Agatha's antibiotic log

A forum for the discussion of antibiotics as a potential therapy for MS

Postby agatha » Fri Sep 11, 2009 4:18 am

Sorry to hear of your sufferings Shaka - but it's good really isn't it - we'd be more disappointed if we weren't having any reactions - at least a reaction lets you know things are on the move. But that's difficult with a baby - I can only imagine how hard it must be for both you and your hubby - here's hoping for some good energy days for you soon.
A
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Postby LR1234 » Sun Sep 13, 2009 1:59 pm

I have so much trouble handling the flagyl. I can only do one day max! I have only done it twice I think so far. This time I am going to maybe do 800mg rather than the 1200 and see if I can make it past day 1!


You sound quite similar to me Agatha in terms of symptoms pre-diagnosis. I will follow your story and I cross my fingers for you that you have improvements x
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Postby agatha » Wed Oct 14, 2009 3:26 am

Phew! What a month. I had one really fantastic week when I had loads of energy and was able to cycle, walk and swim on holiday. The rest has been quite unpleasant die-off reactions.

However, there have been small changes - one of my colleagues noticed that I ran down the stairs at work - they are very steep and normally I take them slowly and carefully because I feel my balance and leg strength are unreliable. Also, although I have felt quite unwell with the herxing, my husband says that I am not like I usually am when I'm ill - usually I stop talking and move very slowly but apparently I am still chatting and moving at the right speed even on a bad day - so something is different. Also, I have been thinking about repainting my bedroom - I haven't actually done it yet, but even thinking about it has been off my radar for 4 years.
So far so good.
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Postby SarahLonglands » Wed Oct 14, 2009 5:17 am

Agatha, I'm glad you managed a fantastic week on holiday: it shows that better times are on the way.

When I was about eighteen months into treatment, I got rather careless with walking up and down stairs: I was carrying a half filled mug of soup or coffee back down to the kitchen when I misbalanced and slid down the last half dozen steps on my bum. Strangely enough, I managed to hold the mug without spilling anything, so I presume my balance was improving in some ways.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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16 weeks on the Wheldon protocol and how am I doing?

Postby agatha » Mon Nov 16, 2009 10:37 am

Well, I'm sixteen weeks in now (and have done three full pulses) and it has been a rough ride. I've basically been feeling dreadful since I started the five day pulses - nausea, headaches, vertigo weakness, flu-like feelings blah blah blah - everything you'd expect.
However, my brain energy has been consistently higher than before I started - I can read, talk and use the computer for much longer periods before I need a nap. I'm also waking up consistently earlier and feeling more alert than before and my noise sensitivity is much improved. Also, I feel less disoriented when I'm in a busy place.
Until the end of the last pulse, my brain felt much more peaceful - it always used to have a kind of bubbling or snapping sensation in there. This disappeared until I finished my 5th pulse a few days ago when it started again, together with a slight slurring of my speech. This is kind of scary as I haven't had slurring before - so I don't know whether I'm having a relapse or yet another die off reaction - I wonder if anyone else had this kind of thing? It is very upsetting as I was so pleased that my brain felt so much better previously.
I've also been having many days (it comes and goes) when my ability to go down stairs is almost back to normal.
So, some good signs of progress but the slurring speech is kind of worrying. I guess all I can do is keep taking the tablets, live in the moment and not think about the future too much.
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Postby SarahLonglands » Mon Nov 16, 2009 11:47 am

Agatha, everything seemed excellent until I came to the slurring of speech. It must be rather worrying. My speech had become very slurred before I started treatment but it quickly righted itself after a few weeks. During treatment and even beyond, if I am very tired or stressed it can re-appear to a lesser extent, due to the fact that new pathways are just that so are never as good as the original ones.

However, you say you didn't have slurring before: I had one episode when I had been on abx for more than six months, where I discovered on kneeling down that my left leg was completely numb up to and beyond the patella. Even though it didn't last very long, it scared me rather. I was due for another MRI a few months later and I wondered what would be found. Actually, there was nothing new at all and in fact it was the MRI when several lesions were found to have vanished. So I guess this could be a similar episode.

I have never been very good at living for the moment so I can appreciate your worry. However from my experience it might very well just be a minor blip. guess your work involves a lot of talking and if you are worried it will appear even worse.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby agatha » Tue Nov 17, 2009 8:03 am

Thanks for this encouragement Sarah - maybe it will be a blip. I am also encouraged by Rica's story - that she continued to have new symptoms for some while into treatment. Despite the slurriness, I don't feel nearly as unwell as I did before I started, so clearly something has improved. Also, typing this, I have realised that I am not making nearly as many typing errors as before.
I have resolved to keep cheerful. I think of each day as an orange to be squeezed. Some days are pretty juicy - you get lots of lovely sweetness out of them, others are a bit drier but you can still squeeze out a few drops of enjoyment if you're determined. Today is a dry day, but I suck a certain wry amusement out of the fact that last week I was warning my nephews about the dangers of excess alcohol and I now sound like an old alcoholic myself!
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Postby notasperfectasyou » Tue Nov 17, 2009 9:12 am

Agatha,
Sometimes I think the hardest part is the sense of perseverance that is required. I can't, obviously, speak to this first-hand. But given my limited ability to talk about it, it seems like ......

"WHEN YOU COME TO THE EDGE OF ALL THE LIGHT YOU HAVE KNOWN AND ARE ABOUT TO STEP OUT INTO THE DARKNESS , FAITH IS KNOWING ONE OF TWO THINGS WILL HAPPEN . . . . . . . THERE WILL BE SOMETHING TO STAND ON OR YOU WILL BE TAUGHT HOW TO FLY."


My screen saver. Peace and Blessings, Ken
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Postby agatha » Wed Nov 18, 2009 10:04 am

Thanks Ken. I take great encouragement from the journey you and Kim have travelled together.
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Stressed

Postby agatha » Thu Jan 07, 2010 3:04 am

Well, 5 months in and some good news, some not so good. I have now done two 7 day pulses and the die off reactions have been really quite mild so I think the CPN load is coming down nicely. My chronic sinusitis is pretty much gone and my sense of smell has returned. I have also lost weight without trying. Until yesterday, I was doing well MS-wise - but unfortunately a family member said some hurtful things and I got very stressed and as a result today, I have some new tingling in one leg - I'm very angry about this and I can't seem to dampen down my own stress response - I'm guessing this is due to some hypothalamic damage? Does anyone have any tips or tricks for this sort of situation - either for calming down (the usual stress management strategies of relaxation, deep breathing, cognitive reappraisal have failed to work) or for getting friends and family to be extra careful about generating stress?
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Postby SarahLonglands » Thu Jan 07, 2010 9:07 am

Agatha, my guess is that the tingling will just disappear an not show later as a new lesion. I did go through something similar when we we're being abandoned my some friends who thought we were mad. My left knee actually went numb, whereas my left side had never been troubled by anything. It lasted a few days then vanished after moving around to various parts of my leg. Only improvements were seen in my next scan.

I doubt if it would work to get people to be extra careful about generating stress: they might be o careful it would be even worse!

Your good news is good, though: I lost weight without trying and my sense of smell has never been better.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby agatha » Thu Jan 07, 2010 11:04 am

Oh this is very encouraging Sarah - I hope I will become less sensitive to this kind of thing as time goes on. My legs have undoubtedly been stronger and less tingly for some while now so the general trend is good.
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Postby agatha » Mon May 03, 2010 10:51 am

Hi everyone
I have been out of action since January due to SAD but now that spring is here, up I pop again - it is nice to read everyonhe's updates.

I have now been on the Wheldon protocol for 9 months and here is my update:
The SAD always knocks me for six during the winter so I have to try to compare how I've been with the same time of year in previous years. Overall, I'm undoubtedly better than this time last year. My legs feel almost back to normal - I have very little tinglling and I can run up and down stairs without holding the bannister and without even thinking about it. Last year, I was at the stage where I had to think about each step, particularly going downstairs.
My brain is also more resilient. This time last year I was struggling to use the computer or read much and I couldn't talk for long - my legs would begin to tingle if I tried to keep going with brain work. I stopped going to church for several months because the noise and the strain of talking to friends was so exhausting. Now I can read for qwuite a while and I have started going to church again. I am still sensitive to noisy and overstimulating environments (especially busy shops) but I am much less sensitive than I was before.

The weird feeling I used to have down the back of each arm is greatly improved, even when I get tired it's not too bad.

The over sensitive reflexes in my knees are better too though not really normal as yet. Also I am less sensitive to flashing lights on television - they used to produce an exaggerated startle response.

I think my complexion has changed colour too - I used to wonder why I always looked a horrible greyish yellow colour - my skin tone has become pinker and healthier looking.

For several months my sinus congestion (of 20+ years duration) was completely gone. Unfortunately, i caught a new sinus infection in February and this has not yet resolved and that is making me feel a little less well.

I continue to have some issues with chronic UTI - though a combination of D Mannose and prayer has greatly helped. This makes it difficult to sense how my bladder function is doing as the infection itself impairs bladder emptying. this continues to be an area of concern.

I remain quite low on stamina and energy compared to well people - I don't know whether this is because of remaing chlamydial infection, other occult infection or merely the result of multiple sites of brain damage (although I'm not very disabled my MRI showed multiple lesions). Anaerobic exercise in particular seems to set off my sinus issues and produce extreme exhaustion and aslightly MSy kind of feeling. I can walk for a fair time (45 mins) at a slow pace without problems but even a few minutes of vigorous housework makes me feel quite unwell (haha good excuse not to do hoovering!). I would bne interested if anyone has any opinions on this point.

It's nice to be back in action again.
love to you all
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1 year update

Postby agatha » Tue Aug 24, 2010 12:11 pm

Yo ho ho! I've been on the abx for a little more than a year now. How am I doing? Pretty good since you ask!
I feel a hundred times better than before I started - cognitive impairments have improved, walking is back to normal, tingling in legs has disappeared even when tired, visual oversensitivity is much better, balance is improved. Functionally this means that I can work more easily, have energy to see friends and can watch TV again. I have also been shopping without becoming ill afterwards. I have also lost the sense of being constantly cold and slightly feverish which I have had for many years. People tell me that my complexion is a more healthy pinkish colour - used to be yellowy grey.
What remains? My reflexes continue to be quite oversensitive (although the l'hermitte's sign has softened). I have had two little blips triggered by the flu jab and a UTI (slightly slurred speech for a few days and finger twitching slightly) - I don't know whether I will always remain vulnerable to symptoms when I get new infections. My exercise tolerance also remains quite low - I can walk a long way but I tend to feel ill afterwards especially if I exert myself.
On the whole though I am much better and I can once again function well enough to enjoy life. Of course I don't yet know whether this is a random fluctuation in the disease - I hope not but I take it one day at a time like everyone else coping with this illness. I am going to undertake some longer pulses - the herxing is much less dramatic now.

Hope this encourages someone..
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Postby Tony » Wed Aug 25, 2010 2:41 am

Thank you, Agatha, yes, this is really encouraging! I have been in the protocol for only 6 weeks now, no pulsing yet, but have clear die-off reactions on the one hand and incredibly good days on the other hand. I will start a threat on my way once I see more clearly how things are going on.

I'll do my first pulse in mid september and am a bit scared of the herxing, having an EDSS of 7 this can hit me very hard, but the good days feel so great that I MUST try!

Best whishes for you!

Tony
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