EDSS IMPROVEMENT from any REGIMEN?? -- FROM, TOO

[daisy]

Rica and Sarah - Limber PPMS and SPMS ladies with declining EDDS scores. How can this be?

[Katman]

As Dr R (husband Richard) says: this is not supposed to happen!

Rica

[jimmylegs]

MS Stage (RR, SP, PP, B) = RR

Regimen = modified klenner documented elsewhere (mostly b-complex megadosing, also vit E)

Length of Time on Regimen = 3 days

EDSS before Regimen = 3.0

EDSS after Regimen = 1.0

[Katman]

So, does this mean that with the increased B-complex (which I have been taking for 2 1/2 years) that my EDSS score would have gone to only 4.7 from 6.7 instead of the 2 (or even 1 on good days) that I have? Perhaps the antibiotics were responsible for the rest of my improvement.

Rica

[jimmylegs]

are you serious??

[Katman]

Do you mean am I serious about the antibiotic regimen I have been on for three years along with the supplements? I am very serious. I have missed the abx not at all and half of the supplements one time. This disease has stolen too many years of my life and was very close to getting the rest.

Rica

[jimmylegs]

clarification: viper, above please find my response to your question in the format you requested.

disclaimer: the aforementioned post, describing personal experience in response to the topic author's original question, is not in any way concerned with, or related to, any other respondent's posts, regimen, experiences, etc.

[ranbar]

I am reading information about improved EDDS scores from these regimes and wonder why I have not been told about them by my Neurologist as I become less mobile? Where is this information, and why aren't others sharing this info?

[jimmylegs]

every patient has to be their own advocate... much of the available scientific knowledge has not translated into mainstream practice. but it is in the public domain if you know where to look. the best thing I learned from ms is that my health is largely up to me. this forum is a great place to ask questions, gather info, and bounce ideas off others

[gibbledygook]

Also I did 3 years on the antibiotic protocol and went from a 4 EDSS to a 6.5. Not everyone responds.

[SarahLonglands]

Ranbar, you need to read on the Antibiotics forum here and these two sites: http://www.davidwheldon.co.uk/ms-treatment.html and CPn Help/ If you can't work this one out try:cpn(nospace)help.org

Gibbledygook is right when she says that not everyone responds but it does help if you do the protocol properly. It is also best to avoid neurologists since most know very little about pathogens.

If you don't have rampantly progressive disease like Rica and I, Jimmylegs own treatment is excellent.

Sarah

[jimmylegs]

thx sarah personally I think progressive or not, all ms patients (scratch that - just everyone, period!) would be best served by optimizing their nutrient status. then it remains to be assessed what else might be needed depending on case to case variations in severity/causality.

oh by the way sarah where do you tend to go for supplements? people keep saying Holland and barrett but I noticed a place called revital health shop, and from the looks of the web site it has a better selection of optimal supplement forms. thoughts?

[SarahLonglands]

Agreed but since I am of the opinion that MS is set off by a pathogen, namely the comparatively newly discovered chlamydia pneumoniae, if this is allowed to take hold, then it needs to be dealt with as well as the nutrition angle and C pn as discovered to be pathogenic only in about 1987 or so but my MS started in about 1983.

Ever since leaving home I have eaten a quite healthy diet and for much of this time I took zinc amongst other supplements, for menstrual reasons. It didn't do much for this but it did stop me getting colds all the time, like some friends!

I have always gone for taking anything in optimal doses, now quite difficult in the UK because the government thinks that we will all poison ourselves if we take too much of anything. I don't know about the Canadian Holland and Barratt, or even if there is one, but the English one seems to be following suite. For this reason and the still comparatively favourable exchange rate, I tend to buy supplements from the US: either Vitacost or Iherb. If you keep an order below a certain amount: I think at the moment about £60, you pay no import duty.

Sarah

[jimmylegs]

it would be very interesting to see more science specifically on nutrient status and risk of infection w/ c.pn. to date it's still a bit of a stretch trying to piece that specific one together but more generally there is plenty of research re nutrient status impacts on bacterial and viral infection. i think it's all fascinating

re the menstrual reasons, just out of curiosity do you mean cramping or..? how much zinc did you typically take per day? were you using any magnesium?

not good news about the dosing story is it. sadly i lean toward its being another case of govt in industry's back pocket.

we don't have Holland and barratt in Canada, i only know about it in the first place from UK TiMS members. you know i just imported one jar of Nordic berries into the UK via iherb, and had to pay import duty, PLUS the shipping company then doubled that extra cost for 'handling', and it was all because i went over the limit of just L15 >:( grrr

fyi sample link for revital - https://www.revital.co.uk/-Zinc__Copper_AAC - perfect dosage on that one, 50mg zinc and 2mg copper.

[SarahLonglands]

I agree, JL, it is fascinating, but I would guess my nutrient status was quite good and as for an infection, I was just in he wrong place at the wrong time!

As for the menstrual thing it was mainly vast blood loss: I could just about cope with the cramps. I think I took 50 mg a day, because I have never been one to stick to government RDAs. As soon as I discovered an iron supplement that didn't make you constipated, I gorged on it!

Sarah