JaneK's blog

Some improvement!

I'm killing time, so will tell you about the news from my guru! i'm very superstitious, so waited a while to share, besides which, I've been feeling terrible....! Julia massaged my leg, helping my drop-foot, which feels like it stems from my knee. Both legs are affected, the left is the most bothersome, and the problem is intermittent, but, extremely, frequent. However, I slur less and less, in fact now only slur when I'm shattered. i've seen Julia, as a herbalist, masseur and friend, on and off, for a few years now. When my husband saw her last, she confirmed what I knew, that of her MS clients I'm the only one who's improving, that I haven't degraded in the time she's known me, that my speech has become clear and that I'm doing something right!

Mylan, New Zealand

How daft am I?

How daft can I be?  On Friday I finished what, I think, was, actually, pulse 5, but I'm not sure and need to check my diary, when I'm not cuddling my injured dog, whose happiness  is more important than counting!  But, with the need to test for myself, against advice, on my birthday, I had a couple, only a couple, of drinks, while pulsing Metroi. For anyone else who needs to find out for themself, drink at home, ill effects weren't immediate, but fairly quick. I didn't throw up, but I could have done! I felt nauseous and exhausted for a couple of days. I'm realising that improvement, for me, really is incremental, but it's there. I'm sure I'll step back again, but every good day tells me that I'm on the right track.

P

Pulse 4!

Nearly done! Two more tabs and I get three weeks off! And, yes, it has been tough, as DW and Sarah warned me. I've been much better at taking my ABXi on an empty tummy. I lost so much weight when I was first diagnosed, I was very skinny! But, 10 years later, I'm putting weight on, maybe too much, but I've a feeling it's good, and I feel sure, I'll be walking my very loved guide dog, soon.

It goes like this ...

I pop Metroi as soon as I wake and again, about, 8 hours later.  The third, again, 7 or 8 hours later, just before bed, taking Roxyi an hour, or so, before tea and Doxyi, after, and supplementsi then, although I sometimes forget, but always take Bs.

NAC and massage - updated

I've been lucky, I've had reactions, but nothing too terrible.

The Fallout

it’s been a fortnight since i finished pulse 3. After effects were nausea, fatigue, more fatigue, exhaustion,  more aching, basically, every reason to jump off the world. Then it, suddenly, felt so much better! Today, my drop-foot was quite severe, but, as Paul was there, to lean on, i still went for a long, long dog walk. I ache, as much as  before, but, really, that isn’t too much. Sleep has been elusive, i have drunk a little and blamrd that, but I had to drink champagne, at a funeral, two days ago, and, still, felt good  yesterday! i’ve  had night sweats but,  at 49, i think that is probably to be expected!

Pulse 3

Finished pulse number 3 yesterday, it wasn't a walk in the park, but nor was it too difficult. Yesterday I was more awake than for ages, but, slept dreadfully last night, so i'm tired today and our long dog walk, on the beach, exhausted me, i ached (strangely, n my arms,hands and and elbows) but, again,not too much. I haven't had the CPni test, and won't, for the same reason haven't asked for an updated MS dxi ... suggestion!  I don't think many of us here are 'victims', just people carrying their crosses with as much grace and humour as possible. And i'm looking forward to a drink tomorrow night!

Jane

Reaction

The day before yesterday I walked home, an easy peesy walk, wearing my ruck sack, which had very little weight, but some. As I reached the end of my street the weight threw my balance off, so I couldn't help but stumble backwards into the road and fall. Thankfully our quiet road was empty so, having righted myself, I continued on my way, staying close to the wall and now I take hubby out with me. I've always been very, very strong and capable and walked fast, but can't now,so this scared me, and convinced the neighbours that I'm a boozer! I began pulse 2 today with a little trepidation but realised my vibrating ear drum has been quiet for a few weeks, so I'm feeling it willall be worth it, just take David's advice, to be careful of falls, seriously!

Link to DW's herpes simplex theory

Can anyone tell me where the entry, pith the link to David Wheldoni's piece, coming down to his conclusion that chickenpox is not causal in MSi?

Thanks

Jane

also, I realise I've posted too much! Sorry!

We shouldn't blame the ABX!

So strange to say that feeling dreadful, nauseous, weak and tired, as I do today, reminds me that I'm only four months into CAPi, but haven't felt this way since I began, whereas I often felt this way previously!  I have drunk alcohol, although not much, and have been to several functions, involving a bit of travelling. Maybe I'm being'Pollyanna-ish, but isn't that better than the alternative?

First pulse

Two tabs more and my first pulse is done! I've been lucky,  although I may not be, in future! I've been, a little, nauseous, I've been tired, but not horribly fatigued, as before, my remaining sight has been dreadful and my, already dodgy, leg turned to lead! And I've laughed at It all! I have also felt invincible! Doing something positive is so much more empowering than just allowing MSi to do its worst! CPNi is cruel, self-worth is powerful And good!

Over 3 months. - your experience?

it's been more than three months and I start the third ABXi next week. Overall, I feel OK, but my heat intolerance and functional weakness / dropfoot.iinmy left leg, seem worse. What are other people's experiences, at this stage?

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!

20 days in!

It's been nearly thre weeks, I'm taking Doxyand Roxyi and some supplementsi, including NACi.

I've been taking my ABXi twice a day (Doxy after breakfast and Roxy 12 hours later), but today I've decided to take them together, after my evening meal, remembering that they multiply in strength, when taken together, but I don't know if this means concurrently!

A few side effects, but nothing to write about and nothing no-one else knows!.

Sarah warned me to expect my early  progress to unravel, and it has, it 's good to know this is normal.  but what could be more onerous than the permanency of MSi disability? 

Jane

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