Doing Glutathione - Strong Reactions!

As many of us know, most ppl with CFS have low glutathione. I've been one of these as proved by my test with ARL (smokies) by functional liver detox profile. Mine was extremely low, almost non existent compared to normal! That was also during the 2nd year of my CFS, which is now in the 10th year.

I have realised that raising it is something I need to do more than anything else IMO, as my CFS/FM/MCS is VERY much based on poor liver function, and concurrent poor general body detox ability.

Something i've noticed with every method of raising glutathione (except methylation), is a strong detox/herx reaction. This includes NAC, any combination suppliment with NAC or reduced glutathione, and direct glutathione in the forms of injection, oral, transdermal, you name it, the reaction is the same, and ive tried them all. I've currently been nebulising it, and got the Thera glutathione capsules from the US that are made for this purpose.

First day I do a treatment it just increases fatigue somewhat, but actually sometimes gives a slight lift too later on. Then the next day all CFS and fibro symptoms are amplified many times. Increased systemic muscle & joint pain, fatigue, and worst of all, BRAIN symptoms are greatly worsened. Irritability, brain fog, sensitivity to light, noise, inability to think at all. Kind of feels like my head is swimming & toxic.

I was wondering if these symptoms can actually be dangerous if one just keeps trying to 'push through' them if very sensitive/toxic load? Or are they just uncomfortable? Hard to tell as it feels so terrible.

Sometimes then, I wait that day out, and the NEXT day, I can wake up feeling better than usual. This pattern shows beyond doubt that I need to raise gluta. If I do the treatment daily, the symptoms just get worse and worse (yes, even at tiny doses), until I stop for another 48hrs or so, then I get another one of those 'better days', but only one day. Soon as i start treatments again symptoms get much worse.

I've been nebulising every 2nd day, and that kind of helps reduce the severity of symptoms, but am so far worse than usual all the time even doing it this way. Every 3rd day is alot easier to do.

HOWEVER! And here's the question I'm wondering about. If I only do it every 2nd or 3rd day, will it ever get better and allow me to increase to a better dose? At the moment im seriously on such a low dose but it's still producing this reaction - 25 or up to 50mg tipped out of a capsule (1/4 or less of a 200mg capsule). Most things I read people are treated with generally about 600mg a day at least.

I've read so much on how drastically people have been helped by doing glut treatments; i.e. serious lift in fatigue, increased mental sharpness and general improvements all over the place within a very short time of starting. This is frustrating when i get such severe symptoms and feel like it's harming more than helping. I am determined to raise it though so any thoughts or advice would be much appreciated!

Thanks. ~Chris.
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32, Male
5'9, 65kg (143lb)
Adrenal Insufficiency, CFS/MCS/FM
38mg HC, 50mg Testogel
Methylation Protocol
Licorice root, Vit C,
Mag, D3 & other supps.
Melbourne, Australia.
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Hi!

Upon reading your post I noticed that your symptoms are all on the Lyme disease symptom list.

CFS and FM are likely symptoms of a larger infectious picture.

Many of us on this board have later found that we had a chronic Borrelia burgdorferi infection (Lyme) along with common coinfections like Bartonella, Babesia, and Ehrlichia.

In fact, it is very common for people with lyme to first have been diagnosed with CFS or FM or MS, etc.

Please take a look at the symptom checklist on pages 9-11 of this important paper...and pages 22-27 also:


http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf




Good basic info here:


http://www.ilads.org/lyme_disease/about_lyme.html




Also, read through this booklet which also contains a good symptom list:


http://www.lymepa.org/Basics2007v1.2Rev.pdf



It is very important for you to know that Lyme testing is very unreliable. Many people with lyme have only had negative lyme tests. It is a clinical diagnosis, based on history, symptoms and exam.


I also urge you to go to lymenet.org...click on flash discussion....sign up for free.....click on Medical Questions board.........read posts and post your questions.

When I first started the methylation protocol, I detoxed quite badly. It was very hard to take, and had to remain at very low doses every other day for many months. I too wondered if I was making any progress (while feeling crappy most of the time) but about 8 months in I noticed that my crashes were not as severe as they used to be. Progress was very slow, but it was progress - which I hadn't been making prior to starting the methylation protocol.

I think it's interesting that the methylation protocol doesn't make you detox!

Anyways, I think we do have to be careful when detoxing. Our bodies can be overwhelmed with toxins, and I think we should only do what we are comfortable with. I think as long as you stick with it, however slowly, you will make progress. It sounds like every 3rd day might be best for for you right now.

I did a liver detox about 7 years ago with the help of my chiropractor. It made me sick for a month, but I was really glad I stuck it out because my liver was much better afterwards. Other things that have helped my liver are hydrochloric acid (about 1/2 hour before meals), lemon juice in water, milk thistle, dandelion tea. My digestion used to be very poor but is pretty good now. So there may be some things you can do to help your liver, apart from trying to raise glutathione levels.

And aussie's suggestion may be a good one. Some people have been helped by the whey protein.

Best wishes,

Mary

Hi Chris,

I was wondering if you've ever considered doing coffee enemas to help with some of the detoxification stress you describe. Also, I can't help but think that clay foot baths might be helpful as well. I started two different threads on these two topcs that you may want to check out:

1) http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1073318

(Why I do daily coffee enemas -- Some perspectives)

2) http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1104646

(Detoxification Clay / Clay Foot Baths Work Well for Me)

It looks like you're taking 38 mg of hydrocortisone these days. I seem to remember you had very bad reactions to even the minutest amount of HC. Were you able to surmount these reactions and have HC be beneficial for you?

It's good to see your post here. Haven't been in touch for quite a long time with you. Best of luck as you puruse your current protocol.

All the Best, Wayne

You're nebulizing it, Wolverine? Interesting. Have you noticed a difference between oral, transdermal, injection, nebulizing? I tried taking reduced gluatathione orally but I'm not sure if I noticed a detox.

Yeah, go slow like Mary says, detox is GOOD but too much toxins released will stress system.

I'm taking Immunocal, a whey product, and have been detoxing slowly for about a month now. I didn't detox with the other wheys I've tried but I'm thinking of trying one of them again to see if it's the Immunocal or just the whey that's doing it. I'm thinking the detox is because it's helping with glutathione production, hoping it is. I had a genetic test that picked up errors in genes for detoxing so I'm sure I need glutathione.

Hi, Chris.

I see that you are doing the methylation protocol and are adding nebulized glutathione in addition, right?

I've been suggesting this approach lately for those who have been experiencing too much excitotoxicity with the methylation protocol, on the grounds that when the methylation protocol is started, more of the homocysteine is shunted to form methionine, and less goes into the transsfulfuration pathway and forms glutathione. Thus, glutathione drops even more, initially, and I think that may be responsible for the increase in excitotoxicity (anxiety, insomnia, "wired" feeling, hypersensitivity of the senses). So I've suggested that adding glutathione might help with this. You mentioned that sometimes you get an initial "lift" from adding glutathione, and this may be consistent.

However, you report that the next day there is a worsening of your symptoms from adding glutathione. I think that your interpretation is correct that this results from increased mobilization of toxins.

You also report that sometimes the next day you feel better than usual. I think this may mean that your body has been able to excrete the toxins that were mobilized, and now your body burden of toxins is less than it was initially. There is a delay between mobilizing the toxins into the blood and excreting them in stools, urine and sweat.

Based on what others have reported and on what I think is going on in the biochemistry, I do think that over time you will be lowering your toxic body burden, and you will be able to tolerate larger dosages.

I think that the reason adding glutathione to the methylation protocol has this effect is that glutathione is very much involved in the detox system, both in handling oxidative stress generated by the Phase I detox, and in carrying out one of the Phase II detox pathways itself (glutathionation, or conjugation to glutathione). Note that this occurs inside the cells, and is followed by Phase III detox, which involves exporting the conjugated toxins from the cells into the extracellular fluid, and thence to the blood. Some become unbound and are able affect other cells, and I think that's what causes the worsening of symptoms. But then some of the toxins are excreted, and that gives the improvement, I think.

Another thing to note is that adding glutathione to the methylation protocol likely also improves protection of the B12 inside the cells, as it is being converted to methylcobalamin and adenosylcobalamin. This would lower the hijacking of B12 by toxins and boost the activity of methionine synthase as well as the processing of methylmalonic acid in the mitochondria.
The boosting of methionine synthase can be expected to impact the rest of the sulfur metabolism as well. Perhaps glutathione goes up initially, and then drops lower, because methionine synthase is stimulated, thus converting more of the homocysteine to methionine, and supplying less to the transsulfuration pathway and glutathione synthesis.

If the load of toxins is high, such as from having a dysfunctional detox system for a long time while the body continues to be exposed to toxins, as it always is, then I think it could take a longer time to clear the toxins out enough that glutathione can continue to stay up, but it does sound to me as though you are headed in the right direction.

The main bottleneck in this process seems to be moving the toxins from the blood to the urine and stools.

In the case of the urine, it can help to alkalinize the urine by the use of lemon juice, because this will cause toxins that are in the chemical form of weak acids to be ionized in the kidney tubules, and thus to tend to pass into the urine rather than to be reabsorbed into the blood. I realize that it sounds paradoxical that lemon juice, which is acidic, would alkalinize the urine, but it does, because the citrate is metabolized by the citric acid cycle, leaving ions that are base-formers. If you drink lemon juice, it is important to use a drinking straw and to flush the teeth with water afterward, to protect the enamel from citrate, which is a chelator for calcium.

In the case of the stools, one problem is that toxins can be reabsorbed from the gut after they have been carried there in the bile from the liver, and can then be recycled back to the liver and the body. To prevent this recycling in the enterohepatic recirculation, binders can be used that will tie up the toxins and make sure they go to the stools. These include activated charcoal (which can be constipating, so a form of magnesium such as milk of magnesia is sometimes added to form a slurry with the activated charcoal), various kinds of indigestible fiber, and bentonite clay.

Best regards,

Rich
[This Message was Edited on 08/05/2010]
[This Message was Edited on 08/05/2010]
[This Message was Edited on 08/05/2010]

Thanks all for the replies, much apprecited.

Nanie46: Yeah Lyme of course has a very similar symptom list to CFS, and I've considered it. Never been tested. My probs didn't start with infection though, they started with a lifetime of gut problems that led to severe gut probs, extreme weight loss, multiple surgeries and hospital stays over a year. This was extremely stressful for me and is what started the downward spiral of severe CFS etc. I may have Lyme who knows, but it didn't start with it if so. I also wouldn't like to just 'decide' I had lyme disease if I had negative tests personally, because true CFS/ME is a condition of it's own, which is currently what I believe is my prob (due to chronic toxicity).

aussie: I've heard of Immunocal and using whey to increase GSH, however I am very intolerant of whey and most other dairy. Makes me feel nauseous right away, like milk or yoghurt does. Also muscle pain etc, and its definitely not detox, just serious intolerance. I remember doing a lot of weights to try build muscle in my late teens, and using whey. I just thought it was normal to feel sick from it every time, lol. I now use pea protein isolate or other vegie based protein powders, and do not get sick at all from them. I don't think whey would increase GSH anywhere near as dramatically as NAC, or of course direct GSH supplementation. That's probably why you don't feel alot. I dont think anyone would feel the same reactions from whey as from either of the above mentioned, as its a whole food. Just like one doesnt eat chicken and go WHOA! DETOX!! I've heard immunocal can work though over time.

Mary: I did methylation a few years ago, for about 6-8 months, but was only using the intrisi/b12 folate, folapro, and Perque B12 Guard. I never felt much difference from just taking those alone. I probably needed to add the multi.

However, when I used/still use now Sam-e, even at small doses, I notice MASSIVE differences in multiple bodily functions. Everything just seems to work and flow better. Same for DMG. (TMG doesnt agree for some reason, but DMG is excellent). My whole body just feels like it works and flows better on the days I use either DMG or sam-e, along with B-complex (Jarrows B-Right, best B complex ive used).

However as I am sensitive, I cannot take DMG or Sam-e daily, or in high doses, or I get massive headaches. That may be detox but not sure as i don't get ANY other detox symptoms on these, only headaches. I only take max 50mg at a time of sam-e, or 125mg of DMG along with one cap of Jarrow's B-Right (good balance, active B's). These are my 'good days' usually (or nights rather with my backward sleeping pattern!).

I should also mention that taking DMG on the same day as a glutathione treatment lessens the severity of the glutathione induced detox symptoms.

Liver detox is something I've been trying to do since I first got sick in 2000. This is because my entire problems started with liver. Massive liver/gallbladder pain that sent me to hosp a few times. My gallbladder was full of thick sludge and cause severe GB pain regularly. This is what started everything, the hospital stays, weight loss (intolerance to ALL fatty / heavy foods). They took out the gallbladder which i regret, CFS etc became worse after that operation. I find any time I try to do liver detoxes it's pretty overwhelming. I get liver pain, nausea, worse fatigue and systemic pain. Pretty much all symptoms amplify. This makes me stop within days usually and i never get a good long run of liver detox, beacuse I can barely even eat when i'm doing it.

Wayne: Hi yeah long time no talk! I haven't been on here for a while as i've been having a hard time over the last almost 2 years with the adrenal probs. Therefore have been on other adrenal forums mostly trying to work that out. Yes I'm on 35-38mg HC most days, sometimes higher. My body got used to the HC thankfully after a few months of those inital bad reactions yes. And lucky because I simply can't live without it. I've had a few near crisis' and my body 'crashes' soo quickly if i drop low, its horrible to try to balance. Even though it helped certain things and i HAVE to have it to live, i don't think my body processes it very well beacuse im extremely up and down with it every day, it just doesn't 'last' long enough and I dose it about 8 times a day. I hate it to be honest! But i had to have it as my body was going down hill fast without. I've barely left the house though in 1.5 years because it's rather unstable. I feel stable at home and mostly in bed, but soon as im up too long i can begin to head for a low cortisol crash. If i have to leave the house i have to dose up huge, like 20-30mg in the space of like 1-2hours to even feel stable enough to do it. Its extremely frustrating. Are you still on your HC? If so what dose?

The clay baths look great, I will definitely do this! Not sure why I havent tried it before there seems to be alot of info on it around, and looks like its a less harsh detox than other methods. Im not sure the diff between brands but I found an aus clay bath site selling LL magnetic clay. Its $89 for 2.5kg though which seems expensive to me? On ebay there are sellers selling cheap bentonite (they say high grade/pure etc) clay for about half that price.

I'm not sure for me on Coffee enemas. I've never done one, for fear that it may produce a similar reaction to drinking coffee or worse. Since I was 22 when probs began, I have felt terrible from drinking coffee, it only got worse with time. If i drink it, even a few sips now, it makes my brain feel its being pulled in 20 different directions at once, like someone has injected arsenic straight into my head! Nasty.

u&iraok: Yes nebulising. The mist gets into the lungs and directly into the bloodstream from there. Apparently it's only second to injections and raises it better than other methods. Most methods produce a similar type of reaction for me, but thats probably beacuse i'm so extremely low in it that anything does the same. Increased fatigue, systemic pain, irritability, worse brain function etc. All of them do it.

Appartently immunocal does it better than others. I doubt bulk/cheap ordinary whey would do it very well comparing. If you can tolerate NAC it's a good way to raise it, definitely does work.

That's very interesting about your genetic test. Got details on that? I've always wanted genetic testing to see if anything is wrong there, but have never had it. Was that traditional with specialists in hospitals etc? Or an alternative type test?

Rich: Thanks for this! Yes that's right. Although slightly altered methylation as mentioned above. Doing the B12's etc, plus DMG & Sam-e on alernating days & so on. This is the way it works for me, but definitely helps more than any other treatment I try.

The "lift" I occasionally get, is/was usually if I had a larger dose of NAC at once - say 750mg at a time. I dont really get the lift now with the low doses of direct neb-glutathione, as I only use about 50mg at a time. That large dose of NAC wasnt consistent either. If i hadnt had it for a while, say a week or 2, then took a dose, after about 4-5hours and a sleep, i would wake up and have about 4-6 hours of much clearer functioning and energy than usual, almost hyper (for me) in fact. But then the next day was reeeally bad, worse than now. That is always the thing that made me stop it.

ATM i'm feeling awful 2 days out of 3, and the third isn't even as good as usual, but I'm hoping if i just keep going it will eventually improve. The 'feeling far better than usual' after a treatment i've noticed mainly happens if I dont do it for a while, say give it a week's rest, then do one treatment at a higher dose, then get an awful day next day, THEN the day after that i feel alot better. Even now when i'm doing it every 2nd or thrid day I'm not getting that 'great' rare day. It seems I'd need to do it just once weekly, just to get one good day, but im sure that wouldn't help to build up the levels at all.. probably just a quick temporary one day detox then back to normal. Not sure. Hopefully these clay baths etc will help speed it up.

Thanks for the explainations on the biochemistry, that's really interesting, going to save this post for sure

I've noticed the 'chakly teeth' feeling with lemon juice in water, as i do sometimes drink it. Im sposed to kind of keep my salycilate/amine low as im very allergic/intolerant to them, and those diets suggest using citric acid in water instead, which i think works pretty similarly for these reasons to lemon juice. I will def do that. I've also used activated charcoal, but only very sporadicly because I forget. Because I have to take my cortisone 6-8 times a day, I have to have charcoal no where near the doses because I think it could bind and make them not work which would be very bad for me. So its really hard to remember to find a time to take the charcoal. I don't have constipation probs anymore as I fixed that up over the years very well so nothing really gets me stuck anymore. Another sign of toxicity right there actually, when i have a bowel movement my whole body and brain feels instanly lifted and lighter. I also take psyllium husks. Will add clay to these things and see how it goes.

Thanks very much all! ~Chris.

just wanted to say i think this is a great and important thread.!!!!!!!!!!

my personal life is too hectic right now- but when it settles down= i will reread all this and try some of the ideas here.

thanks for posting
best wishes to all and never give up for improvement!

bigmama2

The test was from Integrative Genomics. My naturopath ordered it and went over it with me. It was pretty interesting because it wasn't something he ordered first off, but well into my treatment and it just confirmed things he had already found: errors in detoxification, an error predisposing me to osteoporosis, and a few others which I'll have to look up again, one was something about an error in a process involving hydrogen peroxide.

The test also shows whether you have one or two parent errors--the same genetic error from both parents--two parent errors of course being worse. Mine showed all one parent errors from one parent which also confirmed what I already knew, that my problems came from my father and especially from his mother, my grandmother.

And the test gives some suggestions on things to take. Mine indicated antioxidants and things for osteoporosis, all of which I was already taking.

It was just good to see where there are genetic errors, not a foregone conclusion, but it allows you to be in prevention mode (osteoporosis for me) or if you're already having the problems you see why (detoxification for me). And helps your doctor and you see which nutrients you have a greater need for and why.


As for the Immunocal, I don't know why it alone it causing a detox and why I feel good taking it, maybe because I have already come a long way in fixing all my problems, getting my body healthier so that it was set up to be able to use the Immunocal efficiently and optimally.
[This Message was Edited on 08/06/2010]

Hello Stranger!

I was just thinking about you the other day and wondering how you were doing. Sorry you haven't found the "magic cure all"...I haven't either. I must applaud you for your dedication and relentless trials of treatments. I find myself just giving up all too often.

The fatigue and weakness are still my constant companions...no fun at all. I'm glad you came back and shared your experiences, hope something clicks and helps you feel better.

Take Care...Hermit

Also Wayne, after reading a few more things on detox, I decided to get the FIR tent out again. I bought it just when i got adrenal insufficiency, but was having such a hard time back then that I couldnt really sit up and do it often, as i was very weak at first. Am able to do more again now late at night, so got the tent out again last nite. I think I overdid it though (about 20 mins on a medium heat), beacuse I felt really weird and buzzed, CNS overstimulation, for the next 12hrs or so, even after i slept then woke up again. I s'pose should go slower on that too. Do you do them at the moment?

..for the replys!

u&iraok: Interesting.. will have to ask one of my integrative docs about this sort of thing. Yeah My mother has 'weird things' like frequent candida, random pain here and there, always has something going on that docs can't find any reason for, they all thing she's nuts. We used to have no clue what she was talking about when she talked about all her pains etc when we were young, but now I know she has multiple issues related to allergy, yeast and so on, beacuse i have the same x 100, ek! She has full energy though luckily. Her grandmother had all sorts of gut probs & colitis etc, so I spose it came from that side. Very good that you can tolerate immunocal, I have heard good things about it! So yes Im sure its worth it if one can tolerate. Getting the body working I think is much more important than "avoiding everything". Some people feel much better (including me) on an extremely limited diet of a few very plain foods. However Im not that strict at the moment i dont have the energy to be

Hermit, yes havent been around so much! Good to see same people still around (well would be good if they weren't around because they were busy being well!) but ya know. Indeed, I never stop trying things, I'm determined no matter how bad things may be to somehow pull out of the ditch so to speak. At least to a level of partial functionality! Can't do anything else but keep trying.

Heh yeah same here. At the moment I've been just doing higher doses and trying to tough it out. Even at much less like 1/16th of a capsule I get a similar response. ive not divided it into such tiny doses as you mention! But yes i'm sure that'd help.

With these Thera Glutathione caps, they are buffered with sodium bicarbonate for nebulising (dissolve instantly in water), making it a very light fluffy powder, not the common heavier powder in most caps, so its harder to divide into specific very tiny doses. However I may have to try to do that for a while because im having a very hard time now the way I'm doing it.

It's just also that it will take forever doing it that way also. Specially as that I often (not always) get a lift a day or two after a treatment, which wouldnt happen with tiny doses either. Will try it out though, probably a better way to go seeing as that I'm now adding in the other things like clay baths and FIR saunas.

Rich, hoping you read this again to see this post.

(& anyone else who may know about these things)

I have totally forgotten about this link which may play a major role in why i'm having such a hard time with the glutathione. I sort of forgot, or just haven't focused on the fact that glutathione, its production and precursors etc, are intricately involved in the sulphation pathway. I think even glutathione itself is a very sulphuric substance right? Even though have been reading alot about this topic, I kind of skip over the parts on Sulphation etc.

I should have remembered, that I have a BIG problem with sulphur. I am actually allergic to "sulfa drugs" - I remember being given Bactrim, which is a sulphur based antibiotic years ago, i came out in a tremendous hive like rash ALL OVER my body, and had some asthma as well. Not anaphylaxis, but quite a bad allergy.

Also, I have the worst food intolerances and have for most of my life. Concenctrated tomato and other rich salycilate foods are the worst. Any foods that are high in sulpihtes make me feel worse than anything though. I am badly alcohol intolerant due to my detox probs, have been since the start. However! If I drink say half a mixer drink of vodka, I will get a bad headache and feel sort of sick. BUT, if i drink red wine (or any wine), the effect is 10x worse. I think red wine probably makes me feel worse than any other food or drink I could have. Dried apricots also give me marked asthma and a tight very itchy chest inside. Plain fresh apricots do nothing of the sort.

So this piece of the puzzle clicked last night, and I did as much reading as I could in a short time, and read about the problem with PST enzyme that many sick/allergic people can have. There's alot of info around on it relating to Autism, however it seems alot of CFS people have it as well.

This page: http://www.allnaturaladvantage.com.au/Sulphation_diagram.htm

..absolutely stoked me, for how closely alot of it relates to my condition even since I was a child. Ive always been a severe allergy person - skin prick tests come up with positive reactions to about 18 out of 22 substances, my blood IgE level is often 500-600 (when the normal range is up to 30, and some allergy is present between 30-100). So i basically react to 'everthing'.

That page mentions that people often intolerant to sulphur/poor sulphation, have poor gut integrity and are prone to gut dysfunction, leaky gut & irritable bowel - DING! This has been my entire problem since BIRTH! I've always said I'm pretty certain my CFS etc all sprung from a lifetime of severe constant allergies and gut dysfunction. Makes me wonder if one of my major problems is the sulphur problem?

There's also a bunch of foods mentioned there that inhibit PST. Looks like I might have to go back to avoiding them all again.. goodbye cheese & tomato once more!

Last thing, on searching this is the best post I found on the topic as to "what to to about it" if one has this problem, treatment plan he put together. See post #8 by poster "Leaves". It seems he is on the right track from what I can tell.

http://www.forums.aboutmecfs.org/showthread.php?3804-cfs-and-impaired-sulphur-metabolism

So my question is, if I am having this sulphation problem of not converting sulphur to sulphates, would it be bad to try to keep up with the glutathione? Could it be damaging to nerves and brain if I just 'force it' and try to 'power through' the severe side effects? (brain tingling, increased systemic muscle/join/spine pain, irritability and large increase in general cognitive dysfunction, etc). It says there that hydrogen sulphide is highly neurotoxic. Just don't want to do anything dangerous is all.

I will try to get the test that person mentions to see if I have the problem (genova test for sulphuration etc).

Very much appreciate opinions.

I am no shining example of recovery from ME, but one thing I have I have discovered which is a big plus, is, that removing gluten from my diet is the ONLY positive effect I have experienced in 6 years. That is, no more indigestion, bloating, wind, heartburn or other gut nasties, which previously even woke me from sleep at times. So if most of the immune system is in the gut makes sense to have a happy gut. AND no more heartburn medication.

It's a little bit hard, but we have all had to research many times on behalf of our health, and gluten free is just another. It mainly means cutting out bread, pasta, breakfast cereals, cookies etc. I have found many flours available from gluten free sources and can make my own cookies and pizza pastry - I have decided I can live without bread. Also there are plenty of products available on the supermarket shelves, including breakfast cereals and if we have to cut back on carbs, well it may help with weight loss as well.

I started on S-acetyl-glutathione and am having the exact thing - aching all over - intensification of symptoms. If anyone has experienced this, I'd appreciate hearing from them.

I also had lymes blood tests done for years, and it never showed up, but I had been bitten so many times that I always suspected lymes may have played a part.

The last blood test I got it showed up - my dr. said "past lyme exposure" - but he is a fibro specialist & didn't put me on anything.

Has anyone overcome lymes without treatment? Does anyone know if any "natural" treatments work?

thanks

saint,

Some people have improvement of Lyme symptoms without antibiotics, although many people think that antibiotics are necessary.

There are many alternatives to try such as the Buhner protocol, Cowden protocol, Salt/ Vit C protocol, Essential Oils, etc. I am not endorsing any of them, just mentioning them.

Because chronic Lyme and related coinfections create a cascade of dysfunction all body systems, it helps to address issues like adrenal fatigue (a big one), other hormone dysfunction, low Vit D, leaky gut (this is a big one too), food sensitivities, vitamin and mineral depletions, etc.

If you still eat sugar, gluten, soy, corn and dairy, it can help a lot to eliminate them, especially gluten and sugar....but all of them really.

There is a lot you can do on your own to start your recovery.

There is a lot of info available online. BetterHealthGuy.com has compliled tons of info on his site about Lyme disease.

You probably know that testing is very unreliable. It sounds like your Dr doesn't know much about Lyme disease, but that's very common.

Let me know if I can be of any help.

Do you know of any protocols that are proven to be reliable?
I do not eat sugar, gluten, corn. I take lecithin on and off for the choline/inositol to help with liver function. I am allergic to the sunflower lecithin.
I do not eat dairy, but drink a lot of Bio-K that has 10 strains of bacteria to help immune function and leaky gut.

saint,

That's great that you are have already eliminated all those foods from your diet and are getting probiotics.

There are always some people who find each protocol helpful and they improve a lot and some who do not. Same with using a rife machine, or other alternative healing methods.

It's best to read about each one and decide for yourself what you might want to do.

There is lots of info online and facebook groups for different methods too.

If there was one magic bullet I guess everyone would be using it and we would all be well.

Dr Richard Horowitz's new book called, "Why Can't I Get Better?" may be helpful for you. He discusses 16 points that should be addressed in order to overcome Lyme and other chronic diseases. He is a well known LLMD in NY.

Thanks. I'll look the book up. I'm trying to locate people diagnosed with fibro/ cfids who found out they had lymes. If you know anyone, please ask them to respond. I'm looking for viable natural therapies. I think the antibiotic thing is a big moneymaker for doctors, as I read antibiotics become useless.

saint,

There are a lot of people who were first diagnosed with FM or CFS or CFIDS and later found out they had Lyme disease and other tick-borne infections, on lymenet.org's Medical Questions Board.

You can read posts and post your own questions there. You can search topics and read about many different therapies.

If you would like to join lymenet, you can go to lymenet.org, click on flash discussion, sign up for free, click on "Medical Questions" board and read posts, search posts and post your questions.

On lymenet.org, I am Dekrator48.