691 replies to this topic

[ceridwen]

Never used bitcoin. Maybe too cognitively challenged to start. If we use this can someone help me with it please?

[centralFloridaMan]

i am definitely in for at least 150 grams  ed

[Ark]

Hi, You can certainly count me in for 200 gm minimum, and even for 300 gm. (I think 300 gm is about 5 year's worth at 150mg/day)
Thanks for the Post Ali.
David

Thank you David.
So what will it be? 200 or 300!?

I am also not sure where you, Ark and everyone stand on the testing of this order?

No reply, to my pm to david?

[Logic]

LOGIC; I was ignored on placing my humble opinion the other day. The costs are so high on money transfer and testing; I favor a sample of 500mg be saved from Buy #2. Then from Buy #3, mix 500mg with the same from Buy #2 and have it tested. We would know if one or both were bad, reducing costs. IF this is done, there will still need to be a small cost for each gram bought to set-off the lab testing. It would cut the testing cost in half. 

 

If we can get a Kilo at a time or more, the supplier cost will go down too, correct? We may get this product for a reasonable price once we get a couple of Kg at a time and every-other test it out. If this N works well, I will be needing some quantity. I am sure some other reader will need a lot more too. 

 

As mentioned prior, the costs of transfers need to be reduce too. If we could get the supplier to take Bitcoin, that can be escrow very easily and forgo a great deal of transfer costs with everyone. Opinion finished:-)

 

 

I agree that the more that is ordered the cheaper it gets LongLife, but not by much:
The supplier works a handling fee into their quote and also the shipping to the USA will come down.

 

The problem I see with your idea is that should a mixed batch prove impure; the only way to know which of the 2 batches is the culprit is to test at least one of them a make a deduction from there.
If it happens to be batch #2; a lot of 'researchers' will already have received it and 'dosed their lab animals with it'..!

I think it best to stick with the current 'business model' as we know that the package gets to the testing lab without issue and the lab doesn't seem to be keen on doing the splitting, packaging and posting, if not testing the substance.

 

I think a goal of 500 grams is more realistic time wise.
It also makes all the financial calculations, besides bank transfer costs, a repeat of last time.

The other thing is that as David has already donated to the 1st group buy; I don't want to delay too long.
Lets keep in mind that Nilotinib can not resurrect dead brain cells, so the sooner PD sufferers start taking it the better.

After that the everyone should have Nilotinib and a longer period, allowing for a kg may be attainable. 
 

I will start posting new threads about round 2 and advertising in general once most people have received their Nilotinib from round 1...

Edited by Logic, 19 April 2016 - 08:36 PM.

[Logic]

Progress Report:

 

I received the following Email from the testing lab today:
"By tomorrow [Wed 20th] all the packages will be out. Don't think I'll get it all done

today..."
(Due to the powder's fluffy nature and inclination to become airborne)

USPS advertises "1, 2, or 3 business days" for local delivery:
https://www.usps.com...iority-mail.htm

So those close to Baltimore can expect to receive their parcels on Thursday or Friday and everyone in the USA should have it by Monday.

International researchers:

"6-10 Business Days"

https://www.usps.com...nal/welcome.htm

I will send everyone their tracking #s as soon as I get them.

Edited by Logic, 19 April 2016 - 08:59 PM.

[centralFloridaMan]

I guess i missed the march 16 group buy for nilotinib but put me down for one years supply for the next group buy

[Logjam]

How does this relate (if at all) to methylene blue/Rember in various protein folding disorders?

 

Is anyone planning to feed this to a mouse with MB?  From what I understand, MB prevents the misfolding into the more toxic aggregates, or shunts them to be less toxic aggregates.  I believe some other drugs like doxycycline also do this and are used in other amyloidoses.  

 

This one looks like it actually clears the aggregates.

 

Also, has anyone seen any research on chaperones in preventing the misfolding to begin with?  These disorders all look like they start with UPR and bad disposal of the aggregates that are misfolded during that time.  Think TUDCA and PBA.

 

TUDCA is orally available, can be found on Amazon.com, and probably improves endothelial health anyway.

Edited by Logjam, 19 April 2016 - 09:27 PM.

[Logic]

Group buy round 2:
 

I have just cone back through the posts here to see who is interested in group buy # 2 and was surprised!
I didn't expect this much interest until everyone from from round 1 had received their order and while I read the posts they obviously didn't register!

(I was mugged  2 weeks ago Friday and had a concussion.

I thought the psychological after effects was the worst part, but it seems I was mistaken!?

 

I'm 'back on it' again now!)

 

The following people have committed to a 2nd group buy of Nilotinib,

using the same procedure as before:

NAME:                AMOUNT (grams):
David Watford     300 grams
Ark                      10
Edgar Tuttle        150
Logjam                25-50
Total:                  485 - 510

That is already above the 500 gram limit I set. if you take 40 grams Logjam?

I will start PMing or Emailing you my PayPal Email and collecting funds.

Price including bank transfer fees to pay the supplier:
$ 4 905.00 for 500 grams + $ 100 for transfer = $ 5 005.00 for 500 grams.

That's $ 10.01 per gram.

The following people showed interest in the 2nd group buy of Nilotinib:

(Or PMd about the 1st)

NAME:                AMOUNT (grams):
Ali Ismail ?          
deetown              20
izan82                 10
aaCharley
Sleepdealer
plumper76           100

Deetown              20

yogi

 

I will PM these people.

If anyone else is interested; please post.


 

[Logjam]

Figure me in for only 25.  I'm almost sure you'll make it at the rate we're going in this thread.  I may decrease to 15-20 if you overshoot, but I'll stick to 25 if it's close.  The dosage needed is very low according to the studies I've digested so far.

 

I'm pretty sure we'll get there.  Testing is a must.  I really do like one of these mice :>

Edited by Logjam, 19 April 2016 - 10:54 PM.

[cjlmom]

Hi All I would be interested in hearing how your nilotinib experiences are going... and would also be interested in the next group buy.

Thanks,

[deetown]

I'm in for 20

[tunt01]

I'm interested in 20g.

Sent from my SM-T710 using Tapatalk

[mlsirkis]

If possible I would like to join the next purchase for 50gm.
Thanks
Michael

[Izan]

indeed, put me down for 10 grams please logic. thanks

[Linda Gray]

I am very interested in buying in the 2nd group buy. What is the cost per gram? How many grams needed for 3 mths supply?

[resveratrol_guy]

How does this relate (if at all) to methylene blue/Rember in various protein folding disorders?

 

Is anyone planning to feed this to a mouse with MB?  From what I understand, MB prevents the misfolding into the more toxic aggregates, or shunts them to be less toxic aggregates.  I believe some other drugs like doxycycline also do this and are used in other amyloidoses.  

 

This one looks like it actually clears the aggregates.

 

Also, has anyone seen any research on chaperones in preventing the misfolding to begin with?  These disorders all look like they start with UPR and bad disposal of the aggregates that are misfolded during that time.  Think TUDCA and PBA.

 

TUDCA is orally available, can be found on Amazon.com, and probably improves endothelial health anyway.

 

These are good questions. They should probably be posted to the "Latest Alzheimer's Research" thread. It would also help to avoid acronyms on your first use of a term, especially if no one else is using them.

 

But to answer your question, this is the only successful demonstration of misfolding prevention I've seen, and it's only for amyloid, so its clinical utility is probably zero. But the same impressive technique might work for nastier molecules.

 

I think you're saying that methylene blue actually clears aggregates. Evidence?
 

[Logjam]

I'll avoid acronyms in the future.  For anyone who is reading, MB = methylene blue, and Rember is a basically methylene blue.

 

I didn't mean to say methylene blue clears amyloid, but it apparently does divert some of the misfolding to be less toxic in the case of amylin aggregates in pancreatic amyloids as well as in Abeta.  There are very interesting parallels.

 

http://www.ncbi.nlm....pubmed/17595112

 

The data show that Abeta oligomer formation is inhibited by promoting fibril formation, which suggests that the relative pathological significance of oligomers and fibrils may be tested in vivo using methylene blue. If Abeta oligomers represent the primary pathogenic species, then inhibition of this highly toxic species via promotion of formation of less toxic aggregates may be therapeutically useful.

 

http://www.jbc.org/c...6/41/36086.full

 

The specific oligomer inhibitor methylene blue (51) blocked amylin oligomerization and amylin-induced cell death, suggesting a causal link between amylin oligomerization and toxicity in cells (Fig. 2, B and C). T

 

http://digitalcommon...t=dissertations

 

In several transgenic mouse and rat models expression of human amylin has been found to correlate with β-cell apoptosis and diabetes-like symptoms [12], although considerable controversy remains on whether the fibrils themselves or smaller aggregates of amylin constitute the toxic [aggregate (inserted by Logjam)] species [13- 16]. 

 

So my theory is that esp. in the case that there is a relatively static body of cells (as is the case with brain tissue and beta cells – both of which are pretty resistant to therapies to induce proliferation) that these toxic amyloids are particularly bad because there's no mechanism to compensate while the amyloid is functionally useless and a waste of space at best, and possibly destructive on top of that.  The studies that indicate there is a more toxic or less toxic form in at least 2 amyloid disorders add credibility to the toxic hypothesis, but I'd assert both examples are low turnover and rarely expand.

 

Some conjecture, but it makes sense to me.

 

 

How does this relate (if at all) to methylene blue/Rember in various protein folding disorders?

 

Is anyone planning to feed this to a mouse with MB?  From what I understand, MB prevents the misfolding into the more toxic aggregates, or shunts them to be less toxic aggregates.  I believe some other drugs like doxycycline also do this and are used in other amyloidoses.  

 

This one looks like it actually clears the aggregates.

 

Also, has anyone seen any research on chaperones in preventing the misfolding to begin with?  These disorders all look like they start with UPR and bad disposal of the aggregates that are misfolded during that time.  Think TUDCA and PBA.

 

TUDCA is orally available, can be found on Amazon.com, and probably improves endothelial health anyway.

 

These are good questions. They should probably be posted to the "Latest Alzheimer's Research" thread. It would also help to avoid acronyms on your first use of a term, especially if no one else is using them.

 

But to answer your question, this is the only successful demonstration of misfolding prevention I've seen, and it's only for amyloid, so its clinical utility is probably zero. But the same impressive technique might work for nastier molecules.

 

I think you're saying that methylene blue actually clears aggregates. Evidence?
 

 

 

Edited by Logjam, 20 April 2016 - 11:18 PM.

[David Watford]

I’ve been musing. The protocols for a blog like this and the ideas of a group buy are new to me, so I ask for your forbearance if I am implying too much.

I know that when this body is compromised by PD (and that is a fair proportion of the time) I’m inclined to think the world is all about me and my state. I am in a reflective state today, so I am taking advantage of it.

 It seems to me that this group buy is going to get bigger each time, if the Nilotinib works as well as the trial indicated. If it really works, it may get completely out of hand, and it may compromise those who have been so helpful so far. I am truly indebted to Logic for his work and very grateful to the Lab for doing their bit (they have asked to stay below the radar and it seems to me that they have gone beyond their usual service). So in an attempt to consider the welfare of Logic, the lab as well as those of us who have (or whose dearest have) PD:

 

Firstly, I think it is a great gift to have the opportunity to obtain this stuff at one ten thousandth of the cost (approx.) of paying for the drug via the conventional channels.

 

I am in favour of testing. I feel that the lab is doing a service in helping with the distribution, and I would not like to nickel and dime them. In fact, I’d be in favour of doing something for them. (This could be money, but I am more in favour of (occasionally) funding a night out at his favourite restaurant or something like that.

 

The same goes for Logic. I think he has been so open and straight as well as persistent and diligent, we are fortunate in having him at the helm.

I would support the Idea of him being recompensed for his efforts in some manner

 

I also think we could make an honest man out of Logic by making a small contribution (material and/or some money) to the research at Majormouse and/or DRACO.

 

I hope I haven't overstepped the mark here with these opinions.

 

David

 

[Logic]

Figure me in for only 25.  I'm almost sure you'll make it at the rate we're going in this thread.  I may decrease to 15-20 if you overshoot, but I'll stick to 25 if it's close.  The dosage needed is very low according to the studies I've digested so far.

 

I'm pretty sure we'll get there.  Testing is a must.  I really do like one of these mice :>

 

Overshoot..!?    There is no such thing Logjam!
'Overshooting' 500 grams means that there may be a couple of $$ left over after all is said and done and if I'm lucky!  
Such funds would be most welcome and will help to keep me connected to the Net and motivated to do this etc-etc.

The dosage used in the parkinson's trial was either 150 mg or 300 mg per day.
I have not found any info on why those 2 doses were chosen and whether 300 mg is more effective than 150 mg..?

The side effects seem to crop up at around 400 to 600 mg per day, but Nilotinib is NOT Vitamin B so I would err on the lower side of 150 mg.

If you have more data on dosage etc for PD please do post it, with links!

 

I will put you down for 25 grams.

Edited by Logic, 21 April 2016 - 03:16 PM.

[Logic]

If possible I would like to join the next purchase for 50gm.
Thanks
Michael

 

Certainly Michael
Welcome to Longecity!  

I have seen your PM and will reply via Email.

[Logic]

Group buy round 2:

My apologies for the delays in answering everyone and posting here:
It's been raining pretty hard, on and off, here for around 3 days and my internet connection becomes infuriatingly 'spotty' when this happens.

The rain, unseasonal or no, is most welcome due to the drought here, but I do wish whatever it is that gets wet here would be fixed!
There is nothing that makes me 'see red' like a long post or PM 'disappearing' when 90% done!

(Gmail and Google drive docs etc save every keystroke...)

 

The following people have committed to a 2nd group buy of Nilotinib,
using the same procedure as before:

NAME:                    AMOUNT (grams):
David Watford         300
Ark                          10
Edgar Tuttle            150
Logjam                    25

centralFloridaMan   150

deetown                  20

prophets                  20

mlsirkis                    50

izan82                     10

Linda Gray              ??
Total:                      735 + grams

 

The following people showed interest, but missed, the 1st group buy of Nilotinib:
(Or PMd, or posted in the 'advertising' threads.  (To be be contacted))
 

NAME:                AMOUNT (grams):
Ali Ismail ?         
aaCharley
Sleepdealer
plumper76           100
yogi

glowso

cjlmom

betaeyes

 

Contacting me and reqd info:

Anyone interested in the group buy is welcome to contact me via PM.
The info I require to complete my spreadsheet is:

• Your real name and mailing address. (a contact # for the mailing may help too; if you are not at home at the time of delivery etc)
• Your Email address. (This makes it easier for me to contact you as my PMs are still limited)

I will then Email you with the full amount required for the Nilotinib,including:

• Postage via USPS (with tracking #) to your door.
• The small paypal fee for personal payments.

The reason for using the personal payment options is that:

• It's a lot cheaper.  1% + $ 0.30 instead of 3.5-4.5%
• There is no chance of PayPal holding the funds for 21 days as happened with LongLife's payment.
• Another reason... best not discussed here.

Pricing: (to include bank transfer fees to the supplier)

The bank transfer fees for the last order, to the testing lab in the USA, came to $ 222.39! (including greasing a palm with R 100 ZAR!)

I can't find any way of being certain what the transfer fees will be on this round as the buy has grown past 735 grams!

My best guess:
$ 222.39 for 655 grams =  $ 0.34 per gram for bank transfer fees.
Added to the tested Nilotinib price of $ 9.81 per gram, delivered to the testing lab in the USA, gives us a total of:

 

$ 10.15 per gram.

 

 

The variable cost of postage and Paypal fees will be added individually.
USPS domestic is $ 6.80
PayPal Personal Payment fee for US citizens to me is 1% + $ 0.30

I hope everyone is happy with the new price and will reply individually to everyone who has contacted me as time (and the bloody weather!) allows.

 

I would like to thank LongLife who has assisted me throughout these buys with group PMs and advice etc.  

Thx! LongLife.

[Logic]

Round 1 Progress report:
 

I have Emailed most people their USPS tracking #s.
Your parcels will arrive on Monday according to the USPS receipt.

noot_in_the_sky

ceridwen

Two of you have received address queries you need to reply to plz.

ADD-PI-Infection
Your parcel, to Canada, requires a customs form..!
I have Emailed you regarding this.

Plz note the obligatory disclaimer and DO read the links in the Email.  

Nilotinib is a powerful medication and not to be trifled with!

[Logic]

I’ve been musing. The protocols for a blog like this and the ideas of a group buy are new to me, so I ask for your forbearance if I am implying too much.
I know that when this body is compromised by PD (and that is a fair proportion of the time) I’m inclined to think the world is all about me and my state. I am in a reflective state today, so I am taking advantage of it.
It seems to me that this group buy is going to get bigger each time, if the Nilotinib works as well as the trial indicated. If it really works, it may get completely out of hand, and it may compromise those who have been so helpful so far. I am truly indebted to Logic for his work and very grateful to the Lab for doing their bit (they have asked to stay below the radar and it seems to me that they have gone beyond their usual service). So in an attempt to consider the welfare of Logic, the lab as well as those of us who have (or whose dearest have) PD:

Firstly, I think it is a great gift to have the opportunity to obtain this stuff at one ten thousandth of the cost (approx.) of paying for the drug via the conventional channels.

I am in favour of testing. I feel that the lab is doing a service in helping with the distribution, and I would not like to nickel and dime them. In fact, I’d be in favour of doing something for them. (This could be money, but I am more in favour of (occasionally) funding a night out at his favourite restaurant or something like that.

The same goes for Logic. I think he has been so open and straight as well as persistent and diligent, we are fortunate in having him at the helm.
I would support the Idea of him being recompensed for his efforts in some manner

I also think we could make an honest man out of Logic by making a small contribution (material and/or some money) to the research at Majormouse and/or DRACO.

I hope I haven't overstepped the mark here with these opinions.

David

 

• ...it may compromise those who have been so helpful so far...

I too worry that this may grow to the point where Novartis takes notice and tries to shut us down..!
Let's keep in mind, everyone, that this medication is being purchased by you for experimental, research purposes..!
You do have a pet rat or other pet..!?  

 

• ...I think it is a great gift to have the opportunity to obtain this stuff at one ten thousandth of the cost...

I couldn't agree more and have to... 'wonder' at the insane, exorbitant markup put on meds, even with the costs of R&D and the huge, and arguably unnecessary, cost of FDA approval.

 

• ...I am in favour of testing...

After some consideration I have decided to keep 3rd party testing for all rounds of the buy, for exactly these reasons, as well as to:

• Avoid the confusion and 'crying over spilt milk' scenarios that could result from some of the other suggestions made here.
• It alsokeeps the supplier 'honest'.  I am at the point where I am beginning to trust them, but this is like signing a business contract with a friend, as a means to remain friends...  

 

• ...I would support the Idea of him being recompensed for his efforts in some manner...

Thank you David.    I am touched by your words.

As everyone's financial situation is different and some PD 'researchers' may be in a desperate situation and barely able to afford this price; I am happy to leave this at the discretion of each individual.
ie:  Any donation/overpayment to me is most welcome!

I leave it up to you/everyone to decide if they would like to compensate me for my efforts.

At the top of my shopping list would be a large Rottweiler, (having been mugged 3 feet from my front gate!) and becoming a full member of this forum. 

 

• ...we could make an honest man out of Logic by making a small contribution (material and/or some money) to the research at Majormouse...

I had to 'stretch the truth' with the supplier and testing lab to get this buy going...

 

I would very much like to donate some Nilotinib to the Major Mouse Testing Project due to its many interesting and possibly life extending properties.
The anti dementia properties have been discussed here, but not the anti fibrosis effects on the liver, kidney and whole body in general.

http://www.longecity...e-with-enzymes/

 

I have discussed this, in passing with Steve H, of the MMTP and he seemed interested.

http://www.longecity.../37759-steve-h/

http://majormouse.org/

 

I have just invited him to this thread, hopefully he will post.

 

 

• ...I hope I haven't overstepped the mark here with these opinions...

Not at all David.
Thank you for your kind words and the good points you have made.

Edited by Logic, 22 April 2016 - 03:01 PM.

[Steve H]

Hi Logic,

 

It isn't a compound that is on our radar currently as we are testing Senolytics and our next step is Senolytics combined with Stem cells but if the community wanted us to arrange a small study with mice and can help with the costs we could certainly get it done cheaply.

I have been a bit quiet lately as we are planning to launch our campaign on lifespan.io on Monday 25th April if all goes to plan but yes we are open to exploring all kinds of geroprotectors given sufficient funding, we certainly have the research experience to do it justice.

[Logic]

I guess i missed the march 16 group buy for nilotinib but put me down for one years supply for the next group buy

 

Done!  

Group buy round 2 is well on its way and I will begin contacting everyone, including you, with their individual prices.

These depend on the individual's location for postage from the testing lab, as well as for the small PayPal personal payment fee.

If anyone is interested; plz post in the main group buy thread:
http://www.longecity...roup-buy/page-7

[gedanken]

I'm interested in 10 grams next go round please.

Edited by gedanken, 23 April 2016 - 05:20 PM.

[Park2009]

I have been following Nilotinib group buyers effort for quite some time. I believe soon some of you will start taking it with the hope it gives us some relief / extra margin , so that we all can improve and better deal with  our every day  challenges.

Currently I am going to be 63 years old and first signs of parkinson's were noticed in Aug / sept 2009.

 

It looks I have reached a saturation point. Currently I need 2 tablets of 100mg/25mg Levodopa /Carbidopa every 3 hours , starting from 6 Am in the morning , till 9 pm . Their after I go to sleep with 200 mg / 50mg of controlled release Levodopa / Carbidopa at around 11 PM.

 

I realised that a Indian herbal drug was a good substitute for LD/CD hence I replaced my 9 AM and 6 PM dosage with Indian Herbal drug known as Zandopa. This was started since 2011 and is continued ever since. It give better control over tremors.

 

In year 2012 end I discovered that muscle relaxant APO Cyclobenaprine  HCL 10 mg with LD/CD ( controlled release) in the night gives me excellent relief from tremors, better sleep and better bladder control.  Ever since I am taking it on regular basis, with the consent of my neurologist.  But it looks I am slowly loosing the benefit and need to  have something more or some change. Hence I have tried Tasigna 150 mg / day for last 50 days.

 

I will share my experience so far in my next post.

 

Good night 

 

 

 

 

[LongLife]

PARK2009: Welcome to LongeCity, I think you will find some informative material here to be of help. The neurologist is treating your symptoms and keeping you on medication while the cause of your Parkinson remains unsolved, unattended.

Have you changed your lifestyle dramatically since mid 2009 as a result of your condition?

Have you dramatically changed your diet since 2009? 

Have you been reading the links on this thread concerning Nilotinib?

If you could answer these questions then possibly some members could give you some suggestions. 

[roydeman]

Hi Park2009. I look forward to reading about your nilotinib experience as I'm sure many others are as well. So when you get a chance, please fill us in!

[resveratrol_guy]

Indeed. Park2009, I take it from your use of the present tense that it hasn't helped you much, but perhaps I'm reading too much into your grammatical usage. I guess, as always, results depend on genes, dose, and severity of disease. Please provide as much detail as possible. Thanks for sharing.

Edited by resveratrol_guy, 24 April 2016 - 08:05 PM.