June 12th, 2009
Wacker Chemie, the Munich-based chemical company, announced that is has expanded its US based cyclodextrin facility in Eddyville, Iowa. According the the press release issued by Wacker, the new cyclodextrin facility increases the company’s capacity for alpha (α) and beta (β) cyclodextrins by 50 percent and doubles its capacity for gamma (γ) cyclodextrins.
Investment in the entire facility totaled over $21 million and will enable Wacker to produce up to 7,500 metric tons of cyclodextrins a year. The extra capacity is needed to meet the worldwide rise in cyclodextrin demand.
According to the press release, “the ability to reversibly enclose other substances makes cyclodextrins invaluable in many products such as pharmaceuticals, cosmetics, textiles and food, not to mention in the household-care, personal-care and construction sectors.”
What about entrapping cholesterol in the human body and helping get rid of it? Interestingly, Wacker’s press release does not mention hydroxy propel beta cyclodextrin (HPBCD) and its potential health benefits.
This is the type of cyclodextrin we are giving via intravenous infusions to Addi and Cassi for their fatal cholesterol metabolism disease, Niemann Pick Type C (otherwise known as the “childhood Alzhiemer’s.”) Hydroxy propel beta cyclodextrin is somehow grabbing the stuck cholesterol and taking it out of the twins’ bodies through urine/stool. I wonder if Wacker even knows of this cyclodextrin project or the fact that HPBCD also kills the HIV AIDS virus.
Here are some great facts on cyclodextrins from Wacker:
- Cyclodextrins are cyclic sugar molecules. The number of glucose units defines the size of the sugar ring – alpha-cyclodextrin has six, beta-cyclodextrin seven, and gamma-cyclodextrin eight glucose units
- Cyclodextrins are able to enclose other substances in their interiors, much like a cone encloses a scoop of ice-cream. This enables cyclodextrins to bind ingredients, release active agents and stabilize sensitive substances such as vitamins and coenzyme
- Cyclodextrins have the ability to reversibly enclose other substances making cyclodextrins invaluable in many products such as pharmaceuticals, cosmetics, textiles and food, household and personal-care
The best part of the whole announcement was this statement — cyclodextrins of all types are non-toxic, non-allergenic and pose no known health risks based on today’s scientific findings!
Filed under Cyclodextrin Research, News | Comment (0)
June 5th, 2009
Journal of Virology
May 27, 2009
Deficiency of Niemann-Pick type C-1 Protein Impairs HIV-1 Release and Results in Gag Accumulation in Late Endosomal/Lysosomal Compartments
Tang Y, Leao IC, Coleman EM, Broughton RS, Hildreth JE.
Human immunodeficiency virus type 1 (HIV-1) relies on cholesterol-laden lipid raft membrane microdomains for entry into and egress out of susceptible cells. In the present study, we examine the need for intracellular cholesterol trafficking pathways with respect to HIV-1 biogenesis using Niemann-Pick type C1 deficient cells (NPCD) wherein these pathways are severely compromised, causing massive accumulation of cholesterol in late endosomal/lysosomal (LE/L) compartments.
We have found that induction of an NPC disease-like phenotype through treatment of various cell types with the commonly-used hydrophobic amine drug U18666A resulted in profound suppression of HIV-1 release.
Further, NPCD EBV-transformed B lymphocytes and fibroblasts from patients with NPC disease infected with a CD4-independent strain of HIV-1 or transfected with an HIV-1 proviral clone, respectively, replicated HIV-1 poorly when compared to normal cells.
Infection of the NPCD fibroblasts with a VSV-G pseudotyped strain of HIV-1 produced similar results, suggesting a post-entry block to HIV-1 replication in these cells. Examination of these cells using confocal microscopy showed an accumulation and stabilization of Gag in LE/L compartments. Additionally, normal HIV-1 production could be restored in NPCD cells upon expression of a functional NPC1 protein, and overexpression of NPC1 increased HIV-1 release.
Taken together, our findings demonstrate that intact intracellular cholesterol trafficking pathways mediated by NPC1 are needed for efficient HIV-1 production.
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June 5th, 2009
In chapter 18 of a book by Stefano Bertozzi referenced by famous health economist Robert H. Topel in his article in the Journal of Political Economy, several insightful comments about HIV research funding and needs for prevention in the face of a rapidly increasing HIV infection rate are highlighted.
The points made by Bertozzi et all about the lack of funding for research into preventive treatments for HIV are directly applicable to the difficulties I am facing obtaining funding and support from for a cheap sugar compound called cyclodextrin that has great potential to help stop the spread of HIV/AIDS.
Even though the U.S. President’s Emergency Plan for AIDS Relief and the Gates Foundation are funneling a great deal of money into AIDS research, introduction of ameliorative therapy projects based on simple and available non toxic compounds such as hydroxypropyl beta cyclodextrin have not gotten past the initial screener. Why is further research into this simple sugar compound being held back?
Bertozzi et al attribute such resistance to compounds like cyclodextrin to the perception that preventive research is viewed as “less innovative scientifically” and “typically less experimental” by funding organizations. They suggest earmarking such ameliorative therapy approaches to redress this imbalance.
The ameliorative therapy approach with hydroxypropel beta cyclodextrin also addresses the cited need for well-defined control or comparison groups necessary to measure the effectiveness of this preventive therapy.
It’s also interesting that a ready-to-use cheap formulation of cyclodextrin that would cost 10 cents per dose to deploy into Africa (!) and simply needs quick re-packaging doesn’t interest the funding organizations or the NIH. It would seem that immediate relief for people and saving lives is far less exciting than the thought of basic research and making money.
It is hard to believe that a compound promising a stop to the method of transmission responsible for 80% of the HIV infections around the world does not create a compelling reason for funding and testing. It would only cost $500,000 dollars to test cyclodextrin, the cost of caring for approximately one AIDS patient over their lifetime. Surely Mr. Gates could direct $500,000 dollars at this sugar compound to see if it works before spending millions on something less effective?
Finally, there is money in cyclodextrin and very smart people are researching it. The ability for HIV AIDS to assemble in the human body is directly tied to the Niemann Pick Type C cholesterol gene on Chromosome 18, one of the most important genes in the body (this gene is now tied to obesity!). And look what hydroxy propel beta cyclodextrin is doing for my 5 year old twins, Addi and Cassi, who suffer from one of the worst cholesterol diseases on the planet.
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May 2nd, 2009
Dr. David Begley, one of the world’s leading blood brain barrier experts at Kings College London is working on a research project we are currently funding on cyclodextrin and the blood brain barrier.
We want to answer the following question. Does hydroxy propel beta cyclodextrin (HPBCD) cross the blood brain barrier? Since less than 5% of drugs (made up of very small molecules) are able to cross the barrier and cyclodextrin is not considered a small molecule nor a drug, the possibility of cyclodextrin crossing into the brain would be remarkable.
Less than 5% of Drugs can cross the Blood Brain Barrier: Click to Enlarge
Addi and Cassi, my 5 year old identical twins, who have a cellular cholesterol metabolism disease called Niemann Pick Type C (often referred to as the Childhood Alzheimer’s) and are being treated with infusions of the sugar compound cyclodextrin.
When we started Addi and Cassi’s first few rounds of cyclodextrin infusions three weeks ago, I honestly did not expect to see much of a change because we started with a low dose. I certainly did not think my girls would start saying words again. To put this story in context, prior to starting the cyclodextrin infusions, Addi and Cassi had both lost their ability to talk. Addi was still trying to talk by making grunting sounds and came out with an occasional word here and there and Cassi was virtually mute.
However, since starting the cyclodextrin infusions, Addi has started repeating sentences again. This type of language is called echolalia and it’s something Addi did before she stopped talking. Cassi has become more vocal as well.
In the last 36 hours, Addi has repeated the following: Good morning, That’s great, That feels better, Rosie and Gilbert (characters from a cartoon), Let’s go walking, Let’s do it, Daddy’s here, Alright, Bye Tia (to our nurse), There’s Martha (in reference to our nanny), No, Me, We, More, Where’s Addison, That’s mine, I can do it, Let’s put them in the garbage can, Open, I Love You and Let’s have breakfast. Cassi has only managed a few words over the past few weeks but is making a lot more sounds with different pitches instead of a single low hum. (Note: Cassi has never talked as much as Addi and her speech was lost a few months before Addi’s).
I can’t express in words what it’s like to hear your child talk again. When my husband walked into the hospital room and Addi repeated ‘Daddy’s here” his eyes welled up with tears. Our nanny Martha has been with our girls since birth and it’s been six months since Addi has said her name. Yesterday, Addi clearly said “Martha” twice.
In addition to the spike in speech, the girls also seem happier, appear to have a slight improvement in head control (when rested) and their eye contact appears better. I have noticed a few more “stare off” spells with Addi (possibly absent seizures?) but I am not sure if these have increased or if I am just paying more attention and noticing them more.
The girls have experienced speech improvements previously when starting antibiotics (Amoxicillin and Septra). But the improvements did not last. There seemed to be a honeymoon period after starting the antibiotics and then the improvements stopped after 3-4 weeks. I have never received an answer from a doctor or researcher as to why antibiotics had a short term benefit for my girls, but they did.
To everyone’s delight, Addi and Cassi are experiencing neurological improvements on cyclodextrin. Since they are identical twins and are both improving, this leads me to the conclusion that cyclodextrin (HPBCD) is having some sort of effect on cellular cholesterol accumulation — either it’s crossing the BBB or somehow creating a siphon effect in the body and pulling cholesterol out of the brain? Dr. Begley will need to explain to the research world what cyclodextrin is actually doing and I can’t wait for his research work to finish.
Cyclodextrin is very exciting and promising, not only for Addi and Cassi and other kids impacted with Niemann Pick Type C but for the scientific community in general. I am starting to wonder what cyclodextrin could do for people suffering from atherosclerosis and if it would help eliminate the build up of plaques in the arteries? Also, several lines of evidence have implicated a role for cholesterol in Alzheimer’s disease.
I urge scientists working on diseases involving cholesterol pathways to spin up experiments with cyclodextrin (HPBCD) right away.
Filed under Blood Brain Barrier, Cholesterol, Cyclodextrin, Niemann Pick Type C | Comment (0)
April 16th, 2009
Addi and Cassi’s first round of cyclodextrin infusions have been going smoothly at Renown Regional Medical Center in Reno, Nevada. We’re now into our third day of continuous infusions of hydroxy propel beta cyclodextrin (HPBCD) into the girls’ bloodstreams and they don’t seem to be experiencing any negative side effects. I feel as if it’s having a positive and immediate effect. Addi was talking yesterday afternoon and stringing together more than one word — “I like my toys, I’m brave enough, I need your help, “Bye” to Dr. Hastings, and “Ad” for her name Addison. Even Cassi came out with a few words - “Mommy, No.” This is quite encouraging to us but we’re not yet sure if it’s a result of the cyclodextrin treatment.
Addi and Cassi resting during cyclodextrin infusions
Addi and Cassi’s blood work-ups have come back “normal” following the cyclodextrin infusions. There was a slight elevation in both girls’ eosinophils after 24 hours but it was minor. We also had to change Addi’s port access needle as it was not working properly and we were unable to draw blood. Unfortunately, we had to re-install the needle on her chest without any numbing cream. Ouch!
- Addi and Cassi’s Cyclodextrin Being Prepared In Sterile Form: Renown Regional Medical Center
I found out this morning that researchers were looking at the same cyclodextrin (HPBCD) and Niemann Pick Type C disease back in 1996 — 13 years ago! I received this information from a scientist in Europe and I almost had a heart attack when I read the scientific abstract.
Somehow cyclodextrin research as it relates to Niemann Pick Type C was not thoroughly pursued with all angles exhausted by scientists. This simply can not happen again — not only for Niemann Pick Type C disease but for HIV/AIDS and potentially other viruses like Herpes that are inactivated and killed by cyclodextrin.
I worry about the future of cyclodextrin research. We can’t count on pharmaceutical companies to research cyclodextrin or bring therapeutic products with cyclodextrin to people as they are focused on profits and patents on new drugs that take millions of dollars and years to make. Cyclodextrin is an inexpensive and non-toxic compound that can be deployed tomorrow — far too EASY! But the HIV/AIDS pharma companies should be watching cyclodextrin very closely. I believe the smart ones will start investing into research and try and create new patents around cyclodextrin since the Niemann Pick Type C cholesterol gene/protein on Chromosome 18 is the culprit in HIVs ability to assemble itself in the human body.
Very First Glass Infusion Bottles of Cyclodextrin
It’s time that the National Institutes of Health (NIH) Office of AIDS Research or the Centers For Disease Control and Prevention or some other government agency steps in and redirects money into cyclodextrin research to study this potentially life-saving compound that has very broad applications.
I am also asking for help from private citizens and global foundations such as The Gates Foundation, The Clinton Foundation, Elton John AIDS Foundation, amfAR and One.org to step in and help by taking a closer look at cyclodextrin and it’s relationship to cholesterol metabolism and killer viruses like HIV/AIDS. We must make sure cyclodextrin is properly tested as a therapeutic agent whether money can be made from it or not (which is can be!)
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