Want to start Dr Wheldon's protocol

[melly32]

Hi all, I have just become a member of the forum after constant reading for the past week A brief history, I am going to be 32 on Wed, I was diagnosed with MS when I was 24. I had been doing quite well at first with Avonex but then started having relapses after 5 years and decided not to carry on taking it (even though according to my neurologist it was working). From there I started doing my own research. I am now on LDN, take loads of vits and have cut out red meat, dairy and am trying to completely cut out gluten (proving a bit harder, but I will keep trying), I also eat loads more fruit and veg now.
Last year I had my first child and since having him I have been declining steadily! Now my son is starting to walk and I can't help him along, so I am determined to do whatever it takes to get better.
My walking is affected, (I can't walk without the pram, so when I stop using the pram I will need to look into getting a walker), my legs are very stiff all the time, but the worst is probably my balance.
I have found a doc here in Gibraltar who will prescribe the antibiotics so have decided to start on the Dr Wheldon protocol.

I have got this list of supplements from his website:
Probiotics
vit D3
Vitamin C 1G daily
E 800iu daily
Omega 3 fish oil daily
Evening primrose oil 1G daily
Acetyl L-Carnitine 500mg daily
Alpha Lipoic acid 150mg daily
Ubiquinone (Coenzyme Q10) 200mg daily
Selenium 200 micrograms daily.
N-acetyl cysteine 600mg twice daily
melatonin 1.5mg at night may be considere
B complex
mag/calcium

Am I missing anything I should also take?

Then are these the 3 antibiotics I should take?
Doxycycline
Roxithromycin
Metronidazole

I have also read a lot about minocycline, is this a different protocol? Or is it something people take if they don't tolerate these ones?

I'm not sure what would be best to try so any advice would be welcome.

Will this make me feel worse before I feel better?

Thanks guys.

[SarahLonglands]

Hello Melly!
The supplement list seems OK, but you might like to increase alpha lipoic acid somewhat. Activated charcoal or chlorella are also useful to help eliminate a toxin build up as the abx start to work.

I presume that antibiotic rules are the same on Gibraltar as in Spain, s luckily you will have no difficulties in getting roxithromycin.
The antibiotics are the main things in this protocol and the minocycline protocol is something else: a smaller dose taken not as an antibiotic but as an immunomodulator so it won’t necessarily stop you getting relapses because the infection can still carry on.
You seem to be still quite early in your disease and after a pregnancy people do often get suddenly worse: of course you want to be able to walk unaided with your young child, so this seems like the ideal time to start.

What is now recommended is to start with N-cetyl cysteine for a couple of weeks: some people build up slowly on this. Then start abx, but leave the metronidazole for about three months. You should really build up on this slowly when the time comes because with a young child you want to reduce the bad effects as much as possible. Having said that some people do not experience any bad effects. I felt a bit fluey for the first couple of weeks but then it was all plain sailing, by and large.

For your sake and that of your child, I think you should start as quickly as possible: remember to take the minerals at least two hours away from the antibiotics, likewise the charcoal, because this might clear away the antibiotics as well before they have done their daily job! Probiotics as well, need to be separated for obvious reasons, but you can take the minerals and the probiotics together: it is only the charcoal needs to be completely separated. Even chlorella you can take with other supplements.

You might like to try looking at www(dot)cpn(no space)help(dot)org for more help and advice.

Best of luck!
Sarah

[melly32]

Hi Anecdote, thank you so much for replying!

Gib is actually British and therefore follows the UK in everything...is there a problem getting hold of roxithromycin?

Is the N-cetyl cysteine easily found in health shops? I have not heard of it before. I will go to town tomorrow to search for it so that I can start as soon as possible. What dose would you advise I start on and what should I expect to feel once I start on it?

My mother also suffers from MS, do you think this means that it is more in our genes rather than some bacteria?

Sorry for all the questions! I have already been reading loads on the CPn Help website, I just have so much I need to ask to get things clearer in my head.

Thanks again, I really appreciate it!

[melly32]

Oh was also wondering if there is any blood test I should do to check whether I have Cpn or would you say to just start the abx?

[SarahLonglands]

Your doc might well be British, but most docs in this country will say that roxithromycin is not licensed: it is but is not generally available and has to be got from France, where it is manufactured. I don't know if Gibraltar uses English or Spanish medical regulations, but in Spain it is readily available. If he doesn't want to use roxi, azithromycin is the one to go for. Roxi is easier to take and is more bio-available, though.

N-acetyl cysteine should be readily available in some health shops. Start at 1200mg, which is two tabs and if you can tolerate that, double it.

People will only develop MS if they are genetically programmed to do so: you and your mother both were but nobody else in the family might ever get it. I am the only person in my family with it.

Testing is very difficult so the best thing is to just get started. I was tested but my results were very low. On the other hand I reacted straight away, so it was there. My doctor would not have treated me though, with that reading.

Sarah

[melly32]

Ok, thanks again

I have started on the N-acetyl cysteine, will build it up slowly as you suggest. After 2/3weeks I will start the first of the abx.

I will become a member of the Cpn forum also for any other abx specific queries I have.

Wish me luck

[SarahLonglands]

Good luck!!

[MacKintosh]

Melly, Best of luck to you. It's overwhelming, when you begin, but it becomes second nature in a few weeks. Get yourself an ice cube tray and parcel out a week's worth of vitamins and supplements, to make it easier on yourself. I put mine in a kitchen cupboard, to keep it from the kitten, but easily within reach for me.

At first, you'll be telling yourself you never took so many pills in a month and now you're taking them daily. (Takes some getting used to.) After a while, you'll buy your supps in the largest dose possible, to minimize the number you have to swallow and you'll teach yourself tricks to swallow when the last thing your brain wants is ONE MORE PILL.

Basically, if you set your mind to just DOING it, it goes much better than worrying over each twinge and ache and 'symptom'. You really are taking the best available steps toward beating this miserable life-stealing disease.

[melly32]

Hi MacKintosh, I've just seen your post now! Thanks for all the advice It does all take some getting used to doesn't it!

Quick question, does anyone else feel sick after taking Doxy? I take it in the morning with plenty of water, which is how I was told, but now that I've upped it to 200mg it is really bad. This morning I actually vomited How do you advise taking it to avoid the nausea and sickness?

Other than that all is going well, I just feel a little sniffly and when I started I was sneezing loads for some reason. My urine is also a dark colour, which it has never been since I drink loads of water, is this normal?

[bartman]

I'll answer your question. Take your doxy with food and this should solve your problem. What you are experiencing is very common and a little food in your stomach will help a lot!!

[MacKintosh]

Agreed. And, you could take 100mg doxy in the morning and 100mg at night, if it makes things easier for now. Just don't take it within half an hour of lying down, as the doxy can cause reflux and damage to your throat.

[melly32]

Thanks guys, am going to try taking it now with food see how I feel

[supaguy]

Hi & good luck with Wheldon CAP.
One thing that you are not absolutely right with is this: you state "The three antibiotics" and then you list
Doxycycline
Roxithromycin
Metronidazole
With the 2nd two you list both have alternatives i.e. azithromycin instead of roxi and tinidazole instead of metro. You may have to go with what is available to you. My tipple is doxy, roxi & tini.
Whatever you do, good luck, friend.
G

[emmagib]

Hi Melly,

I am also living in Gib and finding it very difficult to find a Doctor who will prescribe me antibiotics as per the Wheldon protocol. I'm diagnosed positive with CPN and reading your comments interested to see that you found a Dr who will prescribe combined antibiotic treatment in Gib. Could you possibly let me know which Doctor?

regards,

Emma.

[melly32]

Hi all, been taking the abx with food and I'm not feeling sick anymore,so thanks for the advice.

All I meant with the 3 abx is the ones that I have been prescribed, you are right that there are alternatives, just those are the ones I'm using

Hi Emma, I found it very difficult at first finding a doctor, no GP at the health centre wants to prescribe it. One told me that there was no way she was going to allow me to bombard my gut with these antibiotics. I decided to go private in the college clinic, and took print outs of Dr Wheldons site so that he could read and understand what I was doing. Go see Dr Begelin as he's the one who is seeing me so is aware of the protocol.

Let me know how you get on