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Posted

Scientists Test Peptide Therapy for Parkinson's Disease in Monkeys

Once patients are diagnosed with Parkinson's disease, there is no drug

available to halt its progression. Scientists have shown that a

peptide is capable of halting the progression of Parkinson's disease

in monkeys.

CHICAGO, IL, June 15, 2012 /24-7PressRelease/ -- Peptide therapy may

prevent Parkinson's disease from progressing further. Scientists at

the Rush University Medical Center (Chicago) have used a peptide in

monkeys with Parkinson's disease and found that the peptide

successfully reverses locomotor, biochemical, cellular, and anatomical

changes caused by the disease. Results of the study were published in

the Journal of Neuroimmune Pharmacology, June 2012.

"The monkey model of PD is considered as the best available model for

human PD as humans and monkeys apparently share about 93% of their

genes" said Kalipada Pahan, PhD, Professor of Neurological sciences,

Biochemistry and Pharmacology at the Rush University Medical Center.

"Understanding how the disease works is important to developing

effective drugs that protect the brain and stop the progression of

PD," Dr. Pahan said. The authors have shown that one protein called

NF-kB is increased in the midbrain of parkinsonian monkeys.

In a preclinical setting, rhesus monkeys with established PD symptoms

received the peptide via intramuscular injection. "Interestingly, this

peptide enters into the brain and blocks NF-kB and other associated

toxic molecules, protects neurons, normalizes neurotransmitter, and

improves motor functions in monkeys with PD," Dr. Pahan said.

Available PD treatment (e.g. levodopa) is often associated with a

number of side effects and unsatisfactory outcomes. "We did not

observe any drug related side effects (e.g. hair loss, untoward

infection, hyperkinesias, psychological disturbance, vomiting,

diarrhea etc) after peptide treatment," Dr. Pahan said.

This research was supported by grants from Michael J. Fox Foundation

for Parkinson's Research and National Institutes of Health. "Now we

need to translate this finding to the clinic and test this peptide in

patients with PD. If these results can be replicated in PD patients,

it would be a remarkable advance in the treatment of this devastating

movement disease," Dr. Pahan said.

Parkinson's is a slowly progressive disease that affects a small area

within the mid-brain known as the substantia nigra. Gradual

degeneration of these cells causes a reduction in a vital chemical

neurotransmitter, dopamine. The decrease in dopamine is responsible

for the development of PD.

Parkinson's disease affects about 1.2 million patients in the United

States and Canada. Although 15 percent of patients are diagnosed

before age 50, it is generally considered a disease that targets older

adults, affecting one of every 100 persons over the age of 60.

Website: http://www.pahanlab.com

Read more: http://www.digitaljournal.com/pr/755307#ixzz1z8kSYhLI

Posted

Peptides are 'short proteins' - amino chains less than 50 aminos. They are used extensively in communicating within the cell. Including 'reading' the DNA.

A controversial cancer doctor, Dr Stanislow Burzynski, has been using peptide theropy to reverse gene silencing for cancer treatment. He has 25-30% success with treating terminal, untreatable cancers (<1% survival). He does genetic testing up front to see the genes involved and decides whether he can treat a person. This is because he has only identified about 150 peptides out of several thousand.

The point is that (as with the above article) peptides can be used to turn genes back on. Since it is known that LSD cause gene silencing ... and this might be involved with some sufferes of HPPD ... then peptide treatment could be developed to reverse this problem.

Posted

Where do i sign up?

Well ... if you have brain cancer or any 'untreatable' cancer and are about to die, then you can contact that doctor. Perhaps you could email for a reference to doctors working with peptides for other reasons ... when he moved the United States (1970?), he shared lab space with another doctor who researched brain peptides (thus most of the peptides Dr B has identified pertain to brain function).

As for HPPD gene therapy, as far as I know, no such treatment option exists.

It would seem that there are very few doctors/researchers involved in our plight. What are the statistics? HPPD about 1 out of 50,000 verses cancer 1 out of 3. The money is going to go to the major diseases/disorders first. Really, funding will come to HPPD only if the government has to pay for NOT funding - such as people on disability, which I understand is rare ... rare for a very rare disorder.

From a money standpoint, we aren't worth a dime to investors or pharmaceutical companies. It comes down to humanitarian or different reasons for research to go forward. Perhaps if we resort to violent protesting so they have to pay our prison keep, then money will be allocated. This isn't an appealing option. And it would just blacken our reputations.

So ... just live sane, try things, and be thankful for what we DO have. As for the Parkinson peptide article, it would seem the first thing to do is see if dopamine helps a person - reports show there are two groups (responders and non-responders) ... which are we?

Posted

?!

We need Dr. Abraham to call him up and form some type of collaboration and get this neuropeptide designated for HPPD under orphan drug status. Plus I don't buy into the idea that HPPD is so rare. There are degrees. We're just the ones that are worse off plus how many kill themselves as they can't hack it?! There hasn't been a way to quantify the number of people who acquire this fucked up condition but if there is a way out, isn't it worth fighting for?!

Posted

how many kill themselves as they can't hack it?!

Perhaps there are a lot. Another temptation to resist (violet protest is more appealing than the 'final goodbye').

I don't buy into the idea that HPPD is so rare. There are degrees

Agree with you on this one ... bet many people have it very mildly. And look at how many posters suffer HPPD but say they have never told anyone!

We need Dr. Abraham to call him up and form some type of collaboration and get this neuropeptide designated for HPPD under orphan drug status.

Well, there are many neuropeptides ... it would be wonderful to have access to them. Still, does Dr A have respect/regard for Dr B (who is MUCH maligned)?

On a positive note, it is good that you posted this topic. In rereading my earlier post, it doesn't come across in a joyful way. What I hope to encourage is to do what we can NOW while the 'eggheads' workout more options.

Posted

I agree that hppd isn't really rare imo, i visit a swedis forum on a daily basis. It has about 300 000 users and almost everyone there who has tried hallucinogenes report minor hppd symtoms. I wonder how many poeple tjat has hppd whithout a clue of what it is...

Posted

The researchers that David is working with in Iceland might be very open to this idea. I don't know how many neuropeptides there are but the quotation is exciting abd further motivates me to do something about it.

"Interestingly, this

peptide enters into the brain and blocks NF-kB and other associated

toxic molecules, protects neurons, normalizes neurotransmitter, and

improves motor functions in monkeys with PD," Dr. Pahan said.

I'll take my chances of getting pricked with this neuropeptide as the results look amazing. I've been living with this shit for 15 fucking years. I want to enjoy a sunny day, live and work among others and not be a mental basket case, drink a fantastic glass of wine or a microbrew without feeling like driving my car off a cliff. I want to live again damn it and if this might, just might help then why aren't we banging in Dr. Abraham's door and that of Dr. Pahan?! Most of us have tried everything, every known drug but this has no side effects. Dr. Pahan is going to make an IND shortly so why not collaborate? Why not see if just one of us can be returned to the way we were pre HPPD. I would give away all my money, all my material possessions to stop that stupid kid I was from ever taking drugs and forced to live out a life sentence in this condition. Please don't say things like "stay sane" because living with HPPD is anything but, despite any level if acceptance one can achieve. I'm jealous man. Jealous of people my age and older that enjoy life while I scratch and crawl each and every single day through the work week and even the weekend to stay sane. I miss being sane and that's why I want all of us to get Dr. Abraham to look into this. He came up with the dopamine hypthesis; stands to reason that this is applicable to his research. For all you newcomers...

You better get up off your ass and make the case for yourselves. You don't want this 5, 10, 15 plus years. I'd rather go to jail knowing that a time will come for me to be free. I'd rather fall from a tall building and break every bone in my body and be put into a body cast knowing I'll heal and one day be free but to have HPPD for good knowing that there might ( and I place emphasis as I'm also a realist) just might be a way out, then why the fuck isn't everyone as pissed off as I am and going all out to find a way out of HPPD? Stay sane? Ha...

No offense Visual but we all have HPPD here and it all effects us differently. I, for one, will get cured or die trying. I'm not going to stop until I can be the person I once was. I miss him and he misses being part of the living world so if you have any means of utilizing your brilliant mind (being 100% sincere here) toward making any headway in getting these two doctors to talk, I suggest you make it happen.

The funny thing about crazy people is that they dont know that they're crazy. We are far from normal but are fully aware of wtf is going on. For all I know this neuropeptide could be bullshit but how completely twisted is it to potentially have a cure for something but gave absolutely no access to it?! The Michael J Fox foundation provided the funding for this project. Mr. Fox has also gone on to say that stem cell research will not cure Parkinson's but small molecule/peptide approaches will. Maybe gave the HPPD foundation donor get wind of this and collaborate. There must be a way to try and explore this option. Even the Hagan TREAT Act UN congress could help get us access but for Christ sake fight guys!!!

Never settle.

The best example is David Kozin.

Him and I got HPPD in and around the same time. Look at what he's accomplished in the past 15 years. It's because he's a fucking fighter god damn it!!! Follow his example will ya?!

Posted

Visual who are you talking about in terms of who is maligned between Dr. A and Dr. B?

Posted

Visual who are you talking about in terms of who is maligned between Dr. A and Dr. B?

Dr B has been ... and curiously by individuals that head major cancer centers AND tried to file patents on HIS work. Basically, alternative research is maligned since the big money has gone towards chemo. Of course, much 'alternative' stuff is crap and charlitans are everywhere...

CHARLATAN.png

As for "stay sane", those are not my words ... "Live sane" are. Fighting for a cure is a sane thing to do. So is finding anyway to enjoy life now. I mean no put down ... just been around chronic illness (many forms) whole life. With chronic illness a person has to do 2 things: work with the now, and work toward a better tomorrow.

I've tried to work with dozens of doctors and $$$ is gone. But everyone has to eat ... so eat healthy. Everyone has to interact with other people ... so make socializing as 'nice' as possible. We all live somewhere ... so make the place 'nice' for your neurons. If a person job is crap ... the try to find one that is enjoyable. This is what everyone can do. How long we are stuck with HPPD symptoms is unknown.

As far as 'utilizing your brilliant mind', many of us try hard. Somebody with medical licensing and permission will be the ones to test peptide therapies on us. It is so stinking ironic ... seems it is easy to get LSD, weed, E, etc. - yet try to get prescription meds or new treatments!

Posted

I emailed Dr. Abraham and copies David on this suggesting contact be established with the goal if designating this neuropeptide approach as an orphan drug.

Let's see where this goes.

Posted

I take it you are saying that this doctor is a snake oil salesman?

Posted

I take it you are saying that this doctor is a snake oil salesman?

Whoa ... careful what you read into this all.

I suspect Dr A is legit

I suspect Dr B is legit

I suspect Dr Pahan's research is legit

I suspect HPPD is multifaceted and there is no single solution

I suspect we can be desperate to try anything

In the end, each must find their way to cope and to get better. I suspect that if we don't use what we have now, we hinder our progress to 'wellness'. Hope must not just be in the future.

Personally, I find research exciting but so far it has been useful to me only in a diagnostic way. I can't wait for these guys. Once research is established, then Wall street needs to finance it - and they will not because there isn't enough money in it. So as peptide treatments begin to emerge, it won't be easy to try - and we don't know if it will help us personally. It is like Klonopin, Keppra or Sinemet. For some these are useful, for others these are useless. As these treatments get established over the decades, then maybe our grandchildren will benefit.

Just waiting for Dr A to publish has been interesting. A tiny pre-published blurb taught us his COMT theory and trial med. But here we are just the same. I am grateful for these crumbs, but I want a full coarse meal ... heavy bread, prime rib and all ... to sit fat with beer, music, and friends.

I emailed Dr. Abraham and copies David on this suggesting contact be established with the goal if designating this neuropeptide approach as an orphan drug.

Let's see where this goes.

Looking forward to hear what they say

Posted

The only thing I can find relief in is heavy opiate use...unfortunately. I went down the Methadone road as I lost all patience in waiting for a miracle med. that isn't coming.

Visual is correct. HPPD research has no money in it so trying to get the government to fund it or private individuals with lots of money is a waste of time. It ain't gonna happen.

Posted

Well then let's just give up.

I mean what's the point of even having this board if we are going to have to accept things as the way they are? Let's tell David to give it up, tell Dr. Abraham to go on early retirement and just sit back and do nothing...

You know, in my 2nd year of HPPD, David was just another face on the old storm loader board. I never would have thought he could have made it this far but he did.

I never thought we'd ever get a donor to give a researcher 100k but it happened. What's also apparent is that there is research going on which could be applicable to our condition and nobody seems to care. Raise enough noise and we will get attention. Send out calls for help and somebody will respond. It's not all about the money...

Posted

Well then let's just give up.

I mean what's the point of even having this board if we are going to have to accept things as the way they are? Let's tell David to give it up, tell Dr. Abraham to go on early retirement and just sit back and do nothing...

You know, in my 2nd year of HPPD, David was just another face on the old storm loader board. I never would have thought he could have made it this far but he did.

I never thought we'd ever get a donor to give a researcher 100k but it happened. What's also apparent is that there is research going on which could be applicable to our condition and nobody seems to care. Raise enough noise and we will get attention. Send out calls for help and somebody will respond. It's not all about the money...

I've seen a lot of names come and go. I can only hope they are still with us but you never know as this condition is no walk in the park especially for those of us to whom medication does nothing.

So go ahead give up.

I'll try my damnedest till I die.

Posted

I'll try my damnedest till I die.

Are you trying what you can NOW ???

Earlier you said, [ http://hppdonline.co...ial-dr-abraham/ ]

"Went to see Dr. Abraham and tried the experimental medication. For 2 1/2 hours I felt normal ... I felt so "myself" that I cried tears of joy for the 2+ hours that the drug worked. You would think that I'd be fixed on taking the medication in a continual basis but reason has outweighed desire as the drug IMHO is not meant for long term use unless you suffer from other neurological conditions."

So from this you know that dopamine is involved with some of your visuals, your DP and your DR - - - great news! Something to work with

So then you try Sinemet, but get the wrong prescription, [ http://hppdonline.co...bidopa-sinemet/ ]

"I dont get how the trial was a super success but my script of 10/100 3x per day didnt make a dent in my hppd..."

Suggestion:

First get the correct prescription (Sinemet 25/100) and try 3 to 4 pills. Sinemet 10/100 is not appropriate for low dosing

Second, if Sinemet 25/100 does little or nothing, then try combination. Add Keppra. If still needed more help add Klonopin (that is, this combo works for Merkin whereas individually they don't). It will take time and effort to workout such a combo ... but why not?

These are options available NOW. The research is exciting but will be years away before we can try. So research, learn, share, grow ... but try the tools that are available NOW.

BTW, have you had any success with either Klonopin or Keppra?

I mean what's the point of even having this board if we are going to have to accept things as the way they are?

The forum is for us to help each other ... including emotionally and ideas to try. We share. We learn. We cry. We try. Obviously this board isn't about giving up. However: anxiety, depression, frustration, dispair, etc. are resolved by a certain amount of acceptance now. It is not giving up ... it is gaining peace in spite of circumstances.

As a side point: Parkinson's Disease is actually a different animal than Parkinsonism (or other dopamine disorders). So, too, will be the 'cures' for these things. Note that there seems to be no significant relationship between COMT polymorphisms (basis for Dr A's HPPD theory) and developing PD. See: http://onlinelibrary...120325/abstract and http://www.ncbi.nlm....pubmed/18755526

Posted

i agree, great post / reaserch Visual..

Ive been living with this for 20 fu*king years now... from 15 to 35

something really does need to happen..

I have discoverd a web site where people give money for associated causes and projects. People upload a 3 minute video on to the site, explaining the cause / idea .. and people from around the Globe donate / give 10s of thousands of dollars ... many many thousands of dollars for the cause.

Visual... please inbox me so i can pass on the details just to you .. you can possibly give it to David Kozin and possibly Dr Abriham ?? we can work as a team.. maybe more affective than protesting at this stage.

At least worth investigating..

If we are going to mke noise, then something needs to happen... possibly uploading documentarys via u tube and make it go "viral" to bring more awarness to the world... who knows.. just ideas.

Posted

Must Be Way To Heal,

That is a great find.

Talk to David about it.

This could springboard the case to make HPPD fully legit.

Posted

Response from the head researcher...

Dear XXXX,

Happy 4th of July. Sorry, for my delay. Actually our university filters everything and your emails were quarantined. I just sent you one email regarding possible research on HPPD. I would be glad to examine our peptide in this disease condition.

Thank you so much for your interest in our research.

Kali.

Kalipada Pahan, Ph.D.

Professor of Neurological Sciences, Biochemistry and Pharmacology

The Floyd A. Davis, M.D., Endowed Chair of Neurology

Department of Neurological Sciences

Rush University Medical Center

1735 West Harrison St, Suite 320

Chicago, IL 60612

Ph: 312-563-3592; Fax: 312-563-3571

Email: Kalipada_Pahan@rush.edu

Posted

Dear XXXX,

Thank you for your suggestion. In fact, after your email, I have started reading about HPPD to see if we can apply for a grant and continue research HPPD.

Wishing you happy 4th of July,

Kali.

Kalipada Pahan, Ph.D.

Professor of Neurological Sciences, Biochemistry and Pharmacology

The Floyd A. Davis, M.D., Endowed Chair of Neurology

Department of Neurological Sciences

Rush University Medical Center

1735 West Harrison St, Suite 320

Chicago, IL 60612

Ph: 312-563-3592; Fax: 312-563-3571

Email: Kalipada_Pahan@rush.edu

Posted

Need Dr. Abraham, David and the donor in on this. I feel your excitement and hope this could work. Don't think he would have responded after reading up on the condition if he didn't think this approach would help what with his vast experience in the field. Let's see what they (David & co) say first but trust me, I've got butterflies just like you. If all is well and good you owe me a beer one day.

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