Up The Creek with a Paddle by Mary Boyle Bradley
Memoir About Low Dose Naltrexone in PPMS and Other Illnesses
Jun 11, 2009
Mary Boyle Bradley has written a fascinating book about her experience with low dose naltrexone, an immunomodulatory therapy which is used in the treatment of autoimmune disease, especially multiple sclerosis, but also other illnesses like cancer, HIV/AIDS and CFS/ME.
Originally published in 2005, Up The Creek With A Paddle: Beat MS and Many Autoimmune Disorders with Low Dose Naltrexone (Outskirts Press, 2009, ISBN 978-1432711504) reads a lot like a memoir. It starts with the author's early life in Ireland, where she meets her future husband Noel. They move to the States and have three children one after another and their life is great, except for one thing. Noel's leg "goes asleep" and never wakes up.
For years they try to deny the problem, but eventually Noel is diagnosed with multiple sclerosis, specifically primary progressive multiple sclerosis (PPMS), which does not respond to standard MS medications. Despite this Noel is prescribed Avonex, an immunosuppressant given by injection. He has great faith in his neurologist, but the Avonex does not seem slow down the progression of his illness.
Fighting Back
Mary is devastated by her husband's illness, even though she gets great support from a mom group she attends. He has increasing problems with walking and coordination and eventually has to use a wheelchair, but he takes it with great grace and does not want to devote too much time to thinking about his illness.
His wife, however, has a different attitude. She's prepared to fight. There must be something that can be done about Noel's worsening illness. She embarks on Internet research and finds a lot of information on alternative MS treatments, from bee stings to histamine. Many of them sound promising, but she knows his husband would think she was crazy if she tried to get them to try it.
Later she hears about low dose naltrexone from a pharmacist to whom she has mentioned Noel's illness. She researches the subject and it sounds too good to be true - an inexpensive treatment with barely any side effects, which can almost always bring the progression of MS to a halt? To her surprise she founds out her brother Phil, a MD, is already using LDN in his practice as a treatment for fertility problems.
Mary decides to call Bernard Bihari who pioneered LDN therapy in the 1980s. To her surprise he's willing to explain all about it on the phone. After that, Mary has to convince her husband and his neurologist, as well. At first Noel is very angry, but in the end he agrees to try LDN and manages to get a prescription. He also has to stop the Avonex and thus "betray" his neurologist.
Success and Disappointments
Noel does not want to hold his hopes up too high, but his MS does stop progressing. Mary gets her mom with breast cancer on LDN and his uncle with Parkinson's disease experiences great improvement on it. She contacts many multiple sclerosis groups, but to her dismay discovers they are uninterested in LDN, because they are funded by big pharmaceutical companies behind the standard MS drugs.
But Mary isn't let down so easily. She appears on the Irish radio. She tries to get Bihari on TV. She writes celebrities from Bono to Oprah, though she never receives any replies. She applies for a grant for a HIV/AIDS study from the Bill and Melinda Gates Foundation, but is turned down. She even corresponds with the Irish and South African governments.
Mary faces many disappointments, but at least she gets dozens of people to try LDN, most of whom are greatly helped by it. Her book is an inspiring tribute to the fact that even with all the resistance from higher-ups, one person's activism can still do a lot to help others.
See Also
Immunostimulant Drugs for Autoimmune Disease
