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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Finding appropriate support groups, complying with Cutler, Shade, Wilson, Fredd, and diet programs.

Sam7777

Senior Member
Messages
115
It has been about 9 months that I have known about the fact that I actually have to detox metals from my body. Or that I at least have a solid amount of evidence suggesting I should.

I cannot prove that it will work, or that it is the true cause of my suffering. But I cannot prove that it is not. And I have a terrifying amount of evidence, authors, and international published scientist backing my arguments that I have summed up over the last year and a half of research.

I knew about and understood much of Freddd's protocol for about the last 20 months. I have known about Cutler's protocol for close to a year and a half. I only recently learned in the last 12 weeks about Dr. Chris Shade and QuickSilver. I have known about Dr. Larry Wilson's Nutritional balancing program for close to a year and a half as well. I have Natasha Campbell McBride's GAP diet to go by as well.

With much ardent effort and little success, I have not found people in my same position who also understand these protocols and authors, let alone who have knowledge about the alternative health issues being debated by the bigger names, such as Andrew Wakefield, Klinghardt, Huggins, Haley. And in fact Gary Null has interviewed countless other big names. Albeit many important authors are discussed on Phoenix, so this is an informed community.


This is though beginning to overwhelm me, because I am doing it alone, without other examples to go off of, without a significant number of people who are aware of these things.

Part of the reason is simple. I really mentally have declined in the last 12 months to a point where, participation in things with other people, and reading in general is EXTREMELY hard. Because YES I did severely harm myself with ALPHA LIPOIC ACID and other herbs which later according to Chris Shade serve to greatly enhance the function of heavy metal removal. I am either one really smart person or one really stupid one, but when I decided to self treat with no protocol or community of people a year and a half ago, it was the worst protocol imaginable for an unsuspecting sufferer of metal poisoning.

Some call it CFS, or adrenal fatigue, or fibro or whichever. I know what I took, and I took it to restore my adrenals not to remove metals or to worse yet crash myself, which is what happened. I am at a point now where I am struggling to believe that it is B12 deficiency and metals. I have no proof to say it is not. But that is just the sad state my mind is in.

If I had metals, and if metals can truly be slung about at the biochemical level by cheap OTC alternative health supplements, causing awful problems, then I did the worst thing possible when I did. But according to these treatment protocols, I was using the right supplements, just in the wrong dangerous ways. It took me quite a long, long, long time to realize how important the supplements I was taking a year and half ago experimentally and casually, are to people who already have anemia, CFS, and metal toxicity, and other autoimmune issues. So in a way, I was very very spot on early on, but naturally then had the faculties to backtrack, and adhere to a regime and participate in a community much more diligently. This is not the case now, because of my "Memento"- like memory problems.


So I believe now more than ever I need to meet people who are aware of these authors I mentioned, and I need to become more involved in some way with the Phoenix board as I can be. I have countless ideas, but little results, and little in the way of others empiracle data to go by.

There were times when I was taking 30 different supplements including ALA and methyl B12 like Ray Kurzweil. If this had been done scientifically, empirically, and in a group, and observed, the information would have been invaluable. I see people online, and in treatment groups, and there is a pussyfootedness about the entire process. Or more so there is a lack of cohesion to the many different treatments. It is very unorganized. They think that Cutler's approach alone will do it, or that just B12 is gonna be the end of the discussion. But when you see the big picture, you realize how do or die the alternative diets and supplements are.

B12 might work flawlessly, which it should, given the information layed out here by Freddd. I think anyone in my boat, and just about anyone on curezone, or Phoenix oughta be put on the Dead Lock Quartet almost certainly for good measure. But if that person with CFS has metals, and has celiacs, and takes pharma, and they continue to remain overweight, and they do not address the co-morbid issues, change the diet, etc how can you really dismiss the rest of the supplements and treatments. The most aggressive treatment really I guess I have seen is proposed by Larry Wilson, Klinghardt, and Chris Shade. But I can't say I have met anyone who had anything to say about the after affects of their advice, especially Shade and Klinghardt. Beacuse as Cutler puts it "these people who do get better don't stay online long, they get better, go back to their life's and you never hear from them again".

But this makes it difficult to properly get feedback from a community consensus. It is like these people are leprechauns and I am the fool looking for the pot of gold at the end of the rainbow.

Please, if you have had experience with these protocols, and had any success, and are aware of these names and issues, lets try to connect. I need to become considerably more organized, and meet other organized people in this situation.

I had listened to Chris Shades Youtube videos alone, via Mercola. The information was staggering, taken in account with the GAPS diet and with Freddd's Dead Lock Quartet, it is a vivid picture of what kind of disease processes are really occurring.

I feel that there is either a missing section from the Phoenix forums, or at a bare minimum there is some kind of sticky topic needed to begin to convey some of these issues related to the large amount of supplements and protocols involved with CFS that is associated with b12 and metals.

I believe this is because Phoenix is a CFS forum, and of course naturally not strictly dedicated to heavy metal chelation, because of the multi factoriol causes of CFS. So many of the non CFS related cases of known metal and anemia related issues go under the radar. Some of these people never assume they have CFS and never even come to this website. I have no doubt there are important forums I have yet to find that are relevant.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi Sam. 10 years ME/CFS. I was deteriorating badly, especially w/ an out-of-control nervous system until Jan. 2012, when I followed a link by a comment to an article, which led me to GAPS. The name itself sounded like what I'd been searching for. I was terrified by this diet, had been vegetarian 30 years. Still, I jumped. Within 3 days my nervous system calmed. As time went on I joined yahoo GAPS forums. There I read of many other contributing factors to my illness. Eventually I uncovered pyroluria, then MTHFR defect, and later still a whole selection of genetic defects in my methylation pathway. Each of those discoveries led me to add supps which have been life-changing.

Once I had my SNPs I contacted Yasko forum asking for help choosing RNA formulas. They strongly suggested heavy metal and amino acid testing. In fact, the test I chose didn't do aminoes, but told me I also have SIBO (bacteria in small intestine), also metals, especially aluminium. Natasha Campbell McBride (NCM) and others discuss how metals + bacteria have a relationship, need to be detoxxed accordingly. My initial detox regimen was just the early stage GAPS diet with juicing carrot and lettuce. I'm on a v limited diet, due to sulfur and histamine intolerances. Once I discovered that I actually have SIBO, I've added chlorella, olive leaf ext, grapefruit seed extract (which I use in footbath, not orally). I've also found a clay with additions to detox aluminum, which I also use w/ charcoal in footbath.

I've read a lot about Cutler, and if I were going to do something more radical, I would follow his protocol. But NCM assures us that the diet + juicing is effective. As I'm into my 2nd year GAPS, I'm still going very slowly w/ detoxxing. I've felt so bad for so long that I'm not at all interested in having a big die-off drama. And the thing that's most off-putting about Cutler is the need to dose thru the night. My sleep is fragile, It's taken 10 years for me to have reliable sleep through the night, so I'm not willing to do this.

I've been incorporating Freddd's protocol over the past 6 months. I'm having good results, or rather, excellent results. When I raised my B12 too much at one point, I got a histamine response, rash outbreaks. The same hapened later when my methylfolate was too high. It took me awhile both times to get to the underlying cause, and each time, when I dropped the dosage, the rash cleared. I'm now using 1 mg methylfolate, 2mg methylB12 (Enzymatic Therapy, after beginning w/ Jarrow. thinking about trying Webber, recommended by a forum member), AdenoB12, and L carnitine fumarate (LCF). My experience has really validated Freddd's protocol, that all 4 of the Deadlock Qtet are necessary, that Fumarate is the essential form of carnitine, that hydorxy B12 is useless, and AdenoB12 essential, and that the folate and B12 need to be carefully titrated in relation to one another.

I'm happy to talk w/ you privately if you want, or continue here in forum. I need to read your whole post more carefully to comment on other than these basics. I also know about Wilson, although my thyroid protocol is different from his, and Klinghardt, whose protocols I'm familiar with, and from which I've taken some elements. OK, enough for today. cheers, ahmo
 

Sam7777

Senior Member
Messages
115
Your story more reflects that which I typically see on the Celiac forum, which I barely read because of its narrow subject. It is the curezone forum I learned that was just too uninformative, so from what I can tell, there is not a better forum for me to spend my time on than Phoenix. But Phoenix is really scattered, as I stated above. Your case and story is exceptional and not the usual in the fact that you have "been around the block" with these names, authors, protocols, etc.

Yes, and I in a way and sense, through my own means before ever learning of these issues was led to the Weston A Price diet, rather than the GAPS diet. The GAPs diet combined with aspects of Nora T Gegaudas book Primal Mind Primal body, Gary Null's work, Wilson, and Klingdhart essentially constitute what I think is neccessary for the diet portion of the issue. While having poor luck deducing Cutler's and Shade's methods, I heard good results on diet.

It was always the same for the CFS people with genuine methylation and metal problems. Do -not-go-vegetarian. Do-not-eat-grains/carbs/starches. The nuances of NCB GAPS book could be baffling. I never truly read the whole thing, (not to say I don't understand it). I listened to her videos. And I need her book on audio. With my "issues" I cannot read or write like I could. Short term attention issues. So I have to listen, and I guess I have healed pretty well or stabilized, because I learn by listening. But NCB is truly radically intelligent. In fact she dumbs it all down quite a bit for the average person. It was Phoenix that I finally came to where I kinda hit a wall with my knowledge of chemistry.

In my case I really really screwed up on Weston A Price, because I forwent red meat for 2.5 years. And as if that wasn't enough to do me in, I was eating salmon like 3 times a day for the entire period! Talk about mercury loaded fish! After I learned about the toxicology studies from cutler and Shade, I knew my goose was cooked. Just about NO ONE can eat that much fish and walk away unscathed.

But now my diet is crap. I got into a bad situation where I couldn't stay in the city where I had access to a farmer market and a co-op organic grocery. I started to get far too confident in the amount I could veer away from the good diet, and it has really bowed me down just in the last 12 weeks. This is the first time I haven't been consistent to a degree at all, in 4 years. I have put on weight too since the mishap. But, I am suppose to get the tainted tooth out soon, and such as I have been noted - it may cause my immune system to boost back up considerably. I am not drilling, just tooth and all extraction- well whats left of it, being that its rotten.

Though the 6 month I spent getting that should have helped me recover some. But I am truly thinking I am in the wee- early stages of CFS. I am by all means far more mentally impaired because of the mishap with "unintentional" chelation. Whatever happened, it was all provoked in a small time frame by mega dosing a kitchen table approach of alternative health supplements. So the overarching underlying involvement of the CFS causation models are undeniable. I have had a trace mineral hair analysis. It had a 4 low pattern via Wilson's warning. But low hair mercury, suggesting no detox capacity. I suspect lead too for other complex reasons. Low molybdenum, iron, potassium, manganese, magnesium, calcium, moderately low selenium. Per Wilson and Cutler, this is a dead ringer pattern for heavy metal mineral displacement induced deficiencies.

What I try to do, is take all this data and put it on my pearltree account which is the same username as on here. I am pretty sure if a lot of sick people saw that pearltree account, they would save about 5 years of undue searching, but like I said above, my ability to reach out to people and connect is pretty nil.

I have even seen studies of people with drug addictions showing up to have many of the same methylation and nuerotransmitter defects in the COMT and MOA etc.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi Sam. Yes, most of my Cutler info also comes from Curezone. I've found it v helpful. I'm certain that as you mention many addictions are due to these defects. My limited understanding is that low hair mercury in someone like you indicates not "low detox capacity", but that the Hg is locked down, not moving, and once you start detoxxing it shows up in hair. I haven't done hair testing for several years.

My initial steps for detoxxing metals was by increasing Se, Z, molybd more than replacement levels: 200mg Z, 400 Se BID, 2 mg Mbd BID. I'll continue at these doses until I've gotten through this process.

I've also been using adrenal glandular for 1.5 years. It's made a great difference in my ability to tolerate stress (which is nearly non-existent). Also glandular hypothalamus and thymus. My mental abilities have been improving since I started GAPS, but nothing like before. And in this detox phase I don't have any energy to spare. But the amount of inner relaxation and renewed ability to think, to type without my arms stressing, to continue slowly adding to my 6 minute rebounding, these are all terrific improvements from my former state. Best to you, ahmo
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
I remember you from curezone. You sound a lot like me, maybe aspie, with an overactive rational mind, have the skills, the vocabulary, the ncbi´s, the study background and yet you dug a deeper hole for yourself when you tried to put together a protocol. I can talk about one of these protocols and shed some light. I have done Nutritional Balancing for around three months. The hair test analysis was fascinatingly accurate about my sympathetic dominance and quite bad hypothyroidism (from autoimmune). It was a fail in terms of results, even while I was feeling better, and I dont see the science behind it. I know of people doing it for years without real gains. Its normal to feel better with so much supplements and some pork thyroid gland if you are hypothyroid and defficient in almost everything like moi.

Yeah I have seen some of those studies. In my opinion mental health its like a ghost, psychology its a failure because the mental comes from the physical to a greater extent than they pretend, in reality the mind its the result of the interaction of the soul matrix and the body/computer plus the experiences that this entity gathers and how it assimilates them (traumas). If your hardware its defective to begin (genetics) OR/AND it is damaged later on (neurotoxins) you get defective reactions, like delayed or exaggerated. You feel depressed, and objectively enjoy life less than others because of defective dopamine or what not, so you do drugs. These things also influence each other or are accumulatuve as people genetically defective in serotonin have been shown to get a greater percentage of PTSD.

About what ahmo said.My diet its paleo and I juice a liter per day of various vegetables. Its obviously not enough and a weak bandaid because I am getting worse, especially in the mental department which its a consequence of things like getting intestinal inflammation or chronic insomnia. Getting more agressive and hysterical when these episodes occur, my patience for being sick and pained was outnumbered long ago. Everyone its different, I am a whiny-boy to the bones lol My family suffers this and its becoming a problem. I get suicidal as well, for example if I get a very strong headache that doesnt let me sleep I will keep saying that I want to die out loud and when my parents wake up from the noise I ask my mother advice about how I could end my life etc. Tired of suffering, simply... I also blame them to some extent for never looking into alternative health for my aspergers back in the day, and making me lose sooo much time in mainstream doctors, homeopaths and even exorcists nowadays...

Fixing the gut to stop that source of autoimmunity and then methylation/detox metals makes sense.
I am seeing a doc here in Spain that does Cutler and Yasko (this spanish doc its a famous specialist in autism) in less than two months and we will see. I do not have the focus/abilities/knowledge to do this in my own and hope she can put together a protocol for me. Also does Low Dose Naltronexone. Hope I can come back and give some good reports about these treatments in some months.

PD: My avatar photo its how I looked three years ago. Now I am that person haggard with mild hypothyroid features http://www.jcrows.com/hypothyroidism.html but the uglyness varies depending of the day heh heh.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I remember you from curezone. You sound a lot like me, maybe aspie, with an overactive rational mind, have the skills, the vocabulary, the ncbi´s, the study background and yet you dug a deeper hole for yourself when you tried to put together a protocol. I can talk about one of these protocols and shed some light. I have done Nutritional Balancing for around three months. The hair test analysis was fascinatingly accurate about my sympathetic dominance and quite bad hypothyroidism (from autoimmune). It was a fail in terms of results, even while I was feeling better, and I dont see the science behind it. I know of people doing it for years without real gains. Its normal to feel better with so much supplements and some pork thyroid gland if you are hypothyroid and defficient in almost everything like moi.

Yeah I have seen some of those studies. In my opinion mental health its like a ghost, psychology its a failure because the mental comes from the physical to a greater extent than they pretend, in reality the mind its the result of the interaction of the soul matrix and the body/computer plus the experiences that this entity gathers and how it assimilates them (traumas). If your hardware its defective to begin (genetics) OR/AND it is damaged later on (neurotoxins) you get defective reactions, like delayed or exaggerated. You feel depressed, and objectively enjoy life less than others because of defective dopamine or what not, so you do drugs. These things also influence each other or are accumulatuve as people genetically defective in serotonin have been shown to get a greater percentage of PTSD.

About what ahmo said.My diet its paleo and I juice a liter per day of various vegetables. Its obviously not enough and a weak bandaid because I am getting worse, especially in the mental department which its a consequence of things like getting intestinal inflammation or chronic insomnia. Getting more agressive and hysterical when these episodes occur, my patience for being sick and pained was outnumbered long ago. Everyone its different, I am a whiny-boy to the bones lol My family suffers this and its becoming a problem. I get suicidal as well, for example if I get a very strong headache that doesnt let me sleep I will keep saying that I want to die out loud and when my parents wake up from the noise I ask my mother advice about how I could end my life etc. Tired of suffering, simply... I also blame them to some extent for never looking into alternative health for my aspergers back in the day, and making me lose sooo much time in mainstream doctors, homeopaths and even exorcists nowadays...

Fixing the gut to stop that source of autoimmunity and then methylation/detox metals makes sense.
I am seeing a doc here in Spain that does Cutler and Yasko (this spanish doc its a famous specialist in autism) in less than two months and we will see. I do not have the focus/abilities/knowledge to do this in my own and hope she can put together a protocol for me. Also does Low Dose Naltronexone. Hope I can come back and give some good reports about these treatments in some months.

PD: My avatar photo its how I looked three years ago. Now I am that person haggard with mild hypothyroid features http://www.jcrows.com/hypothyroidism.html but the uglyness varies depending of the day heh heh.

Hi Beyond. I am sorry you are having such a rough time. In my experience, you are so right about psychology. Not only did I study psychology and work as a psych nurse, I used every type of therapy available over 30 years. I was always following the body-mind path. Until the past year when I understood how that had all been in vain. I really appreciate your reference to PTSD and serotonin. I just decided to renew my practice w/ EFT ( emotional freedom technique) to try to get rid of the way I'm so easily triggered by things in my environment. I've known for a long time that my PTSD-type responses are just not proportional to the stresses I've experienced. But it's very real. And you've nailed the reason. I've had great results in my general emotional stability using Yasko's suggestions of low dose lithium. Maybe increasing it might help with this; I'll try.

And I also get hysterical, aggressive, and wish to die. I've had suicidal feelings dry up from one day to the next with 1) a particular bodywork session released something in my neck; 2) starting one of several supps. BTW, this might be of use for you. Hypothalamus glandular calmed a lot of my over-reactivity, adrenal gland has greatly helped my stress response. However, by normal standards, I'm still v vulnerable. I hope you have excellent results with your new doc. Even though you've been through all this misery, you're still young and have every possibility of regaining health and a life worth living. My best wishes to you, ahmo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Sam,

About 10 years ago, during the first year, I did an N=1000 questionnaire with single dose MeCbl development. There was a small subgroup of drug using teens. At basically a 100% response rate a typical quote was "That is the best legal high I've ever experienced". That says a lot.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Glad that your experience have been the same Ahmo! That confirms I am not making this up to excuse my "loser" behaviour lol

Oh yeah I am over-reactive, easily offended to ridiculous extents, and paranoid..."vulnerable" as you put it, yes! I will say the truth, I avoided checking this forum for weeks because I was afraid someone could say something unpleasant because of my rant, there you have a good dosage of both paranoia and vulnerability/social phobia. I have 94 comments which are probably insults unchecked in my old youtube account because when I get offended or angry my cholinergic urticaria (autoimmune in origin) flares up and my heart starts beating... since being a child people know its easy to offend me and for minutes or hours it will be seen in my facial features that the emotions arent "digested" yet.

Thanks for the heads up! Best wishes to you as well, ahmo. I wrote that while in a "down" phase, I get all dramatic. My current life isnt much better, but the attitude shiftts. Maybe its the Hashimotto´s. Going deeper into spiritual truths its helping a lot with coping with my life. Great to know about glandulars and supps helping, indeed I have been interested in HPTA glandulars for a long time!

I knew that methylation (detox) and gut healing were the way, its cool to see you are having results with them! I think most of us can get results with those. 40 days to go to this doc...:thumbsup:
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Glad that your experience have been the same Ahmo! That confirms I am not making this up to excuse my "loser" behaviour lol

Oh yeah I am over-reactive, easily offended to ridiculous extents, and paranoid..."vulnerable" as you put it, yes! I will say the truth, I avoided checking this forum for weeks because I was afraid someone could say something unpleasant because of my rant, there you have a good dosage of both paranoia and vulnerability/social phobia. I have 94 comments which are probably insults unchecked in my old youtube account because when I get offended or angry my cholinergic urticaria (autoimmune in origin) flares up and my heart starts beating... since being a child people know its easy to offend me and for minutes or hours it will be seen in my facial features that the emotions arent "digested" yet.

Thanks for the heads up! Best wishes to you as well, ahmo. I wrote that while in a "down" phase, I get all dramatic. My current life isnt much better, but the attitude shiftts. Maybe its the Hashimotto´s. Going deeper into spiritual truths its helping a lot with coping with my life. Great to know about glandulars and supps helping, indeed I have been interested in HPTA glandulars for a long time!

I knew that methylation (detox) and gut healing were the way, its cool to see you are having results with them! I think most of us can get results with those. 40 days to go to this doc...:thumbsup:

Oh, Beyond, I know this tendency well...reluctant to return to a forum, regardless of whether I expected + or - responses in return. It's a mark of how well I'm feeling that I haven't been leaving days of emails un-opened, for many months now. I recently listened to a program about anxiety, and how much help cognitive behavioral therapy is. So the radio program became another provocation to anger! And yet in my case, as I knew most of the time it was happening, my anxiety was driven by my physiology, not by a worrying personality. And I was absolutely unable to engage w/ the Gupta Amygdala Training I purchased, as it only increased my agitation, until I changed my diet and had less brain inflammation. Focusing on your spiritual study/practice is surely a boon for you. cheers, ahmo
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi sam,

I had to laugh when I read your comment below. I feel the same way.

But this makes it difficult to properly get feedback from a community consensus. It is like these people are leprechauns and I am the fool looking for the pot of gold at the end of the rainbow.

This thread may help you. If not you may want to try messaging catseye and ask her to answer your questions. I've known her for a few years and she'll probably know all the protocals you listed.

http://forums.phoenixrising.me/inde...doing-chelation-and-having-a-hard-time.13022/

As for me, I've taken a more laid back approach when it comes to taking supplements or following protocals. Mostly because I can't handle taking many supplements. And because I responded so well to just making dietary changes.

Quick background ... I was dx with CFS/ME/FM back in 1992 but found out in 2005 that I'm a celiac with leaky gut (resulting in multiple food intolerances) who has multiple problems from undiagnosed gluten intolerance and celiac disease. Hashimoto's, white lesions on my brain and gluten ataxia for sure but I have glucose and digestive problems that never responded to diet, even a strict Paleo diet and multiple digestive enzymes.

FWIW, I have a thread on neuroglycopenia (low brain glucose probably due to hyperinsulinemia) now that shows where I'm successfully using DEX4 glucose tablets to enhance my cognitive abilities. :) KOW ... Don't want to jinx it.

One of my labs showed excess mercury but I've never treated it other than with cilantro. Most of my improvements happened in the first 2 years of trying to heal myself and come from avoiding food and chemical intolerances. I've also learned which supplements I need for sleep, liver function, etc.

Mast cell meds are helping me with my food intolerance and allergy symtoms nowadays but I need 20 - 30 mg of zyrtec daily. We have a section on mast cells that may interest you.

FWIW, I also see an integrative doctor who's run an enormous amount of labs for me that my traditional doctors never ran. My labs showed that I was low on pregnenolone, B12, DHEA, E, D, chromium, etc etc. My CDSAs have shown that I over produce gluten antibodies, low on elastace, etc. I've treated these over the years but I'm still disabled with orthostatic intolerance (OI) and post exertional malaise (PEM). I believe my PEM is due to my OI based on what Dr Peckerman says about hypoperfusion and OI. If you're interested, googling peckerman hypoperfusion will get that article for you.

Bottom line, IMHO, most of us are still looking for the pot of gold despite years of experimenting with various protocals. Without going into a lot of detail, I'm resigned to the idea the I have damage that probably will never heal. I'm relatively comfortable now that I understand the origin of my "ME/CFS" symptoms and which treatments work for me. My OI is what's keeping me disabled tho.

IMHO, finding the root cause of my OI is something only a specialist with info on mast cells, brain damage (ataxia, myoclonus and white lesions were apparent early on), glucose problems (identified by neuroglyocopenia now) and small fiber neuropathies could identify and I'm not sure that person exists. All four problems I've listed have been linked to OI via a variety of studies but I've yet to see anyone pull this together.

I hope this wasn't too long winded. If I read your post correctly, you said that you're a celiac too so I thought my experience may help you ... tc ... x
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Glad that your experience have been the same Ahmo! That confirms I am not making this up to excuse my "loser" behaviour lol

Oh yeah I am over-reactive, easily offended to ridiculous extents, and paranoid..."vulnerable" as you put it, yes! I will say the truth, I avoided checking this forum for weeks because I was afraid someone could say something unpleasant because of my rant, there you have a good dosage of both paranoia and vulnerability/social phobia. I have 94 comments which are probably insults unchecked in my old youtube account because when I get offended or angry my cholinergic urticaria (autoimmune in origin) flares up and my heart starts beating... since being a child people know its easy to offend me and for minutes or hours it will be seen in my facial features that the emotions arent "digested" yet.

Thanks for the heads up! Best wishes to you as well, ahmo. I wrote that while in a "down" phase, I get all dramatic. My current life isnt much better, but the attitude shiftts. Maybe its the Hashimotto´s. Going deeper into spiritual truths its helping a lot with coping with my life. Great to know about glandulars and supps helping, indeed I have been interested in HPTA glandulars for a long time!

I knew that methylation (detox) and gut healing were the way, its cool to see you are having results with them! I think most of us can get results with those. 40 days to go to this doc...:thumbsup:

Beyond, here's another clue to the PTSD phenomenon. A specific genetic defect, which I have, contributes to chronic pain. "In other words, our results suggest that in some individuals something goes wrong with the body's 'fight or flight' response or the body's recovery from this response, and persistent pain results." "In addition, because we don't understand what causes these outcomes, individuals with chronic pain after traumatic events are often viewed with suspicion, as if they are making up their symptoms for financial gain or having a psychological reaction..."

To me it seems very likely that PTSD type reactions, over-reactions, can also be linked to this HPA response. ahmp

http://www.brainmysteries.com/resea...l_events_may_have_a_neurobiological_basis.asp
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I remember you from curezone. You sound a lot like me, maybe aspie, with an overactive rational mind, have the skills, the vocabulary, the ncbi´s, the study background and yet you dug a deeper hole for yourself when you tried to put together a protocol. I can talk about one of these protocols and shed some light. I have done Nutritional Balancing for around three months. The hair test analysis was fascinatingly accurate about my sympathetic dominance and quite bad hypothyroidism (from autoimmune). It was a fail in terms of results, even while I was feeling better, and I dont see the science behind it. I know of people doing it for years without real gains. Its normal to feel better with so much supplements and some pork thyroid gland if you are hypothyroid and defficient in almost everything like moi.

Yeah I have seen some of those studies. In my opinion mental health its like a ghost, psychology its a failure because the mental comes from the physical to a greater extent than they pretend, in reality the mind its the result of the interaction of the soul matrix and the body/computer plus the experiences that this entity gathers and how it assimilates them (traumas). If your hardware its defective to begin (genetics) OR/AND it is damaged later on (neurotoxins) you get defective reactions, like delayed or exaggerated. You feel depressed, and objectively enjoy life less than others because of defective dopamine or what not, so you do drugs. These things also influence each other or are accumulatuve as people genetically defective in serotonin have been shown to get a greater percentage of PTSD.

About what ahmo said.My diet its paleo and I juice a liter per day of various vegetables. Its obviously not enough and a weak bandaid because I am getting worse, especially in the mental department which its a consequence of things like getting intestinal inflammation or chronic insomnia. Getting more agressive and hysterical when these episodes occur, my patience for being sick and pained was outnumbered long ago. Everyone its different, I am a whiny-boy to the bones lol My family suffers this and its becoming a problem. I get suicidal as well, for example if I get a very strong headache that doesnt let me sleep I will keep saying that I want to die out loud and when my parents wake up from the noise I ask my mother advice about how I could end my life etc. Tired of suffering, simply... I also blame them to some extent for never looking into alternative health for my aspergers back in the day, and making me lose sooo much time in mainstream doctors, homeopaths and even exorcists nowadays...

Fixing the gut to stop that source of autoimmunity and then methylation/detox metals makes sense.
I am seeing a doc here in Spain that does Cutler and Yasko (this spanish doc its a famous specialist in autism) in less than two months and we will see. I do not have the focus/abilities/knowledge to do this in my own and hope she can put together a protocol for me. Also does Low Dose Naltronexone. Hope I can come back and give some good reports about these treatments in some months.

PD: My avatar photo its how I looked three years ago. Now I am that person haggard with mild hypothyroid features http://www.jcrows.com/hypothyroidism.html but the uglyness varies depending of the day heh heh.

Hi Beyond,

I juice a liter per day of various vegetables

THAT may be a reason for getting worse, if you have paradoxical folate deficiency with vegetable folates. Many of the symptoms you mentioned fit.


Typically several of these symptoms will appear suddenly with more appearing and worsening over time if corrections are not made. While these groups of symptoms are called “detox” by some alternative practitioners and many people otherwise knowledgeable about vitamins and supplements, depending upon what theories they are operating under, use this term. Typically they are working on a “toxin” theory of CFS/FMS/ME/MCS etc and that these vitamins and supplements mobilize the toxins which then cause all sorts of symptoms in the groups listed. As the “translations” are made it is clear that actual “detox” if it exists, has nothing to do with these symptoms and they can be dangerous to ignore. If it is “detox” in an actual sense, then it is in what is left after these other things are accounted for and/or corrected, perhaps 5-10% of the total initial number. Also, co-morbidities often show up in this way..

Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with cyanocobalamin it is very common with methylb12 and adensosylb12 and less so with hydroxycobalamin..

IBS – Steady constipation , Nausea, Vomiting, Paralyzed Ileum, Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness, Abnormal heart rhythms (dysrhythmias), Increased pulse rate, Increased blood pressure, Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.

Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation

Group 2b – Either or both

Headache, Increased malaise, Fatigue

Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.



Group 4 - Hydroxycbl onset, degraded methylcbl onset, methylcbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.



Group 3 symptoms, induced paradoxical folate deficiency or insufficiency are corrected quickly with titrated doses of Metafolin, methylb12 and adenosylb12. If glutathione (precursors) are the cause then larger doses of Metafolin, 7.5-15mg,or maybe more are needed. Different tissues are affected at different levels of methylfolate, it comes or goes in stages. Very strong dose proportionate characteristics are present. Serum folate levels may be high or even very high despite Metafolin responsive deficiency/insufficiency symptoms.

Group 1 symptoms respond readily to potassium. The symptoms and response to potassium may occur at a serum level of 4.3 or less.
 
Messages
16
i can related to what you are saying, seems like since i started six months ago i have gotten these strange headaches. i've gone to a few people for advice and every time i've changed things, seems to get worse. i almost think i was better off before i started (though i was very low in b12, b6, glutathione, thyroid, and low in b's). still getting strange headaches. i hope i can see it through to the other side. not sure GAPS will work for me since fermentation is high histamine.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hi Beyond,

I juice a liter per day of various vegetables

THAT may be a reason for getting worse, if you have paradoxical folate deficiency with vegetable folates. Many of the symptoms you mentioned fit.

It may also be the levels of various compounds or natural chemicals in the plants, like oxalates or salicylates (both can cause huge anxiety issues, and pain and fatigue as well), or solanine, found in the nightshade vegetables...

Many different possible explanations.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
It may also be the levels of various compounds or natural chemicals in the plants, like oxalates or salicylates (both can cause huge anxiety issues, and pain and fatigue as well), or solanine, found in the nightshade vegetables...

Many different possible explanations.

Hi Dan,

Can you list the various symptoms patterns for each of those possibilities? The messiest situations are where a person has several of these things overlapping, very complex and difficult to spot. The only trial that takes care of ALL of those possibilities is to stop doing the juicing for a while and then be vary careful what and how much of things are added in.

I'm starting to play with fire again. I have had fresh veggies from my garden every day for a week now. Somewhere I hit "too much" on the veggies and have to back off. Solanine is found mostly in the leaves of tomatoes, eggplants and potatoes or when potatoes have "greened", is bitter and rarely intentionally eaten unlike oxalates and salicylates that are found in the actual edible parts of the plants. It would be good to find put maximum detail on distinguishing and shared symptoms.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hi Fred,

I believe that with solanine (and nightshades in general), the main symptom for some people can be pain, both in muscles and joints and bones.

Salicylates can include pain, but to my understanding, more of the mental symptoms like anxiety, OCD, restlessness and also withdrawal (i.e. social anxiety).

And oxalates, while they're most associated with kidney stones, they can mess up gut function, and become deposited in any weakened area of the body, including muscles, bones, joints, blood vessels, lungs, and even the brain (according to the Great Plains Lab site, which has references.)

Here's more on oxalates and the gut...

http://www.lowoxalate.info/papers/mechanisms.html

Also, from the same site:

"Research shows that it tangles with cellular issues like altering the cell membrane by lipid peroxidation and oxidizing and interfering with the trafficking of glutathione. In the mitochondrion it impairs many enzymes that furnish the energy for cell life. "
http://lowoxalate.info
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
My 2 cents .. I'm sensitive to oxalates but after 6 years of carefully monitoring my oxalate intake, I've only noticed a direct correlation in kidney stones and pelvic pain. Both of my reactions are well researched and documented in medical literature.

I'm not sure if oxalates are a problem in other parts of my body but I haven't experienced it in the
last 6 years.

Imho, The great plains info may be over stated since they're the only ones I know of
who are running the oxalate tests. And then again maybe it's not.

Tc ... X
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
I have "chronic" pelvic pain... Have researched the oxalate issue in the frantic days of peaking pain. Im not sure. My pain seems to be mucle related, but oxalates and pelvic myopneuropathy associated with hypothyroid could be part of the equation. I have succesfully lowered it a lot with physiotherapy and a positive mindset.

Fredd, I am not sure about that, however it wouldnt surprise me. When you are this screwed most of measures tend to make you worse. However, veggie juicing its the only thing that makes me feel better, it obviously makes me have a clearer mind and more energy. Are you saying that I shouldnt juice vegetables with high folate like romaine lettuce? In case of having methylation blocks this dietary folate becomes a problem right?

Serum folate levels may be high or even very high despite Metafolin responsive deficiency/insufficiency symptoms.

I took the supplement MethylGuard for some weeks and in tests had very high folate and b12 as a result. Contains a blend of methylation nutrients including methylfolate and methylcobalamin. I was feeling more social, energetic and humorous (I am a joker type of person when I feel good but my illness atrophies that) until I had to stop the supplement because it made me have very worrying mental and physical symptoms. What do you think this mean Fredd? I think it proves the profound impact of methylation on mental health. It was severe agitation, intense physical and psychological malaise and agression thoughts and impulses towards people. I even decided to ask my parents for interning me in a sanitarium once I reached home (these symptoms appeared abruptly while in the streets).

Personally getting worse in my opinion accounts for the degenerative effects of chronic inflammation, autoimmunity and severe sleep problems because of low cortisol and thyroid, but maybe juicing isnt that helpful for me.

I will look into salicylates. I dont juice that much now though, some of its pineapple, papaya and ginger now.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have "chronic" pelvic pain... Have researched the oxalate issue in the frantic days of peaking pain. Im not sure. My pain seems to be mucle related, but oxalates and pelvic myopneuropathy associated with hypothyroid could be part of the equation. I have succesfully lowered it a lot with physiotherapy and a positive mindset.

Fredd, I am not sure about that, however it wouldnt surprise me. When you are this screwed most of measures tend to make you worse. However, veggie juicing its the only thing that makes me feel better, it obviously makes me have a clearer mind and more energy. Are you saying that I shouldnt juice vegetables with high folate like romaine lettuce? In case of having methylation blocks this dietary folate becomes a problem right?



I took the supplement MethylGuard for some weeks and in tests had very high folate and b12 as a result. Contains a blend of methylation nutrients including methylfolate and methylcobalamin. I was feeling more social, energetic and humorous (I am a joker type of person when I feel good but my illness atrophies that) until I had to stop the supplement because it made me have very worrying mental and physical symptoms. What do you think this mean Fredd? I think it proves the profound impact of methylation on mental health. It was severe agitation, intense physical and psychological malaise and agression thoughts and impulses towards people. I even decided to ask my parents for interning me in a sanitarium once I reached home (these symptoms appeared abruptly while in the streets).

Personally getting worse in my opinion accounts for the degenerative effects of chronic inflammation, autoimmunity and severe sleep problems because of low cortisol and thyroid, but maybe juicing isnt that helpful for me.

I will look into salicylates. I dont juice that much now though, some of its pineapple, papaya and ginger now.

HI Beyond,

I looked up "pelvic myopneuropathy ". Basically all of the neuromuscular symptoms could be 100% caused by these deficiencies.


It was severe agitation, intense physical and psychological malaise and agression thoughts and impulses towards people.

That is part of a specific set of patterns that are part of a specific set of deficiencies. As the lack of these nutrients cause demyelination in various areas of the brain, exactly where the demyelination occurs determines the patterns exact characteristics.


Personally getting worse in my opinion accounts for the degenerative effects of chronic inflammation, autoimmunity and severe sleep problems

One of the end point diseases these deficiencies cause is called Sub Acute combined degeneration. And also ALS, MS, Parkinson's and all sorts of bad news. These are all diseases of neurological degeneration in different areas. As there are several sleep disorders caused by each of MeCbl, AdoCbl, LCF and L-Methylfolate. Autoimmunity appears linked to these deficiencies, chronic inflammation is caused by these deficiencies. They also caused a multitude of mood and personality disorders from mild to total, such as a psychosis that was formerly known as "megaloblastic madness, the most florid psychosis known to man".

When the nerves are damaged and start turning on with the nutrients they appear to be very irritable and react generally very specifically to these nutrients. Now as a number of months pass some who have been able to tolerate the neuropsyc symptoms have had those kinds of emotions fade away to normal. I felt reasonably euphoric for about 9 months before it faded away as I healed. Through experience I have found that each cycle of neurological healing appears to take about 9 months and that after one set of nerves heal another set is lined up to do so. One doc has stated that it takes 5 years without fallback to accomplish "permanent" neurological healing.

I have had some apparently "permanent" neurological healing which has never returned unless reinduced from long term low grade MeCbl all over again. Only 20 of about 200 symptoms have returned and it's always the same ones that clearly never completed healing.

I won't kid you. If you have the deficiencies I think you do, if the damage can be healed, it will be slow and difficult and likely very unpleasant. And nobody knows how far it can heal, insufficient data for that.

If you have any problem caused by vegetable folates, you would have had this all your life so most of your symptoms would have started in earlier forms and progressed to the current symptoms. The best way to know is a trial of methylfolate with MeCbl, AdoCbl and other cofactors, eliminating folic acid, folinic acid and reducing food folate for a trial period. Once it is established that you have a veggie folate problem then it is a matter of finding a balance between amount of veggies eaten and amount of L-methylfolate required.

\
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
A combo of doctor's best chelated magnesium twice a day and solgar 250 mg b6 once a day helped my
pelvic pain but only enough so that I could eat about 3 nuts per day. Definitely not worth
risking getting another kidney stone. The b6 and magnesium connection has been known in the pelvic pain group
for many years. I found it on the web in 2009. Most of this info was researched in the vulvodynia arena when I saw it.

Fwiw I juiced for 4 months straight only to develop esophagus pain from chard, beets, carrots and ginger.
All those are high ox so I don't know if it was the oxalates, rough fiber from these or I simply became allergic
and my reaction was confined to my esophagus. It took several months to get this healed.

I was using a cheap juicer and was getting a lot of fiber compared to the more expensive juicers. Straining the fiber out didn't help once the reaction was there tho.

Recently discovered that the xxx vitamin water helps my energy level. I'm trying the revive vit water now because it has potassium. I suspect due to poor digestion I
Get better results from liquids and sublinguals.

Tc ... X