Very interesting, this....
blogs.wsj.com/health/2011/1...
Cyclodextrin removes VLCFA from cells. Many different analogues of Cyclodextrin. Research chemicals, prescription medications and nutritional supplements.
smartbrief.com/s/2011/11/re...
amazon.com/Alpha-Fibe-Absor...
supplement-geek.com/fbcx-ca...
Bear with me here, different disease, but read this....
ncbi.nlm.nih.gov/pmc/articl...
I'm really looking into this. I'll report back later.
It sounds very interesting. I'm game to try it.
Very interesting!
I guess my concern is that this was presented originally in 2009, then in 2011. Why haven't we looked into this, or have we??
Blacksbeep., Cyclodextrin is being used.
It's being trialed for Niemann-Pick type C1 disease.
It lowers cholesterol. With that disease cholesterol is the enemy. I'll see if it lowers my VLCFA. I'll have my VLCFA checked in 6 months. It's worth a go.
I believe the only treatments that will save us will come through research into similar, well funded disease research.
I was concentrating on MS for my meds. Modafinil, 4ap, 4apmeoh, Coenzyme Q10, et al. I'm looking into cholesterol now. Me, very low fat diet. I've lost 15 kilos. Was hard giving up doughnuts and McDonald's. Enjoy taking my son there and poisoning him with that junk.
Low fat, and I'm going to take my cholesterol as low as it will go. Mustard oil as well. Refuse to sit here and slowly die.
There are good meds out there that will help u{ (some of us). Modafinil, 4ap, Piracetam. But, how many of us are actually prescribed them?
Blacksheep, grab some pics of your boy's MRI. I want to see.
I love your thinking. What I meant though is what has happened between this article and now? I'm definitely not waiting for new therapies to be approved for our disease. That process is way to slow for me.
If this medicine doesn't have side effects like LO & Mustard Oil it will be incredible. I mentioned it to my doctor and he said the class of drugs are considered very safe.
Do we know that it lowers VLCFAs in more cells than Lovastatin? And will you be testing tissue samples for VLCFAs as well?
I guess the difference between what you propose and what they did here is in the paper, cyclodextrin being administered IV, while the supplements are for processing fats/cholesterol in the gut.
You are absolutely right. There is no data at all for oral administration of cyclodextrin lowering VLCFA levels, but it's touted as a cholesterol lowering thing. I'm sure there is some link between cholesterol and VLCFA.
There are clinical trials for Niemann-Pick Type C1 Disease
ncats.nih.gov/trnd/projects...
I like this bit..
"The molecule HPBCD has been shown to reduce both cholesterol and sphingolipid storage"
I'd never heard of a sphingolipid before.
x-ald.nl/biochemistry-genet...
"Fatty acids are necessary chemicals in the body. They are found in more complex chemicals such as triglycerides, phospholipids, sphingolipids, glycolipids, and others. Triglycerides, are the main chemicals in “fat”; they are primarily a storage form. Phospholipids are part of the membranes that surround all cells in the body and the smaller structures inside the cells. Sphingolipids and glycolipids are complex chemicals that are found mainly in brain and nerve cells"
Has to be worth a try.
Hey, I work at the National Center for Advancing Translational Sciences where we developed cyclodextrin to treat Niemann-Pick Type C disease. That is a lysosomal disorder where trash builds up in the lysosome. Interesting that cyclodextrin could get rid of VLCFAs as well. I actually sent this to a researcher I know who is trying to get a fellow to work on drug screening for ALD. We can test cyclodextrin. Perhaps others are doing so as well. Cross fingers, right? Best, Geoff
Thanks a lot for getting on this thread, tenfpole.
Cyclodextrin. I'm going to try some, just waiting for it to arrive. I've already road tested 4-AP-3-MeOH, Piracetam, Aniracetam, Oxyracetam, Noopept, Modafinil, Adrafinil, and on, and on.
I'll get my VLCFA tested and then give it 6 months.
I'm still religiously taking industrial doses of antioxidants and feeling good, very good. The amount of pills/powders I ingest is phenomenal, but it's doing the job.
I am convinced there is still more I can do to at least ameliorate this disease.
Anyway, thanks again. Keep us informed of any developments.
Hi all,
What's important is to know that taking cyclodextrin off the shelf may not be the solution. Drug developers have to do medicinal chemistry on cyclodextrin to make it work for Niemann-Pick Type C and may have to do the same for ALD. So, it may not work just buying it. But hey, then again, I wouldn't stop anyone from trying it.
Did you know cyclodextrin is an ingredient in Febreeze?
Hi All.
The original paper is this ncbi.nlm.nih.gov/pmc/articl...
the paper says MβCD is better than HPβCD but HPβCD is safer.
To my knowledge, cyclodextrin will be carrier of hydrophobic molecules.
The problems of this paper is they didn't measure C26:0 level. They didn't used ALD cell either.
It's funny for scientist is using cyclodextrin to add VLCFA to the cells for delivery purpose. Cyclodextrin helps solubility of VLCFA in water.
Hello folks,
For those of us who want to try Cyclodextrin, try these for size;
cyclodex.com/cyclo-powder.html
amazon.com/gp/product/B00WF...
Plenty more out there. Feel free to add your own sources.
I'm curious if this drug will be any different than Lovastatin. Lovastatin is also a cholesterol drug, lowered VLCFAs by 30%,in serum but did not affect VLCFAs in tissue, where it is most important. I hope anyone who tries it will get a baseline VLCFA sample from tissue and retest in the tissue as well. Just testing blood VLCFAs may not allow truthful results.
Hemp Seeds or Hemp Seed Oil (Cannabis)
Could this be AMN? Elevated VLCFA and white matter changes with adrenal insufficiency
Please let me know names of doctors treating you in the U.K.
I have had 4 Adrenal Crisis' this year
Supplements