-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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oxygenbabe
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posted
Is this Dr Haley's glutathione based chelator? It was in the works for a # of years. I was asking Teri Small of Autism One about it every few months and it was delayed. Maybe this is it.
Posts: 2276 | From united states | Registered: Jun 2004
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lymie_in_md
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posted
If you take it, you may want to take large doses of oral magnesium as well.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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GiGi
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Member # 259
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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NanaDubo
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posted
Is this similar to a product out there called maxgxl? I think maxgxl is an mlm thing (which I am not a part of) but I've heard a few people raving about it.
It contains:
Vitamin C 250 mg L Glutamine 750mg NAC 375 mg Alpa Lipoic Acid 75 mg
The guy at my local health food store has been trying to get me to try this for months but he's always trying to sell me the "next thing".
Any thoughts about maxgxl?
Posts: 1129 | From Maine | Registered: Feb 2008
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lymie_in_md
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Everything we take is about bioavailability, I'm guessing this products glutathione is made with enhanced bioavailability. Which means a number of other actions need to occur in the body for it to work.
The problems of autism is much more severe. Because the body was never fully built to handle toxins, seratonin production, It is severely handicapped. What is needed is a simple delivery method of glutathione to work without any help from the body taking it. In other words the body may not have the mechanisms a normal body has in processing these biochemical functions. You need to create a method to replace what the body can't do.
For lymies, we have a much weakened version of our former selves and are thereby dysregulated. I guess the hope for us specific to ths product is to help re-regulate our processing of glutathione. Almost like priming the pump.
All of the views I just expressed are subjective or a guess or opinion. Just to generate further discussion.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Vermont_Lymie
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posted
What is your personal experience with this product?
The link does not provide any information about the ingredients or price.
Why is the product "exciting'? There are MANY anti-oxidants and glutathione boosters on the market, and many supplements already on sale that actually have evidence for working through the same mechanism that this product claims.
I would like to see some -- any -- documentation on this product for its health claims.
However, the link provided for this "exciting new product" describes neither cost, experience, ingredients, or evidence about its use in tick-borne diseases.
Any experience with this product with tick-borne diseases?
What are the ingredients and non-active ingredients? And the price?
This appears to be viral marketing.
From Wikipedia:
Viral marketing and viral advertising refer to marketing techniques that use pre-existing social networks to produce increases in brand awareness or to achieve other marketing objectives (such as product sales) through self-replicating viral processes.
It can be word-of-mouth delivered or enhanced by the network effects of the Internet.
Viral marketing is a marketing phenomenon that facilitates and encourages people to pass along a marketing message voluntarily.
Notable examples of viral marketing:
Multi-level marketing popularized in the 1960's and 70's (not to be confused with Ponzi schemes) is essentially a form of viral marketing in which representatives gain income through marketing products through their circle of influence and give their friends a chance to market products similarly.
When successful, the strategy creates an exponentially growing network of representatives and greatly enriches adopters. Examples include Amway and Mary Kay Cosmetics.
Posts: 2557 | From home | Registered: Aug 2006
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oxygenbabe
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posted
Autism and lyme can be explained by almost exactly the same model, except autism affects the developing brain. But you have:
1) Poor detox 2) Heavy metal poisoning and other toxicities 3) Chronic infection 4) All kinds of inflammatory problems, and CNS problems
Anyway, Boyd Haley has been working on this for years and I've been waiting for it for years!!!! I don't know much about this now but I'm going to research it. He was going to try, from what I understood, to make an effective glutathione based chelator. DMSA and DMPS are not that effective as they don't bind tightly enough, and mercury gets bound and excreted but also mobilized and redistributed. I could not handle even two DMSA pills years ago.
I hear through the grapevine that the distribution is being limited because some doctors were gouging their patients by raising the price on this. Disgusting. I know of other situations where that has happened--products doctors get at wholesale, and double the price to make money off their patients.
If I find out more I'll let you know.
Posts: 2276 | From united states | Registered: Jun 2004
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SForsgren
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posted
Vermont_Lymie, I am not going to do the rest of the research for you. I find it exciting. That's my opinion. I am using it myself. You can do the rest and make your own decisions.
There is no viral marketing here, but believe as you desire. It makes no difference to me.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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GiGi
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posted
Scott, great answer to Vermont Lymie. Some people want their cake and it it too. I will use it the next time I talk about "something new".
Posts: 9834 | From Washington State | Registered: Oct 2000
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northstar
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posted
Hi Scott,
You mention you are taking it, too. What effect have you seen?
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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SForsgren
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posted
It has only been about 10 days. Too early to comment.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Vermont_Lymie
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posted
quote:Originally posted by SForsgren: Vermont_Lymie, I am not going to do the rest of the research for you. I find it exciting. That's my opinion. I am using it myself. You can do the rest and make your own decisions.
There is no viral marketing here, but believe as you desire. It makes no difference to me.
Scott,
Before writing my post, I did a web search. It was what I found on-line that made me believe this is marketing/advertising.
There is little information out there about this product and its contents, nothing that documents its bold health claims. The only information I find on-line questions the safety of the product (see below), its testing, and the ethics of its direct-to-consumer sales.
There is also no information available on-line for the company that is manufacturing it.
If you have information on this product, it is not available to the general public via google searches.
I checked your website too, to see if I could learn anything about ORS there.
I appreciate that your website discloses that you *may* have a financial relationship with companies whose websites you list on your site, like Dr. Klinghardt's Biopure, and that you *may* receive an affiliate fee from them
I think if products are to be advertised by posters on Lymenet, these posters should disclose here on lymenet whether they have a financial relationship with the products/websites/companies they are recommending.
Since you seem to have information on this product (and the product, which according to your link is not on sale yet) not available to the general public, it would be nice if you shared it, as you are promoting the product.
As the company selling this product does not have it on the web yet, my research on ORS only leads to sites that question the safety of this product and that list disturbing information on its testing; e.g., see:
If you have any other information, it would be great to share it.
If you have a financial affiliation with the product, website or company, I think it should be declared. I would ask this of any lymenetter advertising a product.
Posts: 2557 | From home | Registered: Aug 2006
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Vermont_Lymie
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posted
Here is what is available on-line about ORS; very disturbing. Note that the synthetic chemicals in ORS may be quite toxic:
Dear Professor Tracy,
Thank you very much for your reply and your willingness to investigate the matter of Prof. Boyd Haley's chelator-cum-``antioxidant'' Oxidative Stress Relief (OSR).
Since I originally wrote to you and your colleagues two weeks ago, additional information and questions have arisen about the origins of OSR, and about the role and responsibility of the University of Kentucky in its development and licensing.
1. Molecules which Prof. Haley has described at autism conferences as ``chelators'' and ``antioxidants'' are identical to molecules developed by University of Kentucky Prof. David Atwood and encompassed by U.S. Patent 6,586,600, ``Multidentate Sulfur-Containing Ligands'' (.pdf). The patent is assigned to the University of Kentucky Research Foundation.
The chemical structure of one patented molecule, BDETH2, as described in Prof. Atwood's Powerpoint presentation, ``Heavy Metal Binding With Thiolate Chelates,'' is identical to the chemical structure of OSR as described in Powerpoint presentations by Prof. Haley.
Prof. Atwood's Powerpoint presentation indicates that BDETH2 is toxic to minnows at 292 ppm -- significantly more toxic than ethylene glycol (see p. 11).
The chemical structure of a pyridine-based molecule described in Prof. Haley's Powerpoints is identical to the structure of ``PyDET,'' a pyridine-based chelator also encompassed by Patent 6,586,600 and described in Matlock, Atwood et al.`s 2002 paper, ``Effectiveness of commercial reagents for heavy metal removal from water with new insights for future chelate designs.''
It is clear that both BDETH2 and PyDET are synthetic compounds that do not exist in nature, they are not derived from foods, and are not synthesized versions of naturally-occurring compounds. Neither BDETH2 nor PyDET has a CAS number or a Materials Safety Data Sheet. Neither BDETH2 nor PyDET nor any derivative thereof can honestly be described as a ``dietary ingredient'' or a ``food supplement.''
2. The University of Kentucky Office for Commercialization and Economic Development identifies Prof. Haley and ``Haley Tech'' as recipient of a startup license in 2007 for development of water soluble chelators.
The university website offers no further information regarding the sort of applications for which Prof. Haley d/b/a/ Haley Tech was granted his license, or whether that license extends to the operations of either Prof. Haley's Chelator Technologies or CTI Science business entities.
3. It has been reported that in addition to the rat toxicity studies described in Prof. Haley's FDA submission, Prof. Haley has conducted experiments on OSR on goldfish, his own cat, and cats belonging to another family that were poisoned by melamine.
It is unclear whether protocols for these pharmaceutical experiments on vertebrate animals have been approved by any Institutional Animal Care and Use Committee.
4. On August 30, 2005, Texas dentist and OSR distributor Paul G. Wilke, DDS was sanctioned by the Texas State Board of Dental Examiners regarding multiple instances of failure to obtain proper informed consent from a patient. According to SBDE Order No. 04-524-0308:
``During the time period from June 26, 2002 through September 26, 2002, the Respondent fell below the standard of care by failing to make, maintain, and keep adequate dental records on patient O.M.
Specifically, the record does not include: a written informed consent signed by the patient for the administration of anesthesia on multiple occasions; or written informed consent for extractions performed on June 26, 2002 and July 16, 2002.''
Presumably, Dr. Wilke has satisfied the terms of his settlement agreement (i.e., payment of a $500.00 fine and completion of continuing education courses in crown and bridge procedures, risk management and recordkeeping).
Nonetheless, his disciplinary history and his unprofessional demeanor in the direct-to-consumer sales pitches he has broadcast on Autism Speaks inspire little confidence in his competence to participate in an informed consent process involving OSR consumers, especially those who are not his patients.
After being publicly criticized for stating that ``OSR was approved for sale by the FDA in July of 2008,'' Dr. Wilke removed the statement from his website (compare this .pdf of the original version). However, his admonition to parents to ``Be thankful that OSR was FDA approved and is available'' remains viewable on the Autism Speaks message board.
Since you have expressed your intention to explore all of the hyperlinks contained in my previous letter, and since only registered members can access the ChelatingKids2 list on Yahoo!, I have attached .pdf files of several list discussions and posts so that you can verify the quotes and get a better sense of parents' understanding of the purpose and function of OSR.
Also, since Autism Speaks has announced that it plans to close its message board in September, I have created and have attached .pdf's of Dr. Wilke's posts to that forum.
I have published my August 1 letter to you and your colleagues online under the title, ``A Fine White Powder.'' A second essay, ``The Industrial Treatment,'' discusses the University of Kentucky patent.
I encourage you to read the public comments appended to this material, which include the observations of chemists, doctors, a former FDA fraud investigator, parents of autistic children, and autistic citizens.
They offer a range of perspectives on the scientific and ethical implications of Prof. Haley's development and testing of OSR, and his unconscionably premature and misleading marketing of this drug to the families of vulnerable disabled children.
Best regards,
Kathleen Seidel neurodiversity.com |
Posts: 2557 | From home | Registered: Aug 2006
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SForsgren
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To promote a product here that resulted in financial benefit would be a violation of the terms of service of Lymenet. Enough said.
If you don't want to research and consider OSR, then don't. It's all up to you. It doesn't make a difference to me one way or the other.
I post the information as I know some are excited about this new product and it is just recently coming to light.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Vermont_Lymie
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posted
OK Scott, fair enough! I wish you and everyone else here good health. Good luck with your use of it and keep us posted.
The research I did led to some disturbing information on ORS. I hope before anyone tries it, they consider the information posted above from the neurology link, which discusses ORS, e.g.,
"It is clear that both BDETH2 and PyDET are synthetic compounds that do not exist in nature, they are not derived from foods, and are not synthesized versions of naturally-occurring compounds.
Neither BDETH2 nor PyDET has a CAS number or a Materials Safety Data Sheet. Neither BDETH2 nor PyDET nor any derivative thereof can honestly be described as a ``dietary ingredient'' or a ``food supplement.''"
New supplements with inadequate testing may be more harmful than helpful, not to mention expensive.
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SForsgren
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posted
Do you also exclude all GMO foods because they do not exist in nature?
You can take ANY product and find someone that has something bad to say about it. The product is new. I am not suggesting it is safe or non-toxic. I am only putting the information out for others to review and make their decision in conjunction with their health practitioner on whether or not this may be helpful.
There are a number of doctors using OSR.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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oxygenbabe
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posted
Thanks Vermont Lymie. I don't know who that dentist was saying they had FDA approval. That's outrageous.
My understanding was that to try to get a new chelator through the FDA could take forever, and people are suffering *now* with mercury toxicity and no good chelator.
I didn't expect a natural chelator. Natural chelators are rather gentle (seaweeds etc). Maybe zeolite is a good natural chelator. I've heard that.
However any new product, like any new drug, can have side effects nobody can know until a few years of use in a large # of the population.
It would be tragic if this had bad side effects.
It would also be tragic if at last we had a chelator for mercuring poisoning and it was taken off the market because it was considered a drug and not yet FDA approved. It would then never get FDA approved.
Posts: 2276 | From united states | Registered: Jun 2004
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northstar
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Very interesting research, Vermont! It filled in some factual blanks that were not provided. Thanks!
Yes, one can always find caveats....and they are an important part of any decision, so that is why they are desireable. It is important to consider both pro's and con's. It is only information, and not a slam on the product or poster.
Scott said:
quote: I am not suggesting it is safe or non-toxic. I am only putting the information out for others to review and
That is correct...it may not be safe.
As far as providing information, a link with no information and a personal "no comment" as to effect, is not information enough to understand or evaluate a product.
Luckily, other posters did the research for the product, since this research was not provided earlier.
Vermont's link and other unbiased and unemotional information serves all readers.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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SForsgren
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Anyone can focus on the potential negatives. Doctors are using this product. It is not without research behind it. Anyone can find anything they want to on the internet that will negate any potentially helpful product.
For those that take that approach to all possible new healing options that don't come from Big Pharma, ``If you do what you've always done, you'll get what you've always gotten.''
You can either focus on the negative and bypass this potential healing option or listen, watch, and see what unfolds. Makes no difference to me. Actually it does.... I hope that some will be open, do the research, and find options that improve their health.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Just because a doctor uses a product does not mean it is safe. I am not commenting on this chelator specifically, just on Scott's notion that because a doctor uses it makes something safe.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10169 | From Illinois | Registered: Aug 2004
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SForsgren
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posted
I definitely agree with that. Very few of the Big Pharma products are "safe and non-toxic".
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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GiGi
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posted
Come to think of it, why would we need a government-approved OSR or DMPS as long as mercury is not toxic?
Have a happy Laborday,
Posts: 9834 | From Washington State | Registered: Oct 2000
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NanaDubo
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posted
Scott - where does one get OSR?
Good one gigi - mercury non toxic.
Posts: 1129 | From Maine | Registered: Feb 2008
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SForsgren
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posted
It is only available today through some doctors. It will be available in a few months as I understand at ctiscience.com. Be well
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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oxygenbabe
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posted
I was informed today by someone prominent in the autism community (parent--activist--writer) that Kathleen Seidel does not believe in trying to biomedically recover the autistic children.
I appreciate all viewpoints. However I hate, hate, hate, those who are against biomedical interventions for the kids. Top experts everywhere from Stanford to Harvard have personally seen and documented that biomedical interventions help.
Posts: 2276 | From united states | Registered: Jun 2004
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luvs2ride
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I appreciate both sides of an argument too.
Thank you Scott for bringing this product to our attention and thank you Vermont_Lymie for researching and bringing the information revealing a potential negative.
That is fair and balanced discussion, research and review of new and old products.
Yes, we do have to take certain risks with our medical treatments. That doesn't mean we shouldn't evaluate it carefully before we jump on board.
For 2 yrs, I have taken IVs of glutathione which have given me noticeable improvements. This is done in a doctor's office. If you do a search here, you will find others that have also experienced relief.
I also take glutathione precursers but do not see obvious improvement. Take them anyway as all research says they are a good thing.
Glutathione has much valuable research out there. Just google it and you will see why we should all be taking it.
I am currently on Glutathione suppositories and seem to get good results from it as well. It is harder to assess effects these days as I have very little symptoms. But when I first started the IVs, the relief of symptoms was swift and great. Tincup seems to have had this same experience with the IV form.
So, for those not yet tapped into glutathione, use this opportunity to learn more about it. I'll be watching for more information on OSR and Scott's experience with it.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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aklnwlf
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Thank you Vermont Lymie for the scientific backup which seems to be lacking in alot of 'other' posts.
I've come to find that on alot of these 'alternative' posts that if you don't agree with the few 'in power' you're slammed repeatedly.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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posted
I hope this product can be evaluated without bias on any side and without attacking anyone.
Personally, I have read more alternative post bashing on this board than I have ever seen on the medical posts.
We have to be careful whatever treatment we pursue as each person can react differently to what they take, medical or alternative.
I'd be surprised if they ever come up with one treatment that will help everyone conquer lyme & co-infections -- would be nice though.
JMHO
Posts: 590 | From Canada | Registered: Oct 2007
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lymie_in_md
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There is still a lot we don't know. When you say 292 ppm kills a minow, fine. What does that mean, arsenic at a certain level is lethal too, but people are allowed to buy cigarettes.
Professor Tracy knows very little about the aspects of what Professor Haley is doing, nor do we or why.
As far as I'm concerned, professor Haley is a hero. He took on the ADA and the FDA about its use of Thimerasol and staked his reputation on it. In front of congress by the way. He and others are getting mercury out of vaccines and forcing the ADA to do a better job a mercury removal in wastewater. And lets not forget his spearheading on mercury amalgam which is about to be reclassified by the FDA.
It is important we know OSR is safe vermont_lymie is quite right and the information provided is important. And by the way there is no science to base any decision from what I've seen just yet.
As far as knowing more, I think Scott is a pioneer for all our benefit. He's taken it for 10 days and thankfully he's still around. We've all learned something. Thanks Scott!
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
A natural way to increase Glutathione ...WARNING.. (A MLM Co)Not selling do your own research...
Himalayan Goji Juice - The GoChi Latest Study April 14, 2008 By: admin Category: GoChi, buy himalayan goji juice
The latest Freelife Himalayan Goji Juice study now shows that by taking a daily dose of Gochi you will see higher Glutathione levels in your body which gives rise to less free radicles in your body. Click Here to see the results for yourself.
The study according to Freelife was this:
``The second study, conducted by a prestigious medical center in Asia, was a 30-day investigation into antioxidant activity in the human body. Fifty healthy adult volunteer test subjects were divided at random into two groups--a GoChi group and a placebo group. Each group received a 4 oz daily serving of either GoChi or an inactive placebo respectively. None of the test subjects were associated with FreeLife� nor had they consumed Himalayan Goji� Juice or GoChi prior to the study. After 30 days, the GoChi group showed significant improvement in antioxidant activity, as evidenced by significant increases over starting point values in blood levels of the important antioxidant enzymes superoxide dismutase (SOD) and glutathione peroxidase (GSH-Px). Also found in the GoChi group was a significant decrease in levels of toxic malondialdehyde (MDA), a key blood marker of oxidative stress, free-radical damage, and premature cell aging. No significant differences were observed in the placebo group in these areas.''
-------------------- This is only my opinion and/or experience with Lyme Disease. I am not a medical professional. Posts: 587 | From usa | Registered: Dec 2000
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Good one gigi - mercury non toxic.
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