Autism and CFS: This most hopeful I have felt in a long time

Discussion in 'Fibromyalgia Main Forum' started by desertlass, Mar 13, 2007.

  1. desertlass

    desertlass New Member

    My dh started reading to me an article in the most recent Discovery magazine about autism, and the changing theory on it, and how they are starting to treat it SUCCESSFULLY! It is no longer being considered a genetic set-in-stone issue, but the article cites the direct link between autistic popluation clusters, areas of toxic environments, the effect on the immune system and a neurological brain illness. The title of the article is on the cover-- "Understanding Autism: The Answer May Lie in the Gut, Not in the Head"

    I kept interrupting him and saying, "but that's what is going on with the ImmSupp board!" I mean, the way they are treating these kids is virtually the same as what some people on here are doing. Some of these autistic kids are coming out of it, even after they are almost fully grown! Some of them are showing measured signs of improvement after being treated for inflammation, fungal issues, heavy metals, food allergies and the like. The Defeat Autism Now (DAN!) center that is at the forefront of this was created by a PSYCHOLOGIST whose son had autism. (Hmm, now why didn't he focus on cognitive behavioral therapy or reframing his son's thoughts, but lest I diverge...)

    I looked up the posts that are right here on page 1, about glutatione, methylation, etc. and WINSOMME (Bill) has a great post with links about the connection between the two illnesses, the doctors at the edge of this research, and where it is going. I think we should be paying very close attention to this, and not let it get buried or fall off the page. After going through chelation for mercury, an 11-yr.old said to his mother, "Mom, I'm back from the dead". Does this ring a gong for anyone? However, they are in the same position we are in, where one issue is not going to be the same for all-- there are individual differences, levels of severity, and some things can only help so much. It seems like they are experiencing the same tentative hope that we are.

    If they are making strides in one area of a brain illness, then lets hope that they will pave the way for other less funded, studied and treated groups, without having to re-invent the wheel. If we are hitting brick walls for getting CFS studies funded, then at least we can benefit from other areas that are not. Autism is currently receiving $1 billion, and rightly so, because it is on the rise, along with all these other devestating neuroimmune illnesses.

    I looked to see if the article was on Discover's website, but I couldn't find it. I will try to post it when dh is available-- not able to do something like that just now. I can't even begin to note or explain all the issues they raised: gene expression in the immune system, oxidative stress, basal ganglia inflammation, cytokines, sensitivities to chemicals and medication, mitochondrial dysfunction-- all the stuff that we read about with our own issues.

    Just think-- only a few decades ago, they were sure that this illness was due to a "refrigerator" mother. Think of all those mothers who blamed themselves for not being loving enough. I hope they are still around (if not completely crippled by guilt) to see this day.

    Hard to "curb my enthusiasm", but hope is hard to come by on some days,
    Lisette
  2. deliarose

    deliarose New Member

    I'll have to get my hands on that article. I have CFS, nephew is autistic, and I just tried one part of the DAN/Yasko protocol and it seems to be working for me.

    I must buy the books, Pangborn and Yasko's, but there does seem to be a lot of overlap.

    Nofool said there was no proof that these protocols were working for autistic kids. Maybe he should read this article.

    I'm always skeptical of sweeping statements like that.. Has he spoken to all the autistic kids and their families who have tried this approach>?

    Course I would like it to work. Autism is a horrid affliction.

    Delia
  3. deliarose

    deliarose New Member

    Rich Van Konyenburg .. an independent CFS researcher is helping some CFS folks navigate the Yasko/DAN autism protocol over on another listserv.

    If you're interested it's at CFSFMexperimental yahoo groups. It's the Yasko one.

    Cheers
    Delia
  4. pepper

    pepper New Member

    uses the same treatments for autism as he does for CFS. When he gives me the treatment handouts, he says to just substitute "CFS" wherever it says "autism". He is having some success with glutathione, methylcobalamine and MesoSilver among other things.

    Pepper
  5. deliarose

    deliarose New Member

  6. desertlass

    desertlass New Member

    My oldest daughter has so many "Asberger-like" (mild autism) problems, except she doesn't quite fit the criteria, so she has been a mystery to us, as much as my CFS/FM has been a mystery, over the years. There are similarities in personality with my dh's grandmother and sister, as well as some of the phsycial problems that now seem to be arising, mainly in the GI tract, leg pain, and chostochondritis.

    My younger daughter doesn't have any behavioural problems, but is kind of a mini-me, physically, so of course I worry for both of them when it comes to FM or CFS. That is why this is so exciting to me. I was so worried that all of this was somehow "hard-wired" into them, and that my husband and I had passed it on to them (the FM from my mom as well), and there wasn't much we could do right now besides lifestyle enhancement.

    The idea that gene expression might also be something that is created by the environment (and passed down not through genes but inherited through the womb environment) feels like another length of pathway being laid down before me in this labyrinth. I don't know if I have the courage to walk it yet, but just being able to see with more clarity is immensely relieving. I don't know what I would do without this board: I feel all "verglempt".

    I'm all for accepting people for the way they are, and I do believe that there is a "hardware" to all of this that may never be changed, but if we can alleviate some of the struggle through the "software" it's worth a try. I'm not expecting cures and miracles, but sometimes it's nice to be pleasantly surprised!

    Sorry, I know my posts tend to be long. Occupational hazard.

    Thanks for replying,
    Lisette
  7. desertlass

    desertlass New Member

    Wow! He is brave to step out and make such a definitive statement connecting the two. Can you come back and tell us more?!

    Anyone else?

    Also, do autistic children seem to be at risk for viral or bacterial infections as well? They didn't go much into this aspect of neuroimmunology in the article, but maybe it was there in more subtle terms. I'm still learning all of the medical jargon.

    Does part of their treatment involve anti-virals, etc. as part of the detoxification process?

    This might be a good thing for all those who are struggling with AVs, MP, or might shed more light on why guaifenesin seems to work for many FM patients. There are so many ways to approach detox, and how to support the body with that process, that I am overwhelmed. Guai did not work for me, but I've always thought I should revisit it someday.

    Has anyone ever taken the A,C and E antioxidants or megadosed on C to boost glatathione production if they were not able to tolerate whey? Is this a valid approach according to any research?

    My mind is abuzz--

  8. desertlass

    desertlass New Member

    Hoping people will come into this thread...

    Has anyone else ever heard of a patient with CFS being given the same info for Autistic patients other than Pepper?

    Within the autism community they are calling this a "Copernican-scale shift in our approach to this disorder..."

    I think that is outstanding because it means a lot to all the other cognitive and neurologically impacted patients will get that much further down the road.

    The photograph accompanying the article shows a scan of a child with a bloated stomach. The caption reads "Gastrointestinal problems like a swollen belly are common with Autism patients".

    The introduction to the article is "The devestating derangements of autism also show up in the gut and in the immune system. This unexpected discovery is sparking new treatments that target the body in addition to the brain."

    Does anyone else think that CFS research needs to partner up a little more closely with autism research, since it looks like there are already some doctors who are leading the way toward that?

    I'd love to talk more about this with anyone who's interested...

    "Buehler? Buehler? Anyone?" (Flashback to the 'eighties-- "Ferris B.'s Day Off")

    Lisette
  9. desertlass

    desertlass New Member

    Here is part of the article that stood out to me:

    "Jill James, director of the Autism Metabolic Genomics Laboratory at the Arkansas Children's Hospital Research Institute (and professor of pediatrics at the University of Arkansas for Medical Sciences) has found that many children with autism do not make as much of a compound called glutathione as neurotypical children do. Glutathione is the cell's most abundant antioxidant, and it is crucial for removing toxins. If cells lack sufficient antioxidants, they experience oxidative stress, which is often found with chronic inflammation.

    In her most recent study, published in the American Journal of Medical Genetics in 2006, James found that common gene variants that support the gluathione pathway may be associated with autism risk. Intriguingly, this pathway is linked metabolically to the methylation pathway. Methylation is a fundamental biochemical process that helps regulate which genes are expressed; abnormal methylation can cause disease. Because the pathway provides the precursors to glutathione, impairments in methylation can also lead to oxidative stress."

    I'm sure you can all see why I would feel a little twilight zonish after reading the posts on glutathione/whey/TF and so forth by Delia, Winsomme, Elisa, Lisa P, Mikie et al, and something else on how glutathione being the only antioxidant that can cross the blood/brain barrier-- which would explains to me why there is a lot of focus on this now. Sometimes when one is sifting through all this information it is hard to understand why some things are important to pay attention to, and at least file away for later. It's all too easy for me to just think, "Oh here goes another bandwagon," but if we could just get our wagons hitched together and powered by the right engine, then maybe we can all get to our destinations, even if we have to diverge at some points along the line.

    On the other thread, Mike posted the article from the ICFSA conference on glutathione, for anyone who wants to copy it. Winsomme also had a lot of links that will at least give me something to read while I'm in this flare.

    None of us have time to wait for the Medical and Complementary communities to come to a concensus. So, in place of concensus, we need to look for links, similarities, universals, even if they end up to be specious, because the fragmentation that occurs in all of these specialization is what does us the greatest harm in our quest, in my humble opinion.
    [This Message was Edited on 03/13/2007]
  10. Elisa

    Elisa Member

    Brilliant research Desertlass!

    I have also been looking into the autism and CFS connection. Since I was having so much trouble with the undenatured whey protein - and knowing it was so critical to health...

    I have also been researching Dr. Amy Yasko's (a leading autism expert) recommendations for unblocking the methyl pathway - through specific supplements. She has a website.

    In addition, I've been searching for DAN doctors - who would be willing to treat me - they usually specialize in pediatric autism patients only. I found a doc in my area after I called a compounding pharmacy that offers glutathione - IVs, gel, neb form. So I asked them who prescibes this stuff - because no doctot I have gone to ever even mentioned it (except Dr Cheney). They lead me right to a DAN doctor - AMAZING!

    Hope this leads us to some progress...

    Elisabeth
    [This Message was Edited on 03/13/2007]
  11. desertlass

    desertlass New Member

    In case you can't access this, I'll post the parts of the article that caused me to want people to look more closely at this, because of similarities. It is somewhat possible to imagine we are reading an article where we could substitute "CFS" for "autism". This gives me hope because of the final paragraph. Wouldn't it be great if we could get our researchers to talk to their researchers under a bigger umbrella? If you can't read it all now, maybe you could copy into a file and save for later--

    "Meanwhile, on the sidelines... a disparate group-- immunologists, naturopaths, neuroscientists, and toxicologists-- is turning up clues that are yielding novel strategies to help autistic patients. New studies are examining contributing factors ranging from vaccine reactions to atypical growth in the placenta, abnormal tissue in the gut, inflamed tissue in the brain, food allergies, and disturbed brain wave synchrony. Some clinicians are using gentetic test results to recommend unconvential nutritional therapies, and others employ drugs to fight viruses and quell inflammation."

    ..."Above all, there is a new emphasis on the interaction between vulnerable genes and environmental triggers, along with a growing sense that low-dose, multiple toxic and infectious exposures may be a major contributing factor to autism and its related disorders. A vivid analogy is that genes load the gun, but environment pulls the trigger."

    ..."One can distill a few revolutionary insights. First, autism may not be rigidly determined but instead may be related to common gene variants, called polymorphisms, that may be derailed by environmental triggers. Second, affected genes may disturb fundamental pathways in the body and lead to chronic inflammation across the brain, immune system, and digestive system. Third, inflammation is treatable."

    ..."Dr. Martha Herbert, a Harvard pediatric neurologist, wrote in "Clinical Neuropsychiatry"-- 'I no longer see autism as a disorder of the brain but as a disorder that affects the brain. It also affects the immune system and the gut. One very striking piece of evidence many of us have noticed is that when autistic children go in for certain diagnostic tests and are told not to eat or drink anything ahead of time, parents often report their child's symptoms improve-- until they start eating agin after the procedure. If symptoms can improve in such a short ime frame simply by avoiding exposure to foods, then we're looking at some kind of chemically driven 'software' -- perhaps immune system signals-- that can change fast. This means that at least some of autism probably comes from a kind of metabolic encephalopathy-- a systemwide process that affects the brain, just like cirrhosis of the liver affects the brain."

    ..."Herbert believes that the clues linking the obvious behavioral symptoms to more basic, but less obvious, biological dysfunction were missed early on. 'What I believe is happening is that genes and the environment interact, either in a fetus or young child, changing cellular function all over the body, which then affect tissue and metabolism in many vulnerable organs. And it's the interaction of these collection of troubles that leads to altered sensory processing and impaired coordination in the brain.'

    ..."'What we've got here is a far more comprehensive set of characteristics for autism' says Herbert, 'one that can include behaviour, cognition, sensorimotor, gut, im une, brain, and endocrine abnormalities. These are ongoing problems, and they're not confined just to the brain. I can't think of it as a coincidence anymore that so many autisitc kids have a history of food and airborne allergies, or 20 or 30 ear infections, or exzema, or chronic diarrhea."

    Pat Levitt, neuroscientist and director of the Vanderbilt Kennedy Center for Research on Human Development says, "We're beginning to understand that genetics is really about vulnerability." Levitt and his colleagues recently discovered that a common variant of a gene called MET doubles the risk of autism. The finding was widely regarded as breakthrough because MET modulates the nervous system, gut and immune system-- just the kind of finding that matches up with the emerging new view of autism. 'Everyone was focusing on genes expressed in the brain,' says Levitt, 'but this gene is imprtant for repair of the intestine and immune function.'"

    ... "And finally, in a twist that intrigues other researchers, the activity of the gene is affected by what is known as oxidative stress-- the kind of damage one sees with excessive exposure to toxins."

    Included is a graphic showing the state of Texas, comparing the rates of autism region by region, the increase in the last five years in each region and then the pounds of environmental toxins released in each region. "The correlation between toxins and autism is suggestive but not definitive".

    Dr. Jill James "We also plan to look at mitochondrial dysfunction" she says. "Since mitochondria are the energy powerhouses of the cell, they're also the place where the most free radicals (which play a role in oxidative stress) are produced. If the electron transport chain in the mitochondria is faulty and you're not efficiently making ATP, you'll produce more free radicals and deplete your glutathione. If this hypothesis turns out to be correct, we can give nutrients like coenzyme Q10, magnesium, and acetyl-L-carnitine to help stabilize the mitochondria. Now this is just a hypothesis, but that's the risk you take with science. You make your best guess and you carry out your study and you see."

    ..."Isaac Pessah, chairman of Molecular Biosciences and director of the Center for Children's Environmental Health and Disease Prevention at the Universtiy of California at Davis says, "I think glutathione balance in the kids is potentially very important in terms of toxic environmental exposures. There is a growing sense that our heavily industrialized, chemical-soaked environment-- and the way it acts on vulnerable genes in some individuals-- may be a major culprit." In December 2006, Harvard researchers boldly announced in the Lancet that industrial chemicals may be impairing the brain development of children around the entire world. And at a 2006 conference at the University of California at Davis's M.I.N.D Institute, Pessah gathered experts to discuss the clinical implications of environmental toxicology in autism. Says Herbert, 'We discussed the enourmous number of chemicals in our environment and how little we know about chronic, low-dose, multiple exposures and their effect on diseases like autism. Maybe the many autism cases we are now seeing are a new illness of the current generation."

    On a study following 100, 000 pregnant women for 72 months, "The hope is to discover environmental facors that contribute to autism risk, from diet or infection, to toxins like heavy metals, pesticides, and the countless synthetic molecules in products today."

    ..."Other large NIH- and EPA- funded studies are teasing out immune abnormalities that may contribute to autism. In research on more than 700 families with an autistic child as well as a neurotypical child, Pessah and his colleagues have found in the autistic child a significant reduction in immunglobulins and an abnormal profile of cytokines, whihc are critical to immune response. 'The immune system is involved in important aspects of neurodevelopment,' says Pessah. 'We've found the presence of immune antibodies that we think may influence brain proteins.'"

    ..."Herbert argues that 'we can address the disturbed pathways now, before the gene hunters have definitive information. Genes, after all, don't specify behaviors. They make regulatory factors that interact in highly complex ways. And as far as the impact of chemcials on neurodevelopment, only about 20 to 30 of the 85,000 chemicals made have been studied. We can, at the very least try to modulate autism by treating tissue inflammation.' In other words, treat now, before the gavel of science strikes a final judgment, which might be decades away."

    On treatment offered at Defeat Autism Now! DAN! Center in Colorado: focuses on intestinal issues, detoxification, nutrition, and neuroinflammation. Recommendation include dietary restriction, usually eliminating gluten and dairy.... "

    Other DAN! recommended treatments include detoxificaton to remove heavy metals and other suspected pollutants, nutritional supplementation, and sometimes off-label use of anti-inflammatories, antivirals, and allergy medications... and anti-fungal drugs. DAN! practitioners are, of course, diving into the deep end of the pool before science has truly proved these treaments effective, but there are many anecdotal cases of improvement."

    "Not surprisingly, there has been criticism of the biomedical approach, especially when doctors promise too much or parents hope too desperately for recovery."

    Thrn follows a description of the work done by Amy Yasko, as referred to by Delia and Winsomme-- she is a molecular biologist and naturopath who favors dietary changes, herbs and supplements over prescription drugs. She calls her field "biomolecular nutrigenomics".

    ..."Can we cajole a mysteriously shuttered brain and body back toward normal? And if so, will autism give us new insight into other disorders? Martha Herbert thinks so: 'A lot of these metabolic pathways are pretty fundamental to life. If we can crack the puzzle of autism and be clear about how we did it, that may have huge implications for other chronic environmentally triggered systemic illnesses. Autism could be a much needed wakeup call for us all."
  12. desertlass

    desertlass New Member

  13. Elisa

    Elisa Member

    Fascinating...

    Elisabeth
  14. victoria

    victoria New Member

    Since I am on lists pertaining to Lyme as my son has it ( but not autistic), Lyme has also been indicated as a possible cause for some... received this info last week:
    --------------

    The Lyme-Autism Connection Conference (CA) - June 23-24

    Hundreds, if not thousands, of children have been diagnosed with Lyme Disease and Autism. ..

    Lyme Induced Autism Foundation Presents.....

    The Lyme-Autism Connection Conference and Physician's Round-Table Physicians from across the country are invited to learn about lyme disease and its impact on our children.

    It's time to bring the experts from each of these areas together to find answers for our kids. Please join us and learn about proper testing, diagnosis, the unique needs of an autistic child and participate in the physicians roundtable to search for the best treatments. This conference is appropriate for parents of children diagnosed with autism, lyme disease , add/adhd, asperger's syndrome or adults with lyme disease. Agenda and list of speakers will be posted soon, so keep checking back.

    When: Saturday, June 23rd & Sunday June 24th, 2007
    Where: Hyatt Regency Hotel in Irvine, California
    Early Bird Registration: Register by May 30th - $150 Late Registration: Register after May 30th - $175

    Parents: we are looking for volunteers for this event

    "lyme induced autism" is the website to look for.

  15. pepper

    pepper New Member

    I forgot to check this thread. My doctor is near Ottawa in Canada but I don't think I should mention his name without his permission.

    He really does treat each patient individually but the MesoSilver seems to be a common thread (with the Lyme connection that makes even more sense) as well as the every second night or every night glutathione suppositories and methylcobalamine injections twice a week.

    He is big on dietary change esp. regarding allergies and gluten sensitivity. He believes that no one should ever eat sugar or the white stuff, caffeine or alcohol except an occasional glass of wine if tolerated.

    He recommends Activated Charcoal to help with the die-off from the silver. I take 1/8 tsp. twice a day and itch like crazy from the die-off.

    He also recommends far infrared saunas. I finally came up with the $$ to buy one and use it almost every day. It is wonderful!

    I am trying to think of what else is on his protocol but an drawing a blank. Please ask if you have questions.

    Pepper
  16. meditationlotus

    meditationlotus New Member

    Today my brainfog is pretty bad, so can't really understand all that I am reading, but did want to mention this somewhat related topic.

    I was listening to "Science Friday" on National Public Radio last week, and they were discussing the problem of honeybees disappearing in 23 states. One of the many possible explanations was that farmers now use a type of insecticide that is made by altering viruses. The scientists say it is possible that these types of insecticides are causing the bees to become confused and unable to find their way back to their hive.

    Now, how are altered viruses sprayed onto our foods as insecticides affecting us?. Are our immune systems confused? I wish organic produce was not so expensive.
  17. pastel

    pastel New Member

    very interesting, and bumping for others
  18. desertlass

    desertlass New Member

    So, I went back to the article-- please get your hands on this, people, because it is like reading about what is being researched with ourselves.
    I've tried to type as much of this long article that seems relevant on here and on another thread started by Swedeboy on the methylation pathway.

    So, back to Nofool's observation on the paragraph I copied, here's the one that came before it, which might shed some light on the fact that glutathione was not mentioned in the protocol:

    "The good news is that oxidative stress in some autistic children may be treatable with targeted nutritional intervention. James and her colleagues have tracked eight autistic children who were taking supllements of key nutrients in the methylation pathway-- folinic acid, trimethylglycine, and methyl-B12-- and found a significant increase i important markers of methylation and gluathione synthesis. The next step is to see if the symptoms improve as well."

    And then the next paragraph was the one on mitochondria.

    Notice, that the words "MAY" be treatable, and "SEE IF". No one is saying "THIS is it, for sure." But many of us are interested as we watch researchers try more than one way to skin a cat. (I hate that phrase-- is there another one that means the same thing?) And some of us are willing to be guinea pigs. The important thing is that no one is being forced into this role.

    Thanks for bringing up an important point.
  19. desertlass

    desertlass New Member

    I wonder if the Lyme population will be looked at more closely due to the Autism connection. If they can find a connection between all of us, just think of all the people that would benefit, regardless of the initial factor that caused the metabolic breakdown. If the tick is a carrier of the bacteria, then is it that the tick population has exploded, or has the prevalence of bacteria has exploded?

    Thanks for this info
    Lisette
  20. victoria

    victoria New Member

    I have a feeling that will be a LONG ways off... simply because both areas are so politically charged...

    I just got a book from my library 'The Hundred Year Lie' by Randall Fitzgerald about how many chemicals are in our bodies that didn't used to exist in the environment, and how they affect us...

    I have a feeling there are a LOT of things underlying our susceptibility to various things, depending on our own mix of genetics. :((

    Victoria