This recently happened to me when Catalyst, an Australian television program, advertised it's latest piece about a possible cure for ms. I received calls, text messages and emails from my wonderful support network, as I have done numerous times over the past twelve years since I was first diagnosed. I felt compelled to use this blog to say thank you to everyone who thought to contact me but also to comment on some of the issues raised by the program.
The presenter began by asking whether it was possible for multiple sclerosis to be cured and then assured us that according to these "medical mavericks" the answer was yes. She then introduced us to Dr David Wheldon and his wife Sarah Longlands at their home in England. Dr Wheldon was reluctant to use the word "cure", preferring to say he feels "that the disease has gone"; I understand, respect and appreciate his reticence to use the "C" word. Dr Wheldon, an expert in infectious diseases, believed that Sarah had been infected with a common bacterium called Chlamydia Pneumoniae (Cpn) and blamed this for Sarah's multiple sclerosis. He then set about developing a protocol, or regime, of three different antibiotics to eradicate the bacterium from Sarah's system. Fortunately for Sarah, this approach appears to have worked.
So what do you think a pwms, such as me, would do with this information? Perhaps I would research this myself and follow Dr Wheldon's suggestion that I stay on his recommended combined antibiotic protocol (CAP) for at least one year? Well, that's exactly what I did. Between June 2006 and August 2007 I took the antibiotics suggested. My GP was prepared to write the scripts for me but warned about the risks of long-term antibiotic use and noted in my file that this was my decision rather than her suggestion. She also advised that the antibiotics were not covered by Australia's Pharmaceutical Benefits Scheme (when prescribed for this purpose) and so would cost more than usual.
Unfortunately, Dr Wheldon's protocol did not seem to work for me but that is not to say that it doesn't work at all. In fact, there are a number of people who have experienced similar improvements to Sarah. At this point, I would like to tell you something that my former neurologist said, which was this: he wouldn't be surprised if we eventually learn that ms is actually a number of different diseases with numerous causes. This makes a lot of sense to me. It would explain why the disease can vary so dramatically from person to person and why some respond to particular treatments better than others.
While I was following Dr Wheldon's protocol I kept an online diary, or blog, to track my progress and to share my experiences with others. The blog appears on a non-commercial website run and supported entirely by volunteers to provide help and information about Chlamydia Pneumoniae and the human diseases in which it has been implicated. Dr Wheldon and Sarah Longlands freely give of their time and expertise to contribute to this site, along with many other volunteers, answering questions and encouraging bloggers like me to continue with the protocol. I have the utmost respect and appreciation for them all and in some ways feel as though my body has let them down by not responding to the combined antibiotic protocol as expected and indeed hoped.
Multiple sclerosis has long been referred to as the mystery disease and will remain so until further pieces of the puzzle are uncovered. Clinical trials are needed but as pointed out in the Catalyst program, clinical trials into antibiotics that are off patent are a bad investment for pharmaceutical companies as they are not profitable. It could therefore be a long time before new theories are thoroughly tested and as mentioned, it's time that I can't really afford.
And so while I wait, I consider the prospect of travelling overseas for a stem cell transplant which usually begins with high-dose chemotherapy and carries with it all the associated risks of that. I weigh up the pros and cons of switching to a medication that could result in me getting a brain infection that usually causes death or severe disability. I then assess my current quality of life and usefulness in it and know that I am not yet ready to risk the devil I know for one that may be much worse. Not yet anyway.
Unfortunately, there are still far too many variables and unknowns for anyone to talk with any authority about a cure for multiple sclerosis. It is my fervent wish that someone somewhere will be able to claim this right soon.
The Catalyst program discussed here screened in Australia on ABC1 on 23 August 2012. To watch the episode online, click here. Alternatively search for "MS Cure?" Series 13 Episode 14 or enter the following address into your browser http://www.abc.net.au/catalyst/stories/3572695.htm
To find help and advice on Chlamydia Pneumoniae (Cpn), click here or enter the following address into your browser http://www.cpnhelp.org
To read the blog I wrote while I was following Dr Wheldon's combined antibiotic protocol (CAP), click here or enter the following address into your brower http://www.cpnhelp.org/blog/nessabear