This Is MS Multiple Sclerosis Knowledge & Support Community

I'll state my bias up front: I'm in my own "camp," and I think the rest of you are either wrong or only partially correct if you don't share my views on the causes and treatments of MS. That's not to say that my camp is separated from other camps, but rather, that my camp overlaps and encompasses other camps. I don't think there is a single cause of MS although I do think there is a trigger event or agent, but the trigger may not be the same for everyone. I have very little patience with discussions about what THE cause of MS might be. I especially have no patience for the autoimmune view of MS or treatments that tinker with the immune system...been there, done that (Rebif for a year). Autoimmunity and the reasons given for taking CRABS rate right up there with believing in "The Emperor's New Clothes."

Okay, now that I've told you my somewhat less than humble opinion, I'll tell you that I'm actually a pleasant person who has been compelled to make a pastime of investigating possible MS causes and treatments. I love my husband who has SPMS and has been too brain foggy and trusting in his unhelpful former neurologist to do it himself. It has only been his treatment experiences and my own observations that formed my opinions. I was unbiased when I started investigating, but now I've stepped back and "looked at the forest instead of the trees."

You others who have done this type of broad investigating will understand what I mean when I say that there is evidence of involvement of many factors in MS. Just to name some, there are: viral, bacterial, fungal, and other microbial infections; vitamin D deficiency; elevated concentrations of heavy metals/toxins; gut problems like leaky gut, food sensitivities, dysbiosis, malabsorption; genetic predisposition; hormone imbalances; sleep and IGF-1 deficiency; glutathione depletion; etc. The more you look and read, the more you learn about the interrelationships between these factors and how they can screw up immune function. You learn that, historically, folks with MS have been treated for this and that suspected cause, but in the end, nothing has panned out to be THE cause and no single treatment has proven to be universally and ultimately effective. Does that mean they were wrong? Not necessarily...they were just single pieces of a jigsaw puzzle. Incidentally, I think there are probably factors F, K, Q, W, X, Y, and Z that are still not even suspected by anyone. This worries me.

My view of MS is that it is neurological inflammation that can be caused by a number of different factors, but most probably a combination of different factors. This is not my own original idea---it comes from my husband's new neurologist who had the guts to say "There is no such disease as MS...it's inflammation, and we can get rid of it." This bold view meshed very nicely with what I had already come to believe about MS. I am so relieved to have found a doctor who is now treating my husband's SPMS comprehensively.

Oh yes...the trigger issue. The new neuro suspects that the trigger is viral, whereas Dr. Wheldon sees viruses as "henchmen." As every case of MS is so unique, they could both be right...or they could both be wrong. That answer will emerge some day, but in the meantime, the more critical issue is to acknowledge that the viruses are probably present in any given individual MS scenario and to treat the individual accordingly for viral infections. Incidentally, my husband tested positive for titers of CMV and EBV. If he had been tested for other viruses...well, there's no telling what he would have tested positive for. He' on a 6 month course of valtrex and amantadine.

And what about antibiotics? The effects on my husband of incidental antibiotics and starting N-acetyl cysteine were clearly indicative of bacterial involvement before actually starting the Wheldon combined antibiotic protocol within the new neuro's protocol. By the way, he was positive for mycoplasma pneumoniae, but negative for chlamydia pneumoniae on titer testing. Do I think he has Cpn? Yes, but there is no reason to press for more reliable testing now that he is on the protocol. Our insurance company is not going to pay for a test to prove me right. In any case, even if he doesn't have Cpn, the Wheldon protocol is effective for treating mycoplasma, and I see this as the most critical part of his overall treatment. There is no reason to think my husband is the only MSer with bacterial involvement in the disease process---visit CPn Help.org to find plenty of others with the same problem. The difference between them and the autoimmune camp is that they have tested positive for Cpn or Mpn or have had illness/treatment experiences that indicate bacterial involvement. By the way, there are very notable and open discussions of viral co-infections in that camp. Also, the prepared text on that site and Dr. Wheldon's is very clear in its presentation of chronic chlamydia pneumoniae infection as a factor amongst other factors involved in MS. I would say that my exposure to the prepared material and postings on CPn Help.org and Dr. Wheldon's site material have served to broaden my investigational path as opposed to constricting it.

Heavy metals? Yep, he's got'em, and he's taking chelation therapy too. We are also buying RO-filtered water, brushing our teeth with fluoride-free toothpaste, and using aluminum-free deodorant. The aluminum pots, pans, and kettle have left the building.

Gut problems? Oh yeah...the new doc gave him a 7-day course of diflucan at the start of the protocol. Thank goodness the oregano oil he was on had already killed off so much. The die-off reaction to that was so bad we had to take a break from it. The diflucan die-off reaction would have been much worse than it was if not for the prior fungal kill-off. Now that he is on chelation, his doc has advised to add caprylic acid to his supplements as this is an additional factor of vulnerability to fungal overgrowth. The need for good and frequent probiotics and anti-fungal supplements while on the antibiotics was already understood and discusssed with this doc. The chronic constipation is being helped very nicely by pure cellulose powder, a terrific source for insoluble fiber (and that's the right type of fiber to supplement for this scenario).

This gut problem deserves separate mention. He has a strong sensitivity to gluten. It's tough to avoid gluten, but it becomes easier when there's been a clear and memorable demonstration of the result of eating it. The new doc has him avoiding dairy also (casein sensitivity), but says these can both be added back into his diet eventually in small quantities. For gut healing, he is taking gamma oryzanol and IGg 2000 DF by Xymogen as well as the added gut-healing benefit of the cellulose powder.

Poor sleep patterns? Yep, and he's on Lunesta for that.

And yes, he's taking lots of vitamin D and other supplements mostly per Dr. Wheldon's site recommendations but some per sources found through my own broader investigations. All these have been approved by the new doc who is familiar with all of them and understands their purpose.

Sounds like a big batch of pills. Oh yeah...suitable for a big illness. That's not to say the idea is to throw a bunch of pills at it---every one of them has a good reason behind it. Multiple factors---multiple treatments.

That's my husband's MS profile, and it is uniquely his. Is it unusual though? In the world of MS, I don't think so. And how is it that a person should happen to be affected by so many of these factors? This is not coincidence. After the trigger, something happens, and it's not autoimmunity. Check out glutathione depletion very thoroughly---I'll blog about this later.

By the way, he's improving. I have strong opinions on improvement too, but this blog is already too long.

Cypriane~MS caregiver and advocate in Dallas

WHAT A GREAT, GREAT, GREAT, WONDERFUL, EXCELLENT POST!!! You have been able to put into coherent, well-organized words what has been in my very soul from the day my daughter was diagnosed!!! If one counted up all the hours I have invested in researching this "thing", I would probably be a Ph.D right now. You are additionally fortunate in that you have a doctor who is actually willing to step outside the perverbial "box"! THNAK YOU!!! I have copied and pasted your post to Word and am sending a copy to my daughter!

My daughter just recently decided to step outside of her box (or "body bag" as she calls it!) and is trying an unorthodox natural treatment. The improvements have been nothing short of amazing! However, having something to "try next" if this proves unsuccessful is a true gift from God! I don't think she will ever go back on Avonex--or all of the other, multiple medications--she was pumping her body full of! Although her case is considered "mild", her quality of life was non-existent!

Please don't leave us and please continue to share. You are my new HERO! Chris

heya, i'm on board with that. actually i'm about to do some diflucan myself. oil of oregano is not actually doing the trick as effectively as i seem to need! thanks for the die-off warning... i have four days off a week how many days did the reaction go for?

Hi jimmylegs, That's a tough one. I wasn't crazy about the idea, but the new doc gave my husband an injection of a mild steroid during the visit for an immediate calming down of the inflammation. This was a blessing, but it made the die-off reactions to starting the diflucan and the antivirals less "visible" than they would have been without it. Three weeks later he started doxycycline; by that time, some of the steroid had worn off, so the antibiotic-related die-off reaction was much more "visible." Joyce

hmm interesting. well no-one's ever offered me steroids so i guess i'll just see how it goes thanks though

Joyce, I can certainly agree with you that there are many things involved in the development of MS: there is vitamin D deficiency in nearly everyone, for starters, heavy metal toxicity in some, but by no means all, ditto food sensitivities, malabsorption, glutathione depletion, hormone imbalances, and so on and so forth. None of these can be said to cause the disease, however. Then there is a genetic predisposition: someone without this predisposition but with all these involvements will not develop MS, yet someone , like me, with the genetic predisposition, but non of these involvements, does.

So then we move onto the infective trigger: I must have encountered all the usual supposed culprits in my youth. Who, for example, has never encountered EBV virus, unless they live in a bubble? Some manage to kick it off, yet some remain with it forever. I don't know which of these groups I belong to, yet I do know that in the late eighties a new pathogen was unearthed, named chlamydia pneumoniae. This was several years after I developed my first MS symptom. David remembers doing some of the first pcr* tests for it, yet at the time it was not thought to cause more than a low level community acquired pneumonia, unlike the HIV virus, discovered only a few years previously, which was rapidly laying waste to whole sections of the community. By 2001, I was becoming much more seriously ill. That was the year, after a really serious relapse which left me hardly able to walk, my MS became progressive. I recovered slightly from this relapse, but then there were no more relapses, just constant downhill progression. Then in late 2003, David started me on doxycycline and roxithromycin. The progress of the disease stopped dead in its tracks.

So, I can but think that CPn was the trigger for my disease. Many other people are finding this, both is the Regimens and Antibiotics sections here and on CPn Help, never mind the many people who don't post anywhere, and the people who see David as local patients in our hospital, in preference to our Addenbroke's neuro. I wasn't tested for CPn infection before starting treatment and I didn't really believe it would work.

If you look here: http://www.davidwheldon.co.uk/hhv6.html you can fin much information about the theory that many viruses just follow on with a CPn infection, or are woken up by it. They are easier to culture than the notoriously difficult CPn and conveniently difficult (for neurologists) to eradicate, so they can either be just ignored as a possible trigger or treated by wiping out parts of the immune system where they night congregate.

So I guess I am saying that there are many triggers but one main cause, mainly because the first thing that I tried, happened to work. I can say this with more assurance as someone with aggressive secondary progressive disease than many people could. Maybe I was just lucky, I can't say, so will have to leave that for the history of medicine to decide.

Sarah

Hmmm! Double posted again........Sarah

Sarah, you wrote about C.pneumoniae:

it was not thought to cause more than a low level community acquired pneumonia,

With your unique connection to the medical community, can you tell me if the C. pneunomiae bacterium affects the pancreas? Could it cause damage to that organ as well as pneumonia; or cause a malfunction in insulin secretion?

As you know, I am looking for reasons that my pancreas produces too much.

Lynda, if you research pub med for chlamydia pneumoniae, you can find that it affects just about every organ of the body. David has treated himself very successfully for cardiovascular problems, for starters. I did a quick search using the term "chlamydia pneumoniae and insulin secretion" and found this abstract: http://www.ncbi.nlm.nih.gov/entrez/quer ... &DB=pubmed

Section of Diabetes, Endocrinology and Nutrition, Institut d'Investigacio Biomedica de Girona, Avinguda de Franca s/n, 17007 Girona, Spain.

Main author: F M Fernandez-Reall

OBJECTIVE: We hypothesized that burden of infection could be associated with chronic low-grade inflammation, resulting in insulin resistance. We aimed to study the effect of exposure to four infections on insulin sensitivity in apparently healthy middle-aged men (n = 124). RESEARCH DESIGN AND METHODS: By inclusion criteria, all subjects were hepatitis C virus antibody seronegative. Each study subject's serum was tested for specific IgG class antibodies against herpes simplex virus (HSV)-1, HSV-2, enteroviruses, and Chlamydia pneumoniae through the use of quantitative in vitro enzyme-linked immunosorbent assays. Insulin sensitivity was evaluated using minimal model analysis. RESULTS: The HSV-2 titer was negatively associated with insulin sensitivity even after controlling for BMI, age, and C-reactive protein (CRP). The associations were stronger when considering the infection burden. In particular, in those subjects who were seropositive for C. pneumoniae, the relationship between the quantitative seropositivity index (a measure of the exposure to various pathogens) and insulin sensitivity was strengthened (r = -0.50, P < 0.0001). We also observed decreasing mean insulin sensitivity index with increasing seropositivity score in subjects positive for enteroviruses. In the latter, the relationship between insulin sensitivity and seropositivity was especially significant (r = -0.71, P < 0.0001). In a multivariate regression analysis, both BMI and quantitative seropositivity index (7%) independently predicted insulin sensitivity variance in subjects with C. pneumoniae seropositivity. When controlling for CRP, this association was no longer significant. CONCLUSIONS: Pathogen burden showed the strongest association with insulin resistance, especially with enteroviruses and C. pneumoniae seropositivity. We hypothesize that exposure to multiple pathogens could cause a chronic low-grade inflammation, resulting in insulin resistance.

PMID: 16644637 [PubMed - indexed for MEDLINE]

You can use similar search terms and find more results.

I developed MS at the age of 24, but for a few years before that, I suffered from hypo-glaecemia. I never was fat, far from it, but got very weak at a moment's notice and suffered from the "I've got to eat something NOW!" syndrome. This could have been an infection of the pancreas or it could simply have been the pathogen in my stomach eating all the food before I got a chance to. It certainly wasn't candida, or any of the other things which are often given as a cause.

A slightly different organ, but MacKintosh was suffering from gall bladder disease before she started treatment for her MS. She was due for surgery but it has now completely cleared up. You might care to write to her about it, but be warned: she is ultra busy at the moment, having just moved house whilst still working full-time.

Sarah

Thanks for your help, Sarah.

This link explains how Dr. Stratton sees Cpn effecting multiple organ systems. I didn't include the pancreas in the chart, but the principle is the same.
CPn Help/?q=recentobservations

Thanks to all for the interesting comments. Chris, you make me blush, but it's good to know someone else is sizing up the "forest" the same way I am. Jimmylegs. if you'd like some pointers on managing fungal die-off reactions from an unintentional expert, JimK's your goto guy. Joyce

hey thanks. i just got my fluconazole script and it's for 50mg for 14 days (or 28 days if they won't split the pack at the chemist). does this sound to you guys like it will do the trick? jimk if you see this: any thoughts?

Jimmylegs- The fluconazole tabs I've been given are 200mg, I take them once or twice a week, mostly as preventative. I've not had strong reactions to fluconazole, except now and then. As it's systemic, it only hits fungus or yeast where it is in contact with blood supply. Most of the candida/dysbiosis I've had seems better effected by agents which kill it in the gut, like grapefruitseed extract, oregano oil, a product called Kolorex and caprylic acid. I get much stronger die-off reactions from agents like these which stay more local in the intestines themselves.

ya i hear ya i can sure tell when the oil of oregano kicks in! well we did look at the 200mg amount but the literature said that dose was for hiv patients, she did say immunocompromised and i said aren't i?? but she said try the 50 and see if it works. so i will! thanks for the info ttfn