MediTest
6 Jan 2019
Author
Kiki
Title

NEWBIE- advice and experiences please! Protol 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

Rough week coming up, so best of luck!

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.

Bless you both! Feeling like a ship drifting loose and alone hearing you both makes me feel Im not on own and makes me realise my journey is not rare. Like the donkey I am I still manage the kids on own all week with hobbies, feeding and school runs. I do minimum of all else and seemingly resting up in between every chore. I give myself space and time and manage most by giving myself breaks and plan all to run as smooth as with my condition. Today was a wall, Im getting dry,tickly cough right in time for next weeks term hols when kids are home with just me 24/7  and I'll have minimum rest and breaks. Rough day!

Kiki, some people here ended up unable to do hardly anything after starting treatment until the magic day that everything starts to turn round. I was lucky that after my first couple of weeks, I didn't experience this further weakening, but don't ask me about my first two weeks:I just don't remember it!!

It must be tempting to start metro or tini sooner than advised, but waiting three months was chosen for a reason: before this site started, Vanderbilt University started a trial on CAP for people with MS.  This trial involved taking metronidazole from day one and the result was that so many people dropped out that the trial was never finished. I started metro after somewhat over three months and did five days straight off.  Had I done it the original Vanderbilt way, I might have dropped out in agony.

My guess is that soon you will have difficulty remembering these first few weeks, so it might be advisable to write a memo to look back on!

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.

So...I do min walking and have done so since late autumn, on walking stick or crutches, had to resort to wheelchair lent me during long weekend away, drive everywhere...

And this from someone that 1 year before was very athletic and active. I've resorted to a cleaner as no can do house myself now. Been on meds since 7th Jan this year. Feeling so weak, incapable and low now. It just seems to get worse

 Not due to take Tini til beg April

Im struggling to keep it together. Why am I getting weaker still,? Thought the Doxy and Roxy  would keep it all at bay. And as a women Im struggling too with nether regions and so much antibiotics- what to do???

Please advice!

All of my symptoms, and especially my walking, got a lot worse when I started out with treatment. Loads of weakness. Yes, I can completely relate to what you are saying. These bugs don’t like to go quietly! It’s a long tough route - but amazing when the glimmers of better things finally come.

The doxy and roxi will be doing some killing, but more gently than metronidazole or tinidazole.

I found drinking lemon water, and having Epsom salt baths or footbaths, helped to stop the toxins building up. I’m also a great fan of Nutramedix burbur and pinella for detox.

As for the other - be sure to take a good quality probiotic at least a couple of hours after abx. I also drank a lot of kefir and kombucha. Coconut oil (organic, raw) is brilliant topically too.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Definitely take doxy with food, especially when taking long term. It’s a nasty one otherwise, and very caustic. I took it for over 3 years, always with food, and had no gut problems at all. 

Re the increased weakness - yes, that was my experience too. It increased considerably for me when I started pulsing metronidazole or tinidazole.  It does all eventually come right though! I was unable to exercise at all, but just tried my best to walk short distances (I was needing crutches then) and generally look after myself. I found, as treatment progressed, I was very naturally able to increase activity. I would say do what you can but never push yourself - your body is already fighting enough of a battle, without you putting it under extra stress. I’m fine now and can walk 5 miles on a good day!

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Normal, but I bought an ellipse:gentler on the body!

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.

To be fair- I only have a small bowl so as to cushion the guts a bit from longterm possible acids effects. Just got confused with conflicting advice.

Now re the experienced weakness. Normal? Should I poss invest in stationary bike to keep muscles up?

Kiki

No Batgirl, when you are taking long term abx, this is irrelevant. The fact that doxycycline can rot through your oesophagus is not. The first pack of doxycycline I read from a local pharmacy but produced in Ireland did say to avoid food, but I have never seen it since.

Anyway, I prefer to follow David's advice rather than that of a drug company, where microbiologists are thin on the ground. 

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.

if you're taking time released doxy, food is totally irrelevant.

However, regular doxy is BEST taken on empty stomach (no food two hrs before / one hour after), for taking with food will impair the antibiotic's absorption. So whether you waste it throwing it up or mixing it with food, it is still not helping you - the deal is to drink LOTS of water before taking and after taking to enhance absorption and weaken any queasiness. You must be well hydrated! This is from the drug manufacturer's information (see recent PDR for more)

...physicians desk reference...(PDR)

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

No, Kiki, NEVER take doxycycline on an empty stomach! Whoever says that is completely wrong. If you sick up most of the tablets what is the point of taking them?

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.

Hi again! 

Protocol running smoothly. No main concerns really. Have noticed  how I feel more weaker physically though. How Im almost worse in my affected left side of body ie hand grip wise and walking more awkwardly than before Christmas -18.

Is this normal or could it be because I do so much less of physical activity,?

I read somewhere here that you're supposed to take tabs on completely empty stomach. Ie no food before nor 1 hour later.

Have I done it wrong with small bowl muesli before tabs in morning?

Did any of yous up your exercises in best way possible when you started out with the Meds? Only taking Doxy and Roxy at mo with plenty supplements. Debating whether I should invest in a stationary exercise bike...

It is used as part of the protocol to 'kill' the elementary bodies, which halts a reinfection, so isn't really needed for that when you are taking doxy and roxy every day: that is probably what you are thinking of.

However, it is useful for other things: it is very helpful for coughing and sneezing with winter colds as it breaks down the mucus in your lungs.  So also a help if you are surrounded by young children!

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.

Thank you Sarah!

I ordered some NAC as remembered it from a conversation while back. Have it at home but for some reason I thought I wasnt to bother with it til starting the TINI. Am I remembering wrong? Should I start taking it now you reckon and whats best dosage please?

Kiki

My intake of B 12 is 30,000 units sublingually EVERY day.

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Just a brief touching base again.

My journey of treatment plan started few weeks ago is now up and running smooth. My routine of lifestyle choice, meds and supplements intake mixed with family responsabilities feel easy peasy . The eager beaver person in me cannot wait til I can give this Cpn a proper kick straight in the jugular by April time. The bidding time is hard for me as I've always said patience is the last thing I'll learn😊😁...but I'm forced to learn. So for me to learn better I'd thought I'd ask for a brief explanation of what is really happening in the body during these stages til I get to the 3 months. Out of interest and also better knowledge so I can work on myself with sharper more positive focus longterm.

💖 Kiki

Kiki, yes, I did see your question about tini dosage but was busy doing my tax return!

Tinidazole you take either in two doses of 500mg, or one dose of 1000mg, unlike metronidazole which is taken in three doses of 400mg.

By and large, it is more tolerable than metro, so you should end up fine by taking just one of the larger dose.

(I seem to have accidentally cut it out of the MS bit of my website, so I had better put it back in!)

Since your partner takes over the children at the weekend, that will be the ideal time to start it.  If you feel brave, take 1000mg for the two days, but split in two doses to begin with.  If you feel awful after the first day, don't do the second day, but try it again in a couple of weeks.

There is no rigid timetable here, so you can carry on for as long as you like, or pause as soon as you like!

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.

Yes, Roxy is a dream in comparison!

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.

I have only taken azithromycin once, when I ran out of Roxy and it gave me a headache. I don't get headaches normally.

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.

Ps. Just out of interest- is the Roxy meds quite easy on you? Ie when I first started protocol last week with Doxy only, I could feel it a bit more in my tummy- this icky feel. But Im not getting any iffy feelings taking the Roxy now too tho still splitting the daily dosage up in 2 tabs per day. Not complaining mind you! Just curious to know if its more the Doxy that gets you feeling bit sick?

Fingers crossed! Once I'm running smoothly ( by next week,) , I'll most likely just be bothering yous here occasionally. Nice to have my thread here as a diary content of treatment plan for myself tho. How do I know when to start purchase of 3rd meds and start the pulsing? Also do you do the 5 days in a row straight away or do you have to build up?

As you can see- I'm deffo into running before I can walk😊😉

Or...I'm just being an old Swede liking to set right course for my plans and clear path from any doubts or questions.

So, all seems to be going well!

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.

Haha- I should know as trained few years ago becoming clinical hypnotherapist! My minds bit preoccupied...

Week 2 and I leapt. Took full daily dose of Doxy plus half daily dose Roxy this morning. Felt fine so will take next halfdose Roxy this PM and aim to take both full daily dosages together in the morning come weekend as my partner home and feel better supported with kiddie care should I not feel too well.

Also upped B12 to 2 tabs per day.

Ps. Received forms to get copies of my  2006 and 2011 mri full spine/ brain scan so that seems nicely straight forward! 

 

That is fine! CNS is central nervous system.

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.

Forgive me but i'm not remembering what CNS stands for.

Ive got the chewy cherry flavoured B12 from Best Naturals ( methylcobalamin)