691 replies to this topic

[MarcB]

Maybe

[richard hnry]

I take a drug called Xadago which is a very good MAO-B inhibitor that is amazing.  It reduces symptoms and is neuroprotective.  It is way better than N in my opinion as it does work and is safe.  It is not approved in USA yet but you can get it from goldpharma.com 

[MarcB]

 

Georgetown study flawed?

 

Could MAO-B Inhibitor Withdrawal Rather than Nilotinib Benefit Explain the Dopamine Metabolite Increase in Parkinsonian Study Subjects? 

 

It seems we are back to square one   

 

 

Good find. Discouraging, but it's possible both are true.  Didn't Moussa and Pagan report that all 11 patients benefited -  which would include the 3 who did not recently discontinue MOA-B inhibitors?
 

[khalidnt]

Talking about hope   

 

“Every disease has a cure. If a cure is applied to the disease, then it is relieved by the permission of Allah the Exalted.”

 

For Early PD, what is the recommended treatment?  Nilotinib or MAO-B Inhibitor.

 

My understand MAO-B is good for PD who are using L-DOPA Medications to reduce the breakdown of the Dopamine - the drug is helping reducing the symptoms and it's good for *Mid-late stages.  Nilotinib is inhibiting of c-Abl expression and can be used at any stages.

 

 

*EU Commission approved Xadago® (safinamide) for mid-late stage PD patients on Februray 2015

[richard hnry]

Talking about hope   

 

“Every disease has a cure. If a cure is applied to the disease, then it is relieved by the permission of Allah the Exalted.”

 

For Early PD, what is the recommended treatment?  Nilotinib or MAO-B Inhibitor.

 

My understand MAO-B is good for PD who are using L-DOPA Medications to reduce the breakdown of the Dopamine - the drug is helping reducing the symptoms and it's good for *Mid-late stages.  Nilotinib is inhibiting of c-Abl expression and can be used at any stages.

 

 

*EU Commission approved Xadago® (safinamide) for mid-late stage PD patients on Februray 2015

 

Xadago is the most advanced MAO inhibitor there is.  It is 1000 times more selective at inhibiting the MAO-B enzyme than rasagiline.  A video on this subject can be  found if you do a search for xadago and video.  It explains it in great detail.  I have some Nilotnib but now that I have this drug I feel I do not need it.

[David Watford]

I have just been to see my neurologist. I was feeling a bit run down and a bit shaky, having stopped the Aryuvedic medicines and the Amantadine that I have been taking for 12 years. I guess that it had some Valerian with LDOPA stuff in it, so I expected some reversion. I wondered if it would be worthwhile doing the UKPDRS (PartIII) test again. However, we went ahead and the score surprised me.

 

In September, the disability score was 42. In November, it was 35. Last week, it was 29!

 

 Since then, I’ve gone back to  taking the Amantadine on the Neurologist’s advice (Apparently, it’s not the sort of thing you go cold turkey on). I have continued N at 50 mg per day, and intend to increase this. As far as I can tell, none of the stuff I have been taking is an MAO-B inhibitor.

 

I have arranged for some ECG’s. I have an initial QTc interval of 423ms.

 

If it’s placebo, then it’s working very well! Funny what you notice.  I do notice that my writing is better, particularly in the formation of the letters, and my signature is back to what it was 10 years ago. 6 months ago, I couldn’t sign my name properly at all. Also, I am driving more confidently-my spatial awareness seems to be better.

 

Logic: you asked about the C60 and Resveratrol etc. I made up some vinaigrette with the olive oil C60, but I got the oil vinegar ratio round the wrong way! By the time I fixed it, it had become tremendously dilute. So I am going to start again soon. A new lot has just arrived. I have been taking Resveratrol/ Pterostilbene. Amid all the other changes, I can’t determine the effect.

 

 

[45rpm]

Why hasn't there been more discussion about how certain anti-rejection drugs prevent and might cure both Alzheimer's and Parkinson's? I've been following the research for a couple years and this topic hasn't covered on many Parkinson's boards. Here's one article on the subject.

 

http://www.psychiatr...article/419660/

 

According to the article, low doses of Cyclosporine might be beneficial. The drug is in a class of "Calcineurin Inhibitors." Here's a list of other Calcineurin Inhibitors.

 

https://www.drugs.co...inhibitors.html

 

Also, here's another inhibitor that might work on Parkinson's and Alzheimer's.

 

http://www.alzforum....alize-synuclein

 

 

 

 

[khalidnt]

Why hasn't there been more discussion about how certain anti-rejection drugs prevent and might cure both Alzheimer's and Parkinson's? I've been following the research for a couple years and this topic hasn't covered on many Parkinson's boards. Here's one article on the subject.

 

http://www.psychiatr...article/419660/

 

According to the article, low doses of Cyclosporine might be beneficial. The drug is in a class of "Calcineurin Inhibitors." Here's a list of other Calcineurin Inhibitors.

 

https://www.drugs.co...inhibitors.html

 

Also, here's another inhibitor that might work on Parkinson's and Alzheimer's.

 

http://www.alzforum....alize-synuclein

 

Thank you for the information. It's interesting to see the amount of potential drugs & supplements  for PD and no cure till now!  

 

I don't know why?  clinical trials are not so effective to do breakthrough technology. 

 

PD is a progressive and any treatment should be faster than the PD. So we need something more effective and faster than PD to reverse  it. 

 

I started N but till now I don't see it any changes. I ordered MAO-B Inhibitor as backup plan.

I believe Stem Cell is the best option for early PD. 

[khalidnt]

Good news:

 

WASHINGTON (February 27, 2017) – Georgetown University Medical Center (GUMC) today announces the launch of a phase II clinical trial to study the safety of the cancer drug nilotinib and its effects on clinical outcomes and biomarkers in people with Parkinson’s disease.  

 

As part of the year-long random ascending dose trial, a third of the participants will receive 150mg of nilotinib, another third will receive 300mg of nilotinib and the final third will receive a placebo (inactive drug). Clinical outcomes will be assessed at six and 12 months and compared to assessments at the start of the trial. A one-year open-label extension trial, in which all participants will be randomized to 150mg or 300mg nilotinib, is also planned upon completion of the placebo-controlled trial to evaluate nilotinib’s long-term effects.

 

 

I don't know if Micheal J Fox will do another Trial with Nilotinib!

[MarcB]

Good news:

 

WASHINGTON (February 27, 2017) – Georgetown University Medical Center (GUMC) today announces the launch of a phase II clinical trial to study the safety of the cancer drug nilotinib and its effects on clinical outcomes and biomarkers in people with Parkinson’s disease.  

 

As part of the year-long random ascending dose trial, a third of the participants will receive 150mg of nilotinib, another third will receive 300mg of nilotinib and the final third will receive a placebo (inactive drug). Clinical outcomes will be assessed at six and 12 months and compared to assessments at the start of the trial. A one-year open-label extension trial, in which all participants will be randomized to 150mg or 300mg nilotinib, is also planned upon completion of the placebo-controlled trial to evaluate nilotinib’s long-term effects.

 

 

I don't know if Micheal J Fox will do another Trial with Nilotinib!

 

Their website says it's for Alzheimer’s.
 

[khalidnt]

 

Good news:

 

WASHINGTON (February 27, 2017) – Georgetown University Medical Center (GUMC) today announces the launch of a phase II clinical trial to study the safety of the cancer drug nilotinib and its effects on clinical outcomes and biomarkers in people with Parkinson’s disease.  

 

As part of the year-long random ascending dose trial, a third of the participants will receive 150mg of nilotinib, another third will receive 300mg of nilotinib and the final third will receive a placebo (inactive drug). Clinical outcomes will be assessed at six and 12 months and compared to assessments at the start of the trial. A one-year open-label extension trial, in which all participants will be randomized to 150mg or 300mg nilotinib, is also planned upon completion of the placebo-controlled trial to evaluate nilotinib’s long-term effects.

 

 

I don't know if Micheal J Fox will do another Trial with Nilotinib!

 

Their website says it's for Alzheimer’s.
 

 

 

Sorry for not adding the link 

  GEORGETOWN ANNOUNCES PHASE II CLINICAL TRIAL OF NILOTINIB FOR PARKINSON’S DISEASE

[richard hnry]

I have 100 grams of N from last group buy that I would like to sell to anyone who is interested.

[bossmanglb]

I have 20 grams from Logic's last group buy to sell if anyone would like to purchase. 

 

(I bought for purposes unrelated to PD)

[45rpm]

Has anyone experimented with silica to improve Parkinson's symptoms? As you've probably read over the years, aluminum buildup in the brain can lead to a number of neurological diseases such as dementia, Alzheimer's and Parkinson's. And apparently, consuming silica removes aluminum from the body and can improve the symptoms of these diseases.

 

https://www.hippocra...-mineral-water/

 

The supplement Horsetail (also known as Shave Grass) contains plenty of silica. Has anyone taken this for Parkinson's?

 

http://www.naturalne...avy_metals.html

 

 

[splib]

I tried silica and various other detox methods (cilantro, far-infrared sauna, liver related supplements, some others) for a few months without any noticeable difference. I stopped working so much on this track after doing a hair element analysis that had absolutely no presence of heavy metals. I'm kind of under the impression that especially if you're younger if you had enough heavy metals to do damage you'd probably have other things going on too like headaches and maybe liver problems.

 

But it's probably a good idea to take minerals as part of the overall health regimen to not allow bad ones to gain a foothold.

 

Some other sources of silica are Fiji bottled water and there's a form that is supposed to be much more highly bioavailable here: http://www.orgonosilica.com/

 

splib.

[khalidnt]

here is new a supplement that can be added to Silica and help to neuro-protective:

 

Folinic acid, an adjuvant medication for bowel cancer, also may become a potential treatment for early-onset Parkinson’s disease, according to results of a preclinical study that used fruit flies.

 

Folinic Acid Shows Promise as Parkinson’s Treatment in Fruit Fly Study http://sumo.ly/xb2Q

 

I bought a Folinic acid from amazon and I help it will help.

[jack romaine]

i wonder if this approach is also relevant to PD?

 

Could flashing light treat Alzheimer’s?

 

http://www.cnbc.com/...he-disease.html

 

In a paper published in the journal Nature in December, researchers at MIT led by Dr. Li-Huei Tsai found that light entrainment cleared plaques from the brains of mice.

 

"It was unbelievable," Tsai recalled. "At first we were very surprised to see that after we induced gamma rhythms in the Alzheimer's model, the amyloid is greatly reduced. Within just one hour, we saw the amyloid level was cut almost by half."

 

There were other signs of good news in the brain, too: an effect on tau and inflammation, also implicated in Alzheimer's, plus a restoring of the function of microglia — what Tsai described as the brain's janitors — against amyloid.

[khalidnt]

 

i wonder if this approach is also relevant to PD?

 

Could flashing light treat Alzheimer’s?

 

http://www.cnbc.com/...he-disease.html

 

In a paper published in the journal Nature in December, researchers at MIT led by Dr. Li-Huei Tsai found that light entrainment cleared plaques from the brains of mice.

 

"It was unbelievable," Tsai recalled. "At first we were very surprised to see that after we induced gamma rhythms in the Alzheimer's model, the amyloid is greatly reduced. Within just one hour, we saw the amyloid level was cut almost by half."

 

There were other signs of good news in the brain, too: an effect on tau and inflammation, also implicated in Alzheimer's, plus a restoring of the function of microglia — what Tsai described as the brain's janitors — against amyloid.

 

 

Good question? I read the article, well writing. The light treatment is not new; but, it is giving people new hope after many drug treatment failure.

 

"Alzheimer's disease is one of the biggest unanswered questions in medicine."

 

I wonder if Parkinson is going to the same tunnel -  science's developing drugs without understanding the real case of the disease. e.g Maybe Alpha-synuclein accumulation is the result of PD not the cause of it.

 

Thank for the share.

[jack romaine]

I am interested in the previous treatment(s) using light. Can you provide a reference or some information on that please.

Thanks.

[45rpm]

I posted an article about gamma waves back in December and I have been studying the concept since then. The study was performed by researchers at MIT.

 

But here's a Canadian study that predates the MIT study by eight months. While the MIT researchers are promising human trials in 2018, a similar Canadian study has already been performed. Unlike the MIT researchers who used just visual stimulation at 40 hertz, the Canadian research team also used audio stimulation at the same frequency, 40 hertz.

 

Here's a link to that study...

 

http://www.ctvnews.c...ients-1.2868393

 

According to the Canadian study, the subjects with the more severe Alzheimer's did not show any improvement. Based on what I have read about the MIT study, I would argue that these subjects would have improved if they had received the audio and visual stimulation for a longer period.

 

 

 

[Jaris]

For anyone interested in an easy way to try this, there are several videos on Youtube that claim to produce 40 Hz flashes and sound. Be very careful - flashing lights can cause epileptic seizures. Even if you've never had one, be safe and have someone nearby who can shut if off and help you if need-be,

I turn down the brightness on my display, make it full-screen, make the room dark, and wear headphones (so i don't drive everyone else crazy). Also, depending on your Internet connection, you may want to download the videos and play them from your computer to avoid delays and hiccups.

 

I have no idea if they're as promised, and so far I've only been able to stand 1/2 hour at a time. I haven't found a video that does both light and sound, but I play these 2 at the same time:

 

Gamma frequency (40hz) visual flashes: 

Gamma Wave 40 Hz Isochronic Tone: 

Edited by Jaris, 08 April 2017 - 08:29 PM.

[45rpm]

Unfortunately, your computer screen has a flash rate of 60hz and the YouTube video will not play at 40hz on your screen.

[Jaris]

Unfortunately, your computer screen has a flash rate of 60hz and the YouTube video will not play at 40hz on your screen.

 

That used to be true. "Refresh rate is how often a TV or monitor changes the image (also known as a "frame") on screen. With traditional (cathode ray tube) televisions, this was 60 times each second. Modern TVs and monitors refresh at much higher rates, most commonly 120Hz(120 frames per second)."

 

I have no proof that my flat screen monitor is flashing on/off at 40 hz when this video plays, but if they made the video correctly, and Youtube is serving it properly, and my laptop is working properly, it should be.

And, since I've downloaded the video, that takes YouTube out of the chain.

[45rpm]

Trust me, unless you change the refresh rate on your monitor, you're not getting 40hz when you view a YouTube video. When I tried to change the refresh rate on my computer, it would allow me to choose between only two speeds, 60hz and 75hz.

[mis 37]

Has anyone experienced what natural supplements might help taking Neupro (rotigotine) and Plurimen(seleginine) ?

 

Thank you

[stefan_001]

Buy trazodone?
http://www.bbc.com/n...health-39641123

[Heisok]

I was very interested in this when I heard the Radiolab story. At the time, I downloaded a program, and thought that setting a custom setting in NVIDIA at 40hz might help. It ran fine on my screen, but I did not pursue farther. I wanted a light strip.

 

Since you guys put the idea out here, I researched a little more. Some plans are around for creating a 40hz light array., but I found somebody who has built a simple kit. I ordered one to try. https://www.gammalighttherapy.com/

 

I apologize if this is taking away from the important topic.

 

I posted an article about gamma waves back in December and I have been studying the concept since then. The study was performed by researchers at MIT.

 

But here's a Canadian study that predates the MIT study by eight months. While the MIT researchers are promising human trials in 2018, a similar Canadian study has already been performed. Unlike the MIT researchers who used just visual stimulation at 40 hertz, the Canadian research team also used audio stimulation at the same frequency, 40 hertz.

 

Here's a link to that study...

 

http://www.ctvnews.c...ients-1.2868393

 

According to the Canadian study, the subjects with the more severe Alzheimer's did not show any improvement. Based on what I have read about the MIT study, I would argue that these subjects would have improved if they had received the audio and visual stimulation for a longer period.

 

 

Edited by Heisok, 21 April 2017 - 01:48 AM.

[khalidnt]

Hello everyone,

 

I think most of you have tried Nilotinib, can you please share your experience.

 

For me I stoped using Nilotinib because I've notice any changes nor I get any side effect "common".

 

I switched to DopaVite Supplement after I read a "The Comprehensive Guide to Parkinson's Disease".

The Author think "alpha synclein"is not the cause of PD and many healthy people have alpha synclien 

 

Edited by khalidnt, 27 April 2017 - 07:34 PM.

[Jaris]

I emailed the people running the new N study on PD, and they just wrote back. Unfortunately, I'm not in their area, so it will do me no good. Here it isi for anyone interested:

 

 Dear Sir/ Madam,

 

        Thank you for your interest in clinical research, the key pathway to advancing our knowledge about how to best treat Parkinson’s and other neurodegenerative disorders.  You have expressed interest in Georgetown University’s work with Nilotinib for Parkinson’s disease.

   

            The phase II clinical trial is designed to examine the safety and efficacy of Nilotinib in participants with stage 2.5-3 Parkinson’s disease. It is a placebo controlled study, which means study participants will be randomized to receive either Nilotinib or a placebo. Neither the participants nor the clinical care staff will know who is taking active drug/placebo.

 

        There are limited spaces in the study and participation is primarily accessible to those who live in the Washington, DC area due to required frequent visits to our facility as  the study requires.  We need committed patients  to complete the 17 visits involved in  this study for a period of 15 months.  This involves every 2 weeks for the first 12 weeks and then every 30 days for the next 12 months.

        

         The criteria also states that potential subjects should be stable on Levodopa 800 mgs or less per day.

    

         For more information about the study please log on to www.clinicaltrials.gov.

 

         Please note my contact information below  and feel free to contact me anytime for any questions.

 

 

  With warmest regards,

 

   Joy

 

 

Joy Arellano BSN RN

Clinical Nurse Coordinator

Movement Disorders Center

Department of Neurology

Georgetown University Hospital

3800 Reservoir Road NW

Washington DC 20007

202 444 7273 (office)

 mja6@gunet.georgetown.edu (email)

[MarcB]

I take a drug called Xadago which is a very good MAO-B inhibitor that is amazing.  It reduces symptoms and is neuroprotective.  It is way better than N in my opinion as it does work and is safe.  It is not approved in USA yet but you can get it from goldpharma.com 

 

This was  recently approved (last month) by the FDA for PD.

 

https://www.thepharm...-pd-drug-xadago

 

Edited by MarcB, 28 April 2017 - 06:38 PM.