This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all.

My mother has MS and lives in the UK, I live in USA. I want to know if she is getting the best treatment. I am always looking at what is out there. She has secondary progressive - and is quite progressed. There isn't much - but even with treatments for symptoms some are better than others.

Currently all they are giving her in UK is:
Symmetrel for fatigue
B vitamins
*Paroxetine* for depression
She took Sinemet for a shaky hand but we took her off

What do people here take for SPMS? If some people were diagnosed a bit later, or had a very progressive disease, is the regimen different? If you did not get interferon early, what did you take? She wasn't given interferon because it wasn't approved in the UK at the time, so they decided that she could not have any disease modifying drugs, because then it was "too late."

Anyway, thats the deal - if anyone has any comments or suggestions, thank you in advance. Otherwise I'll hang out and see what others are talking about.

UK you say, I would get her fanny to see David Wheldon. I am sure his wife Sarah will be along to help you. In the mean time, take a look at the antibiotics thread on this forum or go to www.CPn Help.org. You might decide this is something worth pursuing. I certainly do.

Lexy

And here she is, like the proverbial bad penny!

Living in the UK I was diagnosed with very aggressive SPMS three years ago, just about. I don't know where your mother lives, but we are in Bedford, about 50 miles north of London. David is a clinical microbiologist at the local hospital, which unlike in the US means that he is a medical doctor who treats patients rather than being solely a laboratarian. He did some rapid research after my diagnosis and unearthed the work they were doing at Vanderbilt University Hospital in Nashville. About ten days after diagnosis he put me on the various antibiotics you will find listed on his website:

http://www.davidwheldon.co.uk/ms-treatment.html

Here you will also find the story of my recovery and lots of other relevant information. Near the bottom of the first page, you will find his email address, if you would like to write to ask for an appointment. He prefers this initially to phone calls because he has many other things to do such as lab work, answering calls from local GPs, visiting patients in the wards, especially ITU, and seeing patients from outside the hospital. He does reply very promptly, though.

I don't know about any of the drugs you mention because after years of relapsing remitting disease, my change to progression was so sudden and so rapid, I didn't have a chance to try anything, not that I was offered anything by the neurologist, apart from IV steroids if needed at any time.

The generally accepted theory in the UK is that if you have SPMS there is little point in giving interferons. I don't know if this is the right idea or not, because everybody is different. They aren't meant to do anything more than moderate the progression of the disease, though, whereas the abx completely halted my disease in its tracks and enabled me to regain the use of my right hand, which was pretty useful for a right-handed professional fine artist.

I would have a good look at David's pages and then contact him if you see so fit.

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.

How long does it take before most people can tell whether its helping? Are there any contra-indications or ways to know whether it is more or less likely to help you (eg can you test for the Chlamydia pneumoniae)?

How much must you invest before knowing if it will help?

And to the rest of you: what else are people using who have SPMS and do you think my mom was shortchanged by her doctor?

hello gliberty,

I'm not sure what is approved for SPMS in the UK, if anything at all. I do know that there have been trials for the generally available treatments mitoxantrone (trade name Novantrone), cyclophosphamide (Cytoxan), and Interferon beta 1-b (trade name Betaferon) for SPMS showing some positive results. You may want to do some digging on them to see if they might be options across the pond.

Proud to have you with us,
-a

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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.

Thanks for the reply. I have looked into them some already. I asked her neurologist, who is supposed to be good, about them. None are actually approved for SPMS, if I remember correctly, but the neuro admitted that some doctors give it to patients with SPMS anyway. But he didn't think they would help my mom, and I was unable to convince everyone that we should try them.

I am not sure whether this is the right thing for my mom. Also, I feel like she should have been given treatment a long time ago - as they tell us that the reason she shouldn't get the treatment now is that its too late.

I wonder whether people with the same degree of progression in the US do receive those medicines. I also wonder whether there are other treatments for fatigue and so forth that we should consider. Someone mentioned Ritalin. I am also looking into the antibodies idea - it some seem to have some traction within the peer reviewed science community.

Anyway, thanks for the input. Any more info you have greatly appreciated.

gliberty

Look at this site for the UK's National Institute fro Health and Clinical Excellence http://www.nice.org.uk/search.aspx?ss=multiple+sclerosis (NICE). What's here is the minimum your mother can expect and demand from our National Health Service. Anything more she'll need to battle for and maybe pay for

lexy

Careful with the idioms - fanny in the UK means something rather different to us than it does in US - not far away but a touch more

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John
I am what I am

Oh dear me! Here I am sitting innocently stateside and never knowing how racey I am being.

Thanks John for keeping me PG and not XX. (as in Movie ratings)

Lexy

Thank you. I had read something from NICE that explained what the current approved teatments for SPMS were, and I spoke to the neurologist about them. There are not many more than my mom is getting that are actually approved in UK for SPMS, most are only for RRMS. Her neurologist was very unwilling to consider any of the ones approved or borderline approved for RRMS/SPMS, he just did not belive they would help. If anyone offers testimonial to one of them I would reconsider it, research it more and maybe change neurologists if it seemed promising for my mom.

The real concern that I have is that either:
A. People in the US are offered more options and I should bring my mom here - or find a way to get her something there that isn't approved for SPMS in UK- or
B. There is something not approved anywhere (like antibiotics) that I should consider anyway - or
C. There is something (like Ritalin) that is approved for other things that might help my mom and we should try it

If you go to the site recommended above, you will learn much research about this disease that is not mainstream among either patients or primary-care physicians. You will also learn about NAC (N-Acetyl-Cysteine), an amino acid to which "normal" people do not react at all. Only those who carry the Chlamydia Pneumonia bacterium or its relatives react to it with cold and flu-like symptoms which will last for a few hours to a day. With most people it only takes one or two of these capsules to do this simple, non-toxic test. We who subscribe to this protocol take this twice a day. It is a concrete thing to do and will help you to make a decision about what path to follow. Best luck and please keep us posted.

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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.

And I do like the science behind the antibiotics. Along with all the great testimonials, it does sound good.

But does nobody here have any other suggestions, at all??

I like to consider as many ideas as I can...

GL, i'm just going to go over my approach and please forgive me if i'm telling you anything you already know.

i have self treated by researching serum findings in typical ms patients. these include, to my knowledge so far, low vitamin D3 - specifically "25hydroxycholecalciferol" (the best indicator of vitamin D status), vitamin B12, magnesium, uric acid, zinc, and iron. i request bloodwork for nutrients, supplement where necessary according to the results, and do followup bloodwork to monitor the impact of my supplement regimen. i have not yet had all relevant nutrients tested but am making progress.

such tests, when requisitioned by my family doc, are covered under (canadian) government health care. i am fortunate in having accomodating doctors.

i have a number of results now. i see definite aspects of my personal history that explain unsatisfactory findings, and have modified various dietary behaviours accordingly.

i have had prescriptions written for one of my supplements: vitamin d3 (cholecalciferol). i buy the rest myself. in canada, we write off supplement purchases on our tax returns.

here is a link to a site which is really in line with my thinking on my personal version of ms: http://www.nhfw.info/multiple-sclerosis.html there is one exception - i am not yet on board with the gluten intolerance idea. we'll see. also where estrogen is mentioned... ovaries have receptors for calcitriol (1,25dihydroxycholecalciferol), the most active metabolite for vitamin d - so might not sufficient vitamin d status improve a person's estrogen status? but i digress...

i am suprised i have not run across that site before! i am also suprised that the correlation between its information on iron, and the implied rationale for higher ms incidence in women is not clearly stated. (did you know that gout and ms are mutually exclusive?) perhaps it's elsewhere on that site...?

one aspect of my supplement regimen that does not have to do with nutrient status, is acidophilus. i saw that for myself, candida overgrowth was definitely an issue. acidophilus and dietary modification is helping there. there is some overlap between this approach and the wheldon protocol, which utilizes acidophilus to balance the impact of antibiotic treatment. (abx are known to create conditions amenable to candida overgrowth).

i have also added ginkgo biloba, since it increases blood blow, and therefore oxygen and nutrient delivery to tissue.

i think that's all for now

Jimmy, gliberty's mother has secondary progressive MS and is quite advanced. I had secondary progressive, only of a few years standing but very active, after very long term RRMS which hardly affected me at al for much of the time. I took Vitamin D, B complex, fish oil, live yoghurt and antioxidants by the tonne, yet it helped me not one jot until I started on doxycycline et al. All the things you mention are undoubtedly good things to take and she will probably end up with a vibrant complexion but her MS will still be advancing.....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.

hi sarah, did you monitor your serum levels too? i would be interested to know if you noted no improvement when you knew your levels were good. i imagine your ms is quite different from mine because i have noted drastic improvement through supplementation although it is not yet perfect by any means. i remain determined however!

one other question, did you take acidophilus prior to starting the antibiotic regimen?

anyway, i don't think it can hurt glib's mom or anyone with or without ms to know what their serum values are!

No, JL I never had my serum levels checked, except for iron because for other reasons I was likely to be anaemic. I never was because of the amount of chelated iron I took. My levels for other things must have been good because of the amount I was taking. I also always had a good diet, you know, plenty of fresh fruit and veg, white meat, very little red meat, hardly any saturated fat, a small amount of red wine, probably too much coffee. I developed MS soon after college, at 24, but until I was nearly forty it was very mild, any relapses would clear up within a couple of weeks, maybe something to do with my diet, however, when it became progressive, nothing I did or ate made any difference. Not everyone's MS develops like that, thankfully, but when it did it was very rapid. My neurologist signalled to David, my husband, that my working life was over and he should make arrangements for me. Being the David Wheldon in my signature, he did, but not the sort of arrangements that FatFace was thinking of.

As for acidophilus, I have always eaten live yoghurt, but I did add some acidophilus as well when I started the antibiotics because I didn't want to risk messing up my bowel flora/fauna mix which had always been fine.

Sarah


Started the Wheldon regime in August 2003, due to very aggressive SPMS. Moved to intermittent therapy after one year. In May 2006 still take this, two weeks every two months. EDSS was about 7, now less than 2.
An Itinerary in Light and Shadow Berger.

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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.