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Postby sojourner » Fri Nov 30, 2007 1:46 pm

Hi Robbie---I don't suppose to speak for Mormiles ( I know her as Cypriane on Cpn) but she keeps an exhaustive (for her anyway) blog on her husband's experience on that site---with pictures too, if I recall.

I think your astonishment that her hubby could have all these infections and still be alive illustrates the general lack of understanding of latent/chronic pathogens that slowly degrade the immune systems and health of many people. He might not be dead now, but I'd bet some combo of these buggers eventually kill many people even if we label their death from heart disease, cancer, stroke....etc.

You might want to check out a book by a professor of biology and director of the Evolutionary Medicine program at the University of Louisville. It's called Plague Time by Paul Ewald. From the back of the book,

"The greatest threats to our health come not from sensational killers such as Ebola, West Nile virus and super -virulent strains of influenza, but from agents that are already here causing long-term infections, which eventually lead to debilitation and death."

It's a fascinating book.
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Postby mormiles » Fri Nov 30, 2007 4:09 pm

Hi Robbie, Believe it or not, I laughed when I read your comments. Alot of us are walking around with multiple chronic infections (including me and I don't have MS). To answer your questions...Steve is still working every day, but he has a tough time making it through the afternoons much of the time. He should be using a cane, but he won't, because he's afraid he will be perceived as incapable in his workplace. He's very paranoid about losing his job. Steve has cognitive dysfunction problems and performs low level work at an electronics facility similar to one where he was once the general manager. If he were less affable and well respected with a long history in his field, he probably would have lost his job by now. He has bladder control issues and uses PGE for those intimate moments. Steve is 54, but his first bonafide MS symptoms started in his early 20s. The progression was very slow until about 4 years ago. All those "slow" years he just thought he was a clumsy guy with lots of small niggling problems that were just getting worse as he aged. His diagnosis was in January '05.

This is his treatment history and current status:

March '05 through March '06, injected Rebif.

April '06, four months before starting the CAP, some incidental imaging revealed several mystery lesions in Steve's internal organs. Since then they've been "watched" with repeated imaging every 6 months.

July '06, used oil of oregano for 2 weeks, but had to discontinue because the fungal die-off reactions were too severe. This was tried because various symptoms pointed to intestinal Candidiasis within this time-frame and, basically, symptoms throughout his entire life indicated chronic Candidiasis.

August '06, took fluconazole for several days (after steroid injection), then started the CAP.

May '07, after several months of improvement on the CAP, Steve's condition started slipping. Since then, he has had more courses of fluconazole, Vfend, Nystatin, and various antifungal supplements. He consistently improves rapidly for several days on these antifungal meds, only to slip down toward the end of the courses. During those "up" times, it's apparent that his CAP improvements are still in place. Steve's doctor now believes he has a resistant strain of Candida, that the infection has gone systemic, and that those mystery lesions in his internal organs are fungal abcesses.

Currently, we are making arrangements with a doctor who is geographically closer to run some confirming tests and hopefully to administer IV antifungal treatments for several weeks. From our understanding, when Candidiasis is this bad and resistant, that's what it takes to lick it.

To meet us visually, please go to : http://www.CPn Help.org/coming_out
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby robbie » Sat Dec 01, 2007 6:35 am

sorry joyce when you say in your signature that your steves caregiver and he has spms i pictured him being much worse. good luck with all the things he has, hopefully you can get rid off it all including his ms.
Had ms for over 19 years now.
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Postby Loobie » Sat Dec 01, 2007 7:41 am

Man when I read this thread I feel like a dummy. I got thoroughly tested (for sugar, infections, EBV, and others) when they were trying to diagnose me. They suspected MS, but told me they were going to rule everything else out first. They did argue with me about my EBV titer and TOLD me that I must have had mono because they were so high. I never did and was told that if I had had mono I would have known it. Maybe I had incompetent docs, but I have never had ANY stomach or gut problems, no vasculitis, never any fatigue issues, never been a sickly guy and aside from MS, I am uber healthy. It literally showed up when I was playing a racquetball tournament and was in fantastic health at the time. Reading this thread makes me feel like I need to go back to some sort of doctor to look in my gut and in my blood. Hell, I've never had pneumonia! It sounds like from this that maybe I need to look for Cpn anyway since it sounds like (to me anyway) that a lot of these infections are "low lying". You all seem so educated as to what is going on internally, but I guess I've become educated in the neurological aspects and how the CNS interacts to attack myelin. I never thought there was a reason to look anywhere else.

I suppose reading any of the threads that have a different approach than the ones I'm interested in will illicit the same reaction from me, ie make me feel like I have not researched this enough to make sure there are no stones unturned. I need to do some more research!
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Postby Anecdote » Sat Dec 01, 2007 8:35 am

Loobie, you sound just like me: uber healthy and my only childhood illness was scarlet fever when seven.

I never had anything looked at either, I just started doxycycline when my MS became seriously worse: I didn't believe it would work, but I'm married to a doctor whose specialty is microbiology and virology and he knew I was toxic. When I was tested for Cpn it showed as being non diagnostic: its very hard to detect.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Terry » Sat Dec 01, 2007 9:50 pm

This is a good time for me to jump back in. I had blood tests last week and tested negative for CPN, but positive for antibodies to CPN. This has to mean that I have or have had the bacteria, correct?
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Postby Anecdote » Sun Dec 02, 2007 6:41 am

Terry, certainly it means you have had the pathogen at some point and maybe still do, but not active in your blood when tested. I had a reading of 1:64, which most docs would not consider needed treating, but I responded to doxycycline within hours with aches and low level fever. I spent the next few weeks sleeping a lot then when I got through that I had very few reactions throughout the rest of the treatment, but my progressive MS just receded and I have had no exacerbations since. I still can't run, though, but so what.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Loobie » Sun Dec 02, 2007 7:32 am

Anecdote,

It's funny you mention Scarlet Fever. It's the one and only childhood illness that me and me Mom can remember me having. There was a thread sometime back where people were chiming in about Scarlet Fever. I think Bob started it but I'm not sure. There were a number of us that have had that. Maybe it's just more common than I think, but who knows, maybe a possible connection? Do you know what the virus or bacteria involved in Scarlet Fever is? I'm curious if you do.
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Postby Anecdote » Sun Dec 02, 2007 8:35 am

Its a streptococcus which can also cause the much more damaging rheumatic fever in children: http://www.textbookofbacteriology.net/streptococcus.html but I really don't think there is any link with MS.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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