16 posts Page 2 of 2
Wise words from Zoe.. I had one more thought - have you had your Vitamin B12 level checked? A deficiency of Vitamin B12 can lead to symptoms very much like MS:
http://www.direct-ms.org/pdf/NutritionM ... d%20MS.pdf
All the best,
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
From the read of your evolution of your symptoms, and the reaction you had from taking a high dose, therapeutic probiotic, it really sounds like you may need to take a close look at what is going up n with your microbiome. You know those multi trillion good and bad Bactria that inhabit your gut.

You mentioned that you were first having problems with your digestion and that you then started taking probiotics, which in turn triggered a cascade of symptoms. This is a classic tell of things not being as they should with your microbiome. They way to look at it is that I if you have gut dysbiosis and you start adding in a plethora of good bacteria, the good bacteria you are introducing go to war with the bad bacteria in your microbiome and lots of die off occurs. As the die off progresses, your immune system gets involved and various symptoms occur, many being neurological. The war was started by trying to change the balance of your microbiome.

This happens because you are going too fast. You have to start with very small doses of good bacteria so that you can control the die off. Many find it best to use food as medicine and start with probiotic foods--cultured vegetables, fermented fish, fermented coconut water, fermented teas, etc. With this, you also want to go very slowly and add more as you can. There might be times when you'll feel like you've taken a few steps forward but then you need to backtrack a little. That's how progress with this goes. It takes a while to move a barge. As you are better able to tolerate probiotic foods, you can then add more concentrated probiotics, but start slowly and build up.

Taking things like magnesium. Turmeric, other herbs and foods, etc. might help with some symptom relief but won't greatly address the root cause--the gut dysbiosis. Having said that, it is important to have a healthy diet and concentrate on the foods that help to feed the good bacteria and reduce or elimate the foods that the pathogenic bacteria like. Usually this means watching the sugary, carbohydrate rich foods. But everyone is a little different as each one of us has a different microbiome (our gut blueprint). So you have to focus on your microbiome and work on rebalancing it with probiotics and foods.

As your microbiome improves, your digestion will get better, and you'll find that symptoms will be reduced. They might not all go away but as the center of your immune system rebalances you'll have less autoimmune reaction. But this is a slow process, unfortunately. The good news is that there is light at the end of the tunnel.
Thanks for your responses. Very much appreciated.

I saw an MS specialist (bear in mind i'm still undiagnosed) but obviously he couldn't diagnose me on the spot. If you saw me walking down the street you'd probably think there was nothing wrong. He sent me for a spinal scan, the next step is neuropsychological assessment but not until November. Not sure I can hang tight that long - and anyhow, the damage being done now is damage done. 4 months ago before taking the probiotic I might have actually done ok on the assessment. But now, everything has changed, i'm clinging on so badly it's unreal. I've seen a functional medicine doc. but they won't treat unless I do some tests to prove inflammation etc. Not even sure how they'd treat. Functional docs are hard to come by in the UK.

Because of this, the fact I am undiagnosed, I can't get high-dose steroids. I don't really understand - if the probiotic has upset/stimulated my immune system, which was already attacking itself - is this my new immune system forever? Will it not calm down at all? It's been 3 months since I stopped taking the probiotic and it's still going mad, getting worse and worse. I've caught colds and infections very easily since I took it as well. I just want it to go back to where it was 3/4 months ago. I can't remember anything from earlier today let alone yesterday really. Constant unbearable migraines that are taking my cognition, not sure how much more I can take. I wish I had never ever taken the damned things, things were so manageable 3/4 months ago. Can't help but think i've absolutely had it now.

OMS diet + fish oil can do.

Is vit D a good idea (i'm definitely not on the high end of normal) or will that likely make things worse?

Curcumin? I have some but again, will it help or not?

I read earlier that B12 can enhance the inflammation so might give that a miss.
Jette wrote: Wise words from Zoe.. I had one more thought - have you had your Vitamin B12 level checked? A deficiency of Vitamin B12 can lead to symptoms very much like MS:
http://www.direct-ms.org/pdf/NutritionM ... d%20MS.pdf
All the best,

Afraid so - active and 'normal' - both well in range
Hello again, Never57

Your response gives me ample food for thought.

I can see the problem about getting hold of steroids when you have not been officially diagnosed. I was myself given the run-around for several years before I learnt of my MS. I only got to the stage of official diagnosis when I asked my GP / family doctor for a private referral to a neurologist. The appointment cost me £190 but the chap I saw got to the bottom of things pretty quickly and - as he worked both privately and in the National Health Service, was able to kick various backsides and get things moving on my behalf.

In the absence of a private neurologist referral that leaves the functional medicine option? You say you have seen one and that they won't treat you until you have some tests done. Won't they arrange for the tests? I have not seen a functional medicine practitioner myself but the website of the one closest to me (in Plymouth, UK) talks about a 2 hour consultation to take all your details and then arranging for tests that might be relevant to your condition. Would it be worth trying to get to see a different practitioner? If you want to let me know your whereabouts in the UK (by private message, if you prefer) I am happy to help you do some research on what might be available in your area.

I do think it is worth taking seriously Zoe's point about the probiotic supplement conceivably having been contaminated or a fungal infection or similar being involved. That is the kind of thing a professional healthcare provider could help with. Arranging for the relevant tests etc.

In the absence of, or pending, professional advice, here's my penny's worth:

- OMS diet: YES (include lots of vitamin C-rich foods - very important for immune system)
- Gluten-free: YES
- Omega 3: YES (fish oil, at least 1000mg DHA a day)
- Vitamin D3: YES (very important for immune system. Take 10,000 IU a day?
- Magnesium: YES (responsible for 300+ enzyme reaction & may help migraines)
- Ginger & Turmeric: YES (you could start gently with herbal teas. The Pukka brand is lovely)

Your gut microbiome & immune system
KeithJVaz is very well-informed about microbiome matters and I would give a lot of credence to his diagnosis of what has gone wrong for you. AND to the prediction that there is light at the end of the tunnel. If you can change the composition of the gut bacteria once, you can do it again. But it will take time. I have been actively trying to improve my gut health for the past 9-10 months and am beginning to see some really positive results (including sometimes feeling ridiculously positive when everything is going wrong and I ought to be thoroughly miserable!) So don't lose hope. You can sort this.

If the very high-dose probiotic led to a veritable war in your gut, and all your horrible symptoms are the result, then you need to support the good guys in your gut. As Keith says, that means staying away from sugar and refined carbohydrates (which are quickly turned into sugars) as these foods feed the bad bacteria. To nourish the good bacteria, you need prebiotic foods. As far as I know this mainly means insoluble fibre. You get this from root vegetables. Bananas are also good. Looking up 'prebioticc foods' online will give you more ideas.

I have learnt the hard way (though not as hard as you) to take it slowly when it comes to dosing myself with assorted self-help remedies. Keen to up my intake of pre-biotics, I started taking acacia gum and followed the advice from a clinical study to take 10g a day. The study reported that subjects had no side effects but I got an evil gut ache and had to cut back to 1/4 teaspoon and gradually build up. I have done much better with adding baobab powder into my diet. This extraordinary fruit is 50% fibre (which may conceivably be what the disease-prone Western diet is really lacking). I started adding baobab powder into my food several times a day just a few days ago and had experienced no negative effects at all.

The last thing you want to consider at the moment is probably pro-biotic foods & drinks but down the line, you might benefit from boosting the good bacteria in your gut with some fermented foods / kefir /kombucha. When you are ready, I am happy to pass on what knowledge I have.

Supplement to aid memory & cognition
As I have said before, I would much sooner you took more professional advice than mine before self-administering remedies but having said that, I have been quite excited to learn about black seed oil (pressed from the seed of Nigella sativa / Love in a Mist). This oil has been used for thousands of years in Ayurvedic medicine for a number of purposes and has only relatively recently begun to attract attention in the West. A study published in 2013 (first link below) reported significant improvements in the short term memory & recall of human volunteers after 9 weeks of taking 500mg Nigella sativa oil twice a day for 9 weeks.

I don't have troublesome cognitive issues myself at the moment but started taking Black seed oil a week ago to help with physical issues. I have to say it seems to having a remarkably positive effect even after such a short time. I bought it as a liquid oil and take a teaspoon twice a day.
https://www.amazon.co.uk/d/Health-Perso ... B003Y3ZIXE

Do report back to the forum on what you decide to do, won't you? You already have a big group of virtual friends here wishing you well.


Black seed oil / nigella sativa:
https://www.omicsonline.org/open-access ... ?aid=67144
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
Just a thought..
When I was trying to find other causes for my symptoms other than M.S things to note are..
Aspartame (diet sodas, gum etc.. ) cause similar symptoms.
Hughes syndrome
Many vitamin deficiencies.
You have some great advice from others. All the best.
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