Has anyone tried a course of CS? Out of desperation, rather than scientific reasoning, i decided to give it a go. Done one week so far.
Hi Clarkey, I don’t know if it works or not… but I did briefly work for a guy that sold it online… this was about 15 years ago in the States. He was a complete con-man. I remember him writing the ‘testamonials’ himself for CS and other alternative therapies. Basically he was a crook. I didn’t work for him for long… and only worked for him at the time as was desparate for a job.
Of course that doesn’t mean that CS doesn’t work… but it does point out that these things are not necessarily marketed by ethical people.
Anything’s worth a try I suppose providing it doesn’t cost a fortune & I do hope it helps you.
Thanks Pat. There are a few distributors and manufacturers in the UK now. It was suggested to me by an MS nurse. She goes along the line of perhaps MS develops by a trigger. Glandular fever is one suspect. As I had it for 2 years in my teens, I decided it could be worth a go. But it hasn’t stopped me from getting a cold! I think I will complete the course, then probablly leave it, unless I do start feeling an improvement, or there are any positive comments. I do have my doubts though…
My daughter came back from uni just before xmas and was not well. GP strongly suspected glandular fever. A friend advised me to get CS and olive leaf extract for her. After a few days her glands were down and she was feeling much better. Turned out though she did not have glandular fever as blood tests were clear. I have started to take CF - finish the bottle so to speak. They are both very good for UTI infections I am told.
There are folk (Barts MS Blog) who believe that the epson barr virus is a trigger for MS. So if we could remove this virus from our system could we be removing the trigger?
Hi Moyna, interesting… but I think once MS has been triggered that’s it. Even removing the trigger won’t help, cos the damage is done & the immune system will continue to see the damage as a foreign body.
However I’m not a medical person so that is just my take on it.
Very interesting that it is said to be good for UTI infection. Let us know how you get on.
Thanks Moyna & Pat.
According to the manufacturer, CS is supposed to alleviate various viruses. It’s still not got rid of my cold!
I try to keep an open mind on various theories around MS, so willing to give most reasonable things a go. I think I have to, especially when my neuroplogist doesn’t go with the auto immune theory! (And he is part of a major university hospital, not unknown for its neurosciences)…interesting, isn’t it?
Professor Giovanonni at the Barts & London doesn’t support the auto immune theory either, so your neuro is far from alone.
In the spirit of being open minded, have you considered ldn as a possible treatment? Take a look at www.ldnresearchtrust.org and see what you think.
Cool. I have printed out the fact sheet to present to my GP to request the prescription.
I am currently on some serious (unlicensed) immuno-suppressants for another condition (unfortunately more serious than PPMS)! So I understand the procedures required for getting a drug which is not officially for the prescribed condition.
If I get it, I shall let you all know the outcome.
Thanks for your help.
My GP has been prescribing ldn for nine years and I hope yours is equally open minded, although it is easy to get privately if this route fails.
Let me know if you do get hold of the stuff, because there are a couple of tips that might help.
I must apologise for not drawing my colloidal silver trial to an end… It did absolutely nothing for me, other than extract a few quid from my bank account! I attended a fab “conference” about research. LDN was very much frowned upon. A chap there had been on LDN for a couple of years & does not recommend. Stopped gabapentin this week. No ill-effect so far. Self medication appears to be key so far.
Well Clarkey you try your best to find something that helps… and that’s all any of us can do.
The LDN debate goes on… (and on!) but it does definitely help some people on here so it’s worth keeping an open mind about.
Thanks for update,
I agree. LDL in the audience did not seem to have positive vibes. I am feeling a little better now I have dropped gabapentin for a few days now. I just hope the horrible burning pains don’t come back. But I already move my legs better. This has left me a little confused to understand why. Onwards and upwards…
Hard to say why Clarkey… might be coincidence… but could be a good response to coming off Gaba.
MS is so changable I often find it impossible to pin down something that’s not helping.
When a first tried high-dose Vit D3 (few months back) I immediatly felt terrible… all symptoms worse… so assumed it was the Vit D3 and stopped taking it.
Couple of weeks ago neuro suggested I take it… so I started again… and now seem ok… well apart from mega fatigue but that is with me most of the time. I’m hoping Vit D3 might help with it… too early to tell yet.
Hope your legs continue to improve,
Cheers Pat. Just started vit d today. Fingers crossed for us both. I will take gabapentin if the burning comes back. It’s too much to deal with, like someone’s holding a lit match to my skin. Fatigue is pants. What I hate about it, is that it’s not something you can explain easily to anyone without ms. I think we all on occasion are made to feel guilty or lazy, especially when a healthy person says “I’m knackered too”. Ahhhh! I talked to my nurse about this. She suggested fatigue management classes. Have you tried these? Claire
Hi Claire, I did try some cognitive behaviour therapy for fatigue a few years back.
At that time I had dx of ME. Didn’t find it particularly useful. It was really just common sense stuff… like taking breaks when you are doing something… resting the day before you have to go somewhere etc etc.
I’ve given up saying I’ve got fatigue to most people without MS. I just say I’m ill or my MS is playing up. They just don’t ‘get’ fatigue… yes the ‘I’m knackered too’ get right on your nerves! They have no idea!
Yes let’s hope the Vit D helps…
What I hate most is when the fatigue is mixed with a sort of nervous restlessness. So I’m very very tired but can’t seem to relax. That one really does my head in.
Hey ho… MS - the gift that just keeps on giving…