no results at all
Hello,
I'm on CAPi for almost a year now.
I started with minocycline, switched to doxyi, use azitromycin and had 10 pulses with 1000mg flagyli a day.
My decline does not change a bit and I think my progression increases, maybe due to abxi side effects (candida?)
Without a tiny sign of change I can't continue for another year, it's a black tunnel for me without a single light.
Is this recognizable for people who gone thru this phase. Is it a phase or do I have to be aware of the fact that it could not work for me?
I need honest advise!!!
Thank you
Tamara.
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Hi Tamara,
I'm new to this so i'll be of no use but i'm curious for more info about your expertience. How have you tolerated the antibioticsi and the pulses? Did you blog anywhere? Are you on a diet of any kind? What moppers and supplementsi have you used, etc?
Very sorry to hear nothing positive has happened for you and I hope the CAPi sages can help you xoxo
M.S/CFSi '00, CAPi 02/12. Doxyi, Azith, Metroi, Naprox, NACi + every supp under the sun + Myhill methyl'
Tamara
As usual, I have a bunch of questions. Are you on the supplementsi, especitally NACi, Vit D, and the other vital ones listed on DW's site? We don't know what you are battling or how long it has gone on.
My feeling is always, before someone quits and says it did not work for him or her is to go to the big guns and do the whole five abxi protocol of Dr. Stratton - the original protocol. If you live in the US, have your doctor call Dr. Stratton. He is very kind and will speak to your doctor.
It would be very helpful if we had more information. Maybe I simply overlooked something. If so, maybe someone or you will point me in the right direction.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
This certainly sounds familiar to me and yes it is a phase, in my case it was a b. long one too. Looking back I slept a lot in the first year probably because I was exhausted. CAPi treatment is a hard road and it is often accompanied with the nagging thought that maybe it isn't working for you. I think that the first impovement for me came when I noticed that I was no longer travel sick as a car passenger - so long as I sucked crystallised ginger that is!
Now ginger is no longer needed, even for a 300 mile trip - buts that's after nearly five years of abxi. What has really helped me to carry on is switching to Tinidazole instead of Flagyli, it does not have the same depressive effect and it's only taken twice a day.
Candida is always a danger, I have had to stop abxi to clear it up for a few weeks but after discovering Kolorex (which is based on a herb which only grows in New Zealand) it is now under control.
I suspect that I first contracted CPni in my early twenties and as I am now in my early sixties it seems entirely reasonable to me that I wasn't finished within a year. You just have to be a pragmatic stoic because with MS it is really the only game in town.
Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Water kefir. Pulses- a lot!...I can because I think I can.
Rica, Tamara is PPMSi.
Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Water kefir. Pulses- a lot!...I can because I think I can.
Yes Rica I use all supplementsi. I changed my signature with info but it doesn't appear in old posts :/ Hopefully now it does :)
So have you really had no hints at all? No terrible times or chinks of feeling something new/different?
M.S/CFSi '00, CAPi 02/12. Doxyi, Azith, Metroi, Naprox, NACi + every supp under the sun + Myhill methyl'
Well, MSmom has given the reply to end all replies in your other current thread but what I want to add is that if you really have candida or some other bad yeast issue, you really must sort this out before you know whether the treatment is working or not. This means being very liberal with the probiotics, whether in the form of live yoghurt, kefir, acidophilus capsules or whatever. You must be careful to take any of these two hours apart from any antibioticsi. Once this is sorted out you will be better able to think whether the purely neurological issues typical of MS: the clonusi, the spasticity, the over active reflexes and so on are better or worse. If you find them a little better, that’s good but even if you find them just the same as before, but no worse, then that is a start.................Sarah
A Journey through Light and Shadow
I think maybe you are worse because of the die off and all the toxins recycling in your body. I am way worse then I was but I do not believe it's progression, I believe it's from killing the bug. Is there no glimmer? Less spasticity at night, your a little more alert, better bladder controll sometimes-or maybe you have pains/strange feelings where before there was only numbness? I catch myself (rarely) grabbing something with my right hand without thinking, I havent been able to do anything with it for a year and I still cant do much but I never even tried before. Maybe you could get pills for the yeast? I had to twice. Do you feel alittle more alert or like things are a little brighter? This treatment is miserable and the only thing out there with any potential to help-please try and hang in there. A glimmer, or more, maybe right around the corner. I am amazed youve done 10 pulses. I've only managed 1 full one and it'll be a year for me in June. I hear things dont start to seem better for 16-18 months, which SUCKS, but you've made it this far so obviously your strong and not a quitter. I sympathize but really this is the only choice except to be bed bound or follow advice from the Hemlock society. There are a lot of people on this site who care about and pray for you,my mom (MSi MOM) and I are behind you cheering for you-keep up the good (hard,sucky,frustrating, sad) work and I bet you start to reap the benefits soon!!!!!!!!!
Thank you! Yes I do have the strength to go on, but not for years without a good tiny sign that I'm on the right track, but I assume you all understand that and have been thru this period of doubts. I think I take some more time now between the pulses to let my body 'recover', 3 weeks if possible too short for me. I'm always alert on my symptoms and I must say that all my ms symptoms are getting worse in the same speed as before the capi. What I do notice is when I feel tired in my neck and arms (new symptoms) and I drink a lot the tiredness disappears for an hour or so and feel better overall. I had that a couple of times now. I must say that drinking works better between the pulses and not during the flagyli what I should expect. Is there any advise according drinking and detoxing possible die-off issues?
Cute and true! Written by one who knows. Yes, it was a good sixteen monrts before I got ANY glimmers at all. And the only thing I had was about five minutes of a little fog lifting and not as much aching numbness - and then it happened again in about three weeks. Finally, I realized it was when some of the flagyli recovery happened. Of course, by then it was time for flagyl again. BUT...it was doing its job.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
What R U drinking? And what is the Best Bet Diet? Thanks!
The best bet diet is a diet developed for people with MSi, it eliminates common allergens that often trigger attacks on myelini. Similar to the MS Recovery Diet. Personally, when I was first sick and had no medical help, I found it helped me hugely. My symptoms greatly improved from diet alone and I still follow it and notice relapses if I cheat. Still, everyone is different. Some people will say it does nothing for them. It can sometimes take a fair while to notice a difference if you've had MS for years.
Here's a brief outline if you're interested.
http://www.direct-ms.org/bestbet.html
:-)
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
Oh, and please say you're drinking vodka or some such alcoholic beverage.....would be great if this was the answer to feeling better! ;-p
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
Check out Wahls diet, it's similar to BBD but minimizes grains and encourages red meat and liver.