691 replies to this topic

[Linda Gray]

Has anyone with MSA had any success with Nilotinib or any other drug/treatment?

[Mian Ali Ismail]

My father has Multiple System Atrophy(MSA) Logic.

 

How can We get intranasal beta NGF Reservetol guy

 

 

[Park2009]

Dear All 

Today I took count, by now I have consumed 73 Capsules of "N" x 150 mg. I have taken them at 2 PM each day .

It was only in the beginning first week , when I tried taking it at the bed time and ran into Low BP / Difficulty in breathing.

Thereafter it is always in the afternoon, 

 

I have following observations : 

My energy level has improved , I painted all the doors in my house with roller and flat paint brush. ! Cleaned the carpet in two rooms , within 1 week !

 

Suggestions from Logic/Long life / aaCharley were  incorporated , Constipation related issues have taken a  backseat , I am much better person.

 

Tremors are less but not gone. Energy level is definitely up. But I am not able to cutback on Levodopa / Carbidopa. It remains same. I need them every 3 hours.

 

Since I am fairly stable at a new level, I will try to shift  'N' to bed time. 

I am not taking any antidepressants ever since parkinson's struck me  i.e year 2009.  I am regularly taking Cyclobenzaprine 10 mg at bed time with Levocarb CR 250/50 mg at bed time. I started taking it since 2013. Cyclobenzaprine is an excellent muscle relaxant  tremor reducer as well as sleep aid for me  , from now onwards I will try to stop taking it and have "N" instead at bedtime.

 

Longlife > I have Glycine in the the future plan , in case I miss my sleep , after knocking off Cyclobenzaprine.

Melatonin never worked on me. 5 HTP also did not help. Each time I took them , I ran into low BP and very uneasy feeling in the night. 

 

I counted I have 90 more capsules of 150 mg "N" Hence I am good for another 3 months.

 

Best wishes to all fellow parkinson's warrior. 

 

 

 

 

 

 

 

 

[Logic]

Has anyone with MSA had any success with Nilotinib or any other drug/treatment?

 

Hi Linda

Good to see you're still around.

 

MSA is mentioned:

https://www.georgeto...sons-study.html

http://hmg.oxfordjou...hmg.ddt192.full

 

I think it's worth a try.

 

 

Everyone:

 

The drug was detectable in the cerebrospinal fluid of the participants, showing that it was making it through the blood-brain barrier and into the brain. The team also monitored the tau, amyloid beta, and alpha-synuclein proteins that accumulate as part of Parkinson’s disease, and found that the levels of these proteins either stabilised or fell in all participants. At the same time, dopamine levels increased. Those taking the highest dose [300 mg per day] of the drug showed the biggest changes.

 

Pagan presented the results at the Neuroscience 2015 meeting in Chicago on Saturday. By one measure, participants’ cognition improved by an average of around five points, on a scale of 30. While nilotinib causes unpleasant side effects in people who take high doses of it for leukaemia, much lower doses were used in this trial and the team saw no unwanted effects.

https://www.newscien...ing-drug-trial/

[Logic]

...

Suggestions from Logic/Long life / aaCharley were  incorporated , Constipation related issues have taken a  backseat , I am much better person.

...

 

Can you be more specific plz Park2009.  (Not to be confused with Park2011)

 

Thx for the report .

[Park2009]

Logic : I will be always tempted to write in detail, my experiences / observations on how my system/body is behaving when I have adopted/incorporated suggestions  given by you all. I believe let me have more days of having used Magnesium L Threonate instead of Magnesium oxide as suggested by you. Also how Glycine works with me , in my efforts to have better sleep , could  I knock off , taking Cyclobenzaprine 10 mg each night. A suggestion from Long life ( I am yet to start it).   Cyclobenzaprine gave me tremendous relief in reducing tremors / having good sleep and relief from frequent urge to urination for the last 3 years. I am fully aware that Cyclobenzaprine is nasty stuff, no Doctor will like to prescribe it for a period of more than 1 month use, in case of muscle spasms. Also I replaced Banana in my smoothie to Avocado based on suggestions from aaCharley. Let me give myself a continued use of at least 1 month.  Also as cautioned by Longlife  I should not digress and stay focussed on "N" . So I will send my comments in a personal communication.

 

Regarding "N"  : Here is my most recent personal experience / or you can say  failed attempt to shift 150 mg "N" from 2PM each day to 2300 Hrs ( 11 PM ) my bed time , when I  also take 200 mg Levodopa Controlled release and Cyclobenzaprine. On 18th May I skipped my Tasigna at 2 PM and took it along with Livocarb CR 200 /50 mg at 2300 hrs.  At that time I normally have more tremors than normal , since by that time it is almost 17 hrs  since I woke up and started my day.    Well I could slip into perhaps one of most relaxing sleep ! BUT It was a short 4 hours sleep.  I got up around 3 AM ,it was a call to rush to bathroom and empty my bladder. I realized I was walking with firm steps , long strides! No baby steps!. At that time I was feeling very fresh and perhaps ready to run a marathon. Absolutely no brain fog ! But despite my best efforts I could not sleep , Again I realized I was able to change sides on the bed with absolute ease. But I could not go back to sleep despite my best efforts for next 1 hour. I got up and started reading news and many other articles on my ipad. My focus was sharp and I could read and absorb  the content  as I used to do in pre parkinson days.

Well It continued till 9 AM on 19th May and thereafter I lost the advantage.  My tremors were uncontrollable despite having Dopamine at 9AM than at 12 Noon , So I decided to go back to Tasigna at 2PM and returned back to  Levocarb CR + cyclobenzaprine in the night. Well again I had a good sleep and I am back to same level as in past two months.

 

 Lesson I learnt :  Either start taking "N" in day and also at bedtime,  and than see what happens or else have a proper sleep aid in the night. Somehow I am determined to eliminate Cyclobenzaprine with a safer product , Let us see how GLYCINE works . Again  I wonder how it escaped my attention. Let us hope it helps. I know, If I get good 7 to 8 hours sleep, my parkinson symptoms are much lower in the day.   Since I have limited "N" in Stock  I am try to build it up , before embarking upon 2x150 mg per day regime. Today I will receive Glycine in 750 mg capsules , I will report back how it is going after perhaps after 1 week. Also to add more to confusion I also started taking certain probiotics with strains not taken before !

 

Bye for now !        

 

[LongLife]

PARK2009:

Great to hear your feed back. In your shoes, I would do 75mg N at 2pm & THEN at 11pm (total 150mg). You could move up the dosage to 85mg after seeing how this works for you. I would not move up dosage more than 15mg at a time and keep a journal (day/time=result). 

 

WE ARE ASSUMING normal body weight, okay? Otherwise, act accordingly.

 

DEEP SLEEP.  At bedtime, 3 grams Glycine in water and a small dose of Melatonin (0.5mg or 1mg). People have different "sweet spots" for Melatonin and with Parkinson (PD), there is usually a deficiency, so start small, move up every few days, a little at a time. Glycine is hummy and sweet. If you do not have a situation with too much constipation (you started coconut oil 1 Tbls 3 x day?), I do cocoa powder at night with the Glycine, 1 short Tbls. and/or Green Tea Extract;both are a bit bitter solo. Both have CATECHINs, good brain goodies.  

 

The Omega3 in avocado, sardine, anchovy, flax seed (ground) is very necessary. The ALA Omega3 is 20 times LESS potent than fish DHA/EPA, the ALA form must be converted into the active DHA/EPA. The Omega3 will normalize Triglycerides, as well as LDL "bad" Cholesterol,meaning better heart muscle function as well as liver.

 

I mentioned LECITHIN, +-40% of the brain, +-35% of neurons & +- 30% of cell membrane, not to exceed 7 grams a day in pill form, the granuals are very yummy. Lecithin provides the phospholipids (phosphorous based "good" fats) which are used to make neurotransmitters such as acetylcholine, as well as Choline, Serine, Ethanolamine, Inositol because lecithin include the fatty acids: phosphatidylcholine, phosphatidylethanolamine, phosphatidylinositol, phosphatidylserine, and phosphatidic acid.

 

Phosphatidylcholine (PC) is a major lipid in the protective mucus layer of the gastrointestinal tract. It can mitigate GastroIntestinal (GI) injury by exerting an anti-inflammatory effect. A recent study in BMC Gastroenterology, shows that PC inhibits pro-inflammatory substances and is beneficial for those suffering from ulcerative colitis. Emerging evidence also indicates that PC can protect the stomach and intestinal lining from the damaging effects of non-steroidal anti-inflammatory drugs (NSAID). Lecithin is good for the liver too besides the brain. What ever improves the liver and colon is going to have a positive effect on cognition, ie ProBiotics included. The coconut oil will help because it will minimize the Candida albensis fungus/yeast in ones system, improve the colon and cognition.

 

Oh, here is some data on Catechins:

 

There are many kinds of polyphenols, but catechins are the strongest of them all. Among the several types of catechin that exist, Epigallocatechin gallate (EGCg) is the most powerful antioxidant, and green tea contains much more EGCg than any other kind of tea, such as black tea, or oolong tea.

 

http://www.ncbi.nlm....pubmed/12587987 =  Tea catechins and polyphenols: health effects, metabolism, and antioxidant functions. [2003]

 

https://en.wikipedia.org/wiki/Catechin -  a good read.

Edited by LongLife, 20 May 2016 - 11:37 PM.

[resveratrol_guy]

My father has Multiple System Atrophy(MSA) Logic.

 

How can We get intranasal beta NGF Reservetol guy

 

Sorry guys, it's been a busy week. I don't want to derail the nilotinib thread here, so please refer to this thread which explains it all starting around page 8. You can also see my video about.

[resveratrol_guy]

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.

[knasse]

Tasigna contains the following substances;

Hard capsule content

Lactose monohydrate

Crospovidone

Poloxamer 188

Silica, colloidal anhydrous

Magnesium stearate

Hard capsule shell

Gelatin

Titanium dioxide (E171)

Red iron oxide (E172)

Yellow iron oxide (E172)

Printing ink

Shellac

Black iron oxide (E172)

-----------------

Does anyone know if any of these are important to boost the uptake and/or protect the body?

[LongLife]

Tasigna contains the following substances;

Hard capsule content

Lactose monohydrate

Crospovidone

Poloxamer 188

Silica, colloidal anhydrous

Magnesium stearate

Hard capsule shell

Gelatin

Titanium dioxide (E171)

Red iron oxide (E172)

Yellow iron oxide (E172)

Printing ink

Shellac

Black iron oxide (E172)

-----------------

Does anyone know if any of these are important to boost the uptake and/or protect the body?

KNASSE: Ingredients inside of capsules & within the capsule shell. It sounds strange but putting together capsules/pills for commercial consumption is not a walk in the park. All of the ingredients have to be FDA approved to start with.

The Tagsigna requires some material to make it behave for mechanical filling of capsules. The list you provided, in the order provided is:

milk sugar for better compaction (N is too fluffy for instance);

causes the material to disintegrate, come apart and not stay hard like a small rock in your stomach;

a blood thinner, reduces viscosity of blood for better faster absorption;

can help absorption but generally used as a lubricant in the machinery of pill/capsule filling and stops the mix from caking up like small balls/sticking together;

a very typical mechanical lubricant for keeping some ionically charge substances from sticking or being attracted to the metallic surfaces of the equipment and makes for easier cleanup later.

 

The hard capsule stuff is:

a protein, this is used as the main substance that is the capsule itself;

a white pigment used to color paint and many many other things,like gelatin;

a colorant;

a colorant;

ink, pigment, could be plant based biodegradable, helps the colorants mix, as a base or used to actually print the name and identifying product number onto a capsule or pill;

an organic resin produced by a particular family of bugs and used as a gloss coating, maybe to keep ink from rubbing off, discoloration to oxidation and/or packaging & transporting product;

pigment for coloring.

 

All very typical substances found in pills/capsules. Nothing unusual. It is all involved in delivering the N to usable form, fast and easy plus sanitary in appearance.

[Logic]

Now that things have calmed down a little, I have been doing a bit of looking around for other interesting things with Ali, David etc in mind, so thought I would add to turning this into a general anti neurodegenerative disease thread.

 

A lot of aging is the result of an increase in inflammation, mainly due to AGE etc build up and an aging gut with ever more of  the wrong bacteria in it.

Often the effects are first noticed as neurodegeneration.

 

Metals like iron etc catalyse and thus greatly speed up the the formation of AGEs.

Due to the slow turnover of the ECM the rate of formation of AGE soon outstrips the rate at which they are removed from the body.
The lack of stem cell activity is related, in that the the buildup of extra/intracellular junk blocks the signal to turn into new brain, liver etc cells.

 

Some examples of what happens when we go of the source and these metal are removed:

 

Novel molecular targets of the neuroprotective/neurorescue multimodal iron chelating drug M30 in the mouse brain.

 

The novel multifunctional brain permeable iron, chelator M30...was shown to possess neuroprotective activities in vitro and in vivo, against several insults applicable to various neurodegenerative diseases, such as Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis...

 

chronic administration of M30 resulted in up-regulation of hypoxia-inducible factor (HIF)-1α protein levels in various brain regions (e.g. cortex, striatum, and hippocampus) and spinal cord of adult mice....

 

M30 differentially induced HIF-1α-dependent target genes, including vascular endothelial growth factor (VEGF), erythropoietin (EPO), enolase-1, transferrin receptor (TfR), heme oxygenase-1 (HO-1), inducible nitric oxide synthase (iNOS), and glucose transporter (GLUT)-1. In addition, mRNA expression levels of the growth factors, brain-derived neurotrophic factor (BDNF) and glial cell-derived neurotrophic factor (GDNF) and three antioxidant enzymes (catalase, superoxide dismutase (SOD)-1, and glutathione peroxidase (GPx)) were up-regulated by M30 treatment in a brain-region-dependent manner...

 

M30 induced a differential enhanced phosphorylation of protein kinase C (PKC), mitogen-activated protein kinase (MAPK)/ERK kinase (MEK), protein kinase B (PKB/Akt), and glycogen synthase kinase-3β (GSK-3β). Together, these results suggest that the multifunctional iron chelator M30 can up-regulate a number of neuroprotective-adaptive mechanisms and pro-survival signaling pathways in the brain that might function as important therapeutic targets for the drug in the context of neurodegenerative disease therapy.

http://www.ncbi.nlm....pubmed/21570450

 

More/similar info and Niner:

"Wow, M30 is a very interesting compound...I imagine that intrepid experimenters could get a batch whipped up...without too much trouble..."  

Hmmm...! 

http://www.longecity...ndpost&p=561852

Post-translational modifications are known to influence protein structure and function. Some of these modifications might affect proteins in detrimental ways and lead to their misfolding and accumulation. Reducing sugars play important roles in modifying proteins, forming advanced glycation end-products (AGEs) in a non-enzymatic process named glycation. Several proteins linked to neurodegenerative diseases, such as amyloid beta, tau, prions and transthyretin, were found to be glycated in patients

http://www.ncbi.nlm....pubmed/20186922

 

Protein glycation due to hyperglycemia resulting in misfolding and aggregation, which is known as one of the most important reasons of diabetes complications...MB-92 showed the greatest potential for inhibition of glycation and oxidation products...and to control protein glycation, misfolding and aggregation

http://www.ncbi.nlm....pubmed/26733359

 

Glycation is the reaction of a reducing sugar with proteins and lipids, resulting in myriads of glycation products, protein modifications, cross-linking, and oxidative stress. Glycation reactions are also elevated during metabolic dysfunction such as in Alzheimer's disease (AD) and Down's syndrome. These reactions increase the misfolding of the proteins such as tau and amyloid-β (Aβ), and colocalize with amyloid plaques...AGE colocalized with amyloid plaques. In summary, we demonstrate the glycation of Aβ and plaques by metabolic compounds. Thus, glycation potentially links metabolic dysfunction and Aβ misfolding...

http://www.ncbi.nlm....pubmed/22406446

 

LR-90 a new advanced glycation endproduct inhibitor prevents progression of diabetic nephropathy...and was a more potent metal chelator than pyridoxamine and aminoguanidine.

LR-90 reduces in vivo AGE accumulation, AGE-protein cross-linking and protein oxidation...
The AGE inhibitory and therapeutic effects of LR-90 could be attributed, at least in part, to its ability to react with reactive carbonyl species and/or potent metal chelating activity that inhibits glycoxidative-AGE formation.
http://www.longecity...ndpost&p=765347

 

Ninety Percent Reduction in Cancer Mortality after Chelation Therapy With EDTA

http://www.longecity...rapy-with-edta/

 

Tiron is able to chelate iron inside the mitochondria, and mitochondria are a known issue in ALZ an PD etc.

In this study UV caused the free iron, but iron buildup is associated with PD etc.

http://www.longecity...ed-antioxidant/

Plant-Derived Agents with Anti-Glycation Activity. Some stronger than Aminoguanidine

http://www.longecity...uanidine/page-2

 

If you read all the linked posts; you will find that anti glycation research seems to be actively discouraged...?!

Something I would very much like to do something about!

 

 

 

 

[Linda Gray]

I am very interested in any treatment that would help MSA patients. I don't understand all the medical terms and what they mean. My dad had chelation thearapy for cleaning out his arteries. It worked!
I know there are much fewer cases os MSA than Alzheimer's or parkinson's but patients with MSA progress rapidly. They don't have much time and very limited options. Can you help me understand the implications for MSA?

[Logic]

I am very interested in any treatment that would help MSA patients. I don't understand all the medical terms and what they mean. My dad had chelation thearapy for cleaning out his arteries. It worked!
I know there are much fewer cases os MSA than Alzheimer's or parkinson's but patients with MSA progress rapidly. They don't have much time and very limited options. Can you help me understand the implications for MSA?

 

 

Ali is in the same boat:

We have tried   Nilotinib for  16 days for my father and it seems  to have   reduced  his tremors    but  we  ran   out   of  Nilotinib and  my    fathers  family was  against   using a   cancer drug  though  it had no  side effect.Im planning  on  starting  it again

http://www.longecity...ndpost&p=766377

 

He has a thread here where I have posted:
http://www.longecity...rative-disease/

Alpha-Synuclein is the main culprit IIRC.

Edited by Logic, 22 May 2016 - 09:13 PM.

[Mian Ali Ismail]

I wanted to thank Logic for coordinating and managing the group buy.Now to lets see how Nilotinib is helping patients

 

1))can we characterize them by disease type,like no. of patients,with Parkinsons,Lewy Body Dementia and Alzhimers

 

2) who has had a positive response

 

3)the dosage used

 

 

 

[Jochen]

Keen to join a round 3 of the group buy for my father (lew bodies).

 

I have also received my GTS and will test this out on my dad as well.

More info can be found

• http://www.longecity...2-gts-21dmxb-a/
• http://www.longecity...ic-worth-taking
• http://www.nature.co...df/1300028a.pdf

 

also IL-33 seems like an amazing compound for those neurodegenerative diseases.

• http://www.longecity...nitive-decline/
• http://www.longecity...eimers-disease/

[zawy]

Contact me if anyone backs out. If you take with food, the dose is effectively and seemingly reliably doubled. With a 350 ml grapefruit juice, about 30% more, but that has more variability. So 150 mg/day with food is a good dose, similar to the 300 mg/day tests. Some will probably see good results on 50 mg/day. My estimate of my benefits is that it will take at least 2 weeks on 150 mg/day with food to see results. I have had ups and downs and the ups coincide with the nilotinib and exercise (1 hr/day). Weights and/or aerobic >120 BPM help. I was also low on blood oxygenation (93%) as measured by a $15 pulse-oxymeter and iron supplements helped in as little as a week. Iron seems correlated with PD in most papers, but I also saw a paper where it was even better than exercise and nicotine at preventing PD (I mean highest quintile of iron had 5x less PD). The lack of good oxygen to the brain seems to accelerate the spread of the mal-forming proteins a-Syn in PD and beta-something in AD, which is a prominent idea in cancer spreading (Warburg effect = anaerobic "fementation" instead of utilizing glucose or ketones). In support of the lack of oxygen idea is hyperbaric oxygen treatments, exercise, and CPAP that has helped in PD. It might be that PD is suppressing the breathing response, accelerating the condition.

[Danail Bulgaria]

May sound strange and selfish, however the best will be if you, who take that thing give a feedback about its effectiveness in treating the age related dementia.

 

This will be the most important for the people, who will need it in the future.

[Logic]

The main Group buy page is here people:
http://www.longecity...oup-buy/page-11

Please post there.

[DonB]

I am hoping for third group buy. I'm in for 30 grams.

 

My wife has had MSA for about 7 years, and has lost nearly all functionality. Daily testing for improvements will be possible. For example I can count the number of times per day she is able to answer a yes-no question (currently about 10-20), or the number of spoken words that are clear enough to understand (usually zero).

[Park2011]

Hi Logic,

 

Any updates on the progress of the Nilotinib group buy Round 2?

 

park2011

[Mian Ali Ismail]

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

 

[MarcB]

I want to be in on the 3rd buy for 100 - 200 grams.

 

Does anyone have experience with Mannitol?

 

http://www.scirp.org...=authors&page=1

 

[David Watford]

Hello Logic,

Thanks for all the info on fabrication. I forgot to thank you in my PM.

Can you give us an update on the status of the 2nd group buy please?
Thanks

David

[roydeman]

Curious as to if anyone has started taking it?? Suprised at the lack of posts.

[45rpm]

"Does anyone have experience with Mannitol?"

 

I gave it to my mother for one month with zero results. (I still have about a pound left over and I occasionally use it in my oatmeal.)

Edited by 45rpm, 03 June 2016 - 08:31 AM.

[45rpm]

As a newbie, I am not allowed to post links.

 

There was an interesting article yesterday in the Daily Mail about a stem cell treatment that dramatically helps people who have suffered strokes. According to the article, the same treatment might also help people with traditional neurological conditions. The article is titled "Major breakthrough as doctors REVERSE symptoms of a stroke: Patients to walk, talk and live a normal life after stem cell treatment -- up to 3 YEARS later."

[Jochen]

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

 

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

[MarcB]

"Does anyone have experience with Mannitol?"

 

I gave it to my mother for one month with zero results. (I still have about a pound left over and I occasionally use it in my oatmeal.)

 

Thank you for the reply.  Do you recall the dose she was taking?

[Logic]

Nilotinib group buy, round 2, progress Report:

I have been conspicuous by the absence of Group buy round 2 progress reports due to not wanting to post a 'non progress' report:

 

South Africa does not like money leaving the country and has put all sorts of 'controls; in place to make doing so difficult.
Getting the funds to the supplier/out of SA was a schlep last time and more so this time with the 'officials' at the dept of Trade and Industry telling me I the funds looked like extra income and that I need a tax clearance certificate besides fill in innumerable forms etc-etc.
This is all BS:  What they actually want is as large a bribe as they can squeeze out of one and to share the 'gravy' with their friends, as was evident when I went to the recommended 'person' at SARS about the tax clearance certificate.
It's evident that all the government posts here are now filled with people that got their jobs based on anything but merit and are intent bribing their way through life, using delaying tactics etc.

They have an excellent teacher in the form of 'president' Zuma.

TransferWise has a great business model:

The match up payments with those going the opposite direction using sophisticated software. So "your" money never actually leaves the country — it's rerouted to someone who's being sent a similar amount by someone overseas. Your foreign recipient, meanwhile, receives their funds from someone trying to send money out of their own country.

But SA is not one of the countries where it works for some reason.  Probably related to the government trying to stop people from cashing in their chips and abandoning this sinking ship.
So I organised a similar deal with a very good friend in the UK who has family here.

 

It took a bit of organising due to the large amount required for the payment, but eventually we organised it so that he paid the supplier and I paid over your hard earned cash to his family!  

This was no sooner organised when the supplier told me that they no longer had the required 800 grams of N, having just sold a large amount to their main buyer, but that they are in the process of making a new batch.

 

I was informed this morning that the new batch will be ready on Tuesday.
My apologies for the delay.
The N should be at the testing lab by the end of the week.

 

 

One cannot sent funds from PayPal to Transferwise either:  PayPal does not consider competing companies 'legitimate' accounts to which one can link your paypal account...

I am currently researching PayIt2 and WePay for future buys.

http://www.payit2.com/howitworks

https://go.wepay.com...ce-crowdfunding