This Is MS Multiple Sclerosis Community: Knowledge & Support

Terry,

I've always cursed my luck getting this disease but your story certainly makes me feel very humble.

All the best

Ian

Hi Ian I'd like to share a couple of things. Mono is not only spread by kissing (infectious saliva). It is also spread by droplets so a sneezing or coughing person infected with it can infect you. 95% of the population gets it. It is absolutely ubiquitous, and potentially it was not the girl you kissed a the concert but instead just being a living human being breathing air the rest of us breathe and sneeze in. You'd be a rare person to avoid getting EBV. I hope that feels a little better.

I have read that in MS patients some people see an upregulation of antibodies to EBV in MS as if for some reason these folks have a chronic EBV illness. I am a fan of the chlamydia pneumoniae theory personally, but as you mention there is a lot of evidence that points towards an infective cause. I wish the research community would get off it and really LOOK at why the autoimmune theory model is not possibly right. Chaudhuri, Prineas and Barnett; these guys are making history and the rest of the science world sems to utterly ignore it and go look once again at something like "EGADS! IL-17 is upregulated! Well well, lets look at killing that off." Well for crying out loud is IL -17 part of the immune system? Yes. Is it possible people with a bug (virus or bact) might have an upregulated something such as IL-17 others do not???? DUH! Obviously if there's an infection others do not have then the immune system is going to react some special way to it. We also know that the body does certain things especially if it is chlamydia pneumonia in the area. IT will upregulate nitric oxide to kill cpn. Um, gee, where did I ever hear of NO being high? Oh, right, in MS.

A lot of these kinds of things vary based on the bug in question. It is not true that the body fights every bug the same way. It does not. In the case of CPn (sorry, I happen to know about cpn so can say for sure to give an example here), it will catabolize (break down) tryptophan so the cpn does not have it for replicating. this is special to CPn response by the body.

To me the peculiarities of the MS brain so well documented and observed are obviously a response to something that I can't imagine how we can think that the body is being stupid and doing this for no good reason. Just becasue we can't find it (or refuse to admit it) doesn't mean it is not there. As an aside, the CDC considers it a problem that physicians are not prescribing antibiotics for stomach ulcers because it is known that up to 90% of them can be cured that way. They continue to give protonix or prilosec other expensive patent drugs....medicine does not see these things
marie

Marie,

Thanks for this. Mono (as Americans call it) does appear to have some role in MS (jury still out on the exact role). It would also fit with the age profile of those getting MS. I have no medical background at all so I'm not really sure how CPn is spread or why this would fit with the age profile of MS suffers (usually diagnosed between 20-40). I always thought that bacteria got in through wounds etc rather than passed on by kissing / sneezing.

PS I was only joking about the kissing bit

Ian

You are most cordially invited to the http://www.CPn Help.org/
Barbara

I already invited him on the first page, but I think he must have declined the offer, since it wasn't me that kissed him in Trafalgar Square!

Sarah

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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.

Getting separate invites from different ladies is very flattering.

Sarah - I've seen your photo on the CPn site and I'm not so sure that it wasn't you in 1979 (not sure if you passed on your CPn or EBV to me?).


Ian

PS - Sarah, given that optic neurosis and sometimes blindness are symptoms of MS, I'm not sure that the Proverb you use is very appropriate.

Hi all. I'm not a frequent contributor here, but lurk often and hope you don't mind me jumping in here, as this has always fascinated me.

I graduated from college in 1995. In 1998, my sophomore-junior year college roommate was diagnosed with MS. She has been pretty healthy during the course of her RRMS, with just a few exacerbations in the years since dx.

In early 2002, I was diagnosed with MS. Luckily, I knew quite a bit about it, after watching my dear friend adjust to the news of her dx. Our cases seem fairly similar. I've had 3 mild exacerbations in the almost 4 years since being diagnosed. My MRI shows mild increase in disease activity since dx, but I've been one of the lucky ones so far.

Here's the kicker... We had mono at the same time in 1993. There was a vicious case of it going around our music department, and the two of us were hit particularly hard. My neurologist at the time I was diagnosed believed so strongly in the possible tie between mono and MS that he considered it a supporting factor in my diagnosis. He seemed to be able to tell from my bloodwork that I'd had a particularly bad case of mono - is that possible?

Anyway, I've always thought it was TOO weird that 2 college roommates would eventually be diagnosed with MS after having a bad case of mono at the same time.

And to make matters weirder, I just heard of another female music student from our class who was diagnosed. I don't know if she also had mono. But there were a total of 400 music majors in our graduating calss... 3 of us have MS????

There's my story of uncanny coincidences.

-Alyssa

Hi Alyssa

If you have been following all this you have probably been to www.CPn Help.org. My regimen is under My Adventures in Ms on this site and I have a blog on CPn Help also. I am one of a growing number who are, I believe, going to have indisputable proof that MS is caused by this opportunistic bug that can create so much havoc. There seem to be many ways that it is released from imprisonment in one's body to "have its" way" Please, if you have not, join us.

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Alyssa,

Thanks for your contribution. In only a few days we have recorded a number of cases where MS looks like it is triggered / caused (for some people) by an infectious agent and mono/glandular fever/EBV seems to be involved in some way. Maybe in the not too distant future the MS experts will be able to say for sure whether EBV is the cause / trigger for some people.

At University, I had a friend who had glandular fever (EBV) and devloped Bells Palsy soon after. The neuro was concerned that she might have MS but 20 years late she has not developed any symptoms (thankfully).

Thanks to all those who have contributed to this thread.

Ian

This is a fascinating thread-- thank you Bromley for starting it. There is a flip side non-binding 'test' to the infectious theory:

For those of you that are married and/or live in close proximity to others that are NOT genetically related to you (e.g., roommates, wives/husbands/significant others, etc.), have THEY come down with any autoimmune diseases after meeting you?

For example, the link between ulcerative colitis, theorized to be an autoimmune disorder, and multiple sclerosis, raises an interesting possibility.

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Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

Interesting question. My answer is yes. My wife was diagnosed with rhematoid artritis 7 years after meeting me, 1 year after we were married. Now that I look back, I was showing probable MS symptom long before she met me so if we have a bug it is most likely I had it first. If this turns out to be the case she is never going to let me forget it !

My wife was diagnosed with arthritis at 18 - something called sero-negative arthritis. Her bad days were in her 20's but she doesn't get any trouble from it now (she's 41). We married in our early 20s and I didn't get MS until 39 (or first symptoms).

Ian

Bromley, as I have told you before, CPn is implicated in the development of rheumatoid arthritis, whether sero-negative or otherwise. You were probably both infected with the pathogen even before you met, most people are by the time they are in their late teens. After that it depends on your own particular susceptibilities whether you later develop MS, RA or a host of other diseases, or nothing at all.

I hope you have replenished your wife's supply of glucosamine which you found in the bathroom cabinet.

Sarah

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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.

Sarah,



You would have made a good school teacher - very strict I would guess.

CPn / EBV / other pathogen - the jury is still out. Maybe in 2006 we will get an answer. But I remain open-minded until we do.

Hope you have a good Christmas - I can see you now, a glass of sherry in your hand, and a pheasant cooking in the aga.

If you were nice, you'd make sure that Father Christmas brought me an orignal piece of art work signed by Sarah Longlands, which would take pride of place in my hallway. Are you that nice?

Ian

lol, I will interjet that you're ALL very nice. Sarah, your artwork is in demand!

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Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.