This Is MS Multiple Sclerosis Knowledge & Support Community

Hi there, welcome to my new shiny blog/diary. I'm 31, have had MS and CFS for 12 years (lucky me!) and I don't believe either are illnesses in their own right, but i'm sure i'll babble on about that later! I've had CCSVi surgery, it made things as lot worse and i've done a gazillion other things but for the last year i've been itching to give ABX a go because it focuses along lines that I have always believed to be the cause of MS/CFS and a lot of other illnesses. This post is a work in progress of getting info down so please bear with me...

Started the Wheldon protocol on 13/02/12
Also working towards going from a 75% RAW diet to 100% RAW at the moment.

13/02/12 - 100mg Doxy/day
16/02/12 - 200mg Doxy/day
???

Supplements List
Vit C
Vit D3
Vit E
Vit B Complex
Vit B12 spray
Amino Acids
Greens Mix
Bromelain
CoQ10
Carnitine
L-Lysine
Nattokinase
Biotin
Selenium
Folic Acid
Zinc
Mag Gly
Olive Leaf Extract (when needed)
Oil of Oregano (when needed)

Chlorella Vulgaris
Spirulina
Charcoal (ready in case of porphyria)
Super ProB complex and Acidophillus
Aspirin 75mg/day


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I don't bother listening or judging such ridiculous things as EDSS etc. i'm afraid. It's all rubbish, variable and means nothing when you don't fit any of the nice little comfy compartmental numbers they like to put you in for no reason other than delaying bothering to find out that what causes MS symptoms (because to me it IS symptoms or a result and NOT a disease in it's own right!) Just my opinion though, obviously. Personally I believe MS symptoms are cause by a problem between DNA, herpes viruses, infections and a really misguided/diverted immune system

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Complete Symptom List for Feb 2012 (and /10 rating)
Grneral: Fatigue (9)
General: Weakness (7)
General: Stamina (9)
Consciousness/derealisation from life (9)
Eyes: Sensitivity (8)
Eyes: Pressure (7)
Eyes: Blurring/grain/double vision (7)
Head: Pressure (9)
Head: Migraine (8)
Head: Stabbing pains (6)
Head: Sinuses (6)
Head: Earache (3)
Head: Vertigo (4)
Glands: Neck (7)
Glands: Other (2)
Chest: Double girdle/band/hug chest and stomach (7)
Chest: Pain (3)
Chest: Breathing trouble sporadically (8 when happens)
Chest: Heart fluttering/slowing, feels like heart is going to fail/stop (9+when happens!)


P.S. 1=not too bad and 10=torturous.
(incomplete, still working down the body on this! lol)

[Edit] FINALLY started on 13th Feb

Interrupted, I wish you the very best of luck! I think I know which doctor you have found and really, you couldn't be in better hands.................Sarah

another person on ABx therapy:
https://www.racv.com.au/wps/wcm/connect ... her-guitar

It seems to me that Bree-Anne was taking antibiotics but is not now taking anything, but relying on naturopathy. This may well be enough for someone so early in the disease. I wish her well. However, people like Interupted and myself needed something a little stronger! Sarah

Good lord, that took forever!

So I finally started on 13th February, did a few days of 100mg Doxy, now at the 200mg Doxy stage.\

All been rather horrible, had a massive relapse a month ago that's still going on and getting better/worse in different ways. I started literally the day after a disastrous 3 out of 5 days on steroids that I swear only made the relapse return! So right now i'm still being crucified round the middle with some kind of crushing device, concrete hands, have so much pressure and sensitivity in my eyes that looking at ANYTHING is painful, and I can feel my legs on the way out for a second hit. Yay for how much of an evil, recurrent arse "MS" is!!!

Mind you, at least i'm now on some thing I WANT to be on and that makes sense to me so fingers crossed and focus!

It might have taken forever but hopefully it will work! Best of luck.....................Sarah

[edited] 2 weeks

Firstly, i'm keeping a vlog on how I get on with the protocol here http://youtu.be/W0H2iiuA-5o - be lovely if you'd like to subscribe, comment, share your experience, say hi etc.

Ok so i've done 2 weeks of 2x100mg Doxy a dayand am starting th Azith' (it is ONE every Mon/Weds/Fri, right?) today, possibly not the best of days as for some reason i've taken my morning Doxy (and NAC a couple of hours later) and for the first time really feel like i'm going to throw up. Odd.

Basically all I can report thus far with the Doxy is a very acidic stomach, a resurgence of weak legs and l'hermittes as of the last 6ish days (which i'm really not happy about), constant headaches and sore eyes (the eyes were before the Doxy thpough). The most relevant thing I suppose since I started this, is that the big relapse I had before it (that had started to subside quite nicely) has come back with a vengeance and I seem to be a little unusually hormonal! lol. BUT i've had so much stress, the break up of a long term relationship etc. over the last few months so i'm not attributing anything to anything right now, just trying to get by in one piece and make sure I take the abx regardless!

The only questions I have right now are about how people juggle all the abx.
- Can you take a Doxy and Azith together or do they have to be split?
- And when is the best time to take probiotics, I would assume overnight? Do they even work since they need to culture to have effect or are they a waste of money?

Thanks if someone could drop some answers to any of these x

One day later 28/02/12 and the day after first Azith' (for myself as much as anything to remember date) things have turned nasty and a bit frightening on the legs/lower back, heart and consciousness front.

Hey, I like the YouTube name! I might make a comment but I have been trying to stay anonymous on such places as YouTube and Face book, known for my art rather than an illness.

Answers to your questions:
You can take doxy and azith together: it makes life easier. To start with I took everything separately but David said I didn't need to. When you start flagyl or tinidazole, you will appreciate that.

As for probiotics, you just need to keep them at last two hours apart from any antibiotic, apart from flagyl or tini, where it doesn't matter. Oh, calcium and magnesium you need to separate from doxy in the same way.

Re your one day later post: for the first two weeks, I was out of it, delirious much of the time, but suddenly I snapped out of it.

Sarah

Interrupted, Wherever things have 'turned nasty' is where cpn colonies are being addressed by the abx. At least you know it's WORKING! Congrats!

Thanks Sarah, I know what you mean, I wasn't keen on putting a face to a comfortably innocuous name but a friend of mine, I suppose, convinced me of the merits of being more open and doing things like vlogs. Especially when they are on a subject where there's little content existing as such. That said, I will still have a different channel for stuff I don't want associated, so therapy only goes so far with vlogging! haha
Thank you for the answers - makes life a bit easier

Mackintosh: Thank you for responding. Hmm well i'm not sure whether i'm sold on that theory, it seems a bit too much of a desirable answer that often gets given to this kind of treatment and detoxes etc. Bearing in mind I have no idea if I even have cpn, I think realistically all I can do right now is hazard a guess it's somewhere between the existing relapse and inflammation on that big ass lesion (not literal ass lesion, I hope!) and my brain, and "something" the abx are doing. Whether it's side effects or them doing good things I can only wait and see, but hope the latter
I love your quote by the way, very heartening x

It's just something to file in the back of your mind and use for comparison later.

It makes sense to me. We know that most of our original MS symptoms are caused by inflammation, antibiotics attacking the cpn cause inflammation, then the inflammation from the die-off manifests itself like MS symptoms, which sometimes makes people think abx treatment is making them worse.

David Wheldon addresses these early 'flare-ups' on his pages as 'pseudo exacerbations', and explains the science behind it. I'm scientifically challenged, so I leave that stuff to the microbiologist.

May the force be with you.

I think that you are actually writing much better now: maybe it is because you feel that you have started the right thing. David thinks that your doctor is a very fine person. Get in touch with Boadicea on CPn Help and ask her about her friend who works with him.

Sarah

I think i've given in to needing to communicate openly on the internet to do it, to be honest. It still makes me uncomfortable and I still prefer writing in short elsewhere, lol.
I hope i'm on the right track, but I am realistic and have heard both sides of the coin from great success to apparent failure so know it is not something that will work for everyone. For me though, yes i'd rather be on either this or Valtrex - plus eating RAW than doing anything else

Good, glad to hear he approves, we had a bit of a glitch but I do appreciate his help. I think I know who you mean, he wants me to go in and see him at work to talk to her - I will do at some point when I can get a lift over. Be very interesting to hear her story!