but now there is a light at the end of the tunnel.