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Alpha Lipoic Acid & Low Dose Naltrexone

renw's picture
renw
Posts: 284
Joined: Jan 2013

Another day, another adjuvant treatment to add to the battle with my little mutants.
Today I started Alpha Lipoic Acid IV, in combination with low dose Naltrexone.
There is no definitive phase 3 trial to prove the benefits of this treatment, but there is enough research and anecdotal evidence for me to justify having a go.

More info on my blog: http://www.mcrc4.com/?p=177

Anyone else have experience with ALA or Naltrexone?

wolfen's picture
wolfen
Posts: 1129
Joined: Apr 2009

Ren,

Hubby has been taking ALA for a couple of years now. I actually heard about it's use on this forum as possibly helping neuropathy. At the time, he hadn't been diagnosed with cancer, but has had severe diabetic neuropathy for many years. It works well for him for that purpose. Unfortunately, it did not deter cancer from attacking his H&N and lungs, but maybe those cancers are not among the ones it is said to affect.

Best of luck with these new things.

Luv,

Wolfen

ron50's picture
ron50
Posts: 1240
Joined: Nov 2001

I spoke to my nephrologist this morning about ldn. He was pretty upmarket about it though he said that there needs to be more clinical data about it before it becomes mainstream. I have read and heard first hand accounts of it on the chrons and ulcerative colitis forums. It is used quite regularly there particularly by parents of young children that they don't want taking powerful immuno-suppressants. The problem for us is that it is an opiate antagonist used for heroin withdrawel and the standard dose is 50mg. Ldn is usually prescribed at 2-4.5mg so you need to find a compounding chemist to make the drug. I am going to see if my rheumatologist will prescribe it for me and see if it can put my immune system back in order. Good luck with it ..Ron.

manwithnoname
Posts: 381
Joined: Jun 2012

take a standard 50mg pill and 'dilute' it into 4mg dose, if you can't find a compounding chemist, although there is a great guy in the US who does it and makes no profit on it.

luvinlife2
Posts: 172
Joined: Jul 2012

Currently on a program that includes ALA iv's.  Never heard of naltrexone...another thing to ask my nat onc about.  I like your blog ren Smile

renw's picture
renw
Posts: 284
Joined: Jan 2013

There was a study I came across that combined ALA and Naltrexone. I will try and find it and put it up on my blog. That was the main reason for the combination. The standard dose is 50mg yes, had a compounding chemist make up 2.5 and 4.5mg doses. Cost was about $56 AUD for 50 pills so not too bad.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i have been on ala  for years,

ldn since august last year. chances are most of the stuff your looking at should come up here

http://csn.cancer.org/node/245230

i got not one reply, thats life, great research ren.

you actually can do a genetic test to see if you benefit, apparently most do.

this is for those with and without cancer. doc N is on it,

hugs,

Pete

tanstaafl's picture
tanstaafl
Posts: 915
Joined: Oct 2010

Would be interested to hear your time by time details on IV experience with lipoic acid, and mfg source used.  

Our alternative doc says that IV lipoic has administration variation with patients, as well as variation from sources. He's big on it but no IV LA experience here, yet.   Wife has used 900-1500 mg rac (R,S) lipoic acid orally since early on, almost 3 years ago.  Didn't take to LDN, said it upset stomach.   Others use LDN solutions in the 3.5-4.2 mg/ day range to avoid over 4.5 mg in DIY.

renw's picture
renw
Posts: 284
Joined: Jan 2013

I have put a little info on my blog, but I have not been doing a day by day on the IV as I have it 3 times a week. In nutshell, I feel much better after each IV. I have constant nausea from the xtensive liver mets, but on days that I have vit c and ala I am nausea free for most of the day. Even zofran did not help my nausea, so this is a bonus. I haven't noticed any other side effects, but I do have a mild fever every evening. This I am hoping is due to tumour necrosis.

flyguide
Posts: 27
Joined: Nov 2010

Hi Pete..I take them both..Never Miss a LDN..helps sleep...good luck

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

don't tell anyone, but the off label revolution has begun, its a part of the immunotherapy revolution.

 

Dear Innovators,

Some conventional patients describe off label drug use and heavy supplementation as clutching at straws.

Well I have been clutching at straws for years now, since the day I was diagnosed 29may2010.

you never forget the day.

there's nothing wrong clutching at straws.

worst case you get a hand full.

with some luck one or two of the straws will hit a hot spot in your biology, and hopefully justify all the

effort in holding all those straws in your hand.

I have hope high hopes for myself and faith that straw holding is a worthwhile pusuit, weather we have a hand full of straws, a few straws or none at all. Just my opinion only, of course if interested discuss this with a medical professional.

hugs,

Pete

PS actually its ok to tell your cancer friends what you are doing and why, thats how grass roots revolutions happen. Has anyone had any side effects or problems using LDN and ALA ? I very much doubt it, I have not had any issues.

Ron, most compounding chemists will make LDN for you, I was advised to do 4.5 which is 3 x 1.5 ldn capsules. A touch on the high side. You can even get the script refunded by health insurance. IV ala is expensive, but you can buy it cheap from biological therapies in melbourne, details on my blog. they give terminal cancer patients a 50% discount, but you have to ask for it.

http://petertrayhurn.blogspot.de/2013/02/dont-tell-anyone-but-off-label.html this is to controversial for CSN

I have just started on Quinomit ubiquinol fluid, 10 puffs into your mouth twice a day. Its supposed to be the best coq10 you can use, its supposed to improve energy production at a cellular level.

http://www.pdazzler.com/archives/359

http://www.icqa.org/ICQA/home.html

http://petertrayhurn.blogspot.de/2013/02/coq10-started-on-quinomit-ubiquinol.html

renw's picture
renw
Posts: 284
Joined: Jan 2013

I get charged about $40 per IV infussion of ALA. I guess it adds up, but its one of the cheaper ones.

swordranch's picture
swordranch
Posts: 35
Joined: Feb 2013

I have been told to use the ala after my chemo is over for neuropathy.  Hoping it works to aleviate that, as it has exploded in Feb., even though I have not been on the Oxcilly since Dec. 11.  Did not have it in conjunction with chemo.

Laura

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

it happened to me.

lots of possible untested solutions to neuroapathy, buts it more important to avoid or mininse recurrance risk.

hugs,

pete

wolfen's picture
wolfen
Posts: 1129
Joined: Apr 2009

I know you use IV ALA, but could you recommend a good liquid(non IV) that I might put in hubby's feeding tube. He has 200mg capsules that I could pull open and use the powder(if that would work) as he can't swallow them whole.

Thanks,

Wolfen

renw's picture
renw
Posts: 284
Joined: Jan 2013

I have bought ALA from lef.org, which I take on my IV off days, but I can't say much about the quality as I don't know.

wolfen's picture
wolfen
Posts: 1129
Joined: Apr 2009

I'll check into that one.

Wolfen

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i asked my doctor hear at hallwang, he agreed with my thoughts, which is you can just open the capsule and mix it with water. the r form is about twice as good as the s form.

not sure about oral liquid alphal lipoic acids. I use life extension and iherb and have found thorne products to be expensive but supposed to have a good reputation.

its a small world but i am on iv alpha liopic acid as we speak.

hugs,

Pete

janie1
Posts: 753
Joined: Apr 2011

I just started ala IV to help with the inflammed liver due to chemo in hai pump. I must say I am feeling much better after 3 infusions. My abdomen felt tight (inflammation) and I always felt full so didn't eat much. I also hope the ala is doing something to keep the liver tumors from progressing rapidly, but that's not the reason for taking it.

The naturopath mentioned LND, also, and I would take it, but when (if) I start that clinical trial, I want my body cleared of everything (herbs, meds).
I'm just doing the ala IV for a couple of weeks, but so far something is having a positive effect. Also, started curcumin and Liver-C which includes mushrooms and other extracts, and milk thistle (silmaryin -sp?).

For my elevated liver enzymes, the conventional doc has me on Rifampin ( a TB med), and steroids in the hai pump). Was miserable for weeks.
Since I started on the naturopath's recommendations......it is a whole different ballgame. :)

janie1
Posts: 753
Joined: Apr 2011

I want to give Tans credit for something he wrote about a while back (in response to LOUSWIFT'S cirrhosis).

I've kept this in the back of my mind...... Tans told Lou about a doctor in New Mexico who did ala infusions and treated cirrhosis.

Recently with my liver inflammation, and who knows what else....is is chemical cirrhosis, hepatitis, temporary or permanent?.........i wondered if I should look up that doctor for myself.......more traveling....sigh.

Anyway, when the naturopath that I went to for the first time recommended ala infusions......I thought....this is great.....i know what he is talking about and he is right in my backyard. This was the only good news I've had since diagnosis 2 years ago.
I found out that people come from out-of-state to see this naturopath.....so now I'm not skeptical, and I've learned so much here from many of you willing to share. Thank you, thank you!!!!!

Also, I've met his first patient who is going to start DCA.

manwithnoname
Posts: 381
Joined: Jun 2012

you found a good Doc. Joan, they are HARD to find.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

today i am on dca and ozone, its nice to meet real live patients doing these dangerous untested therapies. its amazing we just don't drop dead on the spot.

your naturopath sounds like a good starting point, you may out grow them.

i have been to more doctors and naturopaths than i have had hot breakfasts, they all have something to offer, they all have limitations and vested interests. 

Our skill as informed patients is judging the difference.

goodluck, ALA is a good start, but then so is VIT C and well selenium. but one at a time, do your research. If you get some time checkout AHCC, i put the product guide on my blog. its does cancer and liver.

hugs,

Pete

luvinlife2
Posts: 172
Joined: Jul 2012

Sounds like my life too!!!

I like my Vit C iv's a lot more than my ALA ones.  Smile

tanstaafl's picture
tanstaafl
Posts: 915
Joined: Oct 2010

Thanks Janie.

Burton Berkson, PhD professor at Rutgers, then MD. A previous liver comment about Berkson's methods for Lou, http://csn.cancer.org/node/231474#comment-1163342

manwithnoname
Posts: 381
Joined: Jun 2012

I emailed him a while back, he is a wealth of information and a huge help, he also had time for my bizarre questions.... (Joan if you want PM me and I will give you his email)

wolfen's picture
wolfen
Posts: 1129
Joined: Apr 2009

Thanks for asking your doc. We all know some docs are "touchy" about some supplements.

At this point, he's still able to drink, so I'll start there and can put in feeding tube when swallowing is no longer a given.

Luv,

Wolfen

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

just do your best my dear friend, its all any of us can do.

hugs,

Pete

ps its ok for doctors to be touchy, ie they can be affectionate and real and maybe dish out a hug or a smile. being touchy about supplements just masks there ignorance

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