My brother is no better 😔M.S and/or PA

[Marymary7]

I have been injecting my brother for months now with Methylcobalamin and he is no better in his mobility or health and very downhearted. We are Injecting at least twice a week. Very sad. After following and teaching myself as much as pos from this wonderful site I realised that the folate must be low (can't have blood tests) and perhaps that is the crux of it so I have just got him some Methylfolate high dose drops. He seems sensitive to things and cannot sleep with lots of things. He did last night though after a jab and the drops in the morning. I looked back at his old bloods online and I see, Folate in Oct'16 7.5 ng/ml (>4) isn't this tremendously low? That was about when we started the jabs I think. Maybe now he will respond. Dr. Chandy said (only on phone, no exam) he had that sub acute spinal damage thing..... dreadful neglect.

Anything else I can do? He has high dose D3, K2, magnesium spray.

Thank you.

M 😀

[clivealive Forum Support]

I'm saddened to read of your brother's problems Marymary7 and all I can suggest is that you continue in your admirable sisterly love in the hope that the Folate does the trick.

[Marymary7 in reply to clivealive]

Thank you Clive, I see that you are very kind on here to everyone as indeed all the admin and regulars are. 😀

I should say that actually my brothers appetite has improved, he has put on weight which makes mobility worse he says he has the munchies and his tinnitus is almost gone and he doesn't tell me about the strange vision things that happen sometimes, so there is some improvement I am pleased about.

I got some Sublingual Methylcobalamin for me and tried to give him some to take for the days I'm working but he wouldn't take them. I did tell him the price which at £20 for sixty won't last long probably put him off as I paid it, but he is adverse to any more pills! I eat a lot of folate so I'm ok there. Have you an opinion on these they are SuperiorSouce Methyl 1000 mcg plus b6 and folic.

Thank you everyone.

M😀

[clivealive Forum Support in reply to Marymary7]

Hi again Marymary7 perhaps your brother would be more amenable to using a methylcobamalin "B12 Boost" spray for under the tongue. It's quick, easy, economical and pleasant tasting.

[Marymary7 in reply to clivealive]

Thanks Clive,

I did get him on one of those before we started all this and that skewed his bloods annoyingly. Do you think the Better-you one is any good.

Thanks.

Mary

[blondie2505 in reply to Marymary7]

think I used that one didn't do anything for me that I noticed at least.

[clivealive Forum Support in reply to Marymary7]

That's the one I use and NO I'm not on commission

[Gambit62 Administrator in reply to Marymary7]

I'd monitor the amount of B6 - sustained use over 100mg a day has been linked to neurological problems - which generally reverse when supplementation stops but there have been a few cases where it didn't.

Recommended upper limit for B12 varies depending on where you are - US is 100mg/day, EU and UK much less - think UK might be 12.5mg

[Marymary7 in reply to Gambit62]

He is not on B6 at the moment,thanks though.

[Gambit62 Administrator in reply to Marymary7]

wasn't clear from your first response to Clivealive if you were saying that the sublingual contained B6 and folic acid or that you were thinking of adding B6 and folic acid into the mix.

Good to know that B6 isn't in the mix at the moment

[Marymary7 in reply to Gambit62]

Hi sorry, I was debating if I should offer my brother some sublingual Methyl to use the days I work which I have just got for me to try but I didn't realise that the added B6 and folic acid in it are a bad thing. Thanks to mcenerny I have just watched an hour film by dr Ben Lynch on folic acid which is a really bad thing and had definitely effected my brother whose dr gave it to him for years instead of diagnosing PA all very familiar to the folk on this forum sadly.

Thanks for the advice.

M😀

[mcenerny in reply to Marymary7]

Be very wary of any supplement that uses folic acid as a folate source. It is a very cheap synthetic form that does not contain all the benefits of L-methylfolate. Do not trust companies that use folic acid as an ingredient as it has been shown to actually interfere with ability to process the real stuff by binding up the receptors. It has even been shown to contribute to colon cancer as I can attest to from experience. Companies that use it probably also use other cheaper and less, or non-effective sources of supplements. Dr. Ben Lynch has made a number of videos and cites the PubMed studies that support his views on the harm of Folic acid supplements. Google for Dr. Lynch and Folic acid.

There are also some genetic issues with some individuals ability to metabolize B12. While Methycabalamine is the most bio-available form, not all can process it and need other types if they have certain genetic defects. Short of getting the gentic testing done, you can only proceed as you are considering, trial and error with adeno and Hydroxy (www dot globalhealingcenter dot com/natural-health/four-types-vitamin-b12/ )

[Marymary7 in reply to mcenerny]

mcenerny thanks for that, interesting. I had already read how folic acid can give a false reading, and when they checked his b12 years ago that would have given a false idea of what was going on and John says he took folic acid for years! Which is a shame. You could be onto something there though and we will keep clear. I will have a read of your suggestions next, I love reading and I feel determined to try my best to help my brother be the best he can now, which at the moment is not good, he can only walk a few paces dragging his bad leg and trying to balance holding onto the walls with his only usable arm. I'm just trying the jabs of Methylcobalamin, Methylfolate drops, D3, K2 and magnesium spray. Will try the Hydroxy next time I think. And will check everything he takes.

Sorry to hear of your very serious health problem, I hope nothing else will happen to you or my brother.

Thanks for the info.

M😀

[Sleepybunny]

Do you know his ferritin (stored form of iron) levels?

[Marymary7]

I do but don't understand it. Ferritin 102 (25-350) the same in 2014 and 2016 nearly. But in '14 his b12 was low at 102 (180-1000)

Thanks,

M😀

[Gambit62 Administrator in reply to Marymary7]

likely that the results were using different units which explains the different ranges.

[blondie2505]

What about every other day protocol til no further improvement on hydro. As we

[blondie2505]

As methyl your meant to do daily as it doesn't last in the body .. hydro may be a better form. Sorry my phone crashed.

[Marymary7 in reply to blondie2505]

I think I'm getting him some Hydroxy next time to try. Dr Chandy said Methyl because of severe neurological damage. That's why we're doing that one.

[Marymary7]

Thanks Blondie. My brother can't SI as his one side is withered and useless and I work half the week so doing it when I can. With the sleep problems it has to be in the morning but he doesn't get going early with all his problems so may follow Clive's advice again with the spray.

Thanks.

[blondie2505 in reply to Marymary7]

You can get 5000mg sub tabs they may be better take two to for times a day under tongue by solgar

[blondie2505 in reply to blondie2505]

Think my problem was the spray wasn't a high enough strength take two to four a day or whatever works for him

[JudithML]

Look at dietary changes, in particular giving up gluten and cows milk and its products, which cause inflammation in the body. The theories are those of Prof Terry Wahls of University of Iowa Medical School for her own MS. The best summary is in a 15 minute video ,

Www.youtube.com/watch?v=KLjgBLwH3Wc

I have had PA for over 20 years, diagnosed with Parkinson's six years, on the Wahls Paleo Diet (see video) for five years.

I get tired after six weeks and cope with sublingual B12 (methyl cobalamin) but the fog and fatigue is no more! I do Pilates, walk the dog 2-3 miles a day, and am learning Hebrew to challenge my brain. I feel well most of the time.

The U.K. Doctors can't explain why I'm so well. Prof Wahls is about to get important research papers, mainly on MS, published.

I'm a fit and active 65 year old.

[Marymary7 in reply to JudithML]

@ JudithML Thank you. I have tried. My bro has seen that film and said he couldn't possibly eat all that veg. His idea of gluten free didn't count the pastry on his pork pie.....can't make that work. He can only walk a few lopsided steps sadly.

If I was living with him controlling his diet I may have a chance but I couldn't do that. He doesn't have a cooker he wouldn't be safe. Micro meals and salads, sarnies, chocolate bars and some fruit are his staples.

Thanks for trying tho.

M 😀

[Hidden in reply to Marymary7]

Well done, you are being heroic. Much love.

[Gb57]

Sorry can't help but wish your brother some better health x