MediTest
5 Apr 2019
Author
Kiki
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

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

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.

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...

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.

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 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.

I've been taking "Stone Root" (Collinsonia) to help with a chronic sinus infection (sinus infections which have been well documented in contributing to MS relapses...), and it is required to be taken at least two hours after eating and eating at least one hour after taking - aka "empty stomach" in order to get maximum absorption, just like doxy does. The other drug I take, Fenugreek which also helps with sinus infections, doesn't need to have empty stomach. Staying well hydrated is also important with the Stone Root...So, back when I was doing doxy twice a day, and the Stone Root - the problem was never the doxy - for I stayed well hydrated, but with my ability to not eat for these nine hours a day - being a vegetarian, 'grazing' is essential, whereas meat eaters have no need to 'graze'. Like cows that graze all day long, but the lion can eat once a week. I was constantly famished!

btw: The NAC also likes the "empty stomach" (aka 'away from food'), and also at twice a day - brings the 'no food' time to grow to fifteen hours a day or over half a day if all taken separately... thus I do a lot of pill taking via alarm clock during the night, plus combine some of the 'no food' pills by taking them at the same time as another 'no food' pill. Still, just hungry a lot ::-)

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...

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

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.

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)

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)

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.

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!

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.

Roughest days so far. On own with total childcare and carers responsabilities. Only day 3 and Im flattened. Feel such a light weight. I mean Ive barely done 1,5 month of protocol. Happiest when just asleep! How did yous manage to run family and life whilst battling this crap bug? 

Well, luckily there was only me and David in our abode and David did most of the cooking. Cleaning just took care of itself! I feel for you, but remember that it won't last forever and one day you will wonder what the trouble ever was!

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.

Kiki, it will come!

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 Kiki,

How are you going? I started like you at the start of January. I feel pretty well, actually. I haven't been sick or anything taking the drugs, and my head feels so much clearer. My walking is not great, though it has improved a bit, so I hope when I've done pulses and the bug is fully gone, I'll start to recover.

It's just a few weeks till I start the pulsing which I am a  wee bit nervous about, but what have I got to lose. 
I have warned my co-workers they might need to cover me and they're being really supportive. My family too.
My husband printed me a chart to note down what drugs I should be taking when so that I can mark them off and keep track. My memory had been terrible but has improved quite a bit. 

Anyway. Good luck to you - to us!

Best wishes,
Elizabeth

ps I have told one person about this, long-term MS person - he was blown away.  I'm another calling this weekend.

Elizabeth Anne

Hi Elisabeth Ann!!

Nice to hear from you!

Yes I started 7th Jan and its going pretty ok. The routines 2nd nature now and I only feel tinsy green within half hour of taking the full dose Doxy but it never concerns me now as Im used to it and busy enough. All my issue ie grip/strength in left hand/arm and left foot/leg are worse and weaker since starting meds.  My walk is deffo bad so Im usually in car or with walking stick outdoors. I find myself more tired and needing more minirests between being active but seemingly this is what others have experienced too on the way to recovery. Bit off a hard slog as Im the main carer and solely responsible during weekdays for our severly wheelchair bound teen girl what with all moving and handling etc. Also making sure our youngest gets to still do all her sports after school activities plus run the house, feed and dress all etc. But my gal pals and ladies on here keep me going and once my partners home for weekends he takes over all care so I get respite. Im also bit nervous re pulsing as its a new experience and unknown reaction to it but its gotta be done and friends and partners prepped. Most likely I'll be all logical and prep loads of dinner meals in freezer for then and minimise any chores to be done then. It'd be nice to maybe do this hand in hand on ether too! Im due to start pulse ca 5th or 6th april.

Keep going and hopefully the road will come clearer soon for us both!

Kiki

Hi Kiki,

How brilliant to talk to you. 5th or 6th April for pulsing -- me too. We must have started on exactly the same day! I'm finding like you that walking and gripping are getting worse, but I get bursts of them being better. 

I'm really impressed with all you are doing as sole carer. I am lucky in that it's only me and my husband, no children or parents to look after.

I'm totally determined to keep going. I read yesterday about a man who recovered from a stroke where he couldn't speak or walk.
If his brain can recover, so can ours. I've read lots of stories like that,

Best wishes, and I look forward to reading more of your successes!
Elizabeth
 

Elizabeth Anne

2 months+ in now! 

I find myself still physically struggling, having to take constant mini breaks and lay down in order to get on with life juggling sole kiddie care during week and being a very hands on full time carer for my disabled teen . I plod on as best as can be because there is no other option. It is what it is.

What I'm having a harder time dealing with is the constant inner knowledge and struggle of keeping going physically that others around me don't understand. The pressures on me and how hard I have to try to achieve the most basics of actions. My impatience, my snappiness, my no energy nor head space to care for anything bar minimum in order to go on. Tiredness of having to chat and/or explain myself. I feel if they knew I was doing a year long+ chemotherapy treatment for cancer they would be far wiser, understanding so caring far more than currently! I have bar obvious limp so using a stick not a huge appearance of something wrong with me.

But I know there's everything wrong with me right now! I'm physically, mentally and emotionally struggling on a constant basis yet appear to have it together to others.

It's exhausting. And I still  haven't even done my first pulse!

I don't even know where I'm going with this rant. I guess here I feel safe and understood really.

How did you all cope and handle this unfortunate dis- ease in the early days?

Thanks for listening! ( it's just a bad day so don't worry about me- I just needed to vent)

💖 Kiki

Kiki, I must bear in mind the fact that my way of coping with the early days was to hide myself away and ignore the rest of the world. Not everyone can do that though! At first, David wanted to stay at home with me, but I persuaded him that I was better left by myself. The first people I really spoke to were my friends up north, by telephone. My speech was one of the first things to improve and they were mightily impressed, so straight away stopped worrying.

Like you, I didn't look unwell, so showing off my improved speaking was a good way to go. I also had the advantage that all my friends and family believed in what David was doing: I really don't know what I would have done otherwise!

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.

That's exactly what I feel like doing- hiding away by myself licking wounds like a bear in my own cave and just re appear some seasons later! Its wanting to be in my own world and deal only with recovery and whatever the journey brings up. My best friends and family all know and are super onboard with this planned treatment. They know I think things through properly and research before I commit. I think it's just the feeling of it being invisible so folks forget or don't understand how debilitating and frustrating every waking moment is. It is SO clear to me yet I understand that one cannot ever fully comprehend unless one has experienced or are experiencing.

Kiki

Exactly!  I remember my mother running round like a little puppy dog when she came to visit after my diagnosis.  It was really off-putting!  Other members of the family who didn't know me so well suddenly wanted to proffer cures that they had heard of that I knew were totally useless.  Only my closest friends and my sister really listened.

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.