.... but if they wake up dead?

Just an off the wall discussion topic:

We are or all have done this protocol (bar one or two).

We are here doing this because, having looked at what’s around and the likely outcomes that mainstream medicine has to offer and this seems like our best bet. In my case, mainstream medicine is offering me nothing, so not a difficult decision.

I have been coming here a while and, naturally, have encouraged others to follow in my steps. Offering others advice is certainly more onerous than following that advice one’s self. As I say, in cases like my own (PPMSi) where there is nothing else on offer, the decision is easy. When it comes to others being advised, I have to be more cautious. If I wake up dead, I don’t suppose I’ll give a damn; others waking up dead will haunt me!

I watched a video a while back about a geeza with liver cancer that followed his own path and was quite clear in his own mind that he knew better than the doctors.

https://youtu.be/wSsH84hVNM8<

I have discussions with various people on here. For those that experience herxing, I have absolutely no trouble in expressing the belief that they are on the right track. For people like myself, where any herxing is far less apparent, I think it is more difficult to be so positive and so sure that one is on the right track.

In a separate thread to this, a member yawned at the concept of MS be autoimmune. I recall reading a while back that DW wrote something to the effect of “Once MS becomes truly autoimmune, antibioticsi won’t help” (sorry if I misquote there). I recall too, MacK chiding someone who was not experiencing great herxing that had bemoaned that fact. I supposed that I am saying that it is difficult to know. If you herx, it's horrible but it must be like having a bloody great neon sign telling you that you're going the right way. How do I feel (at the end of this pulse): Yuckkie!

Undecided

G

Link to post you may have been referring to

http://cpnhelp.org/paul_thibault_study<

D

The Greatest Risk of all is Not taking the Risk...

Supaguy, I had very little herxing but I still got better.  In fact any there was came in the first ten days, then nothing.  Before starting, David, (the David Wheldoni you mentioned) thought I might have been ill for so long that true autoimmunityi had taken hold but nobody was as surprised as he when I started improving so quickly. Oh, apart from me who thought it was all a load of bunkum.

You really never can tell how long people are going to take to respond to this infection.  My MSi might have been lingering since my very early twenties, but I responded very quickly in the end, over twenty years later.........................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 Supaguy,

Maybe glimmers are more helpful in knowing if you are on the right track than herxing?

I'd sure rather have a glimmer than a herx!Smile

Hi Glenn,

I maybe asking a bit too much here but I read and re-read your post again and I know it may be hard as I am not in the NHS system and they may do things differently over there but can I ask a few questions?

as healthygirl wrote, glimmers are what we look for... That is what we all want... But as we all know here this path is different to all of us... Two steps forward 3 steps backwards... One step forward one step backwards.... Sometimes just backwards for a period of time and then progress is experienced... This is sometimes achieved with or without herxing... How are any of us to judge what way we are going and at what pace.

as you have said yourself in a lot of your own posts, what options do some of us have... You just don't lay down on the train tracks waiting for the approaching train... Hope is a truly powerful thing.

hope is got from feeling you are doing the right thing, been on the right track....

i found myself in the past that depending on my mood or frame of mind at the time I believed in what my mind told me. If I was feeling lost or lonely I would slip into "why me" and "am I doing the right thing here" or am I just imagining the little improvements here and am I going to slip backwards again.

i knew my make up in doubting what I was doing so I at the start of this journey got all the tests done, blood tests, mineral tests, hair analysts, leaky gut test, and MRI scans done.... 

This cost me a lot of money and money is hard to come across but I believe your health is your wealth and managed to get these done.

every year I get my MRI done and my bloods are checked every 6 months.... My vitamin levels are checked also. I get the usual reports from these results but also I get them read by a few different people to look at them deeper....

this I do find reassuring when everything reads positive..... Herxing or not herxing then doesn't matter.... The proof that what I am doing is helping is in the results.... 

I know some here have not got any tests done and can continue without a problem but as i said I needed and need to know the it's making a difference on a level that I can't see without doing these tests.

So the question I was asking is in a very long winded fashion is do you or can you get MRI's done and bloods checked on a annual basis.... I know it mightn't make a difference but it could give you a stronger grip on what you are doing is right!

now if you ask me, you are on the right path, it's just your path may be a little bit harder than some here, but stay positive and upbeat..... You may just need to do more to get yourself ploughing forward...

I know some here dismiss my methods and my input and that's fair enough.... Go back 10 years and I would dismiss myself.... But if I can make a difference by taking a few herbs I am sure you are making a positive difference been on CAPi....

good luck and chin up...

regards

D

The Greatest Risk of all is Not taking the Risk...

Hi All!

Well, Healthy Girl, let me say this: after I wrote this post and went to bed last night (very late as usual), I lay there failing to fall asleep – again, not unusually. Last night I initially though I had what some might call “Restless leg” moving and tensing my right (weakest) leg. After a lot of doing this I found myself clenching my thigh / quads. Later I found myself tensing and clenching my glutes. I was aware that this was a good sign; I was also aware that I might well awaken the attention of a sleeping bint – after all, it’s a pretty strange thing to be doing at 3am. Earlier this evening I was watching TV and clinching away at nineteen to the dozen. Now many of you will have noticed that I sign all my post with “G” (we take MacK’s advice and don’t use our real names – we use screen names instead). Anyway, if you track all of my previous posts, you will notice that I have never used the “G” word (glimmer) in relation to myself. Like most people, we become afraid to jinx ourselves. Well, constantly tensing the group of muscles that I am so noticeably missing is going to cause me to use the “G” word if it carries on.

In terms of lack of herxing, I have previously joined MacK in telling people not to wish for pain and discomfort. God only knows, I have had enough pain & discomfort throughout my life (I lived with The Broomstick Lady for oh so many years). No, I don’t seek pain (I’m past all those games now). My reason for raising the issue was not that I seek re-assurance that I am on the right track (as I say, there is nothing else on offer); no, it is that the idea of continuing the drug regime until die-off reactions cease (and then go intermittent) is often quoted. If you get no obvious die-off, it’s a bit like having no compass (bad analogy perhaps).

Anyway, there are many people out there that have quite some unpleasant reactions. I know that there are people from New Zealand to Ukraine to Canada to Virginia that all have quite unpleasant effects from these pulses. For those people, it takes all the more guts to go through each pulse. I always say to people like that, for them, the die-off effects are like a bloody great neon sign.

I note Sarah mostly suffered no herxing and then went on to show noteworthy improvement in her condition after pulse six. As you say, Darren, we are all different. I suspect that when Sarah went down hard with MS, it was party time for CPni; it was like something had just said “OK chaps, it’s a free bar: do your worst. Although MS was having a field day inside her body / head, I suspect that there may have been nothing else going on. We know that Sarah beat CPn and she beat MS. I strongly suspect that the establishment would always say of her (and any of us) either; you never had MS; you still have MS but you remain in a current period of remission or, you now have benign MS. My view is that she had very nasty MS indeed … but that she was pretty fit apart from that.

As many of you will have sensed and seen; I am not at all a glass half empty person. In fact, I am one of those with a tiddle left at the bottom of the glass that claims my glass is not quite full.

I recall once in telling a doctor that I happened across that I was ill (pointing to my head). I said, no, I don’t mean mental illness, I mean MS. Today, I don’t think that I would point to my head. Although I am not working and therefore not ever challenged with tasks, I am not aware of brain fog or stuff in my head. As I have alluded to before on these pages is that my (don’t go to DEFCON 2) gut feeling is that many my of issues lay in that area. Whether that is MS in the spine or whether that is just the way that PPMSi goes; I do not know. Does my ass looks fat in these pants? Well, no it doesn’t … because it isn’t. I have had to buy a gel cushion to sit on. I need to think along the lines of Crohn's and that sort of area. I need to eat more and more often. I think that if I can sort out food absorption and assimilation, I will indeed be in a position to use the “G” word and mean it.

Tongue Out

G.

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

―    Abraham Lincoln<

YAY!

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

HI Supaguy,

I am hoping to soon read the G word about renewed strength in your weak right leg.

Please keep us posted!!!

Supa,

 

You mention The Broomstick Lady.

Here is a clip of the ultimate Broomstick Person: https://www.youtube.com/watch?v=wzGGjxKWJyA<

Consider yourself fortunate.

 

best wishes,

D W

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]

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