Has anyone heard from John Pepper recently on here?. Emails to him are bouncing back.
John Pepper: Has anyone heard from John... - Cure Parkinson's
John Pepper
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Dap1948
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I think his email address has changed. You can go to his website and write from there.
By the way Dap, could I ask you, do you know of any pd person taking Azilect/Rasagiline with kinson and on HDT doing alright?
i take azilect and B1
May I ask how much of it?
And any reaction?
Thanks
i started azilect in 2016 n B1 in 2018. No reactions.
I also take madopar CR, mannitol, turmetic and CoQ10
I’ve taken rasagiline at 1mg for 12 years and HDT therapy for 5 years. No reaction .
Do you also take other Parkinson meds?
yes I currently take 250mg of madopar daily
And do you know if it's alright to also take Mucuna while taking Azilect, Rasagiline, b1 and levadopa? Thanks
B1 is fine with everything and I know of people who take all four you’ve listed.
I am thinking I probably need to increase meds, I am on 300mg madopar, I am wondering if it might be better to add rasagiline rather than increasing levodopa levels? I would appreciate any comments from anyone who in on this combination.
I see you are Daphne, and I imagine you are happy and doing well.
Many thanks
I was on rasagiline for the first four years and then added levodopa. I’m no expert in meds I’m afraid!
I just replied on another thread about this Combo. My husband didn’t want to keep upping the Madopar, his Neuro added in Rasagaline. He still had dyskinesia so he added in Amantadine which has really helped with that. Not entirely disappeared but much less frequently. My husband has now reduced the Madopar. Rasagaline to my knowledge stops dopamine in the brain from being broken down so quickly.
Hello Dap, you said "no reaction". Does this apply to HDT, rasagiline or both? thx
Hi Daphne, I am contemplating a dopamine agonist to start with (newly diagnosed). I live in Canada where we can't get Rasagiline. Do you know if Selegiline is the same as Rasagiline? I believe they are both MAO-B inhibitors.
I’m not an expert. It’s only the B1 therapy I know quite a bit about! Selegiline and rasageline are similar though.
Thanks. Im thinking of taking PS128 probiotic for PD from Bened Life as mentioned in one of the posts in HU.
I'm taking kinson, Mucuna, Azilect or Rasagiline, B1, B complex, Folate or folic acid, magnesium, vitamin D3, sometimes with fish oil and vitamin K2, used to take Ubiquinol (CoQ10) everyday but not often now, sometimes zinc but rare...
Just wondering if PS128 is one of the supplement to avoid if taking Azilect, Rasagiline? As the To Avoid list says fermented food and some other food has tyramine (which will react with it to cause high blood pressure which can be dangerous) And supplements like St John 's Wort etc.
Do you or anyone know? Thanks
I’m taking PS 128. I just started recently with the newer version so I’m not seeing anything either way. And I do take Rasagaline 1 mg. I took the original version of PS128. I didn’t have any problems. I’m not sure if it’s all benefits, but it was unfair because I was inconsistent taking it because it’s so expensive.
Thanks for sharing. Did you take it everyday? Is the one they sell now new version?
I have received a parcel yesterday but too busy to look. Today just checked, it's from BenedLife. I have just opened it now and put in the fridge. I see some water on the packaging paper, do you think it's ok? Thanks .
Do you take Rasagiline and PS128 far apart?
And both on empty stomach or with food? Thanks
I’m not sure this is the absolute best way, but I usually take Rasagaline while I’m eating breakfast. I don’t remember any special instructions for that. I tend to take the PS 128 on an empty stomach. I mean I don’t freak out about its emptiness so to speak because I don’t think they emphasize it too much. But they don’t recommend that you eat it with a meal. So I take two between meals and they do recommend that you take it around the same time each day.
I don’t know much about the probiotic beyond that. I don’t know what other conditions it can treat. You might want to contact them about that. They are very nice and always helpful. They are sometimes a little busy so it may take a little while but they will definitely help you. Or maybe you can find some thing on the website. Hope you get the information you need!
Thanks .
So you take PS128 before breakfast?
You’re welcome. It usually ends up between breakfast and lunch. I have a Synthroid in the morning to clear first. But I’m no expert. It would really be nice if they had a forum like ours but just a smaller one where they talked about how people take the supplement and what works for them. Maybe they do. But that would be kind of helpful.
can you take PS128 on empty stomach?
I don’t truly know but I haven’t gotten the impression that it’s especially hard on my stomach and I’m pretty sensitive. I haven’t taken it on a totally empty stomach though. But then again, I’ve never had to think about adding food to pad it or anything like that.
Thanks. Do you know if PS128 is suitable for someone with psychosis/schizophrenia? (Not me)
Do you or know can it be taken near other supplements eg. B1, coQ10, folic acid etc? Thanks
You might want to call them. Or you could email them. I’m not sure about any other conditions. And I don’t know about the supplement part either. They’re very helpful. I just don’t know too much about it. But your questions are valid and I think they’ll appreciate them!
how do you manage your intake of Tyramine when taking rasagiline.
until I read your question I was blissfully unaware of a problem. I googled the foods and fortunately don’t eat any anyway, so staying blissful!
So you don't eat fermented foods like sauerkraut, kimchi? And soy products like soysauce or tofu?
Could you please share what you eat please? If that's ok with you. Thanks
I’m dairy and gluten free. Otherwise I just eat what’s left!
Do you eat grains and rice?
I eat gluten free grains and rice.
Do you eat corn?
The British aren’t big on corn. I sometimes eat sweet corn. I eat a huge bowl of oats with fruit and seeds added for breakfast if that is of interest!
Do you have off period?
not really ‘off’, just turned down a bit!
And is it since you are taking b1 you have less symptoms then before B2 when turned down?
I’ve never really had very big ‘offs’, but then my medication is low, so not a huge difference between on and off.
Do you feel Azilect/Rasagiline helps slow down your PD?3
it’s impossible to tell.
Do you take B complex or other supplements like magnesium etc?
yes! It’s always advisable to support the other B vitamins when you are taking high doses of a single B vitamin. Magnesium is needed to activate thiamine in the cells and is a co-factor for the activity of various enzymes. On our Facebook page we are now recommending that people begin these two supplements a few weeks before starting the HDT therapy, so that any improvements they cause don’t confuse the trial for the right B1 dose.
facebook.com/groups/parkins...
Hi Daph, I'm doing HDT, Restore Gold añd PS128 at the same time. Could you please tell me how you would do it to get good results? Thanks
As you need to monitor the effect of HDT on symptoms to find your perfect dose, it’s not possible to do it alongside other therapies which might also affect symptoms.
Therapies like levodopa?
So if I find my perfect dose, can I still do those two to further improve the disease as I seen the testimonials people say they got better to their 3 or more years prior or able to cut theirs meds or off or regression
What if you have long day like start from early morning until night, do you still take that amount of tablets, no extra?
Today I got up at 5am. I have all the family arriving for a big family Christmas meal. I will take my meds as usual. First one at 9 am.
So from 5-9am you prepare the Christmas meal without meds ok?
I don’t normally get up that early but it worked fine, I worked fine!
How long have you had Parkinson's? I am trying to do the b1 therapy but am frustrated . I have read your book but don't know where to start. I am on many supplements. I have osteoporosis and am on calcium instead of the medication they recommend. I am working with a nutritionist/functional dr./pharmacist. He does muscle testing to see what you are deficient in. He does not have much knowledge about Parkinson's. He said I should take 500mg b1 twice a day. My symptoms are occurring about 21/2 -3 hrs after taking 1 c/l(25-100 mg). sometimes lip quivering ,sometimes arm swing, sometimes gait, sometimes increased tremors. I posed this question on the b1 website and was told it was in violation of the rules. Please advise where I can get help. thanks.
I can’t understand why you were told your question was in violation of the rules if you asked a question about B1 on my Facebook page. Huge apologies if you were not listened to.
To go through your points I’ve had PD for 13 years.
I have osteoporosis too and won’t take the medication offered. However I wouldn’t take calcium. There is thought that calcium may play a part in developing Parkinson’s. parkinsons.org.uk/news/calc....
You could start by taking 2 x 500mg B1 hcl oral tablets a day. We normally suggest starting with one 500mg a day especially if you are a lightweight. You need to monitor symptoms and stay on the dose 4-6 weeks to give it a chance to improve symptoms. As soon as you’ve found the dose that improves symptoms, stay on it. If you get worsening symptoms your dose is too high, in which case you,should stop B1 for 1-2 weeks and let the levels of B1 in your body lower. Then restart at a lower dose.. is that enough to get you started.
Btw I think muscle testing picks up what you are deficient in and this therapy is not aimed at correcting a deficiency as such. Most of us never had a deficiency.
I have been on 1 b1 500 for 4 weeks still have those periods in between. Constipation is a problem as is bloating and gas to the point that right side is affected and causes increased, intense tremors, Pressure on my right side,muscle cramps and spasms sometimes whole right side tremors .this has been waking me up between 4:30-5:30.My next dose of medication isn't due until 6 or 7.my movement specialist wants me to start taking 1 c/l every 6hrs and the night dose change to 1 cr c/l. So instead of 3 pills a day she is adding a cr. I am very nervous about adding another pill. How is cr different from it. Any thoughts? They also started me on Miralax. With so many adjustments when would you suggest increasing the 500. B1 to twice a day? How are you treating your osteoporosis? How long have you had it and how bad was your dexa scan. I also have a compression deformity at L2.I am so frustrated and scared. Thanks for your advice. You obviously know what you are doing and are very successful. Thanks for your kindness.
Vitamins D3 and K2 and magnesium are good for bones. Boron found in prunes has also had positive research.
If you’ve been on 500mg B1 for a month with no improvements in symptoms or more energy, then I should now try 2 x 500mg a day. Keep monitoring symptoms. Changes can be quite subtle.
Could you tell us what supplements are you taking beside B1 please. Thanks Daph.
b-complex and magnesium, which are part of the B1 therapy, also probiotics, D3 and K2.
Thanks. And how much of each? And which probiotics?
Gosh! I take very small doses of b-complex and magnesium (117mg) My probiotic is Optibac for women because I was getting a lot of UTIs!
Is it elemental magnesium 117mg and what brands for it and B complex? Thanks
We have a lot of information under Files on our Facebook group page “Parkinson’s B1 Therapy” about which brands and what amounts. There is far too much to write here. Do you do Facebook?. I’ve told you what I take but I’m not typical in that I’ve taken magnesium for 13 years and don’t feel I need as much now. B-complex is complicated because of the B6 issue, recommended doses of which depend whether you are on Sinemet or mucuna or neither. Then different brands are available in U.K. compared to USA, which our articles on our Facebook page addresses. I just feel that telling you what I take, which would have been the quick answer, would not necessarily be helpful because we are different.
Thanks Daphne. I have FB but rarely use it as I'm not good at it. I think I've joined B1 and other groups but couldn't get to articles etc from those groups.I agree with what you said.
Do you know anyone has to take more than one B1 sublingual per day? Thanks
no, not if they’re holding the dissolved tablet in their mouth for 30-45 minutes to allow time for the B1 to pass through the mucous membrane into the bloodstream. If someone swallows the tablet straight down as an oral tablet, then they’d probably need several tablets!
Do you find your bone density improved?
I’ve no idea. I don’t have it checked!
Hi Daphne, I took Alpha Lipoic Acid before started b1 and seemed like it helped with PD. When I started b1 orally I didn't stop it. However reading your book, I understood that not to take other supplements while taking B1 so when I started sublingual B1 I stopped ALA. Now I would like to take ALA again as well. Can I?
The point I was making was not to CHANGE anything else when you trial B1. Stopping other supplements was actually wrong because it was changing other factors which might affect trialling. You need to know that any improvement or overdose symptoms must be caused by B1 because you haven’t changed anything else.
I talked to him on the phone less than month ago and he was doing great🧿
Hi there. He is quite active on FB
How often do you feel like saying, "READ THE BOOK."?
hahaha On the Facebook group that I administer, lovely people says it for me!
Hi Daphne, Not sure if you got in touch with John. I received this from him early this year :
My new email address is john.pepper.rpd @ gmail. com (Omit spaces)
hey thanks! I emailed him from his website but also got no reply. I don’t know whether I should read something into that! I was rather amused how a post titled John Pepper could lead to so much discussion about medication. Something he is/was very anxious people should avoid!
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