MS: Many Stories – From the MStranslate Community

Our latest MS: Many Stories feature has been submitted by a regular MStranslate contributor that would like to remain anonymous.  The article was inspired by a recent visit to the neurologist and is called MS Hope – as all members of the story are expressing hope in different ways.

MS Hope

The neurologist always recommends I go on one of the patented MS drugs, so I came prepared for my check-up today.

When prompted, I expressed an interest in participating in any upcoming trial of the Combined Antibiotic Protocol (CAP) for MS: http://www.redhillbio.com/multiple-sclerosis

“It’s formulated by Professor Borody, he’s a pretty smart cookie… you know he formulated the Combined Antibiotic Protocol for stomach ulcers? He’s at the top of his game…” I said.

I handed over a little bundle of print outs, which further demonstrated that minocycline, an antibiotic included in the Combined Antibiotic Protocol, had shown great promise in preventing and treating MS:

http://www.medscape.com/viewarticle/852565

http://vweeyong.com/pdf/04/Metz,%20et%20al.,%20Annals%20of%20Neurology%2055,%20756,%202004.pdf

I didn’t get onto the demonstrated benefit these antibiotics have on cerebral blood flow, as there seemed no point gilding the lily: https://drive.google.com/file/d/0B1jBdgjC1JKKckJRTXBjT1pqOFU/view?pli=1

Response: the hospital won’t be participating in this trial.

The appointment moved on, and I was asked why I hadn’t had an MRI recently. “There doesn’t seem a point” I said contemplatively… “as I’m not deciding whether to embark on a new therapy.”

“If you have additional lesions in your central nervous system….would you commence treatment on one of the existing drugs?” he questioned.

I thought a while, then responded “probably not…MS is a degenerative disease…so I’d expect to acquire more lesions with age, unless I’m on minocycline of course.”

He looked unimpressed.

HIM: “there have been studies done which show the benefits of the existing drugs.””

ME: “the ones who say the existing drugs are effective are those marketing them. The independent studies…such as the one done by NICE…indicate the existing drugs are loaded with risk yet provide no long term benefit”: http://www.bmj.com/content/340/bmj.c1672

We agreed to disagree.

“You MUST come to hospital to receive a steroid infusion if you feel unwell in the future” he said sternly.

“I see steroid therapy as a last resort…given the bad outcome I had before”, I responded.

“You’ll have to remind me again…”. He had genuinely forgotten how we met.

“I previously came into hospital being able to walk and talk, and left unable to do either in response to steroid therapy. You may remember I had an adverse reaction …then my MS began to rapidly progress”. I paused, then referred back to the print-outs I’d given him for the Combined Antibiotic Protocol. “You know…if they’re right…and MS is caused by an intracellular bacteria…steroid therapy is probably the worst thing you could do for an MS patient. They’ll experience short-term gains, and long term pain”.

The gravity of the potential ramifications showed on his face. “I know” he said. Then he looked up, and said uncertainly “…but I don’t think they’re right”.