691 replies to this topic

[Logic]

Nilotinib 'R&D results' thread?

 

I feel that a thread on the results seen/experienced with our experiments with Nilotinib for neurodegenerative disease is called for.

Experimenters are loth to even acknowledge being in possession of Nilotinib due to possible legal repercussions.
I face the same problem and am unsure how to work around the issue?

I do know the forum has private threads.
I could look into that, but again; it would only be open to members that have been members for a long time/ are trusted and have bought N.

But this would exclude all the new members with PD etc and that is exactly who we are interested in hearing from!

 

I think that possibly a 'Nilotinib R&D' thread where people can post about the outcomes of their experiments on their 'lab animals' is probably the best option?

 

My own 'R&D' seems to show a slight but noticeable improvement so far. 
I am considering administering the N with meals, or VCO, to increase the effectiveness of  the dose.
(VCO (Virgin Coconut Oil) is known to disrupt the lipid layer on virii so 'disguised',  to the immune system and there is a link between such virii and PD, ALZ etc)

The protocol I am using also includes a number of chelators etc, as mentioned earlier in the thread, so the results might be confounded by these other substances.

[MarcB]

It seems like sending money to the UK should work.  I wonder if maybe there are less detectable ways to move money?  Maybe we don't need Paypal?  Just 'noodling' here, but maybe we all join Paperback Swap and mail cashier checks in the books?

 

Again, thank you so-o much for all your time, brain power, and hard work.

 

 

[LongLife]

Nilotinib 'R&D results' thread?

 

I feel that a thread on the results seen/experienced with our experiments with Nilotinib for neurodegenerative disease is called for.

Experimenters are loth to even acknowledge being in possession of Nilotinib due to possible legal repercussions.
I face the same problem and am unsure how to work around the issue?

I do know the forum has private threads.
I could look into that, but again; it would only be open to members that have been members for a long time/ are trusted and have bought N.

But this would exclude all the new members with PD etc and that is exactly who we are interested in hearing from!

 

I think that possibly a 'Nilotinib R&D' thread where people can post about the outcomes of their experiments on their 'lab animals' is probably the best option?

 

My own 'R&D' seems to show a slight but noticeable improvement so far. 
I am considering administering the N with meals, or VCO, to increase the effectiveness of  the dose.
(VCO (Virgin Coconut Oil) is known to disrupt the lipid layer on virii so 'disguised',  to the immune system and there is a link between such virii and PD, ALZ etc)

The protocol I am using also includes a number of chelators etc, as mentioned earlier in the thread, so the results might be confounded by these other substances.

LOGIC

We know that N takes over 30 days to show effective results from the research already available, as with other related family drugs. Potential experimenters will need to sit tight for a while longer for progress reports to flow. 

 

A separate thread is needed; agreed. I would be interested in putting together a spread sheet and memorialize a few key factors for each Buyer via private message. Each Buyer would assign a User Name to avoid being recognized (if preferred). Each Buyer would make their own Comments and Observations. The data could be published in the new thread every 15 days, comparative to all of the Buyers and we would have this progress report available to the tire kickers who are waiting to find out if N is effective for those who are experimenting.

[Mian Ali Ismail]

Most people saw benefits after 6 to 8 weaks of taking N in the trial !!!

[Logic]

LOGIC
We know that N takes over 30 days to show effective results from the research already available, as with other related family drugs. Potential experimenters will need to sit tight for a while longer for progress reports to flow.

 
Yes; 6-8 weeks is what they said, so perhaps it's placebo, or the other stuff.
 

A separate thread is needed; agreed. I would be interested in putting together a spread sheet and memorialize a few key factors for each Buyer via private message. Each Buyer would assign a User Name to avoid being recognized (if preferred). Each Buyer would make their own Comments and Observations. The data could be published in the new thread every 15 days, comparative to all of the Buyers and we would have this progress report available to the tire kickers who are waiting to find out if N is effective for those who are experimenting.

 

It would be great if you would do this LongLife!  I have heard similar ideas from one or 2 people?

 

I await more feedback on the idea and will then start the thread if there is enough interest?
 

Edited by Logic, 06 June 2016 - 03:11 AM.

[MarcB]

I'm one of those tire kickers who just discovered LongeCity in late May and I absolutely want to be in on the next buy for as much as the shelf life allows.  I am confident the number of participants will expand significantly as word spreads - driving down the cost further.

 

Thank you all.

[roydeman]

I truly appreciate all the work everyone is putting into this. Besides this forum, info is sparse. I'm wondering why the full data has yet to be released from the Georgetown study. Makes me worried that it's not as great as anticipated.

Edited by roydeman, 06 June 2016 - 08:47 PM.

[resveratrol_guy]

 

LOGIC
We know that N takes over 30 days to show effective results from the research already available, as with other related family drugs. Potential experimenters will need to sit tight for a while longer for progress reports to flow.

 
Yes; 6-8 weeks is what they said, so perhaps it's placebo, or the other stuff.
 

A separate thread is needed; agreed. I would be interested in putting together a spread sheet and memorialize a few key factors for each Buyer via private message. Each Buyer would assign a User Name to avoid being recognized (if preferred). Each Buyer would make their own Comments and Observations. The data could be published in the new thread every 15 days, comparative to all of the Buyers and we would have this progress report available to the tire kickers who are waiting to find out if N is effective for those who are experimenting.

 

It would be great if you would do this LongLife!  I have heard similar ideas from one or 2 people?

 

I await more feedback on the idea and will then start the thread if there is enough interest?
 

 

 

Definitely let's start an experience thread, which points back to this one for context. Logic, you're in charge here, so do it however you see fit. And for that matter, please begin with your own report, however minor the effect has been. We need neutral cases as much as positive or negative ones in order to ascertain efficacy.

 

I haven't provided any feedback yet because my friend with Parkinson's won't be able to switch his regimen until August due to a conflict with other medical issues.

 

I've been offline for a while. Still stuck in a math hole...

[resveratrol_guy]

 

http://www.ncbi.nlm....4?dopt=Abstract

 

full report:  http://jmedicalcaser...3256-016-0931-6

 

 

Ali, how did you manage to stumble upon this article? It sounds like science fiction. I mean, you don't go from semiconscious advanced Alzheimer's back to playing chess, even at the level of a child. It simply doesn't happen. But even if the claims are exaggerated, there might be a kernel of truth to it. It deserves its own thread if you want to create one. Otherwise these posts might get deleted by the mods for being off-topic here.

[Linda Gray]

I would sure like to be included in any results posted thread. I would also like to know if the per person being treated has parkinson or MSA.
Thanks

[centralFloridaMan]

I think that a spread sheet tracking results over time by individual is a great idea.  Count me in.

[Mian Ali Ismail]

 

 

http://www.ncbi.nlm....4?dopt=Abstract

 

full report:  http://jmedicalcaser...3256-016-0931-6

 

 

Ali, how did you manage to stumble upon this article? It sounds like science fiction. I mean, you don't go from semiconscious advanced Alzheimer's back to playing chess, even at the level of a child. It simply doesn't happen. But even if the claims are exaggerated, there might be a kernel of truth to it. It deserves its own thread if you want to create one. Otherwise these posts might get deleted by the mods for being off-topic here.

 

I kind of like stumbled upon it while researching.The Journals where this is published are authentic and credible and the trial was done in Human Microbiology Institute NewYork. Could you start the thread Reservetol Guy.I have been going thru the forum but havent been able to find the link from where I can find a new thread specifically for this.Thnks

NEW YORK, June 7, 2016 /PRNewswire/ -- Researchers at the Human Microbiology Institute (HMI) have uncovered a potential new Alzheimer's treatment that significantly reversed the late-stage effects of the debilitating neurodegenerative disease.

Logo - http://photos.prnewswire.com/prnh/20160606/376069LOGO

The results, published in the Journal of Medical Case Reports, details the promising results that the research duo of Victor and George Tetz had in treating a 77-year-old Alzheimer's patient with the repurposed medication deoxyribonuclease I, an enzyme approved by the U.S. Food and Drug Administration for the treatment of mucus buildup in cystic fibrosis patients.

"Our results show potential for reversing the effects of a disease that dramatically impacts not only millions of patients around the world, but also their families," said George Tetz, scientific officer, at HMI.  "Our experimental drug has given one patient a new lease on life, and now we are continuing with our tests with the hopes of reversing the devastating effects of Alzheimer's disease and other incurable diseases like dementia and Parkinson's."

According to the published case study, the male patient had been diagnosed with dementia and behavioral disturbance secondary to late-onset Alzheimer's disease 30 months before the researchers first saw him. He had been undergoing routine treatment, but his cognitive condition continued to deteriorate and he had rapidly progressing amnesia and behavioral changes.

The patient was unable to remember his name or family members, among other things, and had been diagnosed as terminal when his family agreed to try DNase I. Just two days after treatment began, improvements were seen. And he was soon able to recognize family members, dress himself, tie his shoelaces, feed himself and walk and ride an exercise bike.

"Treatment with DNase I allowed the patient to withdraw from a terminal state and resulted in significant improvements in cognitive and behavioral function, including the ability to walk and perform everyday tasks with near independence," said Victor Tetz, scientific advisor at HMI.

HMI, a non-profit research organization, is working to convert its work into a drug to help treat dementia, Alzheimer's and Parkinson's diseases.

Alzheimer's disease is the most common cause of dementia and is characterized by a progressive loss of brain tissue leading to amyloid-b accumulation and severe decline in cognitive function. 

More than 5 million Americans are living with Alzheimer's disease. The cause of Alzheimer's disease is poorly understood, and available treatments are limited in their efficacy, particularly for patients with more severe symptoms.

For more information about Victor and George Tetz and the Human Microbiology Institute, please contact Max Smetannikov with MVG at 917 310 3396 or Email

http://www.prnewswir...-300280725.html

[LongLife]

I would sure like to be included in any results posted thread. I would also like to know if the per person being treated has parkinson or MSA.
Thanks

LINDA GREY:

The study is concerning the use of  deoxyribonuclease I in treatment of Alzheimer's and they make reference to "dementia" as well as secondary behavioral disturbances. There are eleven forms of dementia, one is caused via physical injury, the others are neuro-degenerative diseases/disorders.

 

The nilotinib [N] group buy thread often becomes a catch all for discussion of neuro-degenerative issues. I sent you a PM (Personal Message) concerning your interest in MSA (Multiple System Atrophy). I encourage you to start a thread on the topic of MSA. I am very tight for time or I would do it myself, as I am preparing to organize a new thread on the follow-up of the N applications in ongoing experiments via the group buy. That thread will inevitably refer to Parkinson, Alzheimer's, MSA and other disorders wherein the N will be applied and observed.

 

Here is a general overview of MSA for anyone interested or curious:

 

www.ninds.nih.gov/disorders/msa/detail_msa.htm 

 

Regarding your question, here is a snippet of what the first page of the study in questions states:

 

Study Background

"Alzheimer's disease is the most common cause of dementia and is characterized by a progressive loss of brain tissue leading to amyloid-β accumulation and severe decline in cognitive function. The cause of Alzheimer’s disease is poorly understood, and available treatments are limited in their efficacy, particularly for patients with more severe symptoms."

Study Case presentation

"We report the case of a 77-year-old Caucasian man with severe dementia and behavioral disturbance secondary to Alzheimer’s disease treated with memantine who began adjunct treatment with deoxyribonuclease I."

INTERESTING.

[45rpm]

In the Deoxyribonuclease 1 study, the name of the drug that was used is called:

 

Generic Name: dornase alfa
Brand Name: Pulmozyme

 

 

And I found this on Yahoo...

 

"DNase I binds to the cytoskeletal protein actin. It binds actin monomers with very high (sub-nanomolar) affinity and actin polymers with lower affinity. The function of this interaction is unclear. However, since actin-bound DNase I is enzymatically inactive, the DNase-actin complex might be a storage form of DNase I that prevents damage of the genetic information.

This gene encodes a member of the DNase family. This protein is stored in the zymogen granules of the nuclear envelope and functions by cleaving DNA in an endonucleolytic manner. At least six autosomal codominant alleles have been characterized, DNASE1*1 through DNASE1*6, and the sequence of DNASE1*2 represented in this record. Mutations in this gene, as well as factor inactivating its enzyme product, have been associated with systemic lupus erythematosus (SLE), an autoimmune disease. A recombinant form of this protein is used to treat one of the symptoms of cystic fibrosis by hydrolyzing the extracellular DNA in sputum and reducing its viscosity. Alternate transcriptional splice variants of this gene have been observed but have not been thoroughly characterized."

Edited by 45rpm, 10 June 2016 - 01:03 AM.

[Mian Ali Ismail]

Would there be any side effects of taking Deoxyribosenuclease 1 Orally ? The usual route is thru nebulization

Edited by Mian Ali Ismail, 10 June 2016 - 05:57 AM.

[LongLife]

NILOTINIB (to the rescue?), another article; based on a "new" theory but explains more about N and what happens.

 

The secret power of lysosomes to cure Parkinson’s and Alzheimer’s:

http://mappingignora...ons-alzheimers/

 

Good Point. Worth looking into the biochemical aspects here. 

[Park2009]

Park2009, you mentioned a few details about your cognitive outcome with nilotinib. It sounds like you got a temporary boost but it only lasted a few days. Can you provide more details? Thanks for sharing so much information.

 

 

As on Today I have taken 97 Capsules, one each per day of 150 mg of "N" I am still left with 71 capsules. 

That assures me, I am good for another 2 month and 10 days.

 

In the meantime another 168 caps have been procured for  me. I will get them by July 2016.

At that time I will take a call , if I continue taking 1 "N" per day or shift to 2 caps per day .

 

With 3 months and 1 week of taking "N" , I will like to sum up my observations :

 

1) My main issue is Tremors . To keep tremors under check , way back in year 2009 , I used to take Levodopa / carbidopa (LD/CG) 100/25 mg  one tablet , 4 times a day and in the night it was  1 tablet LD/CD controlled released 200/50 mg.

 

2) Currently I need 2 LD/CD 100/25 mg tablets , 6 times a day + 1 tablets of Controlled release LD/CD at bed time.  + 10 mg of Muscle relaxant . This was a 3 times jump in Dopamine intake over  7 years of parkinson's treatment. 

 

3) Now after 9 weeks of Nilotinib use over and above regular intake of LD / CD as detailed above . I can say for sure My tremors have further reduced. But I can not reduce Levodopa / Carbidopa. I need it every 3 hours, otherwise tremors reappear, My energy level is better , ever since I started taking Tasigna. But I can say for sure, in my case I can not 

 

4) Regarding Cognitive improvement , I believe it is  not much an issue with me.   Main issue is Motor function.( Tremors)

 

5) Regarding Constipation (Non motor ) , it is  an issue with me , But "N" has not made any impact on my constipation. 

[45rpm]

From the above article:

 

"A promising drug for neurodegenerative diseases is a chemotherapy used for leukemias called Nilotinib. Pre-clinical studies in mouse models of Parkinson’s disease demonstrated that this drug induces the degradation of alpha-synuclein, the main component of protein aggregates, by the lysosomes."

 

 

I found the following from a 2012 article titled, Isorhynchophylline, a natural alkaloid, promotes the degradation of alpha-synuclein in neuronal cells via inducing autophagy. 

 

"Isorhynchophylline (IsoRhy) is a major tetracyclic oxindole alkaloid isolated from the Chinese herbal medicine Uncaria rhynchophylla (Gouteng in Chinese), which has been used for the treatment of neurological diseases in East Asia for centuries."

 

 

So apparently Nilotinib and Uncaria Rhnchophylia do the exact the same thing.

 

 

I gave my mother Uncaria Rhynchophylia (better known as Gouteng or Gou Teng) for about six weeks a couple years ago with no results. Now I wonder if I stopped the treatment too soon or simply didn't give her a large enough dose. I still have some left over and I might start giving it to her again. By the way, it's inexpensive -- unlike Nolitinib.

 

 

Edited by 45rpm, 10 June 2016 - 05:38 PM.

[LongLife]

Would there be any side effects of taking Deoxyribosenuclease 1 Orally ? The usual route is thru nebulization

MAIN ALI ISMAIL;

It is "Deoxyribonuclease 1" 

 

Here are a few sites of interest. It appears that there is no oral delivery system presently due to gastrointestinal degregation of DNase 1.

 

http://www.worthingt...se/default.html

 

DNase I (Deoxyribonuclease 1) induced DNA degradation is inhibited by neomycin. (http://www.ncbi.nlm....pubmed/10819299) 

[LongLife]

 

Park2009, you mentioned a few details about your cognitive outcome with nilotinib. It sounds like you got a temporary boost but it only lasted a few days. Can you provide more details? Thanks for sharing so much information.

 

 

As on Today I have taken 97 Capsules, one each per day of 150 mg of "N" I am still left with 71 capsules. 

That assures me, I am good for another 2 month and 10 days.

 

In the meantime another 168 caps have been procured for  me. I will get them by July 2016.

At that time I will take a call , if I continue taking 1 "N" per day or shift to 2 caps per day .

 

With 3 months and 1 week of taking "N" , I will like to sum up my observations :

 

1) My main issue is Tremors . To keep tremors under check , way back in year 2009 , I used to take Levodopa / carbidopa (LD/CG) 100/25 mg  one tablet , 4 times a day and in the night it was  1 tablet LD/CD controlled released 200/50 mg.

 

2) Currently I need 2 LD/CD 100/25 mg tablets , 6 times a day + 1 tablets of Controlled release LD/CD at bed time.  + 10 mg of Muscle relaxant . This was a 3 times jump in Dopamine intake over  7 years of parkinson's treatment. 

 

3) Now after 9 weeks of Nilotinib use over and above regular intake of LD / CD as detailed above . I can say for sure My tremors have further reduced. But I can not reduce Levodopa / Carbidopa. I need it every 3 hours, otherwise tremors reappear, My energy level is better , ever since I started taking Tasigna. But I can say for sure, in my case I can not 

 

4) Regarding Cognitive improvement , I believe it is  not much an issue with me.   Main issue is Motor function.( Tremors)

 

5) Regarding Constipation (Non motor ) , it is  an issue with me , But "N" has not made any impact on my constipation. 

 

PARK2009;

 

I suggest taking lecithin throughout the day, like maybe starting with 1 cap (1,200mg) with each meal and adding one cap every five days up until having 2 caps with each meal or six caps a day. If you prefer granular or other form then divide it with meals and shoot for the recommended max of <8 grams a day. A-Synuclein has been chewing up the myelin nerve coating which is primarily made up of lecithin (it's components) and another lipid. In addition, a good Omega3 supplement is well in need. If you can find real sunflower oil then use that and/or coconut oil instead of any other kind of cooking oil for the kitchen. Try stopping all sugar intake. 

 

For constipation a great help is Aloe vera, now in most all nursery's this time of year. Get a few for indoors. Cut off a leaf, wash, cut off spines, cut off 3" and cut into small 3/4 inch pieces and blend it up with a few tablespoons of water (less is best). Save the rest of the leaf in a plastic bag wrapped up in the refrigerator. If the juice drops onto anything it will be stained for the rest of your life probably unless immediately cleaned and neutralized.

 

Have some honey, molasses or maple syrup handy to chase it. Drink this every night before bedtime. Five to seen days out to be fine until things do not come out black. It is nasty; very bitter, don't stop at all, just slug it down. It is great for you. Two mornings later and you will start to flow. It will stink to the next block so be prepared, as it will zap parasites and evil bad things leering in the colon. This is fine to do every four months. Use the jell inside the leaves dirt on hair/scalp, any bites, wounds, incition/cut, facial. Incredible when fresh. 

 

Meanwhile, order some KEFIR grains off of some site like Amazon ($7-10) and start making a cup of Kefir a day to drink. After doing the Aloe vera , getting normal bowels then the Kefir should do the rest for you. I add a tiny spoon of STEVIA, or sometimes strawberries, blueberries or any berries whenever in season. 

 

You might GOOGLE "plant dopamine", try some of that. If you get some DMEA (health food store) and maybe like 25mg or less a day 5 days cycles with nettle tea the other days then fatigue "be gone". If diabetic, some honey, molasses or maple syrup will be called for as Nettle is potent for pre-diabetes in lowering blood sugar.

 

Follow a Ketogenic Diet for these properties:

 

All of the following conditions have been shown in animal models or in human studies to improve upon using a ketogenic diet (super low carbohydrates/no sugar):

 

Autism

Traumatic Brain Injury

Alzheimer’s Disease

Parkinson’s Disease

Brain Cancer

Diabetes

Prostate Cancer

Obesity

Chronic Pain/Inflammation

Multiple Sclerosis

Insomnia/Circadian Rhythm disorders

 

The Nilotinib will work noticeable better for you once implemented the above protocol. 

[Mian Ali Ismail]

 

Would there be any side effects of taking Deoxyribosenuclease 1 Orally ? The usual route is thru nebulization

MAIN ALI ISMAIL;

It is "Deoxyribonuclease 1" 

 

Here are a few sites of interest. It appears that there is no oral delivery system presently due to gastrointestinal degregation of DNase 1.

 

http://www.worthingt...se/default.html

 

DNase I (Deoxyribonuclease 1) induced DNA degradation is inhibited by neomycin. (http://www.ncbi.nlm....pubmed/10819299) 

 

Thnks longlife I also read that it is quickly brokendown orally but the thing is that in the trial the patient was given oral Dnase1.How could it have worked ?

[LongLife]

 

 

Would there be any side effects of taking Deoxyribosenuclease 1 Orally ? The usual route is thru nebulization

MAIN ALI ISMAIL;

It is "Deoxyribonuclease 1" 

 

Here are a few sites of interest. It appears that there is no oral delivery system presently due to gastrointestinal degregation of DNase 1.

 

http://www.worthingt...se/default.html

 

DNase I (Deoxyribonuclease 1) induced DNA degradation is inhibited by neomycin. (http://www.ncbi.nlm....pubmed/10819299) 

 

Thnks longlife I also read that it is quickly brokendown orally but the thing is that in the trial the patient was given oral Dnase1.How could it have worked ?

 

MAIN ALI ISMAIL;

I will re read that again, good point though. It looks like it is time to call these guys and ask. I will look into it and get back to you.

[resveratrol_guy]

All, please move the discussion of deoxyribonuclease 1 to this thread which Ali set up for the purpose.

[LongLife]

From the above article:

 

"A promising drug for neurodegenerative diseases is a chemotherapy used for leukemias called Nilotinib. Pre-clinical studies in mouse models of Parkinson’s disease demonstrated that this drug induces the degradation of alpha-synuclein, the main component of protein aggregates, by the lysosomes."

 

 

I found the following from a 2012 article titled, Isorhynchophylline, a natural alkaloid, promotes the degradation of alpha-synuclein in neuronal cells via inducing autophagy. 

 

"Isorhynchophylline (IsoRhy) is a major tetracyclic oxindole alkaloid isolated from the Chinese herbal medicine Uncaria rhynchophylla (Gouteng in Chinese), which has been used for the treatment of neurological diseases in East Asia for centuries."

 

 

So apparently Nilotinib and Uncaria Rhnchophylia do the exact the same thing.

 

 

I gave my mother Uncaria Rhynchophylia (better known as Gouteng or Gou Teng) for about six weeks a couple years ago with no results. Now I wonder if I stopped the treatment too soon or simply didn't give her a large enough dose. I still have some left over and I might start giving it to her again. By the way, it's inexpensive -- unlike Nolitinib.

45rpm:

Thanks for the data point. Would you send me a link, if possible, to that article please. Thanks.

 

Some questions:

Your mother has Parkinson?

Or something else?

How long?

Is she taking anything else? 

She lives in the USA?

Where did you get the Gou Teng from?

 

You are aware that plant derived substances are subject to 1,000 or more variables from soil and weather conditions to the length of time after harvesting to "is it gou teng". Right? So there ya go, you really may not know what it is your mother was drinking, unless you know that you know.

 

Without digging, I imagine this gou teng is similar to cat's claw from Peru. We have "cat's claw" here, indigenous to the area. It is NOT Uncaria rhynchophylla but Uncaria tormentosa and it is not something you would plant and harvest in a year or two, nor ten or fifteen years. All the indigenous town in the often traveled areas (where it once grew) here no longer have real Cat's Claw. It was all harvested years ago (1990's) when the first real studies found how well it knocked out tumors. It would be nice to have a spectrometer here to find out what they are selling and to test for any that comes available.

 

I am not so certain that the mode of action is identical. The gou teng may affect a-Synuclein alright but how? What else does gou teng do and how. That is probably already known somewhere and it is important to find that out. Nilotinib was designed after its sister before it and was formulate to be more potent, faster acting and specific to luekemia.

 

"When you have leukemia, the bone marrow starts to make a lot of abnormal white blood cells, called leukemia cells. ... Leukemia cells can also spread to the lymph nodes or other organs and cause swelling or pain."

 

Well then, that tells me that like beta-Amyloid (twisted sister) protein formed in the marrow, certain other unknown, yet to be "discovered" goodies might be hanging out or being produced there too. Remember that every article says basically "we don't know what it is, what causes it, only got some theories". Folding/unfolding of protein takes place in 100th of a second or less. It is very fast when these blood cells are formed and they don't hang around thinking things over. The a-Synuclein is also a regular in the body. What makes it mess up is the question, as well as what other stuff gets messed up along the way too. Therefore, Nilotinib just so happens to attack the leukemia as well as other cells, other protein's, which are also messed up like b-Amyloid for instance and Tau. Hummm... So does Nilotinib also get rid of certain inflammation factors too? Or other factors that contribute to "getting better"? It becomes very complicated and one answer may easily lead to two questions or more.

 

Alzheimer's, Parkinson, Multiple Symptom Atrophy, on and on, these destroy myelim nerve coating, complex oils and fats as well as proteins are dissolved and carried away, tough proteins are formed. A myriad of reactions take place and advance indiscriminately into specific areas.  MAYBE gou teng acts on some of these and provides some relief. There is no cure yet for any of the nuerodegenerative disorders. But these disorders are increasing in numbers, in percentile, like a bad dream and that means there is something(s) in the environment that are setting off the first domino effect. Air, water, food, what else? What else do we all have in common that could be the cause of the large number of neurodegenerative disorders? Hummm? It will take a lot more than one type of pill to resolve this.

[LongLife]

GENERAL POST:

Please, someone who has tried N, is it super bitter?

What does it taste like?. 

Can this be taken under the tongue without burning?

Thanks.

[45rpm]

LongLife:

 

Here's the answers to your questions. Yes, my mother has Parkinson's Disease. She was diagnosed in July 2013 and quickly went downhill right after she started taking Levodopa-Carbidopa. A few weeks ago I read something that suggested the two drugs help the symptoms of PD but also might accelerate the progression of the disease. I firmly believe that's what happened to my mother. (In fact, I won't get into it here but I understand how she got the disease and how it could have been avoided.)

 

As for Gou Teng, I studied the supplement quite a bit before giving it to my mother. Although many sources state that Gou Teng and Cat's Claw are the same thing, they definitely are not. Since Gou Teng is commonly used to treat neurological conditions throughout China, I bought the supplement from a Chinese manufacturer, who presumably used raw materials grown in that country. And here's where things get interesting. In China, Gou Teng can mean just the one supplement or it can also mean a neurological concoction that contains several different ingredients including Gou Teng, When Chinese researchers claim that Gou Teng dramatically improves Parkinson's Disease, they are usually referring to the multi-ingredient concoction. The article that I referenced looked at the single ingredient.

 

After I stopped giving my mother Gou Teng (the single substance), I tried to find a source for the multi-ingredient version. To my disappointment, I was unable to find an online source. Then it took me a few weeks to find the actual "recipe" to make the concoction myself. I wasn't happy when I eventually found two different recipes. I went to the nearest traditional Chinese medicine doctor here in the Midwest with the recipe in hand. Since the concoction is common in China, I didn't understand why he claimed that he had never heard of it. He combined the various ingredients into four paper bags, and each one was enough to make tea for one week, I noticed that there wasn't a lot of Gou Teng (the single substance) in the bags. It cost me about $120 for the four bags. My mother showed no improvement after drinking the tea for a month. (Lastly, I haven't checked lately, but there's a possibility that someone might be selling the multi-ingredient version online.)

 

As for what I have given my mother in the past and what I'm giving her now, I have tried more than 30 treatments, some of them quite obscure. Right now, I'm not giving her anything out of the ordinary and I'm waiting for her delivery of "N."

 

And here's a link to the Gou Teng (the single substance) article:

 

http://www.ncbi.nlm....pubmed/22113202

 

 

Edited by 45rpm, 11 June 2016 - 05:22 AM.

[DonB]

I'm not sure what you mean by a rapid decline, but most "Parkinson's" patients with a truly rapid decline get re-diagnosed with a Parkinsonian illness like PSP, MSA, CBD or Dementia with Lewey Bodies. I hope you are maintaining contact with at least one good neurologist.

[Mian Ali Ismail]

Yes longlife my father was also first diagnosed with Parkinsons and later MSA after 2 years because he was progressing a lot faster. !

[Sandtoia]

Logic, do you have plans for a third group buy yet? And has anyone with, or caring for someone with LBD, had any success with their trial yet? My mom is about three years in, and been holding steady, but a recent hospital stay has sent her absolutely plummeting, so I'm eager to get started.

[Park2009]

GENERAL POST:

Please, someone who has tried N, is it super bitter?

What does it taste like?. 

Can this be taken under the tongue without burning?

Thanks.

Today I cut open my 150 mg Novartis  Nilotinib (Tasigna) capsule.

It  is white powder , totally tasteless. 

It is not giving any burning sensation under the tongue.

I do not have any idea if it can be taken sublingual .

 

But I do remember in this thread , some one posted a link which indicates >>  some study group  gave it with apple sauce / yoghurt to those who could not swallow capsule and found it   working with same or some what better results.