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Similarities Between Pots, Me/cfids And Autism


martiz
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Issie,

This is what I have found out. Still waiting for some additional information from others nebulizing.

What I have gotten so far is that nebulizing does provide some energy for some people but didn't seem to move much glutathione out of the lungs. Same problem with oral glutathione - can't move much out of the cells of the gut. Your friend took it orally because his gut needed healing. So, the people I have heard from so far showed continued oxidative stress (as shown by blood test) even after a year of nebulizing GSH - disappointing.

Other are using liposomal glutathione in oil on the soles of their feet for absorption. Others are taking oral liposomal glutathione and feeling the same effects, increased energy as long as they keep their dose below the level for increased detoxification.

Which brings me to a caveat I should have mentioned before. It is best if you do not have sources of mercury in your mouth (amalgams, crowns) as the glutathione can pull mercury out of your tissues and leach it out of fillings.

Seems that people are using liposomal cream to ramp up to taking oral liposomal products to ease into this.

Just a reminder, the methylation protocol I mentioned above are all about increasing the body's normal production of glutathione naturally by correcting any block in the pathway. Supplementing with glutathione goes against that and can be harmful if you have a high toxic load. And speaking of the immune system, in one of Rich's responses, he had found research has shown that T cells need a certain level of glutathione - too much or too little and they do not function properly so it's best to let the body do this naturallly.

I will write more when I get more information but I hope you will do more research before forging ahead. Let me know if you need additional resources.

Marti

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Thanks marti,

Knew it didn't assimilate well and had been told you might get a small benefit if taken orally - and my friend actually got a whole lot of benefit from it. I had tried it in the past orally and didn't find it to be very beneficial - to me. So wondering about other ways to assimilate it. Won't do anything - until I hear what you find out. Thanks for digging. I did start back on the colostrum - as having a pretty bad crash - right now, and hoping it will help me again.

Issie

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Ok, got it .. Thanks.

Fwiw, I'm seeing too many benefits from diet to think any supplements could do what healthy foods do.

Dr wahls explains this in her ted video. I need to change my sig to say wahls diet. I was eating too much meat and mistakedly took romain lettuce as equivalent to dark leafy greens.

I'm trying not to get too excited, but my energy has improved via her diet and eating more fruit.

Tc .. D

I watched the video. Very interesting. I am a long way from her diet though. I am gluten free, casein free, reduced glutamates. Food as it's grown BUT I don't do organic. I still eat meat - no beef or pork - just chicken breast and beef liver. Can't process anything else. I do eat some sulfur vegetables but the only fruit I can eat is apples or berries. BUT I do still eat potatoes. For some reason, I can digest those. No boxed foods or canned foods unless I am really, really ill. I used to juice. May try Kale chips. I love sprouted beans.

Most of my diet sort of fits within her guidelines but I would still consider myself a long way off.

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Something to consider with chicken - was told this by a doctor. Unless the chicken is free range, antibiotic free and eating worms and such - they are injected with tons of antibiotics and estrogens and fed usually soy which is connected to glutamates. I found out, I have to really be careful with chicken. We think we're doing ourselves good - but, we may not be. This doctor swears it will imbalance hormones - especially in boys and men.

Issie

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Which brings me to a caveat I should have mentioned before. It is best if you do not have sources of mercury in your mouth (amalgams, crowns) as the glutathione can pull mercury out of your tissues and leach it out of fillings.

AAACK! This statement is incorrect! Sorry- I guess I was more brain fogged yesterday than I thought! Glutathione does not leach out mercury - chelation does do this and so before starting chelation, you must have your amalgams removed. Separate topic that does not apply here. Sorry!

Glutathione will help the body remove toxins (that part of my quote was correct). BUT if your elimination pathways are sluggish or not very efficient, the glutathione will help the liver's Phase I work better (collecting the toxins) but it does not help Phase II as much (removing the toxins through bowels) so you end up with re-distributed toxins and feeling much worse than before. Usually people take doses that are too high and they haven't learned how to control detox.

(thanks for the chicken info - I know that's true and probably non organic beef liver isn't that great either. I just can't afford organic. I used to raise chickens for the eggs and the meat but I named them so I couldn't eat them. I had chickens, ducks, goats and pigeons. I was going to put in a pond so I could stock it with fish. But animals require a lot of work and I am just not well enough. This year, I put in a mini garden so maybe some of what I eat will be healthy!

Marti

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Issie,

I sent you two PM on the topics we discussed.

I will probably be off the list for the most part for the next 2 weeks as I am preparing for my appt with Dr. Suleman (reading two autonomic books which I should have done earlier!).

Hopefully, I will be recovered from the trip quickly so I can report on his ideas.

Thanks

Marti

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I found this thread while searching for "23andme".

I have to admit I'm pretty skeptical of Rich v's work. For me I like to look at results of these theories. I just don't think enough people are being cured by all of these supplements...Now that people are actually getting these things tested, I think it will either confirm his theory or send him packing or revising his theory. A few years ago when no one could afford to get this run, they were just guesing what methylation supplements we needed.

I am pretty sure Iv'e read liposomal glutathione is just as good as IV's. My husband started taking a different form of glutathione. Can't remember off the top of my head.

Any way, I'd be happy to compare the results of the Yasko snp's to you or anyone else that is interested. In fact I'd be happy to compare other stuff too if you are interested. I'm waiting for the sale to buy my husband a kit. It was well worth the $$ to me.

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Hi Dana,

I have been involved with the Yahoo group of ME/CFIDS patients who have been trying this experimental protocol. I think people forget that it is a theory, is not being touted as a cure and it's the early stages with a long way to go to find out what works and what does not.

Many people were guessing at the genetics (including me) but there have been 50-60 ME/CFIDS patients who were not guessing. They paid for Yasko's testing when it was closer to $800, all of the tests which are run regularly, the expensive supplements. I, for one, am thankful that there are people willing to pave the way. And I am thankful that Rich works so hard at helping the ME/CFIDS population - and he doesn't get paid for it. So, I was a little disturbed by your "send him packing statement". Even if he is dead wrong, he would not be sent packing. I have been on forums with him since 2004 and he is very compassionate and very helpful. Sorry if I sound very protective but I have seen him help people day in and day out for YEARS. He readily admits he is wrong when he is and has been instrumental in bridging gaps between ME/CFIDS researchers.

Anyway, I have created a spreadsheet from 23andme data and converted it to Yasko (I think!). I would be happy to share that with you when I have looked it over one last time. I am heading to Dallas to see Dr. Suleman so it may be a while before I can get that to you.

Thanks for the tip on glutathione. I plan on restarting that after I am stable on Dr. Suleman's suggestions.

Reading your signature, I am impressed that you are fast food free for 5 years. That is quite a feat in today's world. I try but eat out once every 2 weeks.

Take care,

Marti

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I could sense you were not happy with my post. I'm sorry for upsetting you with my "send him packing" remark, but scientists do need to be open minded and be willing to adapt or even completely abandon a hypothesis if enough data contradicts previous findings.

In general I'm a highly skeptical person until someone can show me reproducible results or show me what they are doing has merit and some logical sense behind it. I have had Rich look at some of my tests and when my results did not fit his mold or paradigm he told me that I still needed to take all of the supplements. So in a sense, it did not matter what my tests said at all. To me when a researcher or theorist does that, then in my logical view point, that makes me question everything else they have presented as "truth".

We will see how things go now that a larger sample of CFS/POTS patients are getting tested through 23andme and Dr. Amy's panel. I never had any interest or means of testing when it was that expensive. I haven't been able to work for over 6 years now due to POTS, so I have to spend my money wisely. Also Rich does make at least some money off of this though by offering consultations. He contacted me about doing it with him and if I recall the cost was open ended, depending upon how many hours he spent on you. We are talking $1000+ here.

I try to find people who have been helped by any theory whether that is Rich's methylation theory or something else out there. We can theorycraft on paper what might help someone, but does that translate into real world results? I'll have to start looking again to see how many more are actually getting better, but when I checked 1-2 years ago it was a very small amount. That's why I posted here. I'm encouraged by seeing many people are testing for these genetic mutations and I want to compare results with people. If we can find those who got better with Rich's methylation protocol and find out which SNPs were comparable in those people, it may help give us a better understanding.

If there is anyone else who would want to compare with me, I'd be delighted to share. You can PM me on here. I figure we might as well get together and see what we have in common especially since we have POTS. I'm seeing I have some mutations in a few SNP's on the COL1A1 gene, which is assocated with collagen and EDS (I don't have it though). I'm particularly interested in those with HyperPOTS symptoms. I have double mutations on 2 of the COMT genes that Dr. Amy tests for (so does 23andme) which may give some more understanding as to why I have elevated NE levels. Or all of this may mean nothing...HAHA. Genetics are not well understood.

I have translated all of my 23andme results into Dr. Amy's notation method, so I can easily compare to anyone. Thank you for offering the spreadsheet. It may be the one I used to help me understand all of this. :) Genetics are not easy to grasp at all...

Good luck to you and I hope this doctor helps you!

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Hi Dana,

My thoughts at the ***.

regarding researchers, Rich, etc.:

***No problem. I do understand your points - there are many facets of both illnesses (POTS, ME/CFIDS). I have seen Rich switch directions and I think, compared to most researchers, he is very humble and open minded. I am sorry you had bad experiences. I am thankful for any researcher who is willing to find out the cause of these types of illnesses. I know some of them have other agendas and big egos and convinced that their theory is the only correct one. Many researchers will be wrong when any one of these illnesses is understood. There are so many directions for even one of these invisible illnesses. But I do think that even the wrong theories will be helpful in some way. Look at all of the advances in science that were accidental - the goal was to invent something completely different - think White-out and the sticky note adhesive!

If there is anyone else who would want to compare with me, I'd be delighted to share. You can PM me on here. I figure we might as well get together and see what we have in common especially since we have POTS. I'm seeing I have some mutations in a few SNP's on the COL1A1 gene, which is assocated with collagen and EDS (I don't have it though). I'm particularly interested in those with HyperPOTS symptoms. I have double mutations on 2 of the COMT genes that Dr. Amy tests for (so does 23andme) which may give some more understanding as to why I have elevated NE levels. Or all of this may mean nothing...HAHA. Genetics are not well understood.

I have translated all of my 23andme results into Dr. Amy's notation method, so I can easily compare to anyone. Thank you for offering the spreadsheet. It may be the one I used to help me understand all of this. :) Genetics are not easy to grasp at all...

***I am sure it is the same one you have found. Unfortunately, my spreadsheet is data for my son who does not have POTS, ME/CFIDS or Austism. He does show some significant issues that point to dysautonomia but not full blown. Or full blown ME/CFIDS. Or even full blown autism (Aspbergers) He definitely has a methylation defect and has done well on a simplified version of the protocol. He could be doing better and now that we have his 23andme data, we are going to revise his protocol when he is home from college. Let me know if you want me to send this to you now (and how). I won't be around for a week or so until I get back from my trip and recover but I would very much love to review this data and see how we can track symptoms to gene defects. (by the way, we see a Yasko doc in Texas and she doesn't run the Yasko test anymore as she has found that just because a gene show a variation, it doesn't always translate to the bloodwork. I think this is a short-sighted attitude. Researching the 23andme data/Yasko SNP's was a snapshot of my son's health. No surprises for the genes that showed a SNP polymorphism.

***The only genetic tests I have done so far are two of the SNP's for the MTHFR gene. I am +- for C677T and +- for A1298C. The latter is what interests me as there is a chapter in Dr. Low's Autonomic Primer that talks about BH4 deficiency with which I have been diagnosed (due to the A1298C SNP). I haven't been on the protocol to fix this due to financial constraints. Are there specific genes that you have researched that I could ask Dr. Suleman about? I have been exhausted getting ready for the trip that I don't really have a list of questions. The ACE deletion seems to be related to POTS but 23andme doesn't seem to do this one.

Good luck to you and I hope this doctor helps you!

***Thank you so much. Look forward to working with you!

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  • 3 weeks later...

I know this thread is comparing similarities..... but thought i would throw out here that i had emailed the link about ME that someone provided on here, to my doc and he is amazed at how 'right on' ALL my symptoms fall underneath..... our next appt is def going to be talking about this in more depth. I think he sees it as we see it here.... that CFS needs to be changed to ME in name..... as it seems to be more 'perfect' in ALL my symptoms plus a more respectable name than chronic fatigue.... cuz chronic fatigue doesn't get it...... he was excited to read it. :)

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Hi Hibi,

If it was the link that I provided, please remember that those are proposed criteria that have not been accepted or approved yet. The group that created that list of criteria are some of the bigger names in ME research which is why it is so far the best criteria thus far. The next best is the Canadian Consensus Criteria. The worst is the Fukuda Criteria or the one before that and I can't remember what it was called - the one by Ramsey that was psychological in nature.

Have you also been checked for chiari malformation and/or EDS? That is what I am doing now and it's amazing the the Chiari symptom list is so much like ME. The EDS list is a little different.

Marti

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Hi Hibi,

If it was the link that I provided, please remember that those are proposed criteria that have not been accepted or approved yet. The group that created that list of criteria are some of the bigger names in ME research which is why it is so far the best criteria thus far. The next best is the Canadian Consensus Criteria. The worst is the Fukuda Criteria or the one before that and I can't remember what it was called - the one by Ramsey that was psychological in nature.

Have you also been checked for chiari malformation and/or EDS? That is what I am doing now and it's amazing the the Chiari symptom list is so much like ME. The EDS list is a little different.

Marti

Hi marti

Yes, we are pretty sure im a dead ringer for EDS... especially with my latest go around with my TMJ. I have had many mris and such, seen 2 neuros and no one has ever mentioned chiari..... although i am well aware of it. I may see if my doc can pull up some mris and see if they can detect a chiari malformation. But the ME is such an even more right on dead ringer for me. I have every symptom and then some.... very intriguing there.

Yea, it was prob your article that you posted.... my doc liked it, and he is quiet interested in it.

:)

i need to read up again on chiari..... i have a friend who i talk to everyday on facebook who has it, and one of her children has it and they live very close to me, but i first learned of it on mystery diagnosis and pondered those years ago, if i might have it, due to the eerily similar symptoms.

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The way that this MAY tie in together is like this:

The EDS causes weakness in tissues everywhere and possibly the tissues in the cerebellum (the back lower part of the brain). are weak so CSF gets trapped in brain since brain tonsils drop down (possibly due to EDS weakness). This restriction in CSF back and forth between brain and body and possibly blood flow may be what is causing POTS and ME.

At least that is what I am piecing together.

Marti

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  • 2 weeks later...

I've finally had some time to look over my 23andme results in regards to the methylation theory. I think it is interesting and some people may see some benefits with methylfolate, especially those with the compound heterozygous or homozygous mutations. However, it's important to remember that this is all very much theory and in it's beginning stages. I think some of the other genes (COMT, MAO A, NAT2, P450 enzymes etc) need to be further investigated in us POTSies. It very well may help us to understand why we have such different symptoms, reactions to meds etc. yet mainstream researchers aren't even looking in these areas.

After seeing my results it is no wonder the one size fits all methylation supplements were diasterous for me. I test as a overmethylator so all of these protocols assumed everyone was an undermethylator. That is likely why my mood was all over the place and I would get heart palpitations with seemingly innocent supplements. It probably also explains why I feel like I have HyperPOTs but I don't have the high BP associated with it.

Now that I have this new knowledge, I'm going to see what I can do... I've already started on GABA and am looking to get some hydroB12 instead of methylB12 to see if I notice any mood changes. From there, we will see how I feel and then dig deeper. I don't see this as a cure by any means, but it may help some of you feel less fatigued or have less brain fog which are the most common symptoms here. I tend to be on the opposite end. I have too much nervous energy and obsession, which doesn't feel very good either.

We will see what happens, but I just wanted to report my updated findings. :D Hope everyone is doing well!

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There is a good study; http://www.ncbi.nlm.nih.gov/pubmed/16198209

Reduced cardiac parasympathetic activity in children with autism.

Ming X, Julu PO, Brimacombe M, Connor S, Daniels ML.

Source

Department of Neuroscience, New Jersey Medical School, UMDNJ, Newark, 90 Bergen Street, DOC 8100, NJ 07103, USA. mingxu@umdnj.edu

Abstract

Many of the clinical symptoms of autism suggest autonomic dysfunction. The aim of this study was to measure baseline cardiovascular autonomic function in children with autism using the NeuroScope, a device that can measure this brainstem function in real-time. Resting cardiac vagal tone (CVT), cardiac sensitivity to baroreflex (CSB), mean arterial blood pressure (MAP), diastolic blood pressure (DBP), systolic blood pressure (SBP) and heart rate (HR) were recorded in three different groups of children. The symptomatic group (n = 15) consisted of those with autism who exhibited symptoms or signs of autonomic dysfunction. The asymptomatic group (n = 13) consisted of children with autism but without symptoms or signs of autonomic dysfunction and the healthy children were in the control group (n = 117). The CVT and CSB were significantly lower in association with a significant elevation in HR, MAP and DBP in all children with autism compared with the healthy controls. Further more, the levels of CVT and CSB were lower in the symptomatic than in the asymptomatic group. The levels of CVT and CSB were not related to age in all the three groups. These results suggest that there is low baseline cardiac parasympathetic activity with evidence of elevated sympathetic tone in children with autism whether or not they have symptoms or signs of autonomic abnormalities.

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Im sceptical of theories that come from patients rather than doctors, usually with an incomplete understanding of basic physiology and im also suspicious of any treatment protocol that involves spending large amounts of money on unproven supplements while the doctor's house suddenly gets more and more renovations.

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So true many quacks get on the band wagon, when they think they can benefit finically.

I did find the above study of interest though as ASD runs alone side all the folk in my family that have EDS, sure something must link all this together!

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Its all about evaluating whether its too good to be true or whether its supported by scientific backing. Which in most cases in CFS science it isnt, usually it defies basic understandings of physiology yet people are desperate.

XMRV is a fine example - the story was too good to be true. An unemployed viralogist sees a news show on CFS and decides its a retrovirus, rings the institute, is hired and then manages to find the FIRST retrovirus she looks for in 97% of patients! I mean I cannot believe alarm bells werent ringing and how reputable doctors jumped on the bandwagon ignoring the obvious logic.

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I asked my sister about antivirals - she has CFS and sees one of the top leading doctors in the country for it. Her doc said they weren't having real good success with them - the percent she gave of success was very low. She said that most people are desperate and will try anything - but, since my sis doesn't have insurance and the success rate is so low - she didn't recommend it. It's not really appearing that a whole lot of things is very successful for CFS. If there is something, someone tell me so I can tell my sis. She is miserable with it.

Issie

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