summer Posted July 4, 2009 Report Share Posted July 4, 2009 Dizzy and Waterbaby, Other than sensory issues, which are common to many neurological conditions, what similarities are there between CFS/POTS and autism? I don't see it. Summer Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 4, 2009 Report Share Posted July 4, 2009 I wrote this thead back in 2007 and am too lazy to recreate it here ... This shows how CFS and autism are related ... http://brain.hastypastry.net/forums/showthread.php?t=22098I didn't know about orthostatic intolerance (OI) at that point so I had no idea what POTS was. I only found this website and started learing about POTS, etc when my GP re diagnosed me with orthostatic intolerance via the poor man's tilt table test. I've had OI since 1990 but with all my other symptoms this one didn't matter to me ... .. As far as I can tell now, OI and PEM (post exertional malaise) are my last 2 CFS symptoms to eliminate. KOW ... So here's the info on POTS ... http://www.dinet.org/symptoms.htmNotice the commonality in symptoms ... Honestly, I think if I'd seen one of your doctors instead of mine, I'd have been diagnosed with POTS ... Hopefully someone here will know what alternative tests (nutritional, heavy metals, oxidative stress, etc) have been done on POTS patients ... HTH ... Marcia Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 4, 2009 Report Share Posted July 4, 2009 waterbaby and others, I'm having a great day today. No OI at all and tons of energy. KOW .. I even worked in the yard for a couple of hours ... I think it's what I took for sleep last nite since I woke up feeling terrific. I've been working on what combo of neurotransmitters I'm lacking ... I just started researching these and found theanine and melatonin recommended for anyone with myoclonus (jerking). I'm still learning about all this though ... Last nite I took 6 mg melatonin (capsule not sublingual), 400 mg L-theanine and a supplement called True Calm by NOW. http://www.herbalremedies.com/trucalamacre.htmlI've been playing with lower dosages for several weeks and this has been the best combo yet ... however, I don't recommend anyone trying these supplements or this quantity or combo without testing a small dosage first. A freind of mine with CFS uses 5HTP so I tried it and had a bad reaction ... so everyone is different. Are you all familiar with these ? thanks ... Marcia Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 5, 2009 Report Share Posted July 5, 2009 This shows how CFS and autism are related ... http://brain.hastypastry.net/forums/showthread.php?t=22098No actually, that is really just speculating as to a common pathway that results in either autism or CFS which is pretty strange given that we still dont understand why people develop autism or CFS - all the reasons outlined in that study are speculative. There is no uniform and testable causal mechanism that has been proven for either condition so you cant really be that definate. There is research going on right now that may have uncovered more likely mechanisms for CFS. Autism on the other hand is a whole different kettle of fish. It is interesting that autistic children experience sensory overstimulation and food intolerances as well as immune system disfunction, but ive never heard of autistic children experiencing NMH or POTS which are very common findings in CFS patients. Ofcourse, if you search the web long enough you can find research that demonstrates any contention you like - elevated nitric oxide, increased oxidisive stress (which in many ways is paradoxical with increased nitric oxide), disordered methylation cycles, etc. But none of this is proven science - it is one step ahead of guesswork. That is the difference between much of the research available on CFS to date and that which is available on POTS where there are measurable mechanisms that can easily allow for diagnosis of the condition, etc. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 5, 2009 Report Share Posted July 5, 2009 This shows how CFS and autism are related ... http://brain.hastypastry.net/forums/showthread.php?t=22098No actually, that is really just speculating as to a common pathway that results in either autism or CFS which is pretty strange given that we still dont understand why people develop autism or CFS - all the reasons outlined in that study are speculative. There is no uniform and testable causal mechanism that has been proven for either condition so you cant really be that definate. Try telling this to those parents of autistic kids who's children have regained their lives by following the DAN protocal. Jenny McCarthy's son is just one out of thousands. I see these parents posts all the time. The good and the bad. Most respond to the GFCF diet but need other interventions too. Leaky gut explains all of this. There is plenty of research on autism dating back as far as the 1970's. The Autism Research Institute has been saying since then that they had positive results by treating these kids holistically. It's just that the American Pediatric Association doesn't want to hear it. They repeatedly refuse to verify with the DAN community that these methods are helping kids. They have even been invited several times to participate at DAN conferences, but they refuse. This has been documented and can be found on DAN websites or in Jenny's 2nd book. And why is that ? Because there is too much money involved in vaccinations and the other autism treatments ... Same goes for CFS, POTS, MS, etc ... R said ... "There is research going on right now that may have uncovered more likely mechanisms for CFS. Autism on the other hand is a whole different kettle of fish. It is interesting that autistic children experience sensory overstimulation and food intolerances as well as immune system disfunction, but ive never heard of autistic children experiencing NMH or POTS which are very common findings in CFS patients. "That's a joke, right ? Do you know that the CDC is working to make CFS a psychological illness ? Google CDC CFS 5 year plan to see this ... I'll go get the link in a minute, but I haven't had breakfast yet ... Hmm, I'm not sure how you would tell if an autistic child has NMH ... POTS by the description given on this board is the same as CFS so they qualify for that. But if you're strickly talking fatigue, I'm really not sure. It would be hard to know if a child who's stimming, spacing out, throwing trantrums, having seizures, unable to can't speak, constant episodes of extreme constipation or diarhea, etc etc etc is also having NMH or fatigue ... Heck, I didn't realize exactly what it was until I got rid of most of my problems ... and even then my docs weren't any help. I had to research why I was feeling dizzy after standing for more than 20 and then figured out it was my BP ... and I had to ask specifically to be tested for this ... What I am saying is that when there are so many other disturbing symptoms these may not be recognized ... R said ... "Ofcourse, if you search the web long enough you can find research that demonstrates any contention you like - elevated nitric oxide, increased oxidisive stress (which in many ways is paradoxical with increased nitric oxide), disordered methylation cycles, etc. But none of this is proven science - it is one step ahead of guesswork. That is the difference between much of the research available on CFS to date and that which is available on POTS where there are measurable mechanisms that can easily allow for diagnosis of the condition, etc."I don't believe everything I read and neither should anyone else. I guess we know that since I don't believe that CFS, autism, POTS, etc are incurable. I do trust those who are trying to help us heal though. The others, in some cases but not all, have their own agenda ... I'm not sure how many docs are aware of how gluten, etc affect our bodies, but I am running into more and more people who are being told to stop eating it for a variety of reasons. And many traditional doctors are becoming integrative doctors so they can better help their patients ... Because of the internet and specifically google, we now have access to health information that was never made available before to us or the medical community. Many of us are using it to heal themselves ... just take a look at how many members there are on celiac.com ... most weren't properly diagnosed and had to figure this out for themselves ... that's what go me started on this path ... FYI. Don't stay there though. They are deleting threads about those GF foods that are cross contaminated. Business is business ... waterbaby, Sorry to hijack your thread ... marcia Quote Link to comment Share on other sites More sharing options...
summer Posted July 5, 2009 Report Share Posted July 5, 2009 Marcia,I was holding back in responding to your posts, but this is truely something I feel strongly about as the mother of a child with autism. The "autism community" is very broad and includes parents, and individuals with autism, many of whom have chosen other forms of treatment than GFCF and the DAN! protocol (Defeat Autism Now!, for those who are not familiar with it). In fact, many from the autism community are offended by the idea that autism is something to be "defeated". Some of us are ready to accept our children as they are, and do not feel we have failed if we are unable to bring them to "recovery". My child who is now 13, has progressed from classic autism as a toddler to a very high functioning child with high level speech, a sense of humor, emerging social skills, and 98% this year in academic math, but he continues to have autism, and always will. It is part of who he is, and we are fine with that. In fact, we love that about him, and encourage him to feel good about who he is.When he was about 10 he was present when a friend of mine mentioned "defeat autism now", he was very upset and interupted saying, "Mommy! Why would anyone want to defeat autism? you can't defeat autism!". It is one thing to talk about defeating autism when your child is 3 or 4, but quite another when they are old enough to know you're are talking about something that is part of who they are. What kind of message does a name like this send to our children and adults with autistic spectrum disorders? Google that - there are lots of people who are very offended by that name.Money involved in vaccinations? How much money do you suppose is involved in selling supplements to families with autism? How much money do you suppose Jenny McCarthy is making? It's a whole new career for her. I'm glad her child has experienced improvement, but so has mine without the DAN! protocol. Not many parents have the money Jenny has to use all these expensive therapies. I know families personally who have lost their homes and their children have not "recovered". It is not difficult to know whether a child with autism has POTS or NMH. Does he have a heart rate increase on standing? Does he faint or have low BP? And does he have fatigue? If he's jumping up and down on a trampoline all afternoon, probably not.I feel so strongly about this because I believe many families with autism, and people with CFS are vulnerable to this type of persuasion because as of yet, the medical community has not been able to offer much in the way of effective treatment. This is very unfortunate. It does make people easy targets for promises of recovery that do not need to be backed up by research. Rama is right. This is all speculative and there is no real evidence of any connection between CFS and Autism. Just thought you should know that there are lots of people in the autism community other that those who subscribe to the ideas of DAN! and who have worked very hard for and with our children - with great success. Summer Quote Link to comment Share on other sites More sharing options...
cordila Posted July 5, 2009 Author Report Share Posted July 5, 2009 Hi Dizzy - don't be silly! You didn't hijack my post. I'm thrilled that this post is bringing up such heated issues. It's good to get this out and debated on every level, esp b/c I think the sufferers and their caregivers/lovers/friends/families who see the disease pathways and live with the symptoms every day are going to be the ones who, through internet driven research and in-home/in-body testing, lead the grassroots movement to change the minds of the modern medical community. And this movement is happening and already powerful. I see it myself as my own GP and specialist team has begun asking ME questions on how I'm healing myself. I think the medical community has to change it's approach on how they deal with the standard disease process. We're still living in the 'add-to' age with modern medicine (meaning - if we add X pill to this disease it will either a) mask a symptom or kill everything) and we need to make the transition to 'take-away' (meaning - if we remove X stressors, toxins, foods, etc. and lift specific burdens on the body can we create an environment where the body will self-correct?). It is my personal belief (simply stating my own opinion) that many of our diseases (CFS, POTS, ME, Autism, Raunauds, Shogrens, Rhuematoid, etc.) are all linked - how I am not at all certain. And by 'linked' I simply mean that the process by which one group finds healing very well may help another. I love that you brought up 'let food be your medicine and medicine be your food' because I think it states a medical fundamental that has been widely ignored by modern medicine and does a great disservice to the patients it strives to assist. To Ram's point, I am hugely encouraged by the strides made toward understanding the mechanisms behind what occurs in the bodies of the suffers of CFS, POTS, etc. These doctors and this research allows us to better familiarize ourselves with how the body works (in particular how OUR bodies work - or don't - as the case may be) and that research, and those papers, allow us to continue to Google our way toward healing ourselves. Dizzy, you talk a lot about your diet (and how it's helped you). I understand GFCF but don't know the other diets. Would you mind giving me a brief run-down on those?Thanks! Thanks all you guys! This is such an exciting discussion!-WB Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 5, 2009 Report Share Posted July 5, 2009 Summer, As a fellow parent, I'm sorry to hear this ... I've heard others saying this too and I find this attitude interesting myself. I was born with the cord wrapped about my neck and as a child showed signs of partial seizures, blackouts, ataxia, inability to follow a conversation, lack of eye contact, speech impedements, ate dirt regularly, etc. which was all attritubed to brain damage that occured at my birth. I did well in school too but it was a real struggle. OK, plenty of people make it through public school stoned so, I'm not sure this means anything ... I'm 53, but I would imagine that if I'd been born today, I would've been included in the ASD ... not severe but enough to get me in. Please don't take this the wrong way, but I can't imagine how hurt I'd be if my parents had let me live my life this way, telling me I was wonderful as I was and I found out later that there was more that could be done. I can't be angry with my parents because that was too long ago and doctors told my parents that that was just the way I was. It's different now .. you know about the GFCF diet and DAN .. I know and I have a daughter with life threatening allergies, high ANA, etc who could benefit from going on the GFCF diet too and so I'm doing what I can to get her on it. I did see all that Jenny put her son through, but I'm sure that's not the norm. Who has that kind of money ? The internet is free and full of parents of autistic kids who they are trying to fix. Yes, I know it's not easy and maybe it's best reserved for those children who can't go into a classroom or out in public due to an inability to control their behavoir. It's certainly every parents choice ... I'm just saying as someone who has dramatically improved their life via this diet and am now benefitting from the use of supplements, I'd be hurt ... Seriously, without this diet, I'm probably be dead by now ... I was losing so much blood due to heavy menses and weight due to diarhea and my doctors weren't helping ... I was actually told by two gyns that my loss of blood was a "self limiting" problem. Meaning, I'd die of blood loss ... I think that was a joke with them since they both had that "Do you get it ? " look on their faces ... I was too pissed and too weak to think it was funny ... I have to run errands .. I hope I'm not offending anyone. Granted this is a tough subject for some but it's my intention to shed some light on this not to demean anyone for not trying it ... You have to know that if I'd found this board prior to figuring out how foods affected me, I'd be arguing your point ... I did it for 15 and 1/2 years ... Quote Link to comment Share on other sites More sharing options...
cordila Posted July 5, 2009 Author Report Share Posted July 5, 2009 Summer - I want to address something in your post about Jenny McCarthy. I think she has done a lot of good bringing a very powerful light to Autism. Unfortunately, in our society what celebrities say carry a lot of weight. But when they use their voices to bring light to issues that many of us struggle with, but cannot simply call up Oprah and get on her show to talk about it, then I say 'FANTASTIC!'. (Michael J. Fox, Christopher Reeves, Mohammed Ali, Farah Faucett, Katie Couric) No doubt Jenny has made money on the books she's written. But who cares? She is out there talking about kids with Autism and has found a way to help her child! And her book - and her voice - is helping more kids with Autism every day! Her fierce advocation for her son and his well-being is something everyone should celebrate. There are moms on this forum every day who advocate on behalf of their kids. I can't imagine where their kids would be without that support. If there was a celebrity bringing light to dysautonomia - can you imagine how powerful that would be? I take a vitamin supplement (transdermal B1 cream) that was designed by doctors for autism. And it helps me tremendously. My nutritionist in Washington DC put me the GFCF diet and has just published a book/cookbook designed for Autistic children using the prinicipals of this diet. This diet helps (some) Autistic children and it helps (some of) us with dysautonomia/mito. I think the opportunity here is for us not to debate if CFS and Autism are linked but ask the question WHY? Why are we both being helped by the same things? And what other things work for one that may work for the other? It seems like that's what we are all in pursuit of anyway - help. Help with our symptoms. Help to feel better. Help leading 'normal' lives - whatever our malady. -WB Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 5, 2009 Report Share Posted July 5, 2009 Hi Dizzy - don't be silly! You didn't hijack my post. I'm thrilled that this post is bringing up such heated issues. It's good to get this out and debated on every level, esp b/c I think the sufferers and their caregivers/lovers/friends/families who see the disease pathways and live with the symptoms every day are going to be the ones who, through internet driven research and in-home/in-body testing, lead the grassroots movement to change the minds of the modern medical community. And this movement is happening and already powerful. I see it myself as my own GP and specialist team has begun asking ME questions on how I'm healing myself. I think the medical community has to change it's approach on how they deal with the standard disease process. We're still living in the 'add-to' age with modern medicine (meaning - if we add X pill to this disease it will either a) mask a symptom or kill everything) and we need to make the transition to 'take-away' (meaning - if we remove X stressors, toxins, foods, etc. and lift specific burdens on the body can we create an environment where the body will self-correct?). It is my personal belief (simply stating my own opinion) that many of our diseases (CFS, POTS, ME, Autism, Raunauds, Shogrens, Rhuematoid, etc.) are all linked - how I am not at all certain. And by 'linked' I simply mean that the process by which one group finds healing very well may help another. I love that you brought up 'let food be your medicine and medicine be your food' because I think it states a medical fundamental that has been widely ignored by modern medicine and does a great disservice to the patients it strives to assist. To Ram's point, I am hugely encouraged by the strides made toward understanding the mechanisms behind what occurs in the bodies of the suffers of CFS, POTS, etc. These doctors and this research allows us to better familiarize ourselves with how the body works (in particular how OUR bodies work - or don't - as the case may be) and that research, and those papers, allow us to continue to Google our way toward healing ourselves. Dizzy, you talk a lot about your diet (and how it's helped you). I understand GFCF but don't know the other diets. Would you mind giving me a brief run-down on those?Thanks! Thanks all you guys! This is such an exciting discussion!-WBWhew. I was feeling all alone here. I've got to run but basically I ended up on the Paleo diet since my blood glucose runs too low. Dr. Myhill has info on how most CFS patients have hypoglycemia and can benefit from this diet ... more later .. c ya .. Marcia Quote Link to comment Share on other sites More sharing options...
cordila Posted July 5, 2009 Author Report Share Posted July 5, 2009 GFCFSFEFCF + chemical free dietWhat does this mean? I know Gluten Free Casien Free - but what's the rest? Quote Link to comment Share on other sites More sharing options...
summer Posted July 5, 2009 Report Share Posted July 5, 2009 Summer, ...Please don't take this the wrong way, but I can't imagine how hurt I'd be if my parents had let me live my life this way, telling me I was wonderful as I was and I found out later that there was more that could be done. I can't be angry with my parents because that was too long ago and doctors told my parents that that was just the way I was. It's different now .. you know about the GFCF diet and DAN .. I know and I have a daughter with life threatening allergies, high ANA, etc who could benefit from going on the GFCF diet too and so I'm doing what I can to get her on it. I did see all that Jenny put her son through, but I'm sure that's not the norm. Who has that kind of money ? The internet is free and full of parents of autistic kids who they are trying to fix. Yes, I know it's not easy and maybe it's best reserved for those children who can't go into a classroom or out in public due to an inability to control their behavoir. It's certainly every parents choice ... I'm just saying as someone who has dramatically improved their life via this diet and am now benefitting from the use of supplements, I'd be hurt ...Hi Marcia,I am not offended by your post. The truth is there are many treatment options for autism, and it's not like we've been sitting around doing nothing for 13 years. We have chosen other options and worked very hard at them. The truth is none of us can do "all" that can be done. We are all limited in our time, energy and resouces and have to make choices. We chose treatment we thought had the best evidence for success. Our son has made tremendous progress, and over come many difficult behaviours. I fully expect him to live independently and happily as an adult. He doesn't seem to mind living his life "this way", and we have chosen to focus on his areas of strength and develop those so that he can perhaps have career options that he will enjoy later. We don't really feel like we should be trying to "fix" him, because we don't think he is broken. How do parents and children feel after spending years and $$$$ trying to cure autism only to find that their child still has autism? I can't help but think that this must be devastating, and that children must somehow feel they have been a disappointment to their parents. I will not have my child feel that he is anything less than God intended him to be.This is not to say that some children with autism don't benefit from diets to avoid foods they have sensitivities to. And it's not surprising that you have benefited from the GFCF diet since you have celiac disease. But I don't believe this is the key to recovery from autism and I know many parents who have spent thousands of dollars figuring that out.We don't try to make our children "recover" from down's syndrome, or other developmental disorders. We help them to develop to their greatest potential, and accept their differences. Why should parents of children with autism be somehow made to feel that they have failed their children because they were not able to cure them from a neurological developmental disorder?Interesting discussion:) Do you have a child with ASD?Summer Quote Link to comment Share on other sites More sharing options...
summer Posted July 5, 2009 Report Share Posted July 5, 2009 Summer - I want to address something in your post about Jenny McCarthy. I think she has done a lot of good bringing a very powerful light to Autism. Unfortunately, in our society what celebrities say carry a lot of weight. But when they use their voices to bring light to issues that many of us struggle with, but cannot simply call up Oprah and get on her show to talk about it, then I say 'FANTASTIC!'. (Michael J. Fox, Christopher Reeves, Mohammed Ali, Farah Faucett, Katie Couric) No doubt Jenny has made money on the books she's written. But who cares? She is out there talking about kids with Autism and has found a way to help her child! And her book - and her voice - is helping more kids with Autism every day! Her fierce advocation for her son and his well-being is something everyone should celebrate. There are moms on this forum every day who advocate on behalf of their kids. I can't imagine where their kids would be without that support. If there was a celebrity bringing light to dysautonomia - can you imagine how powerful that would be? I take a vitamin supplement (transdermal B1 cream) that was designed by doctors for autism. And it helps me tremendously. My nutritionist in Washington DC put me the GFCF diet and has just published a book/cookbook designed for Autistic children using the prinicipals of this diet. This diet helps (some) Autistic children and it helps (some of) us with dysautonomia/mito. I think the opportunity here is for us not to debate if CFS and Autism are linked but ask the question WHY? Why are we both being helped by the same things? And what other things work for one that may work for the other? It seems like that's what we are all in pursuit of anyway - help. Help with our symptoms. Help to feel better. Help leading 'normal' lives - whatever our malady. -WBHi WB,Of course, I do not object to anyone bringing awareness to autism. I do, however, not believe it is helpful to people with autism to drive a wedge between them and the medical community. Within the past few months, Jenny appeared on the show "The Doctors" which turned into a big shouting match with one sided pitted up against the other. I'm not sure that is the best way to make progress for our kids. Many of us are advocating for our kids everyday and even though we are not able to be on Oprah, or The Doctors - maybe we are not even doing it on the internet - we are at home "in the trenches", working with our schools, communities to open doors for our kids. I have come across so many caring people were my son is concerned. Having a good relationship with those people has gotten me much farther than alienating them or arguing with them. Yes, your are right we are all in pursuit of the same thing - help. I guess we just have different views on the best way to go about that.Summer Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 6, 2009 Report Share Posted July 6, 2009 Hi again,GFCFSFEFCF means Gluten, casein, soy, egg and corn free ... I had to elimate all common allergens due to my digestive issues in 2005. Friends at celiac.com told me it sounded like I had full blown celiac at that point. I already told you what an idiot my GI doc was. I wish I could say this wasn't the norm ... I was told by my GP that since these foods are commonly found in processed foods today that many of us are developing intolerances to these. BTW, my dogs vet told me that the same goes for dogs ... my dogs are Grain free due to severe allergies ... I can handle a bit of casein, soy, egg and corn in processed foods without feeling crappy from time to time. But I only eat this if I'm somewhere and there's GF goodies in front of me that I can't resist. I don't keep any processed foods or GF grain mixes in the house ... I know my limitations and it's just too to grab one of these when I'm feeling ravenous ... Allergy testing isn't as helpful as one would hope either. I have antibodies to gluten and egg whites but I've found that despite not having antibodies for casein, I get dark circles around my eyes if I eat it for 3 days. These take 7 - 10 days to go away. I get phlegm in my throat immediately from soy milk. For some reason, chicken and turkey both make me sooooo sleepy that I only eat these before going to bed. There are other common food allergens though which you can find by googling elimination diet. I know I've forgotten something. BUT you can develop food allergies to whatever you eat a lot of. As far as the chemicals go, I stopped eating meats or eggs with hormones, etc. I quit using Teflon pans. I use all natural dishwasher soap, avoid bug spray, etc. Fabreze made my eyes twitch for hours the last time I used it so that's out too. Clorox bleach gives me phlegm in my throat for days ... Keep in mind that I usually feel completely healthy (at rest anyways) until I get ahold of one of these so I can tell what's doing what. I'd only go as far as you need or want to though. I did this because I saw a direct reaction to these items. I eat anything I don't see a reaction to though .. For some reason, maybe GOD is looking out for me, I can still eat chocolate ... Also though, I read info about how cytokines interfere with our bodies ability to function. Cytokines are produced by our exposure to toxins including food intolerances, chemicals, etc ... I have this article somewhere but I can't remember where right now ... This article is why I decided to limit my chemical exposure too. Are you using probiotics and digestive enzymes ? time for a break ... marcia Quote Link to comment Share on other sites More sharing options...
cordila Posted July 6, 2009 Author Report Share Posted July 6, 2009 Hi Dizzy!It's so funny about turkey! I can handle chix just fine but turkey makes me feel tired and nauseated. What is up with that? Tryptophan? And I'm very jealous you can do chocolate. Last time I did I ended up ringing the LA-911. While the paramedics in LA are quite handsome (most likely all actors by day) I did find the situation pretty horrifying. I seem to be OK w/soy, eggs, and corn however I wouldn't say that I'm 'healthy' so maybe I'll have to reconsider. Right now I'm battling with allergies (spring) so severely it's hard to tell up from down. I had a fantastic, full of energy week and then last night it dropped 20 degrees in temp and kicked up a massive wind and BAM! Back down for the count.I do know I have some problems with sugar so I try to keep that to a minimum - not easy. I feel like I'm pretty cool with environmental/chemical substances however since I put some of my medication on my skin I understand how powerfully the skin can soak elements into your body so I'm trying to move toward more organic cleaning/bathing/beauty supplies.Summer - I hear what you say about Jenny and driving wedges. I guess at the end of the day the good in any person comes with the weaknesses and I just hope that, when it all comes out in the wash, she'll have done more good than harm. And I also hear what you say about how powerful the grassroots, in-the-trenches movement can be. I'm 100% onboard with that line of thinking. That's why places like this forum are so powerful. I think, while it's a shame we are all battling with the symptoms of our particular maladies, it is wonderful that we live in a time where it's OK to question medical authority, when information for self-research is readily available, and where places of support and encouragement (like this) exist to make the slog a lot easier. And, yes, I too have encountered my fair share of 'angels' who have helped me along the way - some of them wearing white coats -WB Quote Link to comment Share on other sites More sharing options...
summer Posted July 6, 2009 Report Share Posted July 6, 2009 I think, while it's a shame we are all battling with the symptoms of our particular maladies, it is wonderful that we live in a time where it's OK to question medical authority, when information for self-research is readily available, and where places of support and encouragement (like this) exist to make the slog a lot easier. And, yes, I too have encountered my fair share of 'angels' who have helped me along the way - some of them wearing white coats -WBI so much agree, WB:) Thanks for your reply. Take care!Summer Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 7, 2009 Report Share Posted July 7, 2009 Hi Dizzy!It's so funny about turkey! I can handle chix just fine but turkey makes me feel tired and nauseated. What is up with that? Tryptophan? And I'm very jealous you can do chocolate. Last time I did I ended up ringing the LA-911. While the paramedics in LA are quite handsome (most likely all actors by day) I did find the situation pretty horrifying. I seem to be OK w/soy, eggs, and corn however I wouldn't say that I'm 'healthy' so maybe I'll have to reconsider. Right now I'm battling with allergies (spring) so severely it's hard to tell up from down. I had a fantastic, full of energy week and then last night it dropped 20 degrees in temp and kicked up a massive wind and BAM! Back down for the count.I do know I have some problems with sugar so I try to keep that to a minimum - not easy. I feel like I'm pretty cool with environmental/chemical substances however since I put some of my medication on my skin I understand how powerfully the skin can soak elements into your body so I'm trying to move toward more organic cleaning/bathing/beauty supplies.Summer - I hear what you say about Jenny and driving wedges. I guess at the end of the day the good in any person comes with the weaknesses and I just hope that, when it all comes out in the wash, she'll have done more good than harm. And I also hear what you say about how powerful the grassroots, in-the-trenches movement can be. I'm 100% onboard with that line of thinking. That's why places like this forum are so powerful. I think, while it's a shame we are all battling with the symptoms of our particular maladies, it is wonderful that we live in a time where it's OK to question medical authority, when information for self-research is readily available, and where places of support and encouragement (like this) exist to make the slog a lot easier. And, yes, I too have encountered my fair share of 'angels' who have helped me along the way - some of them wearing white coats -WBSo does this mean you're eating chocolate anytime you need a "hunk fix" ? My sister's face swells if she eats too much chocolate. The first time this happened when she was in her 20's, she was quite surprised as was her husband. lol ... My GP said it was the tryptophan but I still wonder about it. Sleep is an allergic reaction for me. I do this everytime I eat wheat too. But, I had a funky reaction to 5HTP (tryptophan). I can only describe it as a locked up feeling in my brain. It was late and I'm too big of a chicken to try it again ... Since you have severe allergies, I'd definitely give up any soy, corn, egg and all chemicals for a few weeks then and then add them back in one at a time to see if it makes a difference. I did this so many times with dairy, I'm embarrassed. Most of the time I was trying to get yogurt in my diet for the probiotics, but Breyer's Lactose free ice cream made it into my shopping cart once too. Actually if my GP hadn't just seen my raccoon eyes and told me that I should not be eating dairy, I'd still be playing with it ... BTW. I got a gluten reaction from Breyers ice cream ... How long have you been GF ? I ask because it can take awhile to heal. I've been GF since 9/2005 and according to my EGD back in March 09, I no longer have celiac disease and my test was completely normal. My first biopsy however, done 17 months post GF, showed that I still had damage from either NSAIDS or celiac disease. So, 17 months post GF was too early to look for remission but 3 and 1/2 years out, I was ok ... My digestive tract hurt most of the time for the first year of this diet and slowly got to the point where I wasn't afraid to eat. One thing that celiac specialist or GI who diagnose anyone with celiac disease never talk about is how NSAIDS can damage those villi too. We know that viruses, candida, etc can cause leaky gut (opening in gut lining) but I'm not sure if viruses, candida, etc can flatten villi ... Are any of you dealing with those too ? That would keep you from healing ... Also, have you used L-glutamine, digestive enzymes, probiotics, aloe, etc ? All these help the digestive tract heal. I found that eating EVOO, flax oil, etc made my digestive tract feel better too. My GP told me to avoid anything that hurt my digestive tract and if I was in pain to go back to my "safe" foods. For me that was baked chicken (I was ok with it back then) or fish, applesauce, pears, rice, baked potato, peas and asparagus. Oh and fresh papaya was a life saver for me ... no spices even esp no pepper.I've had some good doctors through all this too. My GI now is great as is my integrative GP ... Still though, I'm on my own here ... My docs are interested in what I'm doing and are helpful, but they aren't as up on all the "CFS" symptoms as I am. Like they didn't know about the extreme gluten sensitivity, chronic hypoglycemia, orthostatic intolerance, etc. I have no one to ask about the neurotransmitters I just started using either ... Marcia Quote Link to comment Share on other sites More sharing options...
cordila Posted July 7, 2009 Author Report Share Posted July 7, 2009 I've been GFCF since June 2007! Clocking in @ 3 years. I had the shiners (like you) and the same sleep reaction to gluten. Sleep is not quite the right name. I'd say it put me into a sort of drug-induced coma. When I woke up the next morning (or after a 5 hour nap), I'd feel like I'd been hit by a truck. 5HTP and SSRI's of any sort exacerbated all of my symptoms. And yes - locked in my brain - very good analogy! I'm pretty sure I don't have issues w/soy, corn, or egg but I can certainly give them a try. Many of my GI symptoms have subsided since I started the Mayo Mito Cocktail although I do occasionally get woken up in the middle of the night w/the sensation that I'm going to vomit (but never do) and with an extremely distended belly. If anyone can tell me what that's about, I'd be so grateful!I'm not sure (currently) about candida. I was tested for it and it came back negative. I do, however, continue to have outbreaks of tinea versicolor on my back, front, thighs, etc. Are they connected?Now my main issue is the fatigue that can come on so fast and so completely that it stops me cold. I have noticed a HUGE difference since adding 200mg's oral B1 to my daily vitamin regiment. Last week was a good week. I hope I continue to go in the right direction...-WB Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 7, 2009 Report Share Posted July 7, 2009 3 years. That's great ... so you've got it down ... Not sure what's up with your stomach getting distended like that unless it's a food intolerance. The only reason I can think of for it happening in the middle of the nite is that you're reacting to something you're eating or taking before going to bed. I can't handle the sorbitol in sublingual melatonin so I had to switch to a capsule. Have you seen a GI ? I can't remember ... Have you had a GTT (glucose tolerance test) ? I ask because when I had my last one, I went into a deep sleep phase at either the 1 or 2 hour mark. My glucose reading at that point was 189 too. Not good ... but overall, I heard that my test was "normal". I still have to ask my new GP about this ... I mentioned this because you could be reacting to sugars or high glycemic foods this way ... they nail me ... The Paleo diet helps with blood glucose problems but it wasn't enough for me. Did you see that study where they put those people in a zoo and fed them Paleo foods for awhile ? I always think of this when I talk about the Paleo diet .. lol Chromium is needed to help regulate blood glucose too. EFA's help too ... I'm not sure what else.I think part of my problem was my liver wasn't / isn't ? able to keep up. I figured this out when I went on the Modified Atkins diet (extremely low carb) a few years ago and my blood glucose stayed at 67 no matter what or when I ate. I finally caved and ate some fruit. Evidently, my liver couldn't handle the strain of being in ketosis. As of April, 09, I can be extremely low carb and my blood glucose stays up ... : ) progress ... yeah !! I'm having to eat papaya, mango and pineapple right now to keep foods going through me so low glycemic is out ... I'm still recovering from the gastroparesis I got from being glutenned a few weeks ago. I have to look at your mito cocktail and B vitamins again ... I'm currently experimenting with several new supps though so I need to wait a bit. g nite .. Marcia Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 7, 2009 Report Share Posted July 7, 2009 http://www.mayoclinic.com/health/tinea-ver...ECTION=symptomsI had to google tinea versicolor ... I get those too and didn't realize it was from fungus. Bummer ... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 7, 2009 Report Share Posted July 7, 2009 There is plenty of research on autism dating back as far as the 1970's. The Autism Research Institute has been saying since then that they had positive results by treating these kids holistically. It's just that the American Pediatric Association doesn't want to hear it. They repeatedly refuse to verify with the DAN community that these methods are helping kids. They have even been invited several times to participate at DAN conferences, but they refuse. This has been documented and can be found on DAN websites or in Jenny's 2nd book. And why is that ? Because there is too much money involved in vaccinations and the other autism treatments ... Same goes for CFS, POTS, MS, etc ...Its funny, you know that my wife works in autism and i wasnt going to mention that but since you've suggested that the other treatments available for autistic children are out to make money I will mention it. I think she would be very offended if I relayed that opinion to her, specifically seeing the joy she has often expressed over the results she has got from early interventions and applied behavioural analysis. From my knowledge of autism and her experiences I would say that what you wrote is quite ill informed. I know that she found the books interesting. But ofcourse controversial. But people out there are doing great work with autistic kids and this is challenging stuff that shouldnt be questioned. You say that you dont believe everything you read, yet every time I read your posts it seems that you are reporting one particular (and usually controversially and questionably researched) viewpoint as fact. I dont believe everything I read - infact I am able to measure everything I read and evaluate it based on what research and science has actually PROVEN rather than SPECULATED. If you want to speculate you can find research that proves anything nowdays. I am sceptical of all viewpoints - not just some. But I am particulary speptical when someone reports an assumption or a speculation as a fact. Your views could all be right, but the degree of certaintly you include in your posts tells me you believe them as unquestioning facts when in reality they are far from proven. After all there were people who defended the view that vapours caused Bubonic Plague for nearly a century after it was proven to be caused by the bite of rat fleas. The methylation cycle is a fine example. Talk to a geneticist or a researcher about it and they would laugh. Yet it is taken as rock-solid science by some people. Just like the Pall protocol - increased antioxidant damage due to excess nitric oxide levels. Nice theory - actual evidence? Not huge - good results from B12 and folate treatments doesnt equate to proving the Pall method. I dont get your point about CFS being classified as psychologically based. How does this invalidate other research? Why is this an issue? Ultimately this will be proven incorrect and its obviously an ill informed assumption about the condition. My point was that I know of strong research by proper research professionals on these conditions that is making inroads into the patho-physiology - not based on flimsy research, selective referencing and opinion.Personally the only link that exists between autism spectrum disorder and chronic fatigue syndrome is sensory issues and an unknown cause. Sure both report food intolerances and impaired fatty acid metabolism, but why this is the case is very much unknown. 2000 years ago someone would have thought schizophrenia and a hyperactive thyroid were related based on the patient's inability to sleep well - but we now know better. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 7, 2009 Report Share Posted July 7, 2009 Ram,I hate to break it to you, but we're years past controversial in the "real" world ... I would think that your wife would be just as happy, if not more, for those healing from autism as those who she's treating. Just to give you one example of how things are changing, here's the latest from Dr. Green, a well respected celiac researcher. The forward wasn't available online or else I just couldn't find it but here is a review from the book the G-Free Diet where Dr. Green states that gluten affects more than the gut. This was already known but he was a hold out on this until this ... http://surefoodsliving.com/2009/04/27/the-...lbeck-a-review/"Dr. Green, well known and respected celiac specialist, finally admitted in Elisabeth Hasselbeck's book the "G free diet" that gluten doesn't just affect the celiac section of our intestines ..The foreword by Dr. Peter Green. Also, I?m glad that in the foreword, Dr. Green talks about non-celiac gluten sensitivity and states, ?Those with gluten sensitivity in the absence of celiac disease have a great difficulty getting satisfaction from the medical community. Without an abnormal biopsy, there is difficulty among many physicians accepting such a diagnosis. I, however, regard the diagnosis as valid, providing that celiac disease is excluded.? This is a different take than he had in the past when he referred to the gluten-free diet as unnecessary torture without a diagnosis of celiac disease. If you are a regular reader of mine, you know by now that I think outside the celiac box, so I was glad to see that gluten intolerance has been acknowledged in the book by both Dr. Green and Elisabeth.And in her last chapter, Elisabeth tackles the connection between Autism and the Gluten-Free Casein-Free (GFCF) Diet. I believe that she did it well, citing studies and quoting doctors to support the idea that a diet change could be beneficial for some autistic kids. She made the connection understandable and at the end of the chapter, points out (and I wholeheartedly agree) ?If eliminating gluten and casein from your child?s diet can even slightly reduce the severity of his ASD, why not talk to a physician who could help you make this change??"And perhaps you'd better understand where I'm coming from if you visit the websites I found while trying to heal myself from CFS. This was the first site I found and the mods here taught me about gluten ataxia (Dr. Hadjivassilou - 2002). I was trying to figure out why I all of the sudden didn't need a motorized cart and could walk normally. Imagine a weeble gumby combo ... This site has been recommended by a traditional neurological magazine too for sticking to proven medical research (Pubmed) for backing up what they say. http://brain.hastypastry.net/forums/forumdisplay.php?f=152This site is a new website set up by the original mods on Braintalk .. http://www.glutenfreeandbeyond.org/Here are just a few of the journeys of those who've been helped via the gluten free diet, etc ... http://www.glutenfreeandbeyond.org/forum/viewforum.php?f=14 They have a section dedicated to new medical info too ... Then there are the autism websites where you get to see how these parents learning as they struggle with all of this ... and you get to hear about the progress to. : ) ... I ended up on several while trying to fix my petite mals and then my kidney stones. I think it was www.Atkins4seizures.com and I know it's http://health.groups.yahoo.com/group/Trying_Low_Oxalates/ ... Both are moderated by professionals ... The reason I believe all of this isn't just what I've read but what I experienced before I even knew what to call those symptoms I had that were suddenly gone. I didn't start out thinking I'd go on the GFCF + diet and see if I could heal myself from CFS, it just so happened that my narcolepsy, ataxia, myoclonus just disappeared while I was trying to find something I could eat. Similar to what Elisabeth Hasselbeck realized when she was on Survivor. In researching my symptoms, I found out about DAN, Dr. Myhill, Dr. Hadjivassilou, Dr. Green, Dr. Fasano, etc. etc etc. I've read most of the articles by the CFS researchers and Dr. Grubb, etc but they don't seem to be looking for the root cause just the after affects ... which is why I'm not interested in just living with this or info on nitric oxide or H2S or whatever except that it gives us clues in what may be going wrong to cause these conditions to exist in our bodies. FWIW. I've tried to be very careful what I said I believed in. You mentioned the methylation protocal. I'm sure I said that Rich believes this to be the source of CFS. Not I believe this to be the source. I'm more interested in his theory now that Dr. Myhill believes it though. Her info has helped me several times. She helped me figure out that I had chronic hypoglycemia and needed to go on the Paleo diet. She's not one of those that said eat every 2 -3 hours for the rest of your life. She recommends the Sinatra protocal too which my doctor also recommends. I'm just learning about how supplements work since I couldn't digest them until Jan 09, so I can't attest to the benefits of all of them and frankly wouldn't just take these without first studying them and then going very very very slowly ... and I try to stick to those that are pharmaceutical grade, like Metagenics too, so that you know what you're getting. Have you tried any of this ? Are we talking traditional versus functional medicine here ? Many doctors, including mine, have switched to being integrative so that they can better help their patients. Can you elaborate on the research going on in the CFS world ? The CDC is a large US health organization and the funds they are allocating towards CFS has been mishandled in the past. Their latest trend is just another example of how they aren't taking CFS seriously. The current plan is a 5 year plan and I'm not waiting that long for them to be misproven. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 8, 2009 Report Share Posted July 8, 2009 LOL. In the real world where people need to have answers so badly that they will accept anything that fits their already preconceived opinion about the fundamental problems behind their illnesses? LOL I know that you believe this stuff and that is fine, but its not proven fact/reality. As an example you talk about gluten ataxia (even though there is only one research group and one detailed study relating to this issue Dr hadj from 2002) and celiac research as if its proven that this is relevant to orthostatic intolerance and/or POTS. There is zero research that connects real celiac sprue or conjectural gluten ataxia to orthostatic intolerance and/or POTS. Infact you even said that a gluten free diet made no difference to your orthostatic intolerance symptoms. That isnt to say that one day they might not find out that it is caused by something along these lines. But if you want to talk real world - then there is your reality - there is no research or evidence that demonstrates it so why you believe it has any relevance is confusing to me. You are ofcourse free to say and believe what ever you like, but when you report anything that isnt fact as fact then people need to clarify this point. Just because work by Vandy, Grubb et all, Stewart et al on POTS and OI dont give a warm and fuzzy- wholistic whole-of-body answer created through dodgy research, opinion reported as fact and very selective referencing ( you know, you should check the references in some of this stuff- their footnotes are quite often taken totally out of context ) doesnt make them any less relevant. Although Im not making a generalisation about all the research here - but the work on nitric oxide in CFS and MCS and the work on the methylation cycle was very badly done. The referencing was almost laughable. You want an answer that connects it all to gluten disorders or other random conditions you suffer from. Im sorry but so little is known about some of these conditions that anyone who claims otherwise is basically probably pulling your leg. Proper reseachers dont pretend to have all the answers - if they did they wouldnt get published in respected medical journals like the new england journal or medicine or in circulation - where pear review and provable results and conclusions are required. A professor I respected once told me that anyone who talks in definitives is demonstrating ignorance. You use the word believe a lot. Science isnt about belief - thats the domain of faith and religion. Science is about proven fact through analysis, argument and common acceptance and agreement. Sometimes this is frustrating - and as an example the delay in gastro-docs accepting helibactor what-ever-its-called as a cause of stomach - and sometimes you might not think its correct. But that is the process. As for your comments on autism. I wont even go there - im sure nothing I said would alter your opinions. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 8, 2009 Report Share Posted July 8, 2009 Dont get me wrong - Im not satisfied with just living with this. Im trying to find the answers, but Im questioning EVERYTHING not just some of it. Quote Link to comment Share on other sites More sharing options...
cordila Posted July 8, 2009 Author Report Share Posted July 8, 2009 OK - I'm going to blow the proverbial whistle and call for a time-out. I think there is value in BOTH positions. As for the what-is-belief-what-is-fact I would ask you (all) to consider that we don't ever really know - so standing on 'fact' is most likely never a good idea. Even science, while methodical and tested, is limited by the tools and existing knowledge at hand. We see frequently, once new tools are developed or discoveries are made, fundamental shifts can occur regarding what we thought we knew to be true. The good news is there are always new discoveries (whatever the source) around each corner! And those discoveries bring new possibilities of healing and well-being - and that brings me hope. Like Dizzy I have been profoundly helped by diet management - in particular the removal of gluten, which removed several neurological symptoms like slurred speech, dizziness (I used to have to walk by holding onto the wall), coma-like unrestful sleep, and it did also regulate and normalize my BP and pulse. I cannot answer why but I also cannot ignore the results.The Mayo Clinic suggests I treat my mito disorder with vitamin supplements and I've already seen extraordinary changes! And so these two things have prompted me to ask, if by food management and vitamin supplementation are the only things that have helped me (and I've tried LOTS of methodologies and treatments), why don't more doctors recognize the impact of nutrition in both forms? I would think the fact that Mayo Clinic supports vitamin therapy would encourage more doctors to recognize their value but that has not been my personal experience. BUT! I do see that changing through the 'grass-roots' efforts Summer talked about. And that's why I feel each person here is so valuable! Because each of us can speak to what occurs in our bodies and THAT is the most valuable research there is! I make it my personal mission to keep a rigorous 'health diary' and chart all manner of things from how I feel that day, to the weather, to what I ate, to what type of stress may have occurred that day - all in the hopes that my shady, half-baked, super unscientific research might help me (and my legitimate doctors) make some sort of discovery that will lead to my full recovery. And when I do find something that works for me, I can't wait to share it with everyone here - knowing full well that each body is different and what works for me may not work for others. -wb Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.