Cpnhelp.org

Hello Kiki, since we have already been talking by email, I will get straight down to business. Living in this country you will find it very difficult to find a GP willing to treat you, since they are all frightened of losing their licence by prescribing long term antibiotics, so rather than waste time, I will willingly give you a couple of addresses where you can buy stuff on the Internet.

Also, don't waste time by starting on n acetyl cysteine and building up to the full dose of that: you don't actually need it until considering intermittent treatment, which will be at least a year away.  I didn't start it until about fourteen months into treatment. You will have seen David's treatment protocol:  http://www.davidwheldon.co.uk/ms-treatment.html, so first get some doxycycline and roxithromycin, which you will find easier to manage than azithromycin, and get going.  Doxycycline is taken at the dose of 200mg a day, split in two to start with, or all at once if you can take it.  Start roxithromycin a week or so later at 300mg a day, split in two in one amount.  Before long I took both antibiotics together, because you will find that this saves a lot of time in your busy schedule.

After three months or so, you will be ready to start on the third antibiotic: here, I would advise you to use tinidazole rather than metronidazole because it is far less likely to cause depression or make you burst into tears in front of your children!

After just over a year, David thought that I was ready to go on intermittent treatment, which I did, and then after three years I stopped and have had no regression since.

You will be able to find all the recommended supplements here, the most needed being good probiotics which should be taken every day but two hours apart from antibiotics, b12, b complex, vitamin d3, vitamin c and of course NAC once you start intermittent protocol. Never worry about writing to me if you want to know something! 

So...Im awaiting delivery of the doxy n roxy ( my new partners in crime!) and all supplements ordered.
How would you divide up the various dosages and tabs? Ie when to take all supplements and when to take the doxy/ roxy tabs throughout day.
Plus should I continue/bother taking the MS nurse/ neurologists prescribed 20 mg Copaxone daily injections when I start the MS protocol,?
Ive got coming: probiotics, B 12, B complex, vit D, vit C, vit E, omega 3, selenium, magnesium/calcium, NAC, Co enzyme Q10, turmeric.
Any advice? Any inside info as to how your body felt in early stages? Concerned as I will also be the main parent and hands on carer for our 2 kids where 1 is wheelchair bound and needs help with all.
Kiki

So, two of you both joined by me and both starting abx almost together!

First, the copaxone:  not necessary at all, but possibly useful to keep the neurologist quiet.  I have heard that it does make your skin awfully pock-marked though!

Now, the important stuff: Eventually, I took the entire dose of both the first two antibiotics together, but at first took them in two goes.  I always took both the different abx together though: there is no reason not to.

You can take as many of those supplements together as you can manage, but the probiotics and calcium you should always take two hours apart from any antibiotics, or you will be wasting your money on the probiotics and the calcium. 

Never take doxycycline on an empty stomach and don't lie down for half an hour!

Well, I'm not sure that taking copaxone is doing something positive, but I guess I shouldn't really say that. Do keep the neurologist in happy ignorance though!
In America, and some hospitals over here, you are given a copy of your mri scans on disc. The radiologist here gave us copies of my scans on film. If I felt like it, I could make a copy with my film scanner: maybe I should because I guess that the neurologist has ditched all record of me.

To be fair Im neither convinced re Copaxone but the worried me is keeping on til meds etc are here which should be shortly as in transit now. Fab advice re scans as I want to gather my own evidence. At what points once you started protocol did you end up having more MRIs? How often and such? And is there anything like certain times itd make sense to have some done for likely differences seen?
Thanks Sarah!
Kiki

Ps. Talking about calcium and probiotics intake 2 hrs AFTER antibiotics.
Does that mean that a brekkie at time of antibiotics intake should NOT consist of muesli or overnight oats ( my usual breakfasts) as oats contain calcium(??!)?
Or am I just being bit weird wondering?
Kiki

No, it just means that you won't get as much benefit from the calcium at that time but the muesli will still fill you up!

Awesome! Was trying to think how to minimise complicating breekies with meds at same time. On a military operations schedule as it is with getting kids and me sorted for school runs in the morning😊
Ps. Almost all supplements here now so asa meds arrive..🤗

Also, you can use live yogurt as a probiotic, but you can also use it to line your stomach when taking doxycycline, so long as you take more in an abx free moment. I did that!

Also, re: mris, I only had two more done after the progressive diagnosis. Two reasons really: The hospital got a brand new machine, so it would have been very difficult to accurately compare results after that. The other reason was that the first of these scans, arranged by the radiologist, at about six months after my first scan showed a great deal of improvement, which mirrored the physical improvements I had, and the next one, a year later, was much the same. The time to think about mris is when you feel you are moving in the opposite direction.

One more thing is that the damned neurologist didn't intend me to have any mris at all: he was convinced that I was on my way out. For the radiologist to arrange a second one was to his mind, way out of order. He wouldn't even look at the results. The radiologist took my scans to the chief radiologist at Cambridge, who was amazed, but nothing was done because the Cambridge neurologists decided that this wasn't possible, so there.

I'm just glad that I wasn't diagnosed until I had become secondary progressive, otherwise, being in the Cambridge region, I might have been put on a Campath trial, a short time after, had a stroke and died, instead of still alive and improving after fifteen years.

Well Ive never been a super fan of the man in white coat personally. At times Ive had to accept but mainly I listen to my gut instinct.
Ps. Pm you Sarah

Since it has gone midnight, I will reply in the morning!

😍😊

So tomorrow is the day 1. Starting protocol. Any last mins thoughts, ideas, suggestions folks?
Much appreciated
Kiki

Kiki, just start with one of the antibiotics for a few days and get used to the fact that doxycycline might make you feel a bit nauseous. Maybe it would be better for you to take it in your few quieter moments, but you'll get used to it.  I did and I had only taken two shortcourses of abx, one at the age of six and one at twenty six, but as soon as I felt something happening I was determined to get through!

Thanks Sarah!
So is it ok if I keep stuffing my face with breads/ bisquits after meds to maybe help the sicky feel? What I did spending ages being sick from pregnancies! Talking 20 weeks with both!
When does sicky feel subside with taking meds in your experience?

Kiki, you will probably find, certainly by the time you are pulsing tinidazole or metronidazole, that you lose your appetite a bit! You will only feel sick by taking doxycycline without eating anything. You must eat something with that because it is very corrosive on your oesophagus, so stay upright until your stomach acid gets to work on it!

Maybe other people are different but it was only that which affected me. Oh, and later on metronidazole made me feel weepy!

To be fair Im quite weepy these days anyways being pre menopausal and with struggling so much mentally and physically now😉

Best of luck, Kiki. My advice would be to go slowly. Wait until you are tolerating one thing before adding another. We always say it’s a marathon, not a sprint.

Last question before tomorrows start,
Is it ok to take the B complex , B 12 , vitamin D3 and Omega 3 together WITH the first 100mg of Doxy in the morning after brekkie??

Of course!!

Well...had a bowl of loaded muesli just before first tab. Waited few mins for that to settle then had half a banana with tab( no supplements). Felt bit in tummy within half hour. But did school run and mini shop in Tesco. Now home 1 hr later and fine so taking supplements now as wasn't sure to take them earlier if I felt sicky. All good!!!

Excellent!!

Day 2 going alright! Thought occured- when is a good time to consider taking full dose Doxy in one go per day and when is it a good idea to start taking the Roxy daily?
K

You can start taking roxithromycin as soon as you feel up to it. Tomorrow if you like! I only started mine later because we were waiting to get it.

As for the full dose of doxycycline in one go, try it at the weekend, when you have your husband home to take care of the children if it makes you feel sick.

It might seem like I am rushing you, but it is only what I think you can manage having talked to you!

Brill!!
You reckon to start with half dosages with Roxy too so as to get used to it? Feeling head achy today but poss from bad sleep position with neck last night.
K