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.
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Karmaone
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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?
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.
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………
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)
I feel that I have to tell everyone who will listen that laxido contains Macrogol 3350 which is marketed under various trade names, including MiraLax, ClearLax, Golytely, and others. It is also known as polyethylene glycol (PEG) 3350, PEG 4000, and PEG 6000. It is really bad for you, my husband lost so much weight and threw up a lot on this horrible stuff. His appetite was so very bad. There is a Facebook group that has maybe 100 K members all sharing bad results from this stuff. Neurological problems, seizures and so on.
That's why I'm trying to get him gradually off them, I didnt know all that but I know laxatives are bad to take especially long term. Actually my husband was alsosick one day and I thought it could have been the laxative. He's down to one every other day now and is still going to the toilet daily so we are managing to get him off them slowly. THanks for the info, it confirms I'm doing the right thing to wean him off them
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."
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.
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?
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.
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.
Why would you not like b6 ? I thought it really helps my husband with some of his PD challenges. That greasy dandruff that he had for many years resolved when I started giving him Jigsaw B complex which has very high B6 in it. There is a John Gray who has some video on youtube who states that the carbidopa in the Sinemet takes up the b6 receptor sites and that a lot of what we think of as PD symptoms are vitamin b6 deficiencies.
Yes, I agree. There are some studies that show high levels can cause nerve damage. But so can low levels and carbidopa destroys b6 so you’re going to be deficient if you take that!
I was just preempting the usual people who are scared of b6.
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.
Have you tried Cascara Sagrada? It is not habit forming, according to Dr. John Christopher who was a famous herbalist. It really helps keep my husband along with Lactulose.
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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.
PS128 Probiotic 
Great video on healing a \"leaky gut\" and I found this probiotic to be the best deal on Amazon!
Probiotics PS128
On B1, Toes Have Started Curling, and I'm Stumped
