Low Dose Nonsense
I stumbled upon this (ahem) Conference presentation this morning but I was disappointed to find out I already missed it. Too bad really because it sounds like it would have been entertaining, assuming I would be able to suspend disbelief for a few hours.
The presentation is titled, AUTISM, AUTOIMMUNITY, AND LOW-DOSE NALTREXONE, By none other than my favorite Grandmother/Sex therapist/autism expert/author, Jaquelyn McCandless.
Note that the conference location is listed as the National Library of Medicine, NIH CAMPUS, Bethesda, Maryland. I highly doubt that this is an NIH sponsored event but it sure sounds impressive, doesn't it?
As Mike Stanton points out on the Autism Street Blog, "These people often book prestigious locations to suggest that the institution where they meet actually endorses their views when, in fact, they are just in it for the money."
Jaquelyn McCandless is an autism authority of sorts. She has written a book called "Children With Starving Brains" where she shares her knowledge of nearly every alternative autism therapy under the sun. Unfortunately, all of this knowledge and expertise hasn't helped her own granddaughter with her starving brain issues. On page 29 of the brochure she eloquently describes her as "A VERY SPECIAL NON-RESPONDER." See the child has failed to respond to the very best treatment options available to one of DAN's most prestigious experts.
WORLDWIDE ASD EPIDEMIC
On the third page of the brochure we learn that the planet is in the grips of a Worldwide ASD Epidemic! SCARY!
• FROM 2001-04, 1026% INCREASE IN FULLDIAGNOSIS
ASD SCHOOL AGE CHILDREN PER US DEPT OF EDUCATION.
• OVER 2 MILLION CHILDREN IN US HAVE ASD, OVER 6 MILLION HAVE ADD/ADHD, OVER 2 MILLION TAKE RITALIN
• INCIDENCE OF CLASSIC 1:10,000 TO ACQUIRED (“REGRESSIVE”) ASD 1:150
• RATIO - BOUS:GIRLS 4:1 for ASD, ADD/ADHD, LEARNING/BEHAVIOR
In case you were wondering, I think that is supposed to be 'BOYS' not "BOUS' (The Y and U keys are very close).
Geez, a 1026% increase? I had heard it was 6000% but either figure is scary enough. Plus there are over 2 million autistic children in the US? I also see that regression has become synonymous with acquired now. When did that happen? Nothing like a little blast of reality to get your attention. That should help with ticket sales.
What other fun facts can we expect to learn at this conference?
ASD BIO-MEDICALLY
• GENETIC PREDISPOSITION –
ALLERGIES, AUTOIMMUNITY,
FAMILY HISTORY
• WEAKENED IMMUNE SYSTEM,
FREQUENT INFECTIONS/ANTIBIOTICS
1st YEAR
• GET INFLAMMATION, PATHOGENS
• IMPAIRED NUTRITIONAL STATUS
INABILITY TO EXCRETE THEREFORE
ACCUMULATE HEAVY METALS IN
THEIR BODIES
Now keep in mind that Dr. McC is an authority and rarely bothers with qualifiers when presenting her opinions, or more accurately the opinions of others. Never mind that each of these things are mere speculation at best and reflect current thinking in the DAN!/Bio-Med community. Not one has graduated from the status of hypothesis up to theory.
There may be a genetic predisposition to many things but the only way to know this is to identify the genes involved. That would be pretty big news.
There may be a "weakened immune system" (hypoimmune) or there may be an altered immune system (dysregulated) or enhanced immune response (hyperimmune) which is more consistent with the 'Autoimmunity' in the title. Dr. McC doesn't know because she relies on test results from Immunosciences Lab where you can ask for the PREMIER ASD IMMUNE PANEL at a special discount for Dr. McCandless patients: $1644, 50% DISCOUNT AS PANEL = $822 PRE-PAID. For that you will receive test results for roughly 12 markers some people believe (including the lab owner) may be relevant to autism, but most are either not relevant or not known to be relevant. Some are only mentioned in terribly flawed papers put out by Aristo Vojdani (the lab owner).
Unfortunately there seems to be some confusion over the CLIA Certification for this lab but they may have that straightened out now.
MEASLES AND BRAIN VIRAL AUTO-ANTIBODIES IN ASD
• SINGH 1998: 70% OF AUTISTIC SERA HAD ANTI-MYELIN BASIC PROTEIN ANTIBODIES, NONE IN NT CHILDREN.
• 57% ASD HAD ANTI-NEURON-AXON FILAMENT PROTEIN, NONE IN NT KIDS
• HIGHER ANTI-MEASLES ABS THAN NT KIDS, MUMPS AND RUBELLA NOT DIFFERENT FROM NT’S
Right, Singh reported higher Measles antibodies in ASD sera and also elevated MBP antibodies. This doesn't mean the two are in any way related, just that they were both detected. Dr. McC must have embellished a bit when she says NONE in NT children because these antibodies are detectable at some level in nearly every human. More recent investigations failed to find significant elevations in either antibody as compared to control subjects.
WAKEFIELD: INFLAMMATORY BOWEL DISEASE IN AUTISM
• GUT BIOPSIES, 1998: MEASLES VIRUS DETECTED IN DENDRITIC CELLS AND MATURE LYMPHOCYTES IN
75/91 ASD CHILDREN VS 5/70 CONTROLS WITH LYMPHOID
NODULAR HYPERPLAXIA
• THOUGHTFUL HOUSE 2005 STUDY CORROBORATES INCREASED RATE OF SWOLLEN INTESTINAL LYMPH GLANDS, INCREASED INTESTINAL LINING INFLAMMATION IN ASD’S
WITH BOWEL ISSUES.
That's probably supposed to be 'Hyperplasia' not 'Hyperplaxia' or maybe 'Hyperlexia' but I have a tendency to read more into gut feelings than I should.
The persistent measles hypothesis formed the rationale behind Dr. McCandless' earlier experimentation with High Dose Vitamin A therapy. Reasoning that children in third world countries with Vitamin A deficiency suffer more severe complications from measles infections therefore Vitamin A has antiviral effects against the measles virus. Unfortunately some children had some very real adverse reactions to this theoretical treatment for a theoretical viral infection.
In March 2004 this message was posted to a Yahoo group:
From Sid:What nonsense! The, now abandoned, protocol is right in the DAN!
Guide and explains clearly that the rash, like pseudotumor cerebri, vomiting,
nausea, headache is a sign of vitamin A toxicity! This vitamin A thing has
gotten out of hand. Either people should use the 2 day protocol or forget
it!Sid.>From Jaquelyn: I totally agree! Dr. JMJaquelyn McCandless
I am curious, why is the protocol considered "now abandoned"? Michele
Maybe because a criminal investigation occurred over a child who had
hydrocephalus from pseudo-tumor cerebri due to very high and prolonged doses of
Vitamin A. I mentioned this about 3-4 months ago.
Lawrence G. Leichtman, MD
No word on the outcome of the "criminal investigation" but the High Dose Vitamin A protocol was modified shortly thereafter. Not much talk about Vitamin A these days even though Dr. McC saw spectacular results at the time. No, Low Dose Naltrexone is all the rage these days.
This is from the first LDN conference also at a prestigious location
A very low dose of the FDA-approved drug naltrexone has been discovered to be an effective up-regulator of the immune system. The new therapy, called low dose naltrexone (LDN), has shown remarkable effects on an array of illnesses including HIV/AIDS, cancer, and autoimmune diseases such as MS. The first conference concerning LDN will be held on June 11th at the New York Academy of Sciences in Manhattan. Recent clinical trials of LDN will be discussed.
So it's Very Low Dose then? Shouldn't it be VLDN? Never mind...
I highlighted "effective up-regulator of the immune system" for several reasons.
- There is very little in the literature to suggest that naltrexone is able to stimulate or upregulate the immune system.
- Some research suggests that Naltrexone is able to counter the immunosuppressive effects of opiates in addicts but that's entirely different.
- Naltrexone seems to suppress certain components of the immune system which is the opposite of the claim.
- Stimulating or upregulating the immune system may help with AIDS but exacerbate autoimmune conditions.
Well the language has changed to a the more vague Immune Modulation. No one in the DAN! community is able to decide in which direction the immune system may be dysregulated or which way it should be 'modulated'. It all sounds very scientific but if they can't tell up from down, hyper from hypo, or stimulate from suppress, it starts to sound like a big crap shoot.
Let's just call it what it is: Immune-Tinkering. No different from fixing a CD player by randomly adjusting trim potentiometers on the laser block. You might get lucky and tweak the right one in the right direction on your first try but without the proper test equipment it's hit or miss. It's like asking a sex therapist for advice on immunology. Nobody would do that right?
ACTOS FOR BRAIN-GUT INFLAMMATION
• PPAR – ACTOS (PIOGLITAZONE), PX
FOR PRE-DIABETES, LOWERS GUT
AND NEURO-INFLAMMATION,
REGULATES LIPID AND GLUCOSE
METABOLISM, SHIFTS IMMUNITY
FROM T2 HUMORAL (AUTOIMMUNITY)
TO T1 (CELLULAR)
. CLINICAL STUDY >300 CHILDREN, DR.
BORIS/GOLDBLATT, PROMISING
ACTOS (PIOGLITAZONE) is a prescription pharmaceutical used to treat diabetes along with a few off label uses. Apparently somewhere in the neighborhood of 300 children (that we know about) have been given this drug.
The results of this 'clinical study?' Promising? Where is this clinical trial listed and how are we hearing results before completion?
Is DAN! running out of vitamins and over the counter supplements and forced to turn to the world of prescription pharmaceuticals for the next big thing? Most DAN! doctors aren't even licensed MD's, or they are working outside of their discipline, and most are considered alternative practitioners as opposed to mainstream doctors but they are qualified to prescribe pharmaceutical products and experimental off-label drugs to treat autism? Yeah, as long as they aren't psych-meds. Those are frowned upon.
I thought the pharmaceutical companies were the one's responsible for the conspiracy to poison our babies, now their products are suddenly OK?
I have news for Dr. McCandless. Naltrexone at many different doses, including low dose, has already been used to treat autism many years ago and the results weren't very exciting. Of course the innovation here may be to modulate the immune system and to only use low doses but Naltrexone is Naltrexone. Unless of course it's formulated as a transdermal cream in which case it may be an extremely-very-ultra-low dose, assuming any gets through the skin, but how would you know?
Naltrexone is used to treat opiate and alcohol addictions and both have been proposed to be the cause of autism so maybe that's how it works. No, nobody thinks autism is caused by babies taking drugs or alcohol but many DAN! doctors believed or still believe that foods like wheat and milk act like drugs binding to opiate receptors in the brain or that yeast is fermenting sugars in the gut to create alcohol which causes these kids to act like they are intoxicated. No really. You can't make this stuff up.
Here we can get a feel for Dr. McCandless' grasp of medicine and the immune system.
UNHEALTHY IMMUNITY
FAILURE OF THE Th1 ARM &
OVERACTIVE Th2 ARM:
AIDS
CFS (FATIGUE)
CANDIDIASIS
MULTIPLE ALLERGIES
MCS (CHEMICAL)
CANCER
AUTISM
It's that simple folks. Just buy the book and you'll see. Unless of course your child turns out to be one of those Special Non-Responders.
posted by notmercury @ 2:08 PM
44 comments
44 Comments:
"A very low dose of the FDA-approved drug naltrexone..."
I know you mentioned it, but I find it funny how often their actual announcements seem to forget to mention what use the FDA has approved the drug for - it ain't autism. I'm sure they don't fail to mention it somewhere, but it's never upfront in the beginning. This is of course, as you point out, a 100% off-label use - in and of itself not necessarily bad, but popularity has a way of influencing interest. Remember Fen-Phen? Never mind that there may not even be any clinical trials planned for this off-label use.
They should have to call it,
"Experimental LDN therapy" so there's no question about for parents who may not dig, or people inclined to stop listening after the "hope and promising" part.
Great post NM.
:-)
Good work, NM.
"A VERY SPECIAL NON-RESPONDER"
I'm sure the child is very special. It's unfortunate that the grandma needs to qualify that with "non-responder". The kid probably picks up on such negative descriptions of her.
True enough Joseph,
I would have to guess that the child is the unwilling recipient of any number of experimental, off-label treatments but I may be wrong about that. I'm only assuming that anything she considers safe for her patients would be safe enough for her grandchild.
Thanks Dad of Cameron,
"Experimental LDN therapy" sounds more accurate. The cream is sold without a prescription so it is probably considered a topical use. In other words not systemically absorbed to any significant degree.
LDN is sort of a healthfraud fad as far as I can tell. Anything that cures just about EVERYTHING is a quack favorite, (see: Chelation).
So here's the list from the Lowdosenaltrexone.com website, stuff it cures....
What diseases has it been useful for and how effective is it?
> Bernard Bihari, MD, as well as other physicians and researchers, have described beneficial effects of LDN on a variety of diseases:
Cancers: Other Diseases:
Breast Cancer
Carcinoid
Colon & Rectal Cancer
Glioblastoma
Liver Cancer
Lung Cancer (Non-Small Cell)
Lymphocytic Leukemia
Lymphoma (Hodgkin's and
Non-Hodgkin's)
Malignant Melanoma
Multiple Myeloma
Neuroblastoma
Ovarian Cancer
Pancreatic Cancer
Prostate Cancer (untreated)
Renal Cell Carcinoma
Throat Cancer
Uterine Cancer
ALS (Lou Gehrig's Disease)
Alzheimer's Disease
Autism Spectrum Disorders
Behcet's Disease
Celiac Disease
Chronic Fatigue Syndrome
Crohn's Disease
Emphysema (COPD)
Endometriosis
Fibromyalgia
HIV/AIDS
Irritable Bowel Syndrome (IBS)
Multiple Sclerosis (MS)
Parkinson's Disease
Pemphigoid
Primary Lateral Sclerosis (PLS)
Psoriasis
Rheumatoid Arthritis
Sarcoidosis
Systemic Lupus (SLE)
Ulcerative Colitis
Wegener's Granulomatosis
You'd think that if it really EVER cured one case of AIDS that it would have made it on to the front page of the New York Times, wouldn't it? I've never heard of it curing a case of cancer, that would be big news, too, if it were true. And if it did cure AIDS or cancer, why in the world would anyone think it could cure autism? It's just so bizarre. Hey, they have ALS on there, I wonder if someone has tried to hook Dr. McScandles with Professor Stephen Hawking. Maybe he'd be a very special responder.
Dr. McCandless is on a video on the DAN! website where she postulates some stuff that might work on older kids who haven't yet responded to years of quacky treatments, she suggests going to DAILY shots of b12 since once every 3 days isn't doing it. She had some other ideas, none of which seemed in the least reasonable. The woman is a sex therapist! But no one seems to care about that. She doesn't really see little kids in a doctors office, at least not very often, she moved to Hawaii, I don't suppose that was to get closer to her clients.
She directs research by email on her Yahoo! group .. "tell me your symptoms... if the Janey gets really sick, that's a good sign"
"NON-RESPONDER"
What??? Is McSexdoc beginning to forget which office she is workin' out of on which days?
Both Not Mercury and Camille have called this one. Thanks for the great report Not Mercury!
This tinkering around masquerading as medicine just goes on and on. I am still trying to figure out why it can legally and so blatantly go on with no apparent shame or repercussion.
Or why with each succeeding wave of "non-responding", folks are willing to continue to worship these Pied Pipers and shell out the money to do so.
Personally I think that everyone of these folks should be compelled to undertake the treatments they propose...perhaps they might then reconsider whether the many side effects are a "good sign"
Regan
After a quick search in Google scholar, it looks like Naltrexone has been evaluated in several clinical trials for autism, and has been consistently found to not be much better than placebo. The "low dose" thing sounds a bit like homeopathy to me. From the studies I infer that it is the responders who are "very special".
Hi No Mercury
I can understand that the tone of your post is related to the apparent lack of serious consideration of the issues and the kind of presentation of Dr Mc Candless. I can understand that you dislike the way of presentation of the kind of ideas discussed- that can be understood as proven facts such as they are presented- is not appropiate. I can understand that the path of extrapolation –as for sure for all- is not correct. Even more, I can have disagreements with the proposed treatments.
What I disagree is that because of the messanger the message is wrong completely per se.
http://www.nizkor.org/features/
fallacies/index.html#index
You say
Never mind that each of these things are mere speculation at best and reflect current thinking in the DAN!/Bio-Med community. Not one has graduated from the status of hypothesis up to theory
For me, not one has demonstrated that for all the population of ASD with the current available published science these are proven collaborators for ALL, But at individual cases, things are different in my personal experience.
María Luján
Thanks Maria,
So you disagree with my statement: Not one has graduated from the status of hypothesis up to theory?
Which one of the DAN! hypotheses now qualifies as a theory?
Hi not mercury
Again, As I told you at an individual level the hypothesis can be /can be not confirmed. It depends on the individual presentation of autism in each child, evaluated under trustable tests in trustable labs under trustable ranges. As I told you once, If you are interested I can contact you by e-mail and explain further.
For me the change from the hypothesis to the theory to the confirmation of depends on the individual presentation of autism.
María Luján
Hi Not mercury
For example, about opiate and gluten
1-Gluten exorphin C. A novel opioid peptide derived from wheat gluten.FEBS Lett. 1993 Jan 18;316(1):17-9.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=
Abstract&list_uids=8422933&
query_hl=5&itool=pubmed_docsum
2-Gluten exorphin B5 stimulates prolactin secretion through opioid receptors located outside the blood-brain barrier.Life Sci. 2005 Feb 25;76(15):1713-9. Epub 2004 Dec 20.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=
Abstract&list_uids=15698850&
query_hl=5&itool=pubmed_docsum
But at individual cases, things are different in my personal experience.
I agree with María here in the sense that a specific kid's autism might have a treatable cause. For example, a kid might have phenylketonuria, which is treatable with diet. And there might be many treatable causes we don't know about.
But assuming causes and trying one treatment after the other, just in case, does not seem advisable to me. Also, if a child appears to improve on the latest thing that was tried, this does not mean that one thing actually helped. It's really necessary for the science to prove that these things help a subset of children, and to identify exactly which subset of children they do help.
Hi Joseph
You say
It's really necessary for the science to prove that these things help a subset of children, and to identify exactly which subset of children they do help.
I agree...but this does not exclude that an individual level they do help.
You say
But assuming causes and trying one treatment after the other, just in case, does not seem advisable to me.
To me, neither. But to assume in advance that nothing is present that is/could be potentially treateable is not advisable to me.
For example. Se has been reported be low in ASD in some scientific literature . What I hope from a doctor , if I tell about, is the attitude let´s to test adequately in trustable labs. After this, let´s go to discuss the right supplementation- what form, what dose, how much time, what long term effects of use information available is present, what short terms effects can be present. After proper checking periodically in blood, have new decissions about. So, for me , this is the right application of the idea. I don´t care who presented the idea if it is a good one, that if it is applied in the right way can help at an individual level.
The wrong one is giving Se in uncontrolled doses, form and time and unchecked-it can be dangerous too much Se-, without periodic test and only “Because”. The first one requires many times from a mainstreamed doctor a lot to study at an individual level-because of potential interactions-, a lot of reading of the available literature and a lot of consideration of the parent´s concerns . It is a 24/7/365 work. How many doctors are prone to do this with all the unknown biochemical imbalances that a child with ASD can have? What doctor is asking when an ASD diagnosis is done Do I have comorbilities here-not in terms of HM only I am talking of thyroid, adrenal, pituitary function, GI function, nutritional imbalances, immune imbalances, celiac disease, pain, etc? What doctor is asking Do I do all I can for this individual presentation of ASD? He/She does not need DAN! to search. He/She needs to study/read/research. Isn´t this ethics?
I want ASD expert doctors-mainstreamed or not- with ethics -beyond with basis in science- with his peers and in his/her relations with labs, requiring them honesty and strict sticking to correct and safe procedures. We have in relation to evaluation of doctors in autism
a-emotional aspects related to the respect to the ASD child, his/her parents and the view of what ASD is and prognosis,
b-rational aspects considering the need of supporting from a position of knowledge and to present the serious challenges that ASD put on a family,
c-open mind aspects related to common sense and hearing the parents and published science based aspects to take into account.
d-ethics concerns about analysis of benefits/risks.
It is not easy to find such a doctor
María Luján
Regan said: Personally I think that everyone of these folks should be compelled to undertake the treatments they propose...perhaps they might then reconsider whether the many side effects are a "good sign"
Hi Regan,
Good to hear from you again. I agree, that would be a good rule, weight adjusted dose of course.
I do think McCandless reported her experience with LDN as increasing libido or something. Or as anonymous asked:
What??? Is McSexdoc beginning to forget which office she is workin' out of on which days?
Maria said:I want ASD expert doctors-mainstreamed or not- with ethics -beyond with basis in science- with his peers and in his/her relations with labs, requiring them honesty and strict sticking to correct and safe procedures.
I want these things too Maria. It shouldn't be too much to ask but in many ways 'mainstream' medicine has helped to create the void that is often filled by the quacks and hacks.
Parents of a recently diagnosed autistic child are seeking answers and they aren't getting too many from traditional doctors.
The natural thing to do is to check the web where they will find wonderful stories full of hope and recovery. Who wouldn't want to order McCandless' book after reading the summary on Amazon? It's full of excitement and promises.
Hi Not Mercury
You say
I want these things too Maria. It shouldn't be too much to ask but in many ways 'mainstream' medicine has helped to create the void that is often filled by the quacks and hacks.
I agree wholeheartly. This is why I always consider a lot my words with other parents. We do what we can to do the best we can for our children. For many parents, they have not the background in chemistry or medicine and they do a lot of effort to understand science. The lack of support , the presentation of Autism=Hell; Autism =Cancer, treatment =ABA only by mainstreamed medicine is widespread. The " do not test nothing because it does not worth", also. However, not all so called alternative medicine- or not mainstreamed - is quackery for me. The problem is to know who is who.Besides, we are all polifacetic and diverse. Doctors are human beings and in this field their defects ( of character and professionals) are much more evident. My point is to not generalize. Some mainstreamed doctors are very close minded. BUT not all. Some non-mainstreamed doctors are not serious. But not all.
María Lúján
"The problem is to know who is who."
I thought that was the purpose of clinical studies--to help make that distinction and to test those hypotheses.
If, however the goal is not to believe the results, esp. if reiterated by multiple studies (and I am referring to decently designed ones--not just untested hypotheses, purely correlative discussions, extrapolations, and selective samples)...then the sky's the limit.
I admit that the wheels of medicine move more slowly than I would like, however I prefer that to telling (or selling) me something that has specious evidence simply to fill a vacuum. My opinion is that that is the more unethical route.
If alternative medicine can stand up to the standards of scientific testing, then the hypotheses have merit, and it is no longer---"alternative".
It is simply...medicine
Regan
Hi Regan
The problem is that by the required design,because of the question to be answered, and the analysis many times the clinical studies are inexistent, focused very narrowly and analyzed with generalization.
You say
If, however the goal is not to believe the results, esp. if reiterated by multiple studies (and I am referring to decently designed ones--not just untested hypotheses, purely correlative discussions, extrapolations, and selective samples)...then the sky's the limit.
This is not what I tried to say. Please clarify.
You say
I admit that the wheels of medicine move more slowly than I would like, however I prefer that to telling (or selling) me something that has specious evidence simply to fill a vacuum. My opinion is that that is the more unethical route.
I agree
I used the word only because it is known this way. For me medicine is medicine
MAría Luján
Hi Maria,
I apologize for the implication that you personally might be "rejecting" the results, or are being unethical. That was not the intention. It was just a statement of my opinion in re: how one might sort the chaff from the wheat.
I was just noting a tendency in some circles to present a hypothesis and then reject tests that do not support the hypothesis...however the nature of the tests are, rightfully, to also report negative or alternative results because that is a demonstration of whether the hypothesis has strength, needs refinement or was just "an idea".
I think that we are on the same page in re: small sample, single studies. However when something is tested by multiple unassociated research groups and are not registering significant effects...the probability of the hypothesis being valid becomes very small.
If someone is going forward on a theoretical basis and has no clinical basis, and has a vested financial interest, all I ask is that is that they say so, out loud and upfront. Hence my irritation with some of the many, many, many "treatments" and some of the practitioners that are out and about. I am tired of the hoopla of the **new** possibilities when the dead ends and mistakes do not receive a comparable amount of publicity.
I apreciate the blogging skeptics for at least asking, "show us the evidence, please".
Regards,
Regan
Hi Regan
First, thank you very much for your initial words. I understand the angry with the situation you post-because I dislike too- and certainly sometimes the possibility of misunderstanding is present.I do my best to research from trustable and serious sources.
I agree with you. In fact I am also very worried about the amount of known as you say " **new** possibilities " and how serious science is misused/twisted to sell "cures" in 50 ml bottles.
My concern is that this situation creates the unwanted possibility that real paths to be considered seriously with high tech and high level procedures to be dismissed because of the misconduct-whatever the kind of- of those who propose it.
As a mom of an autistic child I am very careful and concerned about this. Also, there are a lot of research that is related to autism ( in genetics, epigenetics, immunology, virology, toxicology, etc) that has not been analyzed in an integrative of autism, considering all the aspects with care-but it is published in serious journals. And surely there are a lot we do not know. In this sense I see the Work of Dr Herbert as an initial point, to be improved and completed and further researched, of an integrative view of autism. Perhaps you are interested for example about other research- that the most controversial one-such as in related genetics and toxicology or virology that can be of importance in autism.
Please let me know.
Thank you (again)
María Luján
Hi Maria,
You said: In this sense I see the Work of Dr Herbert as an initial point, to be improved and completed and further researched, of an integrative view of autism.
What about Martha Herbert's work do you find compelling? I've read her published work and frankly I haven't read anything original or new from her.
She writes a good review but she could certainly stand to be a little more objective in her writing style.
Is there anything in particular you've read that I may have missed?
Hi not mercury
For example this manuscript
http://www.ifsh.org/EnvironmentalIllness/Autism-ABrainDisorderOrADisorderThatAffectsTheBrain.pdf
and a recent one, a review in press
Autism and environmental genomics presents the attempt to change the paradigm of a genetic only condition for autism.
I have this one-I requested to the author. Please contact me. if you are interested on the reading
If you want I can discuss them further on weekend.
Sincerely
María Luján
Hi Maria and Not Mercury,
I think that there is some interesting stuff on first blow of M. Herbert's hypothesis.
http://web.mit.edu/autism/Herbert-work.htm
However there are a few interviews attributed to her on a google search which might make me scrutinize the work against other studies to satisfy me that research is talking and not philosophy.
That said, epigenetics and regulatory foci make sense to consider--for example, some of the recent news on Pten.
Back to the topic, presenting a hypothesis in a research paper, peer-reviewed review paper or colloquium, where you have a chance of review or scrutiny by academic and research peers is a jump up rom something very close to an infomercial selling a product.
Best,
Regan
Hi Regan
I think that epigenetics is serious stuff, even when the ideas ( and the use of research that support it) can be completed or improved with the research in the next coming years. BTW, new work of
Crews, Mc Lahchlan presented May 11, 2006 Epigenetics, Evolution, Endocrine Disruption, Health and Disease in Endocrinology for example is in line with her ideas and there are several research groups working in the area.
you say
is a jump up rom something very close to an infomercial selling a product.
only if you buy the product for me.
The support in peer published journals and the support of epigenetics role in MeCp2 functioning is very important, as it is about the role of methylation ( or not) of DNA in health and disease. If someone use this serious research for promoting something for me the problem is to buy it- and I dislike the fact per se, but the underlying idea- and research support related can be strong.
"Genetics proposes, Epigenetics disposes" MEdawar and Medawar
María Luján
Naltrexone at doses >50MG effectively block endorphin production, thereby reducing pleasure from alcohol (hence its use in alcoholism). However, at the much lower dose range of 1.5 to 4.5 Naltrexone's endorphin blocking effect is mild and the body responds by producing even more endorphins. The endorphins, in turn, mediate communication between the CNS and the immune system, thereby helping restore immunological competence. That is why Naltrexone has been anecdotally useful for MS.
Aside from that, I'm curious as to why bloggers tend to be so in-your-face, sarcastic, and mocking. My statement of curiosity is not rhetorical. What ever happened to humility, dialogue, give and take, etc.?
-- Pat
Pat said: The endorphins, in turn, mediate communication between the CNS and the immune system, thereby helping restore immunological competence.
Thanks Pat,
I don't doubt that Naltrexone can impact immune function, "restore immunological function?" can I bother you for a cite for that?
"Aside from that, I'm curious as to why bloggers tend to be so in-your-face, sarcastic, and mocking."
Regarding sarcasm, I can only speak for myself, and I don't mean for that to sound sarcastic.
Humility, dialogue, give and take, etc.? Tried it for years. What ends up happening is humble, give-and-take dialogue with quacks and charlatans is a form of endorsement by default.
Very often the take-away from humble, give-and-take dialogue will be incorporated into product literature in time for the next complimentary and alternative health-fair.
So yeah, I tend to be a little sarcastic and mocking when it comes to professional autism shamans.
I'll save the peace, love, and understanding, acceptance and tolerance for my kids and the legitimate scientists who are willing to contribute to legitimate autism research.
I am just beginning to research low dose naltrexone as a possible treatment for my autistic child.
I have not come to any definitive conclusions as yet. However, I am struck by a couple of things as I read your postings. Firstly, I can review Dr. McCandless' qualifications as it is a matter of public record. However, I have no idea who "Not Mercury" is and I always like to "consider the source" before I consider the validity of what is being said.
Secondly, my child, who was very severely autistic as a young child, has been greatly helped by the biomedical/Dan approach you ridicule. When we started this journey 20 years ago, I was told by mainstream medicine that he would not progress and that there was nothing to be done to help him. He now drives a car, goes to college, and has a relatively normal life. In the small autism parents group that I belong to, we have had several complete recoveries using the basic DAN approach. As parents, we have to weigh trying something experimental or facing the likelihood that our child will be disabled for the rest of their lives. My rule is to try the least toxic interventions first, see if I get a result and move on from there. Scientific? no. Effective? yes.
You seem to be quite bitter and angry and appear to feel that it is your job to expose autism "charlatans". Did you have a bad experience? If so, could you tell us about it and what led you to create this blog?
Anon:"You seem to be quite bitter and angry and appear to feel that it is your job to expose autism "charlatans". Did you have a bad experience? If so, could you tell us about it and what led you to create this blog?"
No, I'm not bitter and angry. Sorry if it comes across that way. I am not impressed with these DAN! doctors who claim to understand causes and treatments when it's obvious they are making it up and experimenting on kids as they go along.
If you are thinking about trying Naltrexone don't let me stop you. Some doctors, real doctors, have used it with mixed results. It appears to be relatively safe so why worry about what I think?
As a matter of fact I wouldn't recommend seeking medical advice from the internet one way or another.
I'm glad your son is doing so well but I have to ask, why do you want to put him on Naltrexone? How does he feel about the idea?
You are not impressed by DAN doctors? Which DAN doctors other than Dr. McCandless are you speaking about? I would imagine that just like any other group of professionals, quality varies considerably from practitioner to practitioner. It hardly seems fair to paint all DAN doctors with the same broad brush. Are you a medical doctor or researcher? Have you ever attended a DAN conference? What are your qualifications for making such a determination?
You have an interesting habit of jumping to unwarranted conclusions -- I said my son was doing well, I didn't say he was completely recovered. He still has minimal interest in people and a relatively restricted range of interests, so I do not consider him 100% recovered. As to what my son thinks about taking LDN? I haven't broached the subject with him, because I'm not convinced we should try it. Your insinuation that I do not take my son's wishes and long term interests into consideration when making these decisions is insulting and shows a profound lack of understanding of the what motivates parents of autistic individuals.
Also please do not assume because I am responding to you on this web site that I base treatment decisions on information I get from the internet or a google search. I look at the published research literature, talk to medical professionals, other parents, and read as much as I can from as many credible sources as I can. Sometimes I surf the web just to see if there is something new I should be aware of. I have no burning desire to put my child on naltrexone or any other drug, if anything my bias is not to use pharmaceutical agents because of their obvious (and likely) potential for harm. You may be right about Dr. McCandless and LDN. On the other hand, it is possible that you are wrong. Although it doesn't appear to me that you ever consider that possibility and the harm you may be doing.
It is also interesting to me that you have absolutely nothing to say about the documented harm traditional medicine does on a regular basis. I would find your arguments more compelling if you took a more even handed approach. By the way, you still haven't identified who you are and why you are on this crusade.
Hi, sorry to be brief here but I don't have much time. Just thougtht I'd post a few thoughts about the LDN. I've been taking it daily for 4 1/2 years now to slow the progression of my MS and I do believe it's the very best thing out there for MS. As far as clinical studies. It's been an uphill battle for many of us for years because you see, no one has the money that it would take to pay for clinical studies. We've been trying to raise the funds as patients ourselves. BigPharma would not be interested because there is no payoff. You see, Naltrexone is out of patent. Not only would they not be interested but LDN would take away billions of their revenue. Oh and I monitored Dr. McCandless's yahoo groups for a time and I can't tell you how many teary eyes I had after reading of many parents who post that their children are doing something or even not doing something for the very first time. Sorry to be brief but I must run. Food for thought people. JoyceF
you seem like a very hostile person who is very dismissive of the efforts people are making to cure their children of autism. i read somewhere on one of your blogs that was saying something like how you dont accept the phrase 'you dont know what its like'. well, if you dont have an autistic child then you dont know what its like, too bad if you dont want to accept that truth, but you dont. my son has autism, i know what its like, but i dont know what its like to lose a child and i dont pretend to. i can accept that. some things you have to experience in life to understand. anyways, i just became disgusted reading your blogs and seeing the arrogant way you talk about others efforts to heal their children. you obviously lack compassion. you shouldnt blog. you should keep your sardonic opinions to yourself or just shut the f up and go out in the world and try to HELP people instead of offering your derision. phil commander
Dear Not He,
Why the bitter tone. Do you have a child with Autism? I do. Have you seen some of these children at school and in a home setting with there parents? I challedge you to spend sometime with them. Yes, it's a good thing people like you write these things because we need other opitions, that's why I read your Blog. ( I wonder what Pharm Co. your work for, of coarse if you don't, they will gladly peal off a few billion to supress their poisoning.) My spouse and I have medical and science backrounds and we would never believe any of the DAN! info, except, that after the Dx of our son. We were told to "get used to this" and thrown some pysch Rx's.
Our son is mainstreamed now and doing quite well now THANKS TO THE DAN! protocals. If we waited around for rear-sch, he would still be in a horriable vaccum of a life. YOU may know some science, but, it seems in your writing that you lack a heart and a soul. Next Blog why don't you write about the HPV vaccine push, why Mereck (22.8 Biilion Drug Co) is pushing manatory use on 11 yr. females with very limited acutual testing on 9 - 15 yr. Answer: Smith-Kline will be out with another version just around the corner and they want to beat them $$$. Unforunately, it's uusally all about the $$$, who's paying you? Signed, IT IS the MERCURY!
I don't know why people here are saying that mercury is not a cause of autism and autoimmune disorders and that LDN doesn't help. If you look up the relationship on pubmed there are many articles.
Not mercury, if you don't mind me asking, has anyone in your or the mother's family history line ever had an addiction to either smoking ? Well gues what, there is a lot of mercury in cigarettes. Tobacco leaches mercury from the soil. Not to forget too that mercury is a by product of combustion engines, which dumps 20,000 tons of this stuff into the atmosphere every year.
Your ideas seem to state that because some are non-responders that all the ideas behind DAN, mercury and naltrexone are false.
Have you ever known someone with arthritis or ms that has responded to treatment, while others have not? Well let me introduce myself. My name is Dan, nice to meet you. There, now you know someone with autoimmune disorders who is a non-responder. While this is not autism it just shows you that your way of thinking is wrong. Your saying that because someone is a non-responder that all should be non-responders or if somone is a responder that all should be a responder. Its completely not how life works.
The points that you are failing to realize is that with some people with autism, the damage is already done. Just look at some of the evidence of mercury and nueronal death. Once the mercury destroys the neurons there is not much that can be done. Sometimes they grow back but sometimes they don't. That's how nature works. It doesn't fit neatly into your idea of black and white.
Also look into mercury half life and the enzyme that helps the body get rid of mercury. In case anyone is wondering, mercury has very long half life. And some people lack the enzyme to reduce mercury naturally in the body.
Just think about this stuff for a while and try to see these things from a distance. Just because there are no studies for things or some studies come back negative doesn't mean that its not true. People thought the earth was flat for hundreds of years before someone proved them wrong. Correct? Do you understand what i'm saying?
This is the first and last time that I will visit this blog--but I couldn't leave it without first giving thunderous support to those parents who, correctly, point to the harsh, sarcastic and dismissive tone with which "Not Mercury" writes comments. I came to this blog as a parent of a two-year old child who is not yet speaking and has repetitive behaviors. Like any other loving parent, I was searching the internet for any and all good information that would enhance my understanding and supplement what we learn from pediatricians, early intervention, and specialists. The last thing I was looking for was so much negativity. The doctor you spent so much time tearing down is likely not reading your blog and not harmed (though I wonder why would you EVER aim your dangerously sharp tongue at her grandchild?). However, a new reader, like myself, could have left your blog more informed and duly fore-warned rather than frustrated and questioning your motives. You are missing oppotunities to affect change by the manner in which you choose to communicate. Please use your forum to help rather than hinder.
Hey Not Mercury,
Don't let these "I have a child with autism" people get you down with their comments about your sarcastic tone. These autism charlatans taking money for quack therapies deserve nothing but ridicule and sarcasm! As the parent of two autistic children, I have been courted by every "Autism Shaman" (beautiful phrasology, btw) within a 150 mile radius. All they sell is false hopes wrapped in lies. Give 'em hell!
If the point of your post is to warn people about quack medicine, then please do so appropriately but don't dismiss all research as junk science.
You can find snake oil for any disease not just autism. That does not mean that autism does not exist, or that as a spectrum disorder may have many different causes and potential treatments.
Many diseases (not just Autism Spectrum Disorder) are complex and may involve multiple organs or disease processes. Most research on all diseases consists of small insights or pieces of a very large and complex puzzle. There are very few "eureka!" moments of breakthrough results or cures. Most of what we have is trying to fit many small pieces of a large puzzle together.
Is naltrexone safe and appropriate for your child? That's a question for people to discuss with their pediatrians, psychiatrists or other medical specialists.
For example, one can find intriguing results on pubmed, NIH and reputable journals on naltrexone for autism, diabetes , MS, Crohn's disease. Does autism have an auto-immune system component or does naltrexone even work? - I have no idea, but unless you've got a few millions for a double blind placebo controlled study, or want to wait 5-10 years for one, an off label use may be safe and appropriate for you.
It's important to be skeptical and think critically, but it's also important to have an open mind.
I guess that's how things may have looked back in May 2006. But it's now December 2007 and the results achieved with Autism speaks for itself. http://www.lowdosenaltrexone.org has information from the 2007 conference in Nashville. LDN is the real thing, it's helping people with all sorts of AI type illnesses. I take it for MS going on 5 years, my dad started taking it this March after stomach cancer was diagnosed. They gave him 6 months to live. The CT scan in September showed his tumors shrunk in half.
This is the best damn snake oil I ever found. And less than $20 per month without insurance. Feel free to scoff and bury your head in the sand, many of us appreciate our better health.
Namaste
I have a autistic son age 27 who has been seriously self injuring these past five years. He has been on several medications and none have lessened his symptoms. He asks me to buy him a gun so he can kill himself. I love my son and although I respect his wishes on his wanting to end his suffering I would rather try him on LDN first or anything else fairly reasonalbe with little side effects. At this point I would take him to a medicine man to shake rattles over his head to ease his suffering if DAN suggested it.
Hey guys, i'm actually doing my thesis on the genotoxic profile of LDN (Low Dose Naltrexone) the good news is that it appears to be non mutagenic and non cytotoxic, which is of most importance to chronic patients who will be taking LDN for the remainder of their lives. It's still unknown how exactly it works, just that it appears to have some effect on the immune system, if anyone has any useful information for me including references, that would be great, send it to a3cyp@yahoo.ie
Ok Im new to this autism. My stepson, according to his mother, has autism. She told me he has been diagnosed as bipolar, schizophrenic, manic depressive and adhd. Can that be so? He is on focalin, clonidine, seroquel, vistral and lithium. She told me there a doctor in WV by the name of Jayrand. Has anybody heard of them? Thanks for any and all help.
I have had Crohn's disease for 5 years and have been told to ake over 9 different Rx drugs. My health has gone up and down over the years and I was told that at the rate that I was going that I would probably only progressively get worse as time went on. i would have flare ups that would leave me house-bound because the pain was unbearable.
I began LDN treatment and within 2 months I was able to discontinue 6 of my Rx medications. Today I am ONLY taking LDN. I have had no flare-ups and no problems. I feel that LDN is to thank. I find it sad that more individuals on this site want to enter with a closed mind when considering this treatment. Why would a Dr. promote something as simple as LDN treatment when it is so inexpensive and there is NO BIG pharma involved making money? I just do not understand the resistance. I think that true studies should be done which would show LDN's effects. If only 10% of the people using LDN got relief like myself, then it is worth it to know! If something doesn't work you one, that doesn't mean that it won't work wonders for another!
Make sure that your Dr. is familiar with LDN because it MUST be prepared properly for the patient to receive benefits.
GOD Bless all of you!
Throat cancer often develops from squamous cells on the mucosal surfaces of the larynx, pharynx or mouth. Smoking cigarettes and drinking large quantities of alcohol can increase a person's risk for developing throat cancer. Head and neck cancers account for about 5 percent of cancers in the United States. Throat cancers usually develop around age 60, and men are 10 times more likely to develop them than women. http://www.chantixhome.com/
Me thinks "NO Mercury" must be a vaccine doctor. Anyone else with common sense wouldn't be attacking the autism community this way.
LDN has been helping many, not just those with autism.
Hey No Mercury, go
treat yourself to a vaccine cocktail and call us in the morning. That is if your neurons are still firing.
I work in the health field and have seen many patients benefit greatly from the use of LDN, some to remarkable degrees. No medication works for every single person that tries it, but LDN certainly does wonders for MANY sufferers of various autoimmune diseases!
Hi, I'm in the Stanford Phase II Low Dose Naltrexone for Fibromyalgia Clinical Trial. The Phase I Study was successful. Why would Stanford University waste their time doing clinical trials on "Low Dose Nonsense"?
Tamra
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