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Can detox Herx cause permanent damage to brain etc?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Chris.S, Jun 21, 2012.

  1. Chris.S

    Chris.S

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    Hi all. As some of you know I've had the worst time of my life in all my 12 years of CFS/ME, due to a huge worsening of my condition in late November last year. 2 months in hospital with no answers. Everything just dropped to a new level of extremely low all of a sudden, and no one could work out why.

    My detox system seemed to just finally completely bottom out, unable to detoxify ANYTHING. And as for years, I haven't been able to tolerate detox supps such as glutathione, NAC, etc. If I take them, I feel incredibly ill, so bad I can barely move, vision is dim, cant move from bed, can barely even pick up small usually light items, they feel like bricks.

    Of course this is that I've been low in glutahtione for so long that even tiny doses stir up and throw toxins into the blood stream, making things terribly worse. However, I generally, 1-2 days later get a better day than usual. But the horrendous herx from the initial dose feels so bad that it feels like it could be doing some sort of permanent worsening of the body & especially brain. Not sure though as the good day is noticably better than a 'standard day'.

    What it tells me is that I need desparately beyond belief to somehow detoxify. Yet all detox therapies seem to have this worsening effect now due to being so bad. Even clay foot baths etc do the same. And certain therapies, will give me the severe worsening, but then followed by a week of awful, and no lift afterwards, no beneficial 'good day'. Insanely frustrating doesn't begin to describe it!

    I had to move back with my parents because I couldnt look after myself anymore. Leaving my partner behind whos just waiting for me to get well up here. However i've only gotten worse in 6 months, and am desparately contacting dr's that know about detox etc all over the world, spending all my money and more.

    I just keep thinking I'll have to just tolerate the side effects and start using glutathione or NAC again, even though it makes me so bad, because not sure what else to do as just going down hill either way.

    I do have mercury fillings and this is a big issue. Zeolite makes me severely worse the next day (from pulling metals), and Lipoic acid gives severe brain tingling (strong indicator of moving merc in the brain). Hence cant do these treatments either. Massive catch 22, now so weak can't leave the house and no chance of getting to a holistic dentist to get the fillings out to start the low dose chelation.

    I feel stuck in hell to be honest, and fear for my life every day. Can barley sleep even though extremely exhausted, beacuse I keep getting woken up my systemic nerve & brain buzzing/vibration. Just feels my whole body is flowing with 'dirty blood' / toxins. And the small lift I get from a tiny dose of nac, gluta etc is miraculous, after suffering through the horrendous effects of the first day of it.

    LOST! I know its a vicious circle that seems impossible, but any advice or ideas would be most welcome. Making a video soon on all of this.

    Check out my post on my site about detox and my frustrations with it: http://cfsjourney.wordpress.com/detox

    Thanks heaps guys. Hug. ~Chris.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Gee, Chris, that is awful!

    I am so sorry you are going through this.

    I have used a lot of detox strategies but my "gentle ones" are Far Infrared Sauna and epsom salts baths. I have an FIR unit at home and it really helps me a lot.

    Can you tolerate things like this? Or even oral stuff like psyllium to catch toxins and move them out? Or charcoal?

    I see you are in Aust--maybe some of the others there could help you find local resources.

    Best wishes, :hug:

    Sushi
    Chris.S likes this.
  3. richvank

    richvank Senior Member

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    Hi, Chris.

    I read your blog. Very sorry to read what you have been going through. Glad you liked my write-up on glutathione. Please note that that was initially written several years ago, before I understood very much about the link between the partial methylation cycle block and glutathione depletion in ME/CFS. Nowadays I favor working on the methylation cycle partial block, because fixing that allows glutathione to come up automatically, without directly boosting it, and that has been more successful.

    From what you've written, it appears that it might be beneficial for you to work on your gut first, then your liver, then slowly bring up your methylation cycle after you have a clear pathway established for excreting toxins via the liver and the gut.

    I would suggest running a comprehensive stool analysis to see what is going on in your gut. Maybe you have already done this. From what you've written, it looks as though you've tried about everything!

    Best regards,

    Rich
    Chris.S likes this.
  4. adreno

    adreno 3% neanderthal

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    This sounds really terrible; makes me sad to hear it. To answer your question, I suppose extreme herxheimer reactions can cause some damage to nerve cells, but so can the toxins and oxidative stress you're dealing with anyway. I would start low, go slow, and just keep at it. Good luck!
    Chris.S likes this.
  5. sianrecovery

    sianrecovery Senior Member

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    I dont have any answers Chris - just wanted to say I'm really sorry to hear what you are enduring, and that I hope soon it turns around. Well done for keeping looking for answers!

    I hesitate to mention something that has no evidence base, but just in case its useful, I found reading a book by a woman called Donna Eden called Energy Medicine and doing some of her very gentle energy type exercises got me through a bit when I was too ill and too toxic to supplement or every protocol I tried made me worse. It was also something that was pretty cost neutral and I could do for myself. I also wonder if you have thought about seeing someone who specialises in environmentl medicine to see if there is anything else in your surroundings that tweaking may help?
    Big hug xxxx
    Chris.S and Wayne like this.
  6. ukxmrv

    ukxmrv Senior Member

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    Hi Chris, really sorry to hear how you are suffering. It really does add insult to injury when we try new treatments and end up worse after. I've had times when I react badly to simple supplements and other things patients report that help them.

    It may be that you don't need to detox at all and possibly what you are experiencing is not a herx but is due to some other process that we don't know about yet. There is no evidence that people with ME and CFS herx to treatments as there has been no research that shows this. Maybe for some of us we simply cannot tolerate some treatments for reasons unknown and perservering with these will harm us. I can think of many things that I have tried that simply make me worse and worse over time with no benefits at the end.

    Could you maybe put all the possibly harmful things to one side and concentrate on another area? There are so many treatments to try. For example I found that that after a lot of trial and effort that I could tolerate Valtrex, Immunovir and some other things like MAF314. I've got low glutathione as well and not been able to tolerate any of the normal ways to raise it.

    Hopefully others with knowledge of mercury can think of some alternatives (I'm just off to read your blog now).
    wishing well and Chris.S like this.
  7. Chris.S

    Chris.S

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    Thanks all for the replies. Try to write more later am very unwell atm. I have tried fibre and so on, it doesnt do enough detox for me. Chlorella and spirulina dont seem to hurt, no herxing but no major detox again. NAC or glutathione at the TINIEST doses make me terribly sick for a day, then a day or 2 later can feel much better than usual. Awake longer, less toxic, less pain etc. But its more sick for that one beneficial day. However doing nothing, means I just stay the same, or more so, gradually get worse and worse with no 'good days' or good moments even.

    Yeah Rich, methylation is very key. It actually is I feel one of the only things keeping me alive at the moment. By that I mean tiny doses of Sam-e, methyl-b12 and folic. or occasional DMG. I cant tolerate normal doses of sam-e etc, but the tiny doses (like 12.5mg or max 25mg), seem to just keep my body going a bit, whereas it completely seizes up without any methylation supps in one day of going without. I also had a CDSA couple of months ago and it suprisingly didnt show much at all. However check the metagenix triad test info below.

    ukxmrv, yes agree there that may certainly be just a bad reaction/pure intolerance to many substances. I doubt this is the case with NAC or glutathione though. Because if it wasn't a herx at all, then I would never feel eventually better from the treatments, which i very much can. However its not every time, and the bad effect is so horrendous to get that one much better day. But it's that 'better day' that makes me think I *have to* somehow do some sort of detox, because without it I only am getting worse fast. Never tried antivirals, but i am so drug sensitive etc im not sure how id go with any of them. Cant tolerate antibiotics any more either.

    I know I need amalgams out, but Im too weak to get out of the house to get it done - sit in a chair getting work done. wow, i cant even comprehend it, as just getting outside to the car ruins me! And after a few minutes bumpy driving I start to shake and my energy completely fails. Ugh the frustration.

    I just had the metagenix Triad Profile (reads DNA and apparently very accurate), got the results today, which is a huge indicator of many things and it showed:

    not detoxifying ammonia
    large level of oxidation
    very bad fatty acid deficiency
    large yeast overgrowth
    very low metabolic energy production
    low sulphate / sulphation pathway
    very impaired mitochondria
    leucine phenylalnine valine deficient
    very leaky gut

    So I guess one would expect alot of those things in my state. I dont even know how to treat it all though because ive already been taking so many supplements and nothing seems to work well. My alt practitioner (family friend helps by phone) thinks mercury toxicity is causing a great deal of the above dysfunctions. I agree but it brings me to tears that I feel so dreadfully low and it almost impossible to get them removed. I just wish I could get a bit of energy to go and get it done. I need some semblance of stability.

    Thanks again all. ~C.
  8. Vegas

    Vegas Senior Member

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    As someone who has suffered from severe Hg toxicity and has made enormous progress by having 5 amalgam fillings removed and pursuing oral chelation quite diligently, I would urge you to stop taking the NAC, glutathione, and ALA. If these sulfur compounds are the substances causing you the most adverse symptoms, then this represents strong evidence that you do have a very significant Hg burden. You do need to read Andy Cutler's descriptions of how these cause harm. I think his speculation that the low cysteine serves a protective role in someone with severe toxicity is valid. The adverse effects you experienced are in fact causing damage, but this is not to say you cannot reverse the damage. I think your first strategy has to involve ceasing to cause further damage with those forced efforts at detoxing yourself.

    Among those with severe chronic fatigue who can point to mercury toxicity as having a primary causal role, it appears the majority do feel worse for a period of time after having the exposure (amalgam fillings) removed. This appears to relate to the substantial body (vs. brain) burden. What happened to me after the removal was bizarre, but I discovered that my experience was actually pretty common. I felt noticeably better after the first three were removed, and then 2-3 days after the last 2 were removed, it was as if the floodgates were opened. The first year was very challenging, especially the period (roughly months 6-9) when it has been theorized that mineral transport starts to substantially normalize and the blood levels saturate. In this regard, you cannot take the removal lightly; it comes with both immediate and delayed consequences. Nevertheless, if the body burden gets to a point that are only minimally conjugating toxins, I really don't think you are going to make much headway in "detoxing" without having them removed. I have really been stunned by how much "stuff" has come out of my body. I can still precipitate some pretty nasty symptoms by taking too much taurine, glycine, or substances that stimulate specific phase II detox enzymes. I do think you need to get yourself to a position that you can remove the acute exposure.

    I have had a lot of success supplementing to address those parts of the sulfur metabolism (excluding direct supplementation with cysteine, glutathione, methionine) that become so incredibly compromised by mercury. Things like biotin, pantethine (co-A), & thiamine. Encouraging the transsulfuration pathway w/ B12 & methylfolate was very helpful to me; your ability to handle only low doses of MB12/folate may relate to your trouble with cysteine and glutathione or perhaps any of the downstream metabolites that have become deficient while you became progressively ill. Adding B2 as tolerated was quite helpful, but it was not without its adverse consequences. Using selenium (avoid selenite form), zinc, molybdenum, and small amounts of manganese were helpful as well. I'm a huge fan of epsom salts, but I don't know if you can tolerate the sulfate. Here's to hoping you can find a doctor to guide you through this.

    I was very much like you two years ago and would wake up every morning and struggle to get my weak legs under me, hypersensitve to any stressor, my P.E.M had gotten to the point that virtually any activity caused me to be ill. A lot of very hard work has brought me to a point that I started exercising for the first time in three years, last month. I only have occasional brain fog, mild fatigue, I have no more GI issues. I've "lost" many dozens of symptoms, along with chronic sinus & prostate infections, FM, IBS, etc. Mercury is exceptional in its ability to screw up your body; and many things that benefit ME/CFS patient's with minimal Hg toxicity can greatly harm someone with severe toxicity. The only good thing about mercury is you can get rid of it, if that is truly your problem.
    taniaaust1, Chris.S and Wayne like this.
  9. Gestalt

    Gestalt Senior Member

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    They say there is no such thing as a magic bullet, however I would have to disagree.

    When I was at my worst with CFS, I decided to try a large dose of micronized L-glutamine (10-20g a day) and within 24 hours my well-being increased by a dramatic 30%. Prior to then it felt like my body was cannibalizing itself.

    Not sure if it will work for you, but glutamine did wonder repairing my gut, and giving relief to muscles across my body. Plus it boosted my immune system. It repairs the micro-villi in your gut lining, preventing you from absorbing undigested proteins, which lead to your body mounting an immune system response against pretty much everything you consume.

    For people bed ridden, you may want to take up to 20g a day. I know for bowel surgery patients doses in excess of 30g a day have been given.

    Sometimes, when your really sick, it may be best to start with the basics, rather than going after complex detoxification methods.

    When your that weak, consuming regular food becomes an almost impossible task, due the amount of energy required to break it down and digest it. Especially for the energy intensive task of producing stomach acid to breakdown proteins.

    Consider this. Hypothetically a person could live forever without eating carbs. A person could live a fairly long time without eating fat. But a person can only survive without protein for a short period of time. Protein/amino acids are the most basic essential ingredient for life in those terms.

    I think that's why consuming base aminoacids such as glutmaine maybe some BCAA's is a good place to start for trying to nail down essentials. If I were you some PeptoPro might help as well. It's a pre-digested protein with a high number of di and tri peptides. It tastes ghastly but its a way of getting aminoacids into your body with virtually no taxing on your digestive/stomach system. Your intestine by the way, has more di and tri peptide transporters than single amino acid transporters.

    The bottom line is, your body has no hope in effective and proper detoxing if it's fighting to try and stay alive. Basics first, imho, then once you have the energy to walk, and move around, then start looking at detoxing.
  10. Gestalt

    Gestalt Senior Member

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    Reading through your blog, your gut and allergy symptoms are very reminiscent of my own.

    Leaky gut and irritable bowel are particularly nasty situations. Let me breifly describe how I think this works.

    When the gut/ intestinal lining develops holes undigested food particles/molecules, particularly proteins leak into your body/bloodstream. These could be from 'normal' food however in a undigested/not-completely broken down form, your body thinks they are foreign invaders and attacks these molecules mounting an immune system response against them. Also bacteria will leak in as well. Had these food molecules/proteins originally been broken down properly your body wouldn't be attacking them.

    But now, your body is mounting a full fledged assault, exacerbating the 'allergy/intolerance' problem. Slowly it seems like you become allergic to everything you eat, and technically you are. What this does is it severely taxes your bodies detox components namely glutathione and your white blood cells/killer T cells. Now the production of glutathione as well as white blood cells is DEPENDENT on you having a whole range of amino acids that support the methylation cycle and all it's subsidiary cycles. Remember glutathione and white blood cells are made up of amino acids from protein. If you don't have adequate methionine, cystine, glycine, etc. your body won't be able to make glutathione and white blood cells. This is basic math!

    So back to the leaky gut/holes in your intestine. We now have a serious negative feedback loop. Any protein/amino acids you are digesting properly are being used to make the stuff to mount an imuune response against the other protein/food particles leaking into your blood that weren't digested properly. Your glutathione/white blood cells will be used up so fast, you won't have enough to produce the stomach acid needed to break down the food particles in the first place. Now things just got from bad to worse. And there in lies the negative feedback loop.

    You can forget about detoxing, mercury, ammonia, etc. your body is busy detoxing every meal you eat.

    This is why large quantities of glutamine are so very helpful for leaky gut. They rebuild the "screen/filter" in your small intestine, that prevents the undigested protein molecules from leaking into your blood. So now your preventing your body from trying to detox all the food you eat. Which takes a humongous load off your immune system.

    Now your body is still in a depleted state, so supporting glutamine with digestive enzymes can be very beneficial as well. The goal is to provide support breakdown of food so your body dosent have to expend precious resources to do it. Once your body's basic system are back online, and your tissues more or less healed, you can begin to worry about detox of chemicals.

    Consuming easily digestible proteins such as PeptoPro, a Whey protein isolate with protein enzymes can be very beneficial. Eating red meat, or veggie fiber-dense proteins is NOT effective, it requires too much work from an already taxed body.

    What I did was start on large doses of glutamine (20g a day), then slowly ramped up protein intake to 60g with lots of digestive enzyme support over a few months. Once my health was at 50% I decreased glutamine to maybe 5g a day, and stopped the digestive enzymes and then started detoxing heavy metals, etc. It's important to not put the cart before the horse here.

    Most people are obsessed with this mineral, or that vitamin, or that co-factor, but let's not lose sight of the greater picture here. Amino acids from protein in your diet are required for almost every process in the body and all your tissues, fibers, muscles, organs are composed of them. As well as your neurotransmitters, hormones and your detox "components"!
    Sidereal and merylg like this.
  11. jeffrez

    jeffrez Senior Member

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    Think some chinese herbs might suit you. Try schisandra, can help regen liver, restore cytochrome functioning, reverse steatosis, and it's also a pretty good adaptogen. Pubmed search results for "schisandra + liver":

    http://www.ncbi.nlm.nih.gov/pubmed?term=schisandra liver


    Leaky gut info is right on target, also. That's just driving allergy & worsening adrenal weakness. Very imp. to get that under control.

    Sorry to say so, but imho you are likely also going to have to find a way to get those mercury amalgams out if you want hope of lasting improvement. Those are mega toxic and could be driving a lot of your symptoms. Might not be possible now, but it def. should be at the top of your list of things to shoot for.
  12. Mimi

    Mimi Senior Member

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    Hi Chris,

    Do you think there's a chance you are reacting to sugars? I haven't read you blog yet - but I just wanted to let you know that I was able to stop my severe IBS as soon as I eliminated fermentable sugars (FODMAPs) from my diet. The original study that was done in Australia found that 75% of people with IBS found significant, and often profound relief.

    There's a lot of free info on FODMAPs on the internet, but the information is often conflicting and outdated. So if you have US$9.95, I recommend the following e-book. You can download it to a smartphone with a Kindle app and read it in bed:
    http://www.amazon.com/IBS-Free-Second-Edition-Elimination-ebook/dp/B007R7SPYM/ref=sr_1_2?ie=UTF8&qid=1340508515&sr=8-2&keywords=patsy catso

    Okay, now I'm going to go read your blog - you mentioned carbs are a problem - perhaps you already know about this.

    Hi Chris - I read your blog - and I'm so sorry you are going through that. Hang in there!

    Regarding mercury removal, if you have to do it, I recommend having it done by an expert who is familiar with high level mercury removal protocols. Otherwise, you'll get toxified, and you obviously have no margin for error.

    I had mine done by an expert who used a high speed vacuum, face masks for everyone in the room, rubber dam on me as well as oxygen. We did one quadrant at a time and he used a low speed drill. Plus, he gave me activated charcoal beforehand. I suffered no adverse effects except for the time I did a vitamin C IV afterwards (with a different doctor).
    Chris.S likes this.
  13. Mimi

    Mimi Senior Member

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    Hi Chris - if you decide to try glutathione again, here's a place where you get a nasal spray for a very controlled dose. Thanks, RichVank for mentioning this in your video!

    Key Compounding Pharmacy

    530 South 336th Street | Federal Way, WA 98003 | P: 800.878.1322 | F: 888.878.1118 |www.keycompounding.com

    and here's a direct line to the pharmacist who helped me and emailed me an order form:

    Marc Kosaka, PharmD
    Pharmacist
    206-878-3900
    Ext. 111
    Chris.S likes this.
  14. Mimi

    Mimi Senior Member

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    Hi Chris - can you tolerate Essiac tea? It's become a standby of mine. Ingredients are burdock root, sheep sorrel, slippery elm and a touch of turkey rhubarb. I get mine from Starwest Botannicals for just $23.08/lb. 2 ounces makes half a gallon of tea. I drink 1 cup up to 3X day when I'm feeling toxic. Herbs are for blood purification, elimination and anti-cancer. I believe burdock root and slippery elm also detoxify the liver.

    http://www.starwest-botanicals.com/product/1-essiac-tea-trinity-blend.html
    Chris.S likes this.
  15. Chris.S

    Chris.S

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    Thanks guys.

    Vegas: Very interesting post indeed. Glad you are getting better from mercury!

    Where you say "The adverse effects you experienced are in fact causing damage, but this is not to say you cannot reverse the damage. I think your first strategy has to involve ceasing to cause further damage with those forced efforts at detoxing yourself"

    I guess I agree in one way. However after that awful horrid day of dreadful side effects, it is the ONLY time I feel *any* improvement in my condition whatsoever. Without doing any of it, no cysteine, NAC etc at all, I just stay the same, rather going down hill with zero signs of improvement. Its quite amazing to feel that one day or period of a day where there is a window where my brain doesnt feel so full of toxic waste, muslces are not so sore/toxic, and I can keep my ever shutting eyes open for longer at a time. Its strange to feel something is so wrong but SO needed and right at the same time.

    I really want to do the Cutler protocol, it's what I've been looking at. If I can possibly get the fillings out that is.

    Thats the other thing I would not look forward to.. a temporary worsening after getting them out. I cannot even imagine being worse than I am now. I literally wake up nearly every night after 1-2 hours of being asleep sometimes almost paralyzed, tingling pins & needles through the whole body with extreme systemic weakness. Its very scary. I dont know if thats from mercury, systemic biotoxins from candida or other bugs, viruses etc, or what it is. No idea at this point. But I know I'm getting worse is all, and a worsening of that degree would not fare well I'm sure. However there seem no other options. At this rate I could end up in hospital soon going into a coma as I feel the toxins are just flooding me.

    I meant in my top post I can only tolerate tiny doses of sam-e and DMG, however any dose of b12 seems fine but doesnt help alone, and normal doses of folate are ok as well, but again neither help without sam-e or dmg. As for minerals, i tried the LEF brand of selenium complex but didnt realise it had selenoglutathione in it, and even with that small dose I felt some worsening effects. I take molybdenum and zinc, also colloidal minerals. None seem to help much that I can notice. B complex helps but also flares some minor strange symptoms. Havent tried B2 alone but recent test showed low in it. What were the 'consequences' and help of B2?

    Im glad you've gotten through it, sounds great the progress you've made. One difference between me and many is that my adrenals crashed and Ive had lots of cortisone in the last few years. This has been really hard on my weak body I think, and now every dose, every bit I take in makes me feel more toxic. however completely dependant and no chance of getting off it. I very much wish I could have done all the mercury detox when I had a few really good years there between 2004 and 2007. Was able to drive, fly, train, walk short distances etc by myself. I didnt really know how much Hg mattered back then. In 2008 i got worse & worse with toxicity and low adrenal symptoms till the adrenals crashed end 2008, and that was it. I was completely housebound as soon as I had to go on cortisone. It really was one of the worst things of my life. i believe its possible with mercury removal early my adrenals may not have crashed. Also no one seems to be able to tell me if cortisone damage can be reversed or not, NO one has had an answer! I'd assume it could if one could get off the stuff. I've lowered the dose and that will have to be enough, but not sure how to reverse the internal damage to my gut etc (though i've been trying).
  16. Chris.S

    Chris.S

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    Gestalt: I have been on glutamine about 10-15g a day for about a year or more. Has not repaired or helped my gut. Possibly from the cortisone damage of taking tablets etc with a weak system. But yes even taking 15-20g a day I dont feel any different unfortunately.

    Also as you mention: "The bottom line is, your body has no hope in effective and proper detoxing if it's fighting to try and stay alive. Basics first, imho, then once you have the energy to walk, and move around, then start looking at detoxing".

    Well, I don't know how to get any more basic than I've been doing. I was on a simple organic diet etc, eventually a vegan cleansing diet and still only getting worse. Now I can barely eat FOOD without massive symptoms. Any food. Rice, veg, etc. No chance of eating meat. I live on medical food drinks which are elemental - broken down into amino acids and also alot of maltodextrin, of which that part I dont think is doing any good for bugs, candida etc. My acne has been much worse since these drinks, but they are the only thing helping me with weight which was rapidly dropping on the cleansing diet. I felt better for a very short time but started failling worse without protein, as you mention.

    I now take the drinks, rice veg & beans, soft veg soups, BCAA's, glutamine, hydrolysed collagen protein, and so on. It can't get much more basic, but I'm still getting worse. Hence the need to detox no matter what. It seems I dont have the luxury for some reason of just sitting/laying about eating very healthily and 'getting well' because i am not by any means. Liver hurts too much, always stuck, joints feel like they're falling apart, feels like sand is running through my veins & muscles instead of blood.

    Cannot tolerate any form of dairy protein, no matter how hypoallergenic such as the one you mention. Casein & whey in all forms make me much worse, always have. If you know of any di/tri peptide protein drinks that arent dairy or soy, let me know. I think the collagen I take is kind of like that, i tolerate that well but it isnt complete protein.

    Your leaky gut description is good :) I knew alot about it already but I like the way you put it all, easy to peice together. Thats what I realise about the components etc, and hence why I think i may actually need at least tiny doses of cysteine of some sort to actually make things work a bit. Always get the nasty reaction, followed by a better time (usually but not always). As stated, no way on the whey or casein! Tried so many forms, always makes me worse.

    I agree! Body is definitely detoxing every meal as you say. As the ONLY time i've felt better is if I semi fast - drink only water and nothing else. Because im so weak and blood sugar drops easily, weak adrenals etc, I cant do this for long at all usually. Sometimes can wake up and not eat till about 8pm, but thats about it before I start dropping further and need rice or carbs etc to be even remotely stable. Whatever the food is, i feel worse after it. Instant heavy fatigue and systemic toxic feelings within 5-10 minutes of eating. I wish the glutamine would 'seal it up fast' and help me feel better. I will try going back to 20g a day, but so far it hasnt done alot unfort.

    Also been on digestive enzymes for years without much benefit. Dont feel a great difference on or off them. They are prescription (creon) and quite strong. The only time I noticed a difference was when I *COULD* eat meat like fish or chicken last yr and before, and I took say 15 capsules or more with that protein meal (thats a huge amount seeing as the reccommended is 2-3 caps per meal). THEN I felt my gut wasn't so 'heavy' after a meat type meal, and it went through easier. I just feel so wrecked now inside that I cant even 'feel' my way what to do or what is best for me, its awful. You're really right in the things you're saying though that's for sure. I have rice protein concentrate but even that doesnt agree so much for some reason. Only the hydro/collagen seems good. Most others make my brain feel toxic (ammonia?) Thanks for the posts.
  17. Chris.S

    Chris.S

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    Jeffers: Thanks. Indeed mercury removal needs to be top of my list, I just NEED a bit of energy increase somehow to be able to get it done! Its so frustrating. Can't tolerate schizandra, I've tried in the past and although I feel some benefit, I react to salicylates which are very high in most/nearly all herbs. I have SO MUCH advice on this and that herb (many which ive tried) but they all significantly increase asthma, allergies, muscle pain etc. Those that are Sal intolerant, herbal remedies are really not good for us. I despise the fact, beacuse i know how good those bitters can be for the body/liver etc.

    Mimi: Thanks & yes I likely react to sugars for sure. However the medical drinks keeping me alive are full of maltodextrin, and I lose weight fast & dont get enough protein without them. But yes, likely worsening bug problems and all the other things simple carbs do, ugh! Heard of FODMAP, dont know the food list but will look at it. I am so extremely limited in what I eat already.

    As mentioned above, cant tolerate herbs/herbal teas. With all their wonderful healing benefits I always get an itchy throat, asthma, allergies and worse muscle pain from herbs, its very frustrating indeed. Thx again. ~C.
  18. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Hi Chris,

    Wolverine? Good to see you on this board. Sorry to hear about the extremely difficult times you're going through. You might be interested in a recent story I shared here on this board:

    Interesting Coffee Enema Story - Glutathione Levels Raised ?

    Regarding clay foot baths: What I like about them is the high degree with which I feel I can control the amount of detoxification at any given time, by adjusting the time and/or the amount of clay in the water. I wonder if a very small amount might be enough to give you a boost without completely knocking you out beforehand.

    Also, I sip on my own personal "detox forumula" throughout the day. It contains:

    2 oz. measurement of psyllium husks
    2 oz. chia seeds
    1 tbsp of nutritional yeast
    1 tbsp of bentonite clay
    1 tbsp of lemon juice
    1 tbsp of apple cider vinegar
    1 tbsp of olive oil
    1/2 tsp stevia

    I add this to a bit less than two quarts of water and blend on slow speed. I then pour into a 2 quart container, which usually lasts me 2-3 days.

    What I like about this is that I believe it "sops up" any toxicity that might be initiated by any type of detoxification protocol at any given time. I've learned to notice various reactions in my body which tells me when I've taken too much (a temporary pain in my spinal column is the most common). But it mostly gives me a slight boost right after drinking it if I don't do too much.

    Also, I do "oil pulling" for about 15-20 each day, followed by holding a bentonite solution in my mouth afterward for another 15-20 minutes. I consider both to be very mild detoxification techniques, and usually feel noticeably better afterwards. I do it for detoxification, but it's also very good for my gum and oral health, another critical factor for pwCFS.

    Hope you can find some ways to shift some things for yourself. Wishing you the very best.

    Wayne
    warriorseekspeace, merylg and Chris.S like this.
  19. Mimi

    Mimi Senior Member

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    SF Bay Area
    Hi Chris - I believe maltodextrin is okay on the FODMAP diet but a lot of vegetables are not. It's very weird. Basically, if you don't eat fruit, cabbage family veggies, asparagus, legumes, milk products and gluten you're most of the way there. Some of the weirdest things that are big no-no's are apples, apple cider vinegar and juice, peaches, watermelon, mushrooms and pistachios. So if you are say, eating a FODMAP containing vegetable with your rice, you'll get gas and pain. But eating just rice alone might be okay. Or a little of the FODMAP veggies at a time so you don't go past your gut's absorption rate.

    I stripped my whole diet down to rice and chicken for a while and then gradually added in almond milk (check the label) and so forth. Whenever I got a symptom - like gas or noises - I'd back off. If you have bacterial overgrowth in your small intestine, the feedback can be pretty quick. I tend to break a sweat when I exceed my limit - sometimes right away. So if you listen to your body - and keep it very simple - you can figure this thing out on your own. But educating yourself really helps.
    Chris.S likes this.
  20. Mimi

    Mimi Senior Member

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    SF Bay Area
    P.S. Elsewhere on this site, someone said they healed their gut with N-Acetyl Glucosamine and HCl Glucosamine. There was a link to a study in which they helped kids with severe IBS with 3-6 g or 6-9 g of NAG. You might want to surf it up.
    Chris.S likes this.

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