Six and a half weeks

Feeling like I'm getting worse, I've been horribly depressed (although I'm over that now) a bit nauseous and weak and generally MSi fatigued.  I, initially, wondered if the abxi weren't doing their job, but, realised that feeling worse is still movement and that, although it doesn't feel good, I should probably blame (an oxymoron) improvement!  Hope my improvement improves soon!

Comments

You're definitely going to

You're definitely going to feel worse before you improve.  As the abxi and the bacteria battle, the result is inflammationi and a bunch of crud circulating through your system.  More water, more antioxidantsi and maybe 'moppers' (chlorophyl, charcoal) to purge the poisons.

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

Jane, it is worth bearing in mind that if

Jane, it is worth bearing in mind that if your CNSi had no bacterial infection, then taking antibioticsi would have no effect on it.  You will always go through the feeling worse before you start feeling better and some people get through the feeling worse bit quicker than others.  My feeling absolutely ghastly only lasted a couple of weeks, which I was glad about.  Then my roxithromycin arrived from France and I thought that I would have to go though it again, but I didn't: most of the crud came out the first time round!

Later on, I remember the day that I found that I was beyond doubt getting better: the first frost of that autumn, I got up at about half past seven and put my feet on the wooden bedroom floor and it felt cold! So I put my feet back in bed and tried it again: COLD!  I didn't know how long my feet had been without feeling: things just crept up on me...............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.

Supportive network!

hi Sarah,

it's a positive thing, to hear it won't be forever!

Hameldin messaged me and reminded me about charcoal! I can't believe I've spent a small fortune on supplementsi, but managed to forget charcoal! It's on order now!

and you're right, the abxi must be doing their job!

do you still stick to a strict regime? I'm sure you know how vital your recovery is to everyone here. 

thank you

Jane

MSi symptoms  begin 2001, DXi RRMSi<2008.  take interferons, on and off, until 2012  2010 9-12 monthly chemotherapy pulses to slow MS progression.  CCSVI March 2011. Wheldon protocol since April

A strict regime?

A strict regime?  Well, although I have not taken any antibiotics for years and years, I still take most of the supplementsi regularly, Vitaminsi D,C and B12 as methylcobalamin every day.

I also take high dose biotin, as in the French trial, usually either 100 or 200 mcg a day, which meeans 10 or 20 small tablets, because I can't be bothered to buy the sstuff loose and put it into capsules!  It takes many months to start working but it is now making my legs much stronger.

http://www.cpnhelp.org/biotin_and_other_b_vitami<

It also stopped me from needing to buy reading glasses, which I am very pleased about, because I am rather vain about my good eyesight.  Jane, this is why I thought that you might be wise to try high dose biotin, because many people whose vision has been badly affected by MSi are finding benefits: it just takes a long time!

http://www.cpnhelp.org/vision<

See what you think!

With regards to charcoal, I felt so weighed down with it that I eventually changed to about ten tablets of chlorella and I still take about four of these, most days.  If I ever felt I was declining I would be back on the abxi like a shot, don't you worry!.................................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.

1,000 micrograms = 1 miligram.

Sarah ...

I think that you may have made a typo there ... confusing the micrograms with the milligrams. Many people actually do end up taking thousands of micrograms of biotin and think that they're taking a lot ... when in actual fact, they're taking miniscule amounts.

The French experiment featured various doses but the dose that seems to have been adopted was 300 mg per day (milligrams).

Smile

G.

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

―    Abraham Lincoln<

Quite right there, SG. I take

Quite right there, SG. I take 200 mg a day: checked for typos!!  Everything is right in my  blog though!.............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.

Alcohol.

I'm about 8 weeks in and start metronidazolei pulses, a week Monday,  Good to learn you most definitely do not live like a professional patient Sarah! But take care of your recovery, as everyone here should,  to promote healing and avoid reblapse or re infection. On Sarah's advice, I take Biotin, but will hold off from taking it at very high dose until I've completed the capi, but, without a doubt, it has helped my sight! The damage, to my optic nerve,  is done, and I am so in love with my guide dog, I really don't need that to be cured! but I see colours so much more vividly, a real treat to see emerald green, new, grass. 

I thought I should tell everyone how alcohol has affected me. i used to drink regularly but found my resistance lowered, over the last year. I, mostly, gave up drinking, a week before beginning cap.  I've had dinner at friend's houses, without wanting a drop, but when two, very,dear friends  came to us, I decided I would drink whatever I liked, and felt fine, in fact, my tolerance has vastly improved, however, over the two days since, my condition  has regressed. I'm sure , I will improve again, but won't risk alcohol for a while.

MSi symptoms  begin 2001, DXi RRMSi<2008.  take interferons, on and off, until 2012  2010 9-12 monthly chemotherapy pulses to slow MS progression.  CCSVI March 2011. Wheldon protocol since April

Jane, please take care! 

Jane, please take care!  I started on metronidazolei after three months and you seem to be planning a much earler start.  I'm not saying 'don't do it' but you might find it much easier to leave it a while longer.  If it is because of planned holidays, well leave it until you return.  In my experience, starting an imidazole too early is lkely to make you give the whole thing up: it has happened to other people many times over the last several years.

On the other hand, as long as you are aware of the difficulties, you might well be fine: you know how you react to things normally, not me,  I would suggest though, that you keep your first pulse short, then you can always do the next pulse sooner if you find it easy.

About my single bout of optic neuritis, as I now know it was, I was looking out of our top bedroom window when for some reason I decided to cover each eye in turn.  The colour seen by my left eye were pale shadows of those seen by my right eye.  I was frightened.  After a few weeks though, the paleness had gone, because this was during my long relapsing remitting period and long before I started on treatment.  not since then have I had any eye trouble.  Recently though, and long after I had finished abxi I noticed that I could now read very tiny print in very dim light.  So was this due to taking high dose biotin or was it due to having got rid of the Cpni infection, but only now starting to work?...........................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.

I started full pulses at

I started full pulses at about the six-week mark of the protocol.  I slept a lot through the pulse, but it wasn't awful.  Jane, maybe try a day or two of pulsing first.  If that goes well, you can try three or four days in three weeks.

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

Metro pulse

thank you Mackintosh and Sarah,

yes, I was trying to plan around holidays, but I'm thinking again. Maybe I'll pulse for one day only, I don't usually react very badly to abxi, except once, when I was poleaxed by a bad reaction to a drug for a utii, so it could ruin my holiday, I I loathe sunbathing and like to be active, so maybe I should be more careful. 

Thank you, both, for your advice.

later the same day!

i've decided to wait until July, enjoy my holiday and let my husband enjoy his,  I guess die-off will start, for real then and I may react badly, although I hope not, but being home will be better if I do. You've made me think about it much more sensibly. Thank-you!

MSi symptoms  begin 2001, DXi RRMSi<2008.  take interferons, on and off, until 2012  2010 9-12 monthly chemotherapy pulses to slow MS progression.  CCSVI March 2011. Wheldon protocol since April

Jane, I think that is wise

Jane, I think that is wise, after other people's experience.  It didn't affect me at all the first time round, but the second time was a different matter!  I'm glad that you hate sunbathing and prefer doing things like I do, especially since the doxycycline might make you burn, so be careful about that.........................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.