PSP incurable but not the symptoms. RHP in California has a miracle vitamin supplement that has normalised my life
PSP: PSP incurable but not the symptoms. RHP... - PSP Association
PSP
46 Replies
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Hi Tim
What vitamin supplement is that ??
RHP. It does help, is inexpensive and clinically tested. Available from Amazon. I am very sorry not to have replied earlier but am in my final stages so not often conscious. My dearest wishes, Tim Young
Yes please tell us
Is it the nerve support formula, Tim?
in reply to Andchr
Yes it is. It works for me but I can't comment otherwise. But I have made no other changes to my lifestyle
Yes - it is the vitamin supplement. I have had, oddly because I am a very nice chap, some very nasty emails. Don't know why - just trying to help others with this shockingly awful disease. I didn't want it, I don't like being ferried around in a wheelchair and unable to eat so did something about it. Of course I will die but I just feel so much better
Tim you did not give that name of the supplement , it could not of been on this site, that you had nasty comments, everyone is lovely on here, we just want the best for our partners. Yvonne
in reply to Yvonneandgeorge
This is a horrid disease that has destroyed my life. I am told I only have a few months but this vitamin supplement (and I have already been berated by the doctors who were supposed to treat me two years ago for suggesting that they may have been entirely wrong about everything) does seem to have alleviated the symptoms. I have no association with this company whatsoever - it was recommended to me by a friend. It is called RHP and is in California. I think it somewhat expensive but will continue to take it until I die. My love, Tim
CharlotteH in reply to
I don't understand how they can measure how much time you may have left. That is horrible and ignorant. It depends on which complications that appears and when.
Just great if you have found something that has helped you.
Husband has tried Rick Simpson Oil and found that it has given some relief and has definitely given him a better feeling, better sleep, better bladdercontrol.
Keep fighting the ghastly disease - good luck!
loustalet in reply to
I am extremely interested in your experience.
Would you accept to communicate with me?
My wife has PSP, first symptoms 7 years ago, final diagnostic as PSP 18 months ago.
I am prepared to test products as long as their side-effects are minimum. Which should be the case with the product you mention.
We just started salsalate but the side-effects are far from being negligible and my wife is getting worried to use the quantities mentioned in the clinical trial.
My e-mail address: cjvercaemer@gmail.com
Tim what is the vitamin supplement or formulation, would really like to relieve some of Margaret's symptoms. Only snag could be import into Europe/UK but that is our problem. Best wishes Tim
It is something from a Californian firm called RHP. I have no idea why I am feeling so much better but have to ascribe this in no small part to RHP. PSP is dismal and I am going to die anyway but I hope without the terrible symptoms. With all best regards, Tim. I hope you are all better or better as can be
Hi, just google this and come up with a new type of Vitamin C. Is this the one that you are talking about. How has it improved your symptoms? Please, please tell us more. We all know that this evil disease is incurable. But NOBODY has ever suggested something that actually works!
What ever web site you are on, that is sending nasty emails, I would avoid. That's awful. Here, we just try and help each other get through the day!!!
Lots of love
Heady
in reply to Heady
Dear Heady
This is a rare and disastrous disease. I spent the best part of a decade misdiagnosed.II was put on anti-neuropathy drugs that did nothing apart from awful side effects. I have nothing to do with this company (RHP in California) and have never done anything like this. However, before I die aged 50 in a few months, I do want to do my best for other victims of this tragic illness - both my parents died of cancer and that seems a glorious way to go compared with PSP. Nonetheless, we all have to hang on. A friend, a GP, recommended this supplement to me. I have no medical training but do know that incurable is incurable and won't go away but this supplement does seem to work although it is terribly expensive (do you care? At this point I don't). Walking and eating again are both rather nice experiences in my last days.
Love,
Tim
NannaB in reply to
Hi Tim, I'm really interested in how this drug/supplement has improved your symptoms. Why do you still feel you will die in a few months if you are eating again and feel so much better. Hopefully you will last a lot longer than that. You say the name of the company, can you please tell me what it says on the packet/bottle. What are the ingredients? I'd want to make sure my husband wasn't allergic or has adverse affects to anything in the medication before I give it to him. Folk shouldn't be nasty to anyone but there are so many fake drugs out there, many that do harm but cost a fortune making unscupulous manufacturers extremely wealthy. I would always want to know as much as I can about them and discuss them with the doctor before giving them to my husband.If you give me the full name and what it says on the packet I'd be interested in investigating further.
Nanna B
in reply to NannaB
This isn't phoney and I am terribly sorry for your husband. Unfortunately, although I am superficially better, the disease is fatal. This is just a clever vitamin supplement; it is called RHP and comes from California - a long way from my tiny 18th century cottage in Gloucestershire. It contains all the usual stuff but in quite a clever way so that it actually is absorbed. Vitamin B1 (obviously), D3, B2, B6, folic acid and B12 - nothing mysterious. I have, within hours of posting, had threatening emais from doctors - crazy! I'm going to die anyway so what do I care? All I want to do is help others.
Love,
Tim
Christine47 in reply to
My husband (dx 2013 and symptoms since 2009) takes all the same ingredients as in RHP, just not in the same proportions. Perhaps it is because he is relatively early on in the progression but he has the same benefit as you. He swallows regular food, walks with assistance, still works, does not have tremors, etc. etc. I am so glad you are getting relief from symptoms. It is my understanding that methyl B12 absorbs better. He takes it in a sublingual form. D3 --4000 i.u. and the rest in a good multivitamin. His challenges are his vision (eye exercises help) and ataxia. He has used a Rick Simpson-type oil, but as good as it was for pain, he felt his balance was worse so he does not use it during the day. Everything is better when he gets a good night's rest.
in reply to Christine47
Sleep is the best medicine. I must admit that the RHP supplement does seem to have reduced my pain but I am not a medic and have no authority. I am afraid that several Americans have taken against me for merely trying to proffer some advice - well-meant in every way - and I can't bear it so am blocking the website. I trust that your husband's condition improves.
Christine, I would like to know about the eye exercises tat help your husband. Thanks, Maureen
Sounds great that you have found vitamins that help. I will look into that. Which are the eye exercise you mention?
My hubby take RSO before sleeping - helps sleep and bladder control as well as in the morning to take care of the stiffness and pain. His balance is already so bad that the RSO doesn't make any difference he says.
Christine,
I am inclined to try this "Nerve Support Formula" from RHP Inc. Contains mainly 2 components: the methylcobalamine version of Vitamin B12 and the Benfotiamine version of Vitamin B1.
I found out that the methylcobalamine is capable of crossing the BBB (Blood Brain Barrier) contrary to the common forms of B12 offered on the market. This is very interesting. In fact it could explain why this product is effective. By a totally unknown mechanism though.
The other component does not cross the BBB. So is less interesting.
So I look at a product that would contain only the first component the methylcobalamine and I found it in the UK:
regenerativenutrition.com/v...
The pros: Does get to the brain. No negative side-effects. Easily available in Europe. Should work if the Nerve Support Formula from RHP Inc works!
The cons: none really. downside very limited.
Has anyone any experience with this product?
RHP Health Products extra strength nerve support formula. Vitamins D3, B1, B2, B6, folic acid, B12. Love and best wishes. Available from Amazon
loustalet in reply to
Are you the same person posting as timinsuranceman?
in reply to Heady
I can stand up.
I can drink without a straw.
I no longer have tremors.
I do not vomit or have diarrhoea all day.
I now sleep occasionally.
I can just about swallow things (even if finely chopped up).
My brother no longer has to drive three hours to make sure I'm not dead yet.
I am an extreme skeptic but I am certain RHP extra strength nerve support formula (and I must stress that I have absolutely no association with this company) does seem to have taken the edge off the awful symptoms after a year lying in bed feeling very sorry for myself.
God bless you,
Tim
CharlotteH in reply to
Tim, I am so happy for you!
I have looked up RHP it is available on Amazon. May I ask which products from RHP that helped you? I'll go on and order right away, when I know what to order 
amazon.com/RHP-Vitamin-Nutr...
Thanks in advance
It does help. I am not a GP and have no association with this company. Anything is better than this living hell. Both my parents died of cancer and I envy them. Anything that helps is good. When I lived in Hong Kong, I wasgiven B1 intravenously and thatreallly helped. RHP extra strength nerve formula I take and it does seem to act positively - probably easily absorbable D and B vitamins, no snake oil. My best wishes
pspa-helplinePartnerPSPA
Tim, thank you for sharing with the forum that you have found something that has made you feel better. The PSP Association is not aware of the vitamin supplement from RHP and these supplements are often referred to as alternative treatments, also known as unproven treatments. They may appear to offer some hope and an opportunity to take a proactive approach to tackling the condition. The people or organisations offering these treatments suggest that they will work better than conventional treatment, claiming that they can help with symptoms and sometimes slow disease progression, thus prolonging survival.
It is important to point out that these remarkable claims are often not supported by any reliable scientific evidence and therefore have not been through any clinical trials which establish both the safety and effectiveness of a new treatment with a series of tests in humans.
Everyone’s experience with PSP is different and we would suggest that you always discuss any additional supplements you intend to take with your neurologist and seek their advice.
in reply to pspa-helpline
I have. I own three PhDs and am not stupid. I was put on regular anti-neuropathy drugs for two years with nothing other than DREADFUL side effects. I am sure you hate these shysters with no authority treading on your very valuable turf. But since taking RHP's supplement, I feel better; I am almost normal (even though I will die in months). Your lot did nothing for me.
in reply to pspa-helpline
They help the symptoms; PSP is incurable and I don't want a cure, just live. It works way better than the poison you guys administer. And astonishingly, I can actually type again with my fingers and not on the bog. Explain that away you tossers.
It's good to know you read posts on this site. Thanks for your comments which I agree with.
Nanna B
psp helpline hear hear peter jones queensland Australia
Thank you, administrator, for chiming in. I am also glad to know you are monitoring this site. There have been a couple of posts in the past here that linked to something distinctly shady claiming to cure the disease. Naturally folks are desperate and are willing to believe, so are vulnerable. I am not against alternative therapies in general, have tried some with good effect, in fact, for non-psp ailments, and don't have a mindless trust of the medical establishment, but I do think folks need to be wary. If there were a cure, it would be known.
I appreciate your measured response.
Easterncedar
I too am pleased the administrator brought a measure of calm to the post. I don't think the language used in response does anything to advance timinsuraneman case. With three doctorates one would have hoped for better than "your lot", "you tossers" and "bog". However if he has found something to improve his life, that is great, and hopefully it will eventually improve his humour.
Thinking back, my wife tried some awful concoctions researched by our middle daughter, one in particular smelt similar to stuff we fed to the chickens shortly after the war (39 to 45 I hasten to add). Nothing we tried showed any significant improvement in Margarets wellbeing but we had a few laughs trying to imagine what she'd turn up with next. All credit to Margaret she persevered no matter how foul tasting for fear of discouraging our daughter. As if having PSP wasn't enough!!
Kind regards,
Jerry
in reply to easterncedar
There is no cure. What I am talking about are symptoms. If you think I am stupid or a liar, contact a lawyer. You are charmless and now blocked
abirke in reply to
Please block me too ! If your supplement is helping you it certainly tangling up your decency....No need to be rude, cranky hostile , most of our carers have enough of that!
AVB
i agree iwht nanna b and eastern cedar hav e said., administrator]i
i hav e psp diagnosed nearly 5 yrs ago now and am still here - i think that people on the site are desperate for some treatment that works and will try anything to see if it helps l
;lol JIll
It does help. I am not a GP and have no association with this company. Anything is better than this living hell. Both my parents died of cancer and I envy them. Anything that helps is good. When I lived in Hong Kong, I was given B1 intravenously and that really helped. RHP extra strength nerve formula I take and it does seem to act positively - probably easily absorbable D and B vitamins, no snake oil. My best wishes but PSP is a recognisable disease and doesn't vary much. You probably don't have it so what do you know?
Tim you seem very bitter, with what has happened in your life, no one wants to have this horrible illness, but unfortunately some unlucky people have, and all we can do is take one day at a time. Tim could you please take a photo of the box/bottle and show us what you are talking about? It could help others? Yvonne
Hi Eastercedar I was a bit concerned also about the post, not sure what was going on! Yvonne x
Hi Easterncedar I was also concerned about the post as well! Yvonne x
Snake oil........
Pls do embellish on this RHP supplement. Thanks.
Can anyone speak to this supplement? Anybody going to give it a try. Thanks!
Gosh. I suggested RHP on this site ages ago because I found it did help a little with the motor symptoms and was shot down for it. You shouldn't advertise on this sort of site. A good B complex supplement does just the same thing, I've found - and eating well if you can swallow
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