How did you feel?

Submitted by JaneK on Thu, 2018-01-11 13:23

pulse 7 is, by far, the hardest yet! i haven’t measured my BP, but i feel very faint and tired, my breathing is not easy and my shoulders ache. If i were a quitter i’d stop, but i’m not. I know Sarah described her fourth as the worst and i know we’re all different, but could anyone tell me their worst?

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.

Thanks Sarah,

despite feeling a bit lousy, i just managed a decent dog walk, but Paul picked us up, as he was passing, i’ll wait until i know i can walk it alone to take NAC, besides which, i’m hoarding it, in case the influenza trespasses on us!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Hey Janet ...

You're going through it. I hope that you've not forgotten to flush away all that gunk with plenty of clean, fresh water. Moppers: do you mind if I ask what you are taking?

I did start my response to your agonising post with the word "Sorry" but I crossed it out.

A couple of hours ago, I took my penultimate tini tab of my 48th pulse. Do I feel awful for it? No. Do I feel like I have really been through the mill because of it? No. Am I dancing the fandango? No. Would I swap places with you? Yes, I would indeed!

I am currently waiting on a delivery of NAC. At the moment, I am out and am just doing without. When they arrive, I shall go straight back to 240 mg a day. I already know that I won't feel a thing.

My point to you is that these effects that you are feeling is a pretty good sign; or at least a sign that it is doing what it is supposed to do. It is a sign that you actually have the infection which you are treating. So long as you listen to your body and treat it with kindness, you should do fine. I have never read the site rules of cpnhelp.org but I am pretty sure that there'll be no rule that states that you can't ease off ... or that you must pulse on time. The pulse police are not operating in your area.

I will leave you with these words. Envy is one of the seven deadly sins. I am definitely a sinner. I never had to endure the wrecked and exhausted feeling that you are currently experiencing. Some may say I was lucky. I never really had the positive confirmation that you have had.

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G.

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

―    Abraham Lincoln

SG, i really wish you were doing better! Your initial diagnosis changed, do you think that was the CAP? Do you use very large doses of sublingual B12? I found it changed so, very much. 

I don’t use moppers, charcoal affects my stomach and i don’t use NAC either, NAC makes me feel too weak, but I’ll take it later in the protocol. It may sound barmy, but I can’t bear feeling weak, i was so strong, in the old days, and i could walk my dogs, but, i drink loads of water. It used to be wine, but, those days are past too.

i can’t blame you, for not going on with the CAP, but, i really, really hope you find something To repair you. Don’t stop beliving, you’re such a positive influence, thank you.

Jane 

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Hey Janet ...

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You are strong in both mind and body. May that long continue.

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You mentioned that you don't take any moppers. Neither do I these days. I have taken charcoal, chlorella and the one that I took most of all: diatomaceous earth. None of them gave me any great problems but at the same time I didn't find any of them making any great difference either. I start with mentioning the diatomaceous earth because I was well aware of it's ability to kill intestinal parasites. I didn't know for sure that I had any but I always take the view that if they ain't paying rent, they ain't stayin'. I comprehend that charcoal doesn't agree with you but perhaps you might try some diatomaceous earth or some chlorella. It didn't make a great difference to me but then I ain't suffering as you are.

Oh, I do hope that you are keeping up your levels of good bacteria in your gut. That is a whole different subject but it is imperative nevertheless.

Returning to the subject of strength. Many years ago I was given words of advice by my judo instructor. I was told of adverse comments from some participants that I had just resorted to shere strength. The words of advice was that I should rely and look more to technique than shere strength. I am not a big guy anyway. A bit of a short arse really. It is just a little over 3 years since I had to pack in work. My job had been highly skilled but physically quite demanding too. I would sometimes be at the very limits of my strength to complete tasks in hand. Apart from foot drop on my right leg, my diminishing strength is my biggest problem.

I remember watching an air crash investigator TV program whereby a Boeing 777 was coming into land at London, Heathrow. The co-pilot called out "I just can't get power!" They just cleared the perimeter fence before crash landing at the runway threshold.

A few months ago, I was returning from the hospital after accompanying and injured friend. It had been a very long afternoon and it was now evening. The day had taken its toll. Less than 2 yards from my front door there is a very slight step. As my left leg tried to lift my body weight up over that step (2"), my body called out "I just can't get power!". My body sank back and I fell backwards, hitting the back of my head and twisting my legs and arms under me. Loss of strength and loss of power it's no laughing matter. If somebody wanted to have a laugh, they could have shouted "And this guy calls himself supaguy!" Do everything that you can to maintain the strength that you have.

I was a little surprised to read that you hadn't managed to take any NAC at all. Are you aware that it is the NAC that helps scuttle the elementary bodies of chlamydia pneumoniae that are hitching rides on your red blood cells around your body? This is a three phase parasite that you are currently trying to eradicate. Can I make the analogy of somebody trying to bale water out of a boat that has a whole, allowing the water to gush back in. It is my understanding that the alternative to taking NAC would be to take amoxicillin. I'm sure there's lots of others that will chime in here with sensible advice.

Take care now and rest up.

Good luck.

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G.

p.s.

I was originally diagnosed with primary progressive multiple multiple sclerosis on the basis of the answer to one question. That question was "Have you ever had anything like this before?" That was a dumb and inadequately explained question by the neurologist at the time. A couple of years ago, I was seen by a different neurologist. I explained to him that many years ago I had symptoms that may have been optic neuritis. On that basis, my diagnosis was changed to secondary progressive multiple sclerosis.

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

―    Abraham Lincoln

SG,

i’m sure you know it was Kryptonite that made Superman ‘Super’ and the humble journalist, he really was didn’t possess the strength, but, was a good guy, Well, we’ve all had to learn that physical strength doesn’t last, but the ability to help others, then falling over,, and being able to get up and, eventually, laugh, is all that makes anyone Super.

i will take NAC, but, first i want to be able to take my dog for a solo walk. He is the innocent who looks after me and loves me,  whatever.  i am not an innocent, he is much more deserving.

jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Jane, as long as you are takingthe two first antibiotics there iis no hurry in taking NAC.  I guess this is why I naver had a reaction to it apart from a slightly runny nose, the rrresult of a few disulphide bonds being broken down. I didn't start NAC until I haqd been taking antibiotics for about fourteen months...........................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.

Please ignore

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro