Supplements - would anyone mind making some suggestions?

[Ginger]

Hello!

I was a member of this forum before but got very depressed about seeking help and failing. But I'm back to try again, all we can do is try right?

I was diagnosed with ME a number of years ago now. I've been trying to make sense of what I've been reading on here but brain just won't process it!

Currently I am taking:
- Solgar Methyl B12 1000mg x 3 a day sub lingual (upper lip positioning)
- Niacinamide 500mg http://www.amazon.co.uk/FSC-500mg-N...1390838709&sr=1-2&keywords=niacinamide+500+mg
- CoQ10 100mg http://www.amazon.co.uk/gp/product/B0019GW3G8/ref=noref?ie=UTF8&psc=1&s=drugstore
- Lamberts fish oil 1100mg http://www.amazon.co.uk/Lamberts-Pu...=1390838604&sr=8-1&keywords=fish+oil+lamberts
- Magnesium oil spray http://www.amazon.co.uk/Better-Magn...id=1390838875&sr=1-1&keywords=magnesium+spray
- D3 5,000iu http://www.amazon.co.uk/Healthy-Ori...ore&ie=UTF8&qid=1390838785&sr=1-1&keywords=d3
- Multivitamin with iron

Can anyone make any suggestions for what I should be adding to this to potentially improve my symptoms?
I have only recently started taking the methyl b12 and niacinamide.

I was taking ascorbic acid vit c powder in water but was worried that it was bad for my teeth.

Drenching night sweats are probably the second most frustrating symptom for me next to the fatigue. I get them nearly every single night (probably about 5 nights a year when I don't) . Anything that could help with this would change my life no end, I know with ME I'm unlikely to get refreshing sleep but waking up dry would be a nice start!

Thanks

 

[NilaJones]

I am not very knowledgeable, but doesn't the niacin counteract the b12? (And I assume you mean mcg, not mg, of b12.)

 

[Soundthealarm21]

Hello!

I was a member of this forum before but got very depressed about seeking help and failing. But I'm back to try again, all we can do is try right?

I was diagnosed with ME a number of years ago now. I've been trying to make sense of what I've been reading on here but brain just won't process it!

Currently I am taking:
- Solgar Methyl B12 1000mg x 3 a day sub lingual (upper lip positioning)
- Niacinamide 500mg http://www.amazon.co.uk/FSC-500mg-Niacinamide-Vitamin-Vegetarian/dp/B0013GAKIW/ref=sr_1_2?s=drugstore&ie=UTF8&qid=1390838709&sr=1-2&keywords=niacinamide 500 mg
- CoQ10 100mg http://www.amazon.co.uk/gp/product/B0019GW3G8/ref=noref?ie=UTF8&psc=1&s=drugstore
- Lamberts fish oil 1100mg http://www.amazon.co.uk/Lamberts-Pure-Fish-Oil-1100mg/dp/B002IDPQ3S/ref=sr_1_1?ie=UTF8&qid=1390838604&sr=8-1&keywords=fish oil lamberts
- Magnesium oil spray http://www.amazon.co.uk/Better-Magnesium-Original-Spray-100ml/dp/B002VPDX4W/ref=sr_1_1?s=drugstore&ie=UTF8&qid=1390838875&sr=1-1&keywords=magnesium spray
- D3 5,000iu http://www.amazon.co.uk/Healthy-Ori...ore&ie=UTF8&qid=1390838785&sr=1-1&keywords=d3
- Multivitamin with iron

Can anyone make any suggestions for what I should be adding to this to potentially improve my symptoms?
I have only recently started taking the methyl b12 and niacinamide.

I was taking ascorbic acid vit c powder in water but was worried that it was bad for my teeth.

Drenching night sweats are probably the second most frustrating symptom for me next to the fatigue. I get them nearly every single night (probably about 5 nights a year when I don't) . Anything that could help with this would change my life no end, I know with ME I'm unlikely to get refreshing sleep but waking up dry would be a nice start!

Thanks

What kind of a diet do you follow?

Do you have a history of antibiotic use?

Have you been exposed to mold that you are aware of?

What forms of vitamins are in the multivitamin? (Specifically B12, Folate, and B6)

 

[SOC]

Have you seen an ME/CFS specialist? One that uses medical treatments, I mean, not the psychobabble ones.

Have you looked into hypothyroid or OI, both of which are fairly common in ME/CFS? Both are treatable to some extent, and treatment could reduce your fatigue-related symptoms.

Night sweats are a known problem related to hormonal issues in women of a certain age. Have you had hormones checked to see if that might be an issue for you?

If you haven't looked at the ME/CFS Primer for Clinical Practioners, that might be worth doing. It has some treatment possibilities, along with a lot of other helpful information.

 

[Ginger]

Thankyou for replying!

Sorry, yes I did mean mcg instead of mg for the B12. I'm not sure about niacinamide counteracting the B12 Hadn't thought of that...better do some googling...

Diet: I'm a vegetarian, eat fairly healthily for my meals but do go through times of indulging in sugary snacks. Low carb makes me feel terrible.

Antibiotics: as a teenager they tried me on about 3 different antibiotics for acne. Also as a child I had frequent sore throats/tonsillitis that sometimes got treated with antibiotics but I couldn't tell you how many times.

Mold: Not that I am aware of apart from my nightsweats caused my old memory foam mattress to form mould.

Multivitamin: http://www.tesco.com/groceries/Product/Details/?id=273211091 This one. Contains only 2.5ug B12, 200ug folic acid and 1.4mg B6.

ME/CFS specialist: I'm in the UK and have a GP with the view that ME/CFS is people unable to cope with modern life who can think/act themselves better. He says he has sympathy with people with CFS but he is pretty unwilling to help with any symptoms or explorations/tests. He is the best of the GPs at my rural practice. 4 or 5 years ago (from a different surgery) I was referred to the local ME service which has since closed down but that was an occupational therapist explaining pacing and giving out relaxation CDs.
I had the mitochondrial function test with Dr Myhill. GP unwilling to support this and dismissed letter. No idea how I can access an actual MEDICAL ME/CFS specialist in the UK on the NHS when the gatekeeper GP refuses to do anything but lecture me about how my partner is "enabling" my illness by helping to look after me.

Thyroid: They did a thyroid test at my old GP surgery a few years ago and it came back normal. I had read about OI before but when I mentioned it to my GP he brushed it off. I will read into this again, thankyou.

Age: I'm 26, so hopefully not menopausal! The night sweats are cold sweats often accompanied by nightmares. I haven't had my hormones checked that I know of.

Thankyou for the link to the ME/CFS Primer. It is a lot of reading, I'm starting to plough through and its very interesting so far.

 

[justy]

Hi Ginger, nice to 'meet' you. Your list of supplements looks like a very good basic package for anyone with M.E.
If you had the mito test done with Dr M then I am sure she gave you a lengthy list of what supps to take and when - 4years after my test and I still haven't been able to try/tolerate them all.

I found B12 injections VERY good for about a year, I self injected daily with methyl B12 - B12 AND NEEDLES BOUGHT FROM dR mYHILL AND NURSE IN LOCAL gp SHOWED ME HOW TO INJECT - ITS REALLY EASY AND NOT PAINFUL. (so soryy caps lock not shouting)

I wonder how long you have been taking these supps for? some of my issues (restless leg) took about 6 months on mag to resolve, supplements are for the long haul. Many I take do nothing at all.

It would be interesting to see your mito results - how is your antioxidant status?

I found adding vit c with selenium daily helped a bit too. I also no longer use ascorbic acid due to severe gastritis, and now use another powder that I cant remember the name of (sorry!)

Night sweats - I had them from around 36 (now 44) at first GP said too young to be menopausal, now they just say 'oh your probably menopausal'

I was helped by a herbalist who gave me Agnus castus in drops, it also helped my severe PMT - night sweats cleared up completely. Of course it may not be hormonal and could reflect an ongoing chronic infection etc instead.

Thyroid - you say it was checked and GP said 'normal' I no longer accept this and get copies of ALL my tests and read them myself - often they have actually been out of range or suspiciously low (when coupled with symptoms this should be a warning flag for a GP)

A few years back I asked for all the tests I had had over the past 3 years and they did supply them - I always as k for the lab ranges as well, so you can see where you fall. It was in this way that I picked up my severe, persistently low ferritin, which was causing some symptoms.

Good luck with it all!
Justy x

 

[Ginger]

Hello Justy,

Nice to see another Dr Myhill patient Yes, she gives a HUGE list of supplements! Which is why I'm fairly confused about which ones I need to take etc, and also combined with what I read on here I just end up as a big sitting question mark!

I'm glad that the B12 injections helped you! Did you find them better than sublingual? How did you convince your GP to show you how to inject? When I asked mine to show me he said "no because I'm not prescribing it for you and if you get it from this woman you will be injecting too often!"

I've been taking the supplements for over a year now, except B12, magnesium spray and niacin which I've only been on for a few weeks.

Which one is the antioxidant status? If its SODase, mine was normal at 42% - normal reference was over 40%.

Is it possible to be menopausal at my age? I haven't had any babies yet and certainly want to when I'm healthy enough! I will look into Agnus Castus drops if they helped you.

How did you approach your surgery about obtaining your historical results from your surgery? Were they helpful in letting you have them or did they put up barriers? I know legally we are allowed to see what has been written about us, just not sure how

Thanks for replying

 

[Soundthealarm21]

@Ginger

What is your fat intake like?
Your body needs a lot of fat daily in a good balance between Omega 6 and 3 fatty acids. The brain is 60% fat and all cell membranes are made up of fat.

How long have you tried a low carb diet?
When I first started the paleo diet I had a detox of some sort that after about 3-4 days went away completely. After I started drastically increasing my fat intake my desire for carbs went way down.

Have you ever had a gastrointestinal tract test? Such as a stool test?
Prolonged antibiotic use and high sugar/carb/preservative diets can kill off the good bacteria in your gut lining. High sugar feeds the bad bacteria and can lead to yeast overgrowth.

Have you ever taken probiotics?
It's a good idea to replace the good bacteria which has been shown to be low in people with ME. http://www.ncbi.nlm.nih.gov/pubmed/23791918

I'm not sure what kind of B12 is in the multi after looking at Tesco's page. I'm not sure what is most prevalent in the UK, but it does contain Folic acid. If you're trying to stick to a methyl based treatment protocol then you're going to want to avoid folic acid and switch to L-Methylfolate.

Mold Exposure
http://www.survivingmold.com/store1/online-screening-test This is a $15 dollar test that I used to find out if additional testing was needed. I failed the test and it turns out that I do have some mold exposure.

 

[Ginger]

Hi Soundthealarm,

Fat intake: Need to up my intake of good fats. Trying to come up with some low-effort recipes for some good fats, may introduce fish into my diet.

Low carb: Haven't got past about 5 days before...just felt so so weak. Maybe I wasn't eating enough fat. The paleo diet does make a lot of sense to me in theory.

Stool test no, I have never had one. Think I'll start taking probiotics anyway.

From what I'm understanding from here and reading other posts, I need to add:
Metafolin
AdB12 and B12 shots
Agnus Castus drops
A non folic-acid multivit to replace the Tesco one.
Probiotics

 

[maryb]

@Ginger
the biggest change I made which helped decrease the night sweats dramatically was to lower my carb intake. (On Dr M's advice)
I cut carbs out totally to start with and the night sweats stopped - I do have some carbs now - not too many though and a lot less than I did before.
Its a terrible symptom and I was so relieved when they stopped.

 

[SOC]

Is it possible to be menopausal at my age? I haven't had any babies yet and certainly want to when I'm healthy enough!

Hormonal abnormalities can happen at any age. I have a friend who went through "menopause" at 19yo. Or so her gyno called it. Her hormones changed in the same way as those of a menopausal woman causing all the same symptoms. I don't know the cause of that -- I didn't ask. With treatment, she was able to have several children.

I'm not suggesting that you might be menopausal, strictly speaking -- just that hormonal issues can cause night sweats at any age. But so can other things.