10 Dec 2018
Author
Sarah
Title

Hello, is there anyone there?

Body

I feel like I am talking to myself!

Comments

We aren't going to be able to make the site the vibrant place it was ten years ago unless you all take part!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I'm still here! Do you see what I mean, though, Sarah, about the title of a thread - in this case "Hello, is there anyone there?" - not showing anywhere when you open the thread?

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

I am still here, too, Sarah. And still as certain that I am walking around breathing because of this site. We - Richard and I - hope you and David are well.

We still have our goats and were recently notified that we have a "Historic Herd" name. That would not have happened without this. No one can ever use our name again. I thank David and Dr. Stratton in particular and many others who have been so positively involved.
Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Rica, so now I know what "Historic Herd" means! Well done to both of you: maybe Mac and I should try to build a Historic Herd of cpnhelpers!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Yes Bo, I do see now, but we will have to put up with it until after Christmas now, because Pinky has gone to get married and I wouldn't like to accidentally bring the whole site down! I will make it top of the list when she returns!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Haha! So I m definitely not alone!

A Christmas treat: David and I are buying a decent sized site, to be installed after Christmas by Pinky, not that she knows it yet because she is away getting married.  This should cure a lot of problems of the last few years.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I am here too! Greetings to all of Prague.

On CAPs:12/01/2005 till March 2013; 20 years CFS,IBS, fibromyalgia; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension... 

Hi, everyone!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

eclipse

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

And I can put up pictures, but I must wait until we get more space and can retrieve some of the old ones that Sureserve deleted!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I am still not able to figure out the new site or how to post...It is probably brain fog and my inability to learn anything new right now. I am not doing well back on the protocol, which I first began 21 years ago. I am older and more infirm I guess. Sarah - if I remember correctly, when you began the protocol you had trouble taking the Azith more than about once a week or so..otherwise you got some pretty severe herxing or die off? Is this correct? I am okay with my amoxicillin BID but the Azith more than once a week wreak havoc on my digestive system among other things. I am doing well with the supplements, which I never stopped

Hello Astrodiana: you have managed to post this comment, so you can't be that brain fogged! As to me and the protocol, I didn't take azithromycin at all: I took doxycycline and roxithromycin. My first two weeks, just on doxy, I don't remember that much fully, but then I snapped out of it, much clearer in the head and eager to carry on, because something was obviously happening.

I think you must have me muddled  with someone else, but many people find the sort of difficulties which you mention.  You might find it better to take roxithromycin instead of azith.  I found it very easy to take and never had any trouble with my digestive system.  

If you are taking NAC, you don't need to take amoxicillin, because they are both included in the protocol to take care of elementary bodies, so dropping that might make it easier for you.

Also, when you move on to pulsing, try tinidazole rather than metronidazole (flagyl)  because tini will certainly be easier to take, helping you avoid depression and so on.  When Vanderbilt first started the protocol, tinidazole wasn't registered in the US, so Stratton couldn't use it, but now it is and he often recommends it to people.

 

Don't talk about being old and more infirm: you have been through a very bad period, with the death of your husband, but now is the time to restart the protocol taking all the stages of the treatment this time, and who knows, but next Christmas you might well be back to your old self!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I will try roxy..it is a little known medicine here in the US as far as I can tell. I never took doxy on the protocl, but I could also add that. In the past, the amoxicillin was always something I could not only take easily, but felt so good taking - felt better on amox than off for many years. And I loved the apparent benefits of the Azith (I used to take 500,mg thrice weekly)..but now I have been thru a lot, GI issues and ulcer, finally got off of the coumadin, etc. I took the NAC only once lately for a week and hated the 'NAC flu' so I opted to go with the amoxicillin, hoping that as time went by, the NAC would no longer affect me. I will keep plugging away and brainstorming with my doctor. Yes..its been very hard without my other half...very difficult to find the will to go on.

Hi there, Astrodiana!
😊
It seems like it's been a little while since there was any serious talk about medication regimes on these pages now. I was a little surprised when I read that you had not yet taken any doxycycline. From my understanding, doxycycline has been at the very heart of the protocol that I have been doing. I have been taking doxey for five and a half years. I used to take roxithromycin but after about 3 years I switched to azithromycin. To be honest, I don't think that there is very much difference between the two. The protocol that I was following stated that the dosage for azithromycin was 250mg thrice a week. I stopped taking rifampicin about this time last year.

As you can imagine, over the years that I have been doing this antibiotic regime, I have discussed it with different people many many times. A point that I would consistently make to those contemplating doing this, is that if they get the classic NAC flu, then this is definitely the one for you.

Anyway, I wish you good luck with whatever you do.

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Astrodiana, could you please tell me what your protocol will consist of? Azithromycin or roxithromycin, yes, but what will the second antibiotic be? Amoxicillin is only something to take care of the elementary bodies. Also I hope that you will be steering clear of rifampicin, at least for a few months!

Supaguy is right about NAC: nac flu certainly means that NAC is needed.  It won't last forever!  

Then, in a few months time, we can discuss metronidazole!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I noticed Trent was logged in here a while ago. I'm really hoping that he and Supaguy have not forgotten that they promised me a date at the top of a lighthouse. I'm still hoping...

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

😲
Forgotten! What kind of supaguy do you think I am? Do you not realise that it is marked on my Google calendar every single day?

"As soon as you are well enough, pic
up Boadicea before picking up Trent
and heading down to Dungeness.."

The weather is not exactly great at the moment and Dungeness is a rather windswept and desolate place at the best of times.

I do happen to know that Trent has been experimenting with CBD oil. I was in communication with him a while back and hooked him up with a couple of CBD sites / Facebook groups.

I gave CBD oil a try myself but no miracles came about. So it seems that I will be relying on you Boadicea, for a piggy-back at the lighthouse at Dungeness. And as a reward, you can sit next to me on the narrow gauge Dymchurch Railway.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

I'm glad that it is approved at last, not least for epileptics. I thought you might try it and I'm glad that Trent has.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Happy to oblige with the piggy-back, Supa, as long as you bring the picnic 🙂

Give my regards to Trent, if you speak to him. I find CBD oil really helpful for sleep, when getting to sleep became a bit of an issue.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Once you have clicked to reply is there a text format window? If there is, click onto full html. If it is only for admin, I will tell you later. Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Until we can get the site to make them, here is how to make paragraphs: type p/ surrounded by a pair of angled brackets: <…….> Then press 'enter' if you want to make a wide paragraph, or leave it if you just want a small space.

Press save and this will disappear to be replaced by a paragraph break, like here.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Type

< then P then > with no spaces.
And what a pain in the arse doing that is. It reminds me of many years ago when I first had a Samsung phone from Orange. It looks really good. You pressed a button on the side and the bottom fliped down like something out of Star🌟Trek. The only thing was, when sending text message, it required to let key presses to insert an apostrophe. I sometimes even resorted to using a comma instead; it was just so long-winded and laborious. I felt that I would never get any other phone but a Nokia ever again.
(Typed out on my OnePlus 5T)
G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Well, I got them working once but then the short-lived Yorkshire man vanished them. I think I could do it again but I would prefer to leave it until Pinky comes back from her wedding celebrations after Christmas.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.