Old questions

Interrupted · Post by **Interrupted** » Tue Nov 23, 2010 5:39 am

Hiya,

I have MS and CFS and have always believe that viruses and bacteria are the root cause of a lot of my problems (not all, CCSVI could be the other unknown factor), but pleas to every medic i've ever seen for anti-viral drugs have been met with blunt refusal.
I focused on viruses because of the associations with EBV etc. that go with CFS. I have been on advanced homeopathy for years for a vast burden of viruses that my body just cannot keep ousted because of a malfunctioning immune system (according to said homeopath). It's not strong enough so I need to try another route.

SO, I was all prepared and ready to start the controversial Marshall Protocol as it seemed to be about the only thing that purports to go deep enough and work on altering the immune system, and then I saw postings on here about CPn and ABX (which I haven't read enough on yet to fully follow) and argh confusion! lol

I'm feeling the methods employed here may be a bit safer and do much the same thing, are they different ways to the same end?

Thanks for any help/advice

SarahLonglands · Post by **SarahLonglands** » Tue Nov 23, 2010 6:09 am

The main difference between Marshall and Vanderbilt is that Marshall only gives sub-clinical doses, which is worse than useless. AS I said in my PM, email me and then I can send you some papers.

If you live in the UK, you might like to make an appointment with Dr. Wheldon, my husband. You will only have to pay for the prescription.

Sarah

Interrupted · Post by **Interrupted** » Tue Nov 23, 2010 8:25 am

Yep sorry Sarah, my brain wasn't putting 2 and 2 together last night, was off in cogfog land somewhere

Ok reading a little more from the CPn and your husband's websites and will then email you and perhaps think about booking an app't if it's not too far. Will also read a lot of the threads here to pick up the gist of how people are doing in the main and the pitfalls x

SarahLonglands · Post by **SarahLonglands** » Tue Nov 23, 2010 9:29 am

Wise to be cautious if you aren't too bad at the moment, but I must say that much to my amazement, my cogfog was the first thing to clear up and I didn't even really know I had it: everyone else did, though! A few months before I had stood in a local auction rooms viewing space and actually watched an upright piano falling towards me, but it didn't register until a burly farmer's wife rushed to save me. Dim or what?

Sarah

Interrupted · Post by **Interrupted** » Tue Nov 23, 2010 11:01 am

I wish, but no i'm 30 and have had this for 10 years. CFS diag 2000, MS 2005 but it's one and the same n the most part I reckon. It literally started over the space of a week back in 2000 and I haven't been functional since. Lost the whole of my twenties and the hope of ever working again to nothing but becoming a victim of a nasty constant slide of cyclical symptoms. I don't normally term that as cogfog but people here seem to, I suffer from what some people call 'derealisation' 24/7 - don't feel alive, have trouble connecting to my own body, and life's like a tv screen. Loathe it, so (little as I believe it would now) if it goes i'll be over the moon! Still, hope is a must

Interrupted · Post by **Interrupted** » Thu Nov 25, 2010 3:44 am

Dr W won't take me on because i've had CCSVI surgery

Which I admit I wasn't expecting to be of any consequence and has thrown me a bit to be honest as I had hopes for this. My brain was really focused on absorbing all information I could find as it's in line with what I feel is wrong.

So um, I guess can anyone help with any advice on going it alone or any other doctors who might be willing to help?
(I know mine won't, i'd already spoken to him separately about the MP and anti-v's to no avail)

Thanks for any advice xx

SarahLonglands · Post by **SarahLonglands** » Thu Nov 25, 2010 5:53 am

I'm very sorry about this, but the trouble is, both ccsvi and Vanderbilt antibiotics are not classed as acceptable therapies for MS, so if something went wrong with you, the last person to treat is likely to get the blame. Antibiotics are pretty harmless, but try telling that to a neurologist. Nobody can stop you doing it yourself and all the information is here. There are places you can buy abx without prescription: ask on CPn Help. However, to start with you could do worse than take plenty of vitamin D and other of the recommended supplements along with your LDN.

Sarah

Interrupted · Post by **Interrupted** » Thu Nov 25, 2010 8:18 am

Yeah I know but I just kinda wanted to go with this one over MP because the support would have been better and it wouldn't have been so expensive. I think it's so clear that this has more than likely caused a majority of my problems.

It just thoroughly upset me to be honest because (partly it's just been an awful day of bad news after bad news) even people who seem to be on your side discard you if you dare try something else. But we have to. Though I understand why it is this way in many cases, it feels brutal. I do think anything going awry would be rather obvious as to the cause in this case though. Risking culpability is a mire though, i'm sure.
I'm so tired of everything being a fight, getting me deeper in debt to make happen, or feeling like you're floundering without someone knowledgable to support you when you find something that strikes a chord.

I'm not on LDN, it did nothing for me. I've been on most of the supplements recommended for years, although the NAC is something I will try for sure.

I think it's just a bad day that's gone down and down, tomorrow will be brighter i'm sure! Well thanks for the advice and I wish everyone on it steady improvement and wonderful surprises

x

SarahLonglands · Post by **SarahLonglands** » Thu Nov 25, 2010 9:22 am

Watch out for an email!

Sarah

Interrupted · Post by **Interrupted** » Thu Nov 25, 2010 10:33 am

It put the biggest smile on my face!

That's amazing, thank you both! I just want to talk it over with someone who knows best about it first really, see whether they think i'm strong enough and if symptom history is suitable. So marvellous, how a day can change right round!
I think it gave me such a downer because i've had my head and consequently heart absorbed in it for the last week and didn't realise how much I was attached! xxxxx

SarahLonglands · Post by **SarahLonglands** » Thu Nov 25, 2010 10:53 am

Well, I'll tel you, when David first told me about it, I thought it would never work for me, but how I was wrong!

Sarah

Interrupted · Post by **Interrupted** » Sun Nov 28, 2010 3:53 pm

I generally try and avoid supplements with fillers but guess it might not exist with this so... can anyone give me a hint where to find veggie (or at least gelatine free) NAC in the UK?

Thanks

Interrupted · Post by **Interrupted** » Mon Nov 29, 2010 6:36 am

Another question (sorry)...

Knowing how commonly EBV and GF are mentioned in relation to CFS, and actually more so XMRV is associated now... what about viruses?

Will abx deal with longstanding and low lying viral burden by the immune system functioning properly again, or are anti virals needed if these are in play?

SarahLonglands · Post by **SarahLonglands** » Tue Nov 30, 2010 7:13 am

A good way of buying top quality supplements at good prices is to buy in bulk from the USA. Vita cost and I herb are the best. You can find things there that are gelatin free or kosher.

As for viruses and allergies, I have not had a cold since completing the treatment and my previous strong reaction to mosquito bites seems to have gone: I still get bitten but hardly notice it.

Sarah

agatha · Post by **agatha** » Fri Dec 17, 2010 1:29 pm

Hello
I have been on the Wheldon protocol for about 18 months and feel tons better - like you I always thought it must be viruses but the abx have undoubtedly produced a massive improvement in all sorts of areas. I might think about doing something antiviral like Monolaurin at some stage but i want to do one thing at a time so i can see what is affecting what. I'd say go for it!
bw
Agatha