5 Apr 2019 04:03 am
5 Apr 2019
Title
NEWBIE- advice and experiences please! Protocol starting JAN 2019
Body
Hi all incl Sarah and David! I'm new to here. Just recently weeks ago I was diagnosed with intermittant relapsing MS. Seemingly it all started in 2006 with optic neuritis then 2011 with lower limbs tingly,/ numbness. I have been started on daily Copaxen injectitions. But with a severely disabled child Im struggling both physically and mentally. Please help with advice as to how where, who, how much etc to get started on Wheldon Way of treatment. I believe in going in for the underlying cause rather than just band aid stuff. Thank you! Kiki Bojanic
Comments
Brava Kiki!!!
Brava Kiki!!!
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
Pulse 1
Good on you, Kiki.Ā
Elizabeth Anne
5 Apr 2019 07:16 am
š to you Sarah forā¦
š to you Sarah for supporting and never ever not being there even when I've asked in my mind silly trivious questions!
And plentyš to you all on here for lighting the way forward
Kiki
6 Apr 2019 08:15 am
So for diary purpose reallyā¦
So for diary purpose really...
First day on Tini pulse was good. Gave me slight headaches shortly after taking it each time ( decided to do 2 doses of the daily intake) and made me feel a bit sicky just like when I initially started taking the Doxy- which by the way I no longer feel icky from. But here's day 2 and Im increasing water intake to flush out toxins better and allieviate poss headaches. Only slight headache today and no sicky feel. I'm actually feeling hungrier too rather than losing appetite as I thought was going to happen! I'm liking that thoughš!
Fingers crossed all continues just like thisš
Kiki
8 Apr 2019 12:53 pm
Ps. Did anyone findā¦
Ps. Did anyone find themselves extra weak when doing pulsing? Im already feeling weaker having started protocol 3 months ago and feel it more so now Im near finished with 1st pulse.
Kiki
8 Apr 2019 07:09 pm
Yes, that is one reason toā¦
Yes, that is one reason to pulse the imidazoles: it soon wears off!
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
9 Apr 2019 05:04 am
Great! It was deffoā¦
Great! It's deffo been noticeable but last pill this pm now!
Kiki
20 Apr 2019 06:37 am
Day 3 of 2nd pulse with Tiniā¦
Day 3 of 2nd pulse with Tini!
Yes yet again done earlier than expected but realised that with partner home this whole long Easter weekend ie 4 days I might as well utilise the time given me with child care help. And then I thought further beyond the Friday-Monday break and popped 1st full dose in one after dinner on the Thursday!! So now there's only 2 more days to go for my 2nd pulse done. Time efficiancy for sure here I know but I did consult with Sarah first and I felt ready. I have promised my mum to take appropriate length of break before the 3rd pulse thoš.
It's so sunny and hot here now- I'm feeling more uncomfortable with the heat and a bit concerned about how much sun is good for my skin now I'm on the protocol. Will I end up with blotchy skin that won't clear up down the line? Anyone know? Also for a good while now my skin has become very itchy. It moved on from my face ( jaws and forehead) to my scalp ( making me at times look like a flea ridden dog scratching away) and now I feel it a bit more on the back of my neck. What's that all about?
My appetite is better, I drink more water and my energy seem better tho I physically feel weaker and don't notice too many improvements yet. I started the protocol 7th of Jan and now halfways through 2nd pulse. Others here seem to have improved far more than me by now and though I do know everyones journeys are individual it still made me wonder if anyone else had similar experiences as me.
Happy Easter allšš
Kiki
20 Apr 2019 01:16 pm
What a delightful pictureā¦
What a delightful picture you draw, Kiki: A flea-ridden dog scratching away at her blotchy skin!
I have no idea what is causing your itchiness, but you might get it to clear up by taking a non-drowsy antihistamine like cetirizine.Ā You could also try either stopping all the supplements for a few days until the itching stops, then reintroducing them one by one until the itching starts again.Ā The only things that causes itchiness with me, whether on treatment or not, are things which cause an allergic reaction, but that is just me!
As for the blotchy skin, you obviously have read my post about doxycycline and summer sun:Ā http://cpnhelp.org/node/14074. There Mac talks about her blotchy skin when leaving off sunscreen.Ā It did only last three months though: she didn't get stuck with it!Ā As for my skin, the last time I got sunburnt, I was 17 and didn't have MS then.Ā
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
20 Apr 2019 03:13 pm
Dramatic I know but theā¦
Dramatic I know but the scratching away makes that visual feel very similar at times haha! Or like an intense bear scratching away on a tree stumpš
Kiki
Hi Kiki, Well -- here weā¦
Hi Kiki,
Well -- here we both are, 2 pulses in. Good, isn't it? I might have had a slight reaction the night before last; I woke up in the middle of the night, feeling achy all over. I eventually went back to sleep and was fine when I woke up. Ā How is it going with you? Are you feeling all right?
I've taken 5 days of Roxy each time.
I said last week that my walking is getting slowly better, and everything else is good as well.Ā
Ā
Cheers,
Lizzie
Elizabeth Anne
23 Apr 2019 05:56 am
Hiya Lizzie! Yeay to 2ā¦
Hiya Lizzie!
Yeay to 2 pulses done! Just finished yesterday. So far my reactions have been extra extra tired and even more so as week went on ie cumulative tiredness and even weaker physically on my left side. Both walking and gripping. But at the same time the after effects few days later have been so far more energy in my mind and being. Im wanting and believing I can achieve so much more tho physically I still feel hindered. Hopefully at some point these 2 thought paths of thinking meet for a more action planššš
I say keep chugging and notice the finer details first within is my road right now. I feel stronger mentally after each pulse!
Kiki
Good for you Kiki!Ā It'sā¦
Good for you Kiki!Ā It's good to have someone going on the same journey, as they say! How long have you been diagnosed for? I've been for ages, 25 yearsĀ but only started really feeling the effects about 15 years ago. And it's been getting slowly worse, then quickly worse!
I have lots more mental energy and memory and all those good things compared to like it was before.
xx
Cheers,
Lizzie
Elizabeth Anne
Hey Lizzie! I got opticā¦
Hey Lizzie!
I got optic neuritis in 2006 and the hint that it's something sometimes connected with MS but I simply brushed that idea straight off my radar because OF COURSEĀ I didn't have that!š
Years later tingling and numbing in my lower limbs was equally again brushed of by me and something I just got used to.
I had an unfortunate accident with a completely ruptured ACL that needed reconstructive surgery just near 2 years ago and 2 months recovery after. Did intense physio rehab for a long time until I got fed up with seeing little improvements and so gave up rehab- mentally and physically! I'd hit a wall.
I then re started investigations as to why my body was not recovering well enough. Did the whole multiple MRI scans, X rays, sensor tests...yet nothing. Until one GP paid attention especially as I joked -" Ive either had a stroke or MS"...
Following a full spine and brain MRI scan I then got the diagnosis of intermittant relapsing MS in late Autumn 2018. And told I'd been lucky as my relapses seemed to be every 5 to 6 years. So all along since at least 2006 I've actually had MS but not know nor suspected out of innocence and disbelief.
I may fluctuate emotionally on this journey but deep down inside I'm a warrior ready to beat any battle thrown my wayš
It's good to share wisdoms and feelings with you here Lizzieš
Kiki
Hi Kiki, I had opticā¦
Hi Kiki, I had optic neuritis too. It was when I realised something was badly wrong.
I thoughtĀ Ā there was something in my right eye, or an eyelash was getting in the road. Ā I closed my eye to rub it and saw a blood-red streak inside my lid.Ā That that led me to seeing a neurologist for the second time - having seen him a year earlier with numb feet and legs -- who then did an MRI scan. People used to say to me I was "So Strong! So calm!" They hadn't seen me in my private moments when I was working it out...Ā
I wasĀ lucky - a friend gave me an excellent book on how to manage the condition, and thereafter Ā the symptoms were tiny.Ā Until about 10 years later --Ā Foot Drop, big time.Ā
But, again:Ā I was lucky. I was diagnosed 1992/3-ish, but I reckon the damage has not been as bad as it might have been.Ā
I religiouslyĀ took evening primrose oil and multi vitamins. It's only been in the last 7 or 8 months that my walking has got really bad, and then I found this! CPn Help.
In December last year I received a video of the ABC Dr Wheldon programme, attached to an email from MS-UK. Strangely there was no reference to it at all, and since I've never read anything from them about it. It's almost like it was attached accidentally.Ā
I reckon we are blessed, Kiki. Sarah, and David and all the rest who could have got on with their live, chose not to.
xx
Lizzie
Ā
Elizabeth Anne
Ā Lizzie and Kiki, I think Iā¦
Lizzie and Kiki, I think I wrote a piece for New Pathways about ten years ago or longer about David's treatment of me, but the MS-UK people all seemed to think that antibiotics were bad for you, so nothing much came of it and I eventually left MS-UK and concentrated on at first This-is-MS and then CPNhelp.
I didn't even bother telling MS-UK about the Catalyst programme, so Lizzie, I don't know how come you received a video from them!
Perhaps we have a hidden fan!!
Sarah xx
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
Well done to that incognitoā¦
Well done to that incognito person having "slipped" in an additional info attachement!
K
Someone, something, isā¦
Someone, something, is looking out for me... I don't recall your article in New Pathways, and there it was attached without reference, to the monthly email.
Sarah, do you know if Judy Graham knows about this? Do you know Judy? She wrote the great book that saved me, all those years ago.
I think she's not been too well recently.
Best,
Lizzie
Ā
Elizabeth Anne
Lizzie, I was a bit out inā¦
Lizzie, I was a bit out in my timescale: I must have written the piece between my diagnosis in 2003 and the starting of this site, which was about twelve years ago. I then left that sight and forgot all about it.
Judy Graham does know about our treatment but she is one of those who doesn't go along with it. I don't know her personally but I did buy a copy of her book, in the early days.
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
23 Apr 2019 11:39 pm
Lizzie, You mention fiveā¦
Lizzie,
You mention five days of Roxi each time in a pulse. Was that a mistake? Roxi is to be taken daily along with Doxy, I think. Sonal takes daily 100 mg DOXY twice a day and 150mg Roxithromycin twice a day.
The pulse is to be done with Metro or Tinidizole, isnt it, for five days? Your post has left me confused. Good to know walking has improved. Carry on. And Kiki too shouldĀ soon see the benefit with improvements.
Neena
I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.
I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.
Sorry Neena! I keep theā¦
Sorry Neena! I keep the pills in away in aĀ cupboard and I got the names mixed up.
I've finished my second pulse of Metronidazole.Ā Funnily enough, my memory is improving rapidly in other areas, but not here!
Best wishes,
Lizzie
Elizabeth Anne
24 Apr 2019 10:58 am
Neena, easily done with allā¦
Neena, easily done with all these different names, but I think Lizzie meant to type 'metronidazole!'
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
25 Apr 2019 05:26 am
yes easily mixed up
Sarah, Liz Hi
yes I thought that was just a mix up but I felt it must be clarified lest Liz had made a mistake on the pulse!
today was trying to sort out and make a list of all the supplements for Sonal. That seems to be a more daunting task than the antibiotics! I wonder Sarah if it is ok to take 10 or 12 supplements -- mostly vitamins, Lipoic acid NAC etc at one go? Also whatever needs to be taken with food can only be taken breakfast lunch or dinner.
how does one know that one is not poisoning the body with too many vitamins!
Take care
Neena
I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.
I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.
Hi Neena, It's funny you askā¦
Hi Neena,
It's funny you ask that. I was worried I'd get the doses all mixed up and I'd forget what I'd taken as well.Ā I designed a table - days and dates and what to take (which then get crossed off) per calendar month. It's quite good.Ā
As for over-dosing on vitamins - a good question. I take a daily multi-vitamin pack which hasĀ most of the Wheldon recommendations. If it's packaged for the day, I figure it must be all right. Additionally each day I take Evening Primrose Oil 3000mg; Biotin x 20,000 mcg and N-acetyl cysteine 600mg x 2 and Vitamin D x 7,000mcg.I was told to be careful not to have too much Evening Promrose Oil or N-acetyl. The rest (I was told) just passed through your body ifĀ not used.
Also, even though I tolerate the Abx no trouble, ifĀ I have the supplements in too big a batch I feel really queasy.Ā
I don't know how you can tell if you have too much. As you know, I'm 75kg and 5'8". As Sonal is smaller, I'd probably round the quantities down?
Ā
Best wishes,
Lizzie
Elizabeth Anne
25 Apr 2019 11:52 am
Although the abx doses areā¦
Although the abx doses are fixed once adolescence is left, with vitamins there is more choice. If I was as small and light as Sonal, I would certainly cut back, but in fact I am the same height as Lizzie, but exactly 8 kg lighter!
Some days I get fed up and don't take any supplement, but B12 and D3 are absolutely necessary: people with MS tend to have lower levels of vit D and B12 is essential for the nervous system, so if I have a day off, I will make up for it the next day!
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
26 Apr 2019 01:47 am
thanks for the info
Sarah, Liz
that is useful info. Now what is this pack of vitamins which has most of the Wheldon recommended stuff? Can you help Liz? Where did you purchase it? Is it avalable on Amazon? It would be useful for Sonal till she is a bit better and is better able to juggle with all those pills -- you know some before meals, some with meals and so on.
In a day or two I am hoping to help her organise, But that pack of vitamins would be useful.
By the way Sarah I have ordered taurine which should arrive today and Sonal could start over the weekend.
Take care. Cheers
Ā
Neena
I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.
I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.
Hi Neena, I take LifePakā¦
Hi Neena,
I take LifePak from Pharmanex, owned byĀ Nuskin. You order it direct from them (it's a multi-level marketing product) and it's delivered to you.
Since I started taking LifePak 15 years ago, I have not had a cold or the 'flu at all. It seems very good to me, but it is dear....
I just looked -- it seems they don't deliver to India. What we could do is order them here for you in the UK and perhaps Sumi could send them to you in India, if that seems of interest?
There are other multi-vitamins and minerals, but LifePak has been great for me.Ā https://www.nuskin.com/content/nuskin/en_GB/products/pharmanex/shop_all_categories/nutritionals/food_supplements.html
Sarah!Ā I would LOVE to be 8kg lighter...
Ā
Elizabeth Anne
28 Apr 2019 05:37 am
Side effects are here
Hello,
I think I've been feeling the effects of the toxins of the dying-off CPn. So far -- headaches (treatable with Nurofen), and aching bones.
My chest and shoulder bones feel like they've been in a viceĀ andĀ they're bruised. It's not unbearableĀ but not comfortable.Ā
Honestly, I am pleased. I know that something new is definitely happening - apart from the improved memory, energy, absence of little aches and pains, thanks Doxy!
It's 9 days since I finished the latest, second, pulse. Kiki, how are you?
Bye,
Lizzie
Elizabeth Anne
26 Dec 2018
Well...I have grabbed theā¦
Well...I have grabbed the bull by its horns!! Short of 3 days before my 3 month initial meds route and against my planned way of waiting til my partner is home ( don't worry tho as it's Friday and he's home tonightš) to help with the kids so I can focus on my own health and meds intake. I woke up and thought to myself- " you've been ever so cautious for so long- now be yourself again and leap with faith and bravery! My ancestors survived worse so it's in my heritage to bloody well go for it and succeed"
And so I sent my eldest of on schoolbus this morning then went into kitchen and popped my first dose of day of Tini- ie first pulse started! I'm committed, I believe and soĀ I am moving forth!š
I LOVE feeling like myself again ( for a change)in moments like these!
The warrior has risen and I am defeating this invaderššš
Kiki