Starting fresh - probiotics : Hello people... - Cure Parkinson's

Cure Parkinson's

25,520 members26,841 posts

Starting fresh - probiotics

Karmaone profile image
17 Replies

Hello people. I recently became disillusioned with the supplements I was taking. It came about because I restarted berberine after a three month break. My normal brand, renew by science, have doubled their strength, and within a day or two I was finding I was ridiculously tired, like I'd run a marathon.

I realised I had run out of berberine, last time, around the time I started B1 and that it could be the stopping berberine rather than the B1 that made me feel more alert.

So I have stopped everything. I'm trying to slow things down. I don't feel much different to be honest, about two weeks in. It's hard because I'm experiencing a particularly difficult and busy period in my life.

I took the berberine because of the gut health benefits. I'm considering now if I should try probiotics, or start a fresh on the B1...

Probiotics seem to range so much in price and quality. Can anyone recommend a good brand that doesn't require selling a kidney for? I'm in the UK.

Thank you in advance.

Written by
Karmaone profile image
Karmaone
To view profiles and participate in discussions please or .
Read more about...
17 Replies
park_bear profile image
park_bear

Berberine results not all positive:

healthunlocked.com/cure-par...

Bolt_Upright profile image
Bolt_Upright in reply to park_bear

This is awkward :) That link is to an old post of mine questioning Berberine. Since then I recovered my faith in BBR and have been taking 1200 mg a day for over 18 months.

Maybe I should delete my old posts as I add new ones on the same topic?

park_bear profile image
park_bear in reply to Bolt_Upright

Adding an edit to the old post noting your change of view on the matter is sufficient. I would prefer you leave that post up because there are some studies cited that are of relevance.

Boscoejean profile image
Boscoejean

a possibility -

practicalneurology.com/news...

park_bear profile image
park_bear

If the B1 was helping I would restart that

CRMACK1948 profile image
CRMACK1948

My husband has started taking Sugar Shift,a specific probiotic designed for Parkinson’s.We live in the UK, but order this from America.The postage is horrendous,almost the same price as one bottle of capsules,but I order two,and husband takes one a day,last thing before bedtime.Various obvious changes have happened,no more constipation,which has been an ongoing problem, Speech has improved,and that began to be obvious approximately 4 weeks after he began taking them..I completely agree that supplements are a two edged sword,particularly if you are not in a position to get blood tests done to ascertain where deficiencies exist.Im certain I have him on too many medications/ supplements but am too frightened to stop any incase they are helping in a way I don’t realise.and his GP and neurologist have no time for anything that isn’t NHS approved.After taking saw palmetto,which bought his PSA level down from 28 to 2.00,we were told it was a placebo effect………

Rafafan profile image
Rafafan in reply to CRMACK1948

I'm in the UK too, same with my husband regarding neuroligist and Parkinsons nurses. My husband used cytoplans probitic powder mixed in water and it helped constipation but he didnt continue it and then it got worse and he ended up in hospital as all his symptoms got worse, they concluded after 9 days and an enema it was due to the constipation and he now has to have laxido laxatives as well as his madapar drug. I checked with laxido and they said its ok to take probiotics as well as long as they're at least 1 hour apart so I think he should get back to them and may need less laxative. (they said to be flexible with it between 2 morning and night to 1 a day or every other day. He's still experimanting to get it right (either going too much or not at all)

MarionP profile image
MarionP in reply to CRMACK1948

That kind of move is definitely not a placebo effect. Or, on the other hand, if it is a placebo effect, works pretty good you know, maybe it is worth staying with it, the main word to hear being "effect."

Remind me of the story about the psychiatrist who is treating this guy I thought he was a chicken. One of his colleagues suggested that he tried to help talk him out of it, but the psychiatrist said "I would, but I need the eggs."

John_morris71 profile image
John_morris71 in reply to CRMACK1948

Some Info

medrxiv.org/content/10.1101...

lingfield222 profile image
lingfield222

Hi, Symprove is a liquid probiotic, its a bit pricey, but you take it for a specific period of time to help 'seed' your gut with healthy bacteria. I dont know about your diet but a Mediterranean diet is recognised as being one of the best for supporting healthy gut bacteria.

My husband with PD had poor gut bacteria at the outset (7years into diagnosis) but now its great! I don't know if having good gut bacteria has slowed his PD, but he's stopped all food supplements (still takes vit D, low dose lithium and Glutathione and is on Sinemet), and exercises a lot. PD related constipation is still a daily challenge for which he takes laxatives.

The main thing is he (and I) are keen he takes a few supplements as possible, whilst staying well. Hope you can find a way through, it can be quite a maze.

clarksdocs profile image
clarksdocs

Yes PS128

Bittermelons profile image
Bittermelons

From my experience PS128 might better be called BS128. A couple of years ago I tried it for 3 months. I don't know why Iquit but recently discovered an unopened shipment of PS128 in the back of the fridge. Can't hurt, I said to myself. Hah. It alll came back to me (bloating, near constant diarrhea, yet frequent constipation). but no relief from other PD symptoms. I agree with the professionals that there is very likely a gut/brain connection but for me PS128 is not helpful, What have others found that works?

shaken-not-stirred profile image
shaken-not-stirred in reply to Bittermelons

We have found Magnesium helps a lot - Citrate or broad spectrum Magnesium - trial a dosage to find what helps you. My husband has had PD for 13 years and has a rather large hernia so we have to keep him from getting into trouble - waiting for surgery.

LAJ12345 profile image
LAJ12345

have you done all the other healthy lifestyle modifications?

Exercise, whole food diet. Trialed eliminating eg gluten, dairy. Less meat, no processed food, sugar or seed oils like canola. Using olive oil instead.

They would be the first thing I would do now.

The supplement that made the most difference to my husband is Hardys daily essential nutrients with added vitamers. Some on here don’t like it as it has b6 in it. My husband found it helps a lot.

gomelgo profile image
gomelgo

Have you tried senna tea? I take it when I just can't take the constipation anymore, and usually the next day I get a clean out. Don't want to make it a habit thought. I sent in a microbiome sample to Florè. Waiting for them to receive and process it now .... I tried sugar shift a few times. The first time about a year ago, it seemed to help some. The last time I tried it was last month, and it was useless.

MarionP profile image
MarionP in reply to gomelgo

You know I did try Santa once and it was pretty good did what you wanted it to do.

MarionP profile image
MarionP in reply to MarionP

Sorry about the bad spelling I've had problems the last week or two with my phone's interface to the website.

You may also like...

probiotics?

familiar with or has used this probiotic? so much is written about the gut and its relationship...

Biotiquest Probiotics

Has anyone tried Biotiquest Probiotics? If so what results did you have? Martha Carlin is the...

P128 Probiotic

Parkinson's for 17 years so we are trying lots of new things because he is maxed out on the Rytary...

Prebiotic Probiotic Antibiotic... What's the deal?

are commonly found in most multi-strain probiotic. I am trying to figure out how Butyrate fits...

PS128 Probiotic

Hi Currently have my HWP on Symprove probiotic as they have been trialling that in the UK at Kings...