Started Wheldon CAP

Niko · Posted: Wed Oct 18, 2006 7:29 am Post subject:

CoB,

I was on Amantadine for about a year for the fatigue. Then added Provigil to the mix for another year.

For awhile the combo worked and then lost effectiveness. I've now given up on both of those and am now on Ritalin-SR.

I started that two months ago and quite please with the effects so far. Brain-fog is very slight.

I wish you well and good luck in your efforts to combat your fatigue!!

-- Niko Cool

_________________
"Avoid making irrevocable decisions when tired or hungry." -- Robert Heinlein

mormiles · Posted: Wed Oct 18, 2006 10:17 am Post subject: Amantadine

Hi Sarah, Thanks for that information on amantadine. Steve has already been taking acetyl L-carnitine for months, and it proved to be more effective than the provigil he had been taking. Fatigue is not the main reason Steve's doc is prescribing the amantadine, though, it's for the antiviral benefit along with the valtrex. Steve is blessed never to have noticed any of the mentioned side effects. That's not to say that they weren't there, but that, if they were there, they blended into the existing MS landscape too well to detect or that they were nullified by other medications.

One particular side effect listed interests me very much: insomnia. The doc prescribed Lunesta from the beginning since poor sleep plagued Steve's nights. Also, insufficient restorative phase sleep in MSers and the resulting deficits are an area of focus for this doc. I have to say that the improved sleep Steve is getting seems to help. Anyway, as Steve gets better, we occasionally will be testing the sleep issue by abstinence from Lunesta. The information you provided indicates a shift from taking amantadine in the evening (as he does now) to the morning. In any case, these antivirals are in his life for only 6 months---2 down + 4 to go.

Sarah, your perspective and mine are not as divergent as you might imagine. I think that most if not all of Steve's non-Cpn factors would eventually improve greatly if not completely normalize on the Wheldon protocol alone by virtue of the normalization of immune function and glutathione levels achieved by conquering Cpn. If you recall from prior discussions on CPn Help, there is a communal wish for finding ways to make the protocols kinder and gentler. The route Steve is taking just might be a kinder and gentler way, and actually, if others could avoid the setbacks caused by viral outbreaks along the way, it might prevent them from losing faith and flaking out on the protocol. I think the 1-week course of fluconazole before starting the CAP was a smart move too. Also, those with elevated concentrations of heavy metals could enjoy the full benefits of being on a CAP more quickly if they were receiving simultaneous chelation therapy. By addressing these other issues directly while also on a CAP, the entire protocol process might move along more quickly than it would without the extras, as the overall health of the MSer wouldn't be so taxed by those other issues. Thanks again,

Cypriane~caregiver and advocate in Dallas for husband with SPMS

mormiles · Posted: Wed Oct 18, 2006 10:56 am Post subject: Fatigue

Hi CoB, The acetyl L-carnitine proved better for fighting fatigue than provigil. Sorry I can't recall exactly what I read or where I read it (so keep that vagueness of this hearsay in mind), but there was something I learned about provigil that scared me away...something to the effect of nerve impulses going into overdrive and nerve cells firing themselves to death. I wish I could say that an effect of amantadine on Steve's fatigue was clearly demonstrable, but I can't...too many other factors in motion. I can only tell you that since two months ago before the antivirals, antibiotics, chelation, and the sleep aid all started, the fatigue issue has greatly improved. It has a long way to go, but it's so much better. It's entirely possible that amantadine is playing a part in that improvement.

Cypriane~caregiver and advocate in Dallas for husband with SPMS

Anecdote · Posted: Wed Oct 18, 2006 11:55 am Post subject:

Cypriane,

I don't know what Lunesta is, but I found I got a beautiful night's sleep just by taking one or two melatonin tablets. It also is a very potent antioxidant, but the sleep is very natural and the tablets not at all addictive. I don't really need to take anything, now, though, but often still do because of its antioxidant properties.

As for fatigue, this becomes less with a restful nights sleep, but as well as the l-acetyl carnitine, 200 mg of Co Q10 and several 5000 mcg tablets of sublingual B12 will help enormously. B12 is completely non toxic so you can take as much as you want, and people with MS do need more than the average person.

As for a divergence of perspectives, maybe not, but I just know that from a starting point of not even having been initially tested for CPn, then being found to have nearly negative serum levels, My nearly total improvements have come just from doxycycline, roxithromycin and the odd pulse of metronidazole thrown in. Plus a much more limited range of supplements than people are by and large now taking. I must have been carrying ebv antibodies, nearly everyone past their teens does, plus several other viral antibodies, but I can't say they are causing me any problems. The only weaknesses I now have are a few long term deficits from CNS damage: I can't walk 20 miles any more, but I can walk enough to get by, which is probably further than most people. I will probably carry on slowly improving from this. I can paint all day, my balance is good enough to climb ladders, stand upright with my eyes closed and so on. I couldn't do any of this three years ago. I can't say that either carrying on CPn treatment full-time or adding antivirals is going to help any of this, so despite what you, David or anyone says, I still say "keep it simple" because I can't be so different from anyone else.

Sarah
_________________
An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.

Anecdote · Posted: Thu Oct 19, 2006 4:02 am Post subject:

I think there was a bug in the system yesterday: I posted the above, but it doesn't register on the main Antibiotics forum, so I'm trying again.

Sarah Confused

_________________
An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.