New here, will start treatment soon

Hi,

Recently I was diagnosed with MSi. 5 years ago the first 'attack' came shortly after a CPni infection. which was treated with normal antibioticsi. At that time the neurologist spoke of a clinical isolated syndrome. I got better really fast and thought the infection didn't have the chance to spread. Now the symptoms are back and MRI shows a few more spots. I feel I need to start the CPn treatment and would like some advice preparing for this. What can I expect? How do I prepare myself before starting? How do I adjust my diet?

I'm 37y, female.

Well hello antwerpen, I see you finally made it through the current barriers!  As for preparing to start the treatment, there will be nearly as many suggestions as there are members of the site, but my suggestion is just to start taking the bacteristatic antibioticsi as soon as you can obtain them, as I did.  I didn't even start on NACi and  build up to the antibiotics, mainly because this was thirteen years ago and NAC was not part of the protocol.  If you read my entry in Patient Stories you will see that I suffered a few days delerium, which actually was a help because it made me reealise that something was happening.  After a few weeks friends were commenting on how much better I was sounding and I was starting to make my first rather scratchy efforts oof painting again.

As for adjustments to your diet, unless you have been in the habit of eating very badly, there are no real changes needed.  At the time, Vanderbilt recommended a high carbohydrate diet, but I found it just weighed me down, so I ignored it.  I took all the supplementsi recommended on David's MSi treatment page, paying particular attention to vitaminsi D and B12 and I still take most of them now, although I have cut back on quantities a bit.

If I think of anything more to add, I'll let you know, but in the meantime, I will wish you all the best with the treatment.........................Sarah

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

Hi antwerpen,

Welcome here. As for the diet, my doctor recommendet gluten free diet. I was on it for 4 months and it literally knocked me down. So, now I even eat gluten but not to much and I make sure to eat the healthy version, that is mostly high fiber whole wheat breads and pastas. You may hear many recomendations to go gluten free but to me from my own experience it didn't bring any positive effect as for starvation of the CPNi. On the other hand I've heard that if you are not gluten intollerant, the gluten free diets may trigger also diabetes and cause other problems So, in my opinion it's important to have gluten but not overeating it and very important is to take lots of high fiber meals.

Wishing you good luck and get well soon.

Success is journey not destination

Hi Sarah,

Thank you for your response. The supplementsi are on the way. Our doctor is willing to guide me with this treatment and write prescriptions for all necessary antibiotics. I'm already taking the vitaminsi and NACi. Will probably start treatment with abxi next week. I'm pretty nervous... Not everyone is willing to take abxi a whole year and longer.

Recently diagnosed MSi, will start CPni treatment soon. Any advice is welcome.

My goodness, did I hear you right?  Maybe I should suggest a mass migration from the UK to Belgium!

I guess that if your doctor is willing to guide you through the treatment, he/she will make sure that you take probiotics every day, two hours apart fromm the antibioticsi.  I was pretty nervous as well, and quite honestly didn't think it would work, but with me, evidence showed very quickly that it would.  I normally am an optimistic person,  but soon my optimism was well-founded since everyone I spoke to said how much better I was sounding aqnd shortly after that, I was actually able, first, to hold a paintbrush again, and then, bit by bit, to do something with it.

That first year will pass quicker than you think!............................Sarah

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

That’s good news! As Sarah says, probiotics are useful in maintaining the gut flora while taking antibioticsi.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Antwerpen,  I can relate to your viewpoint.  I wasn't exactly 'willing' to take antibioticsi for a great length of time, but I WAS willing to do anything at all that would stop my very rapid decline of cognitive and physical abilities.  So, a year of antibiotics turned into half a decade.  And, while I resent the heck out of having to take a handful of pills for any reason, I would still take them daily for the rest of my life if I needed them, to ensure my quality of life.  (This, from the girl who would refuse aspirin for headaches and who threw pain medication away after knee surgery.)  Cool

My priority was regaining my life and I decided I'd reserved the use of medications all my life simply so they'd BE there and be of benefit to me when I needed them most --- and in 2005, I needed them for the biggest, baddest infection of my life.  So, take your meds as long as you need to, then you'll have your life back and you can live it the way you choose to, not the way this damnable disease dictates.

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

Sylvie, how are you feeling now?  My bad period after starting antibioticsi lasted maybe a week but then the following year or more was mostly gradual recovery...............Sarah 

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

Hi Antwerpen,

i'm quite new here, also, and I'm so glad you're taking steps to improve your situation. Sarah was DW's first success story and her advice is good. Take the ABXi as soon as you can! British GPS are scared of resistance and have been advised they could be 'struck-off' for prescribing  ABXi, but they don't all agree!

all I can add is that you definitely should avoid gluten, if, like me, you are intolerant to it or have Coeliac's disease - it will trigger the immunei system.

Also, Sarah warned me I'd feel worse before I got better, and I really, really do! it's good to know this is normal! But the earlier you are in your condition, it seems, the less severe this will be.

good luck!

MSi symptoms began in 2001 DXi RRMSi in 2008, following an MRI, precipitated by some sight loss, Interferons, on and off, until 2012. New consultant prescribed chemo infusions, to slow progression.

Hi Antwerpen!

I have an excel which helps me organize the antibioticsi and the 'polipharmacy'... I add the antibiotics and NACi progressively, as Dr's Wheldon and Sarah advised. 

I just started the 1st of June, and going to my second month... :) 

I tried to upload the excel sheet, but could not find the way. I have it in Google Drive, so if you know some way for me to share it with you and you think it can be useful, do not hesitate asking for it. :)

About the diet... I just keep it simple and avoid processed foods. 

Ow! my advise... buy a 'PASTILLERO', it makes it quite simplier to plan the weeks. ;)

Gisel.la

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.