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Help for a difficult case

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Kontra, Nov 6, 2012.

  1. Kontra

    Kontra

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    Hi guys,

    I’ve been reading this forum with interest and wondered (hoped) some people might be able to offer some thoughts as things are extremely rough for me at the moment.

    I’m quite a severe case with a triad of issues stemming from I believe the adrenals, liver and gut. Standard bloodwork from my GP comes back negative.

    I experience the following symptoms....

    - Hypoglycemia (somewhat diet controlled)
    - Constipation
    - Gas
    - Bloating
    - Almost complete food intolerance (starch, fruit, dairy, eggs, yeast, grains)
    - Histamine intolerance
    - Fatigue (although not bedbound)
    - Multiple Chemical Sensitivity
    - Shortness of breath and air hunger (came on after gas exposure. Now chronic even when exposures are removed)
    - Liver/gallbladder throbbing ache
    - Adrenal/kidney throbbing ache
    - Brain fog
    - Panic attacks
    - Muscle ache (shoulders/neck/chin)
    - Severe insomnia
    - Skin pigmentation patches
    - Light sensitivity

    I’m almost completely non functional with these symptoms. I will have to lay in bed unable to think about anything else besides my breathing for hours. The severity of these symptoms has progressed over 4 years. What took me from tolerable to non-functional was a gas exposure about 4 months ago. That’s when my liver really felt like it had packed in.

    My digestion is horrible. I can’t digest any carbs but feel I need them. White rice spikes my blood sugar too much. Food ferments and putrify’s in the gut and I seemingly have limited peristalsis to move waste through the body. Certain things like magnesium and betaine HCL help a little but not enough. I’m still not digesting my food and getting weaker as a result. Diet is super clean. I have tried probiotics on occasion with limited success.

    My liver is at the core of my issues. I can feel it chronically under my ribcage, even more so when I constipated. I believe my MCS is purely a liver detoxification problem with fast phase 1 and slow phase 2 activity. My supplement tolerance is terrible. Standard adrenal supplements don’t ‘clear’ from my system and they leave me wired even at small doses. I believe this is likely liver related. Liver supplements like Milk Thistle ‘stir up’ toxins but they are not eliminated effectively, typically leaving me worse off. I strongly believe I am an under-methylator.

    My gut feels very raw, inflamed and pathogenic. Because of very weak adrenals and worsening of nervous system symptoms such as air hunger, I’ve been unable to tolerate anti-fungals or any forms of detox. I have intolerances to eggs and dairy, and constipation from starch, fruit, grains and legumes. I haven’t had a histamine test but react horribly with extreme brain fog, crawling skin and increased salivating to fermented/aged foods. I only made backwards progress when trying the GAPs diet as I couldn’t tolerate sauerkraut, kefir, beet kvass or bone broth but tried them anyway.

    Some points to note.....
    - I have no fillings
    - I was born with jaundice and premature and grew up with asthma and acne, for which I used inhalers and antibiotics for a long time
    - I developed a carb addiction when I first became ill 4 years ago, but remain very slim
    - Trying an asthma inhaler recently sent me into a seizure and severely damaged my adrenals.
    - My environment is mostly non toxic. The construction is 5-10 years old with no recent development work. No odours from cleaning chemicals, laundry, air fresheners etc. The house is gas centrally heated though (pretty much impossible to avoid).

    I’ve tried lots of things, but rarely have been able to stick the course, either due to adverse reactions that are too uncomfortable, or sensitivities to supplements.

    I’m stuck in the following loop....

    Digestion is poor due to weak adrenals and gut dysiosis –> Unable to tolerate any forms of ‘die off’ due to nervous system instability, air hunger, probably due to weak adrenals –> unable to tolerate supplements to assist adrenals due to poor liver clearance and/or gut issues –> do not have the adrenal strength to detox the liver and the channels of elimination are not open anyway.

    I’m in desperate need of help. I’m particularly interested in those that can familiarise with the ‘liver ache’ and how to overcome it.

    I need to start digesting my food somehow and get some additional bassline nutrient if possible to stabilise me. Does anyone have any advice on this?

    Many thanks for reading!
     
  2. Freddd

    Freddd Senior Member

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    HI Kontra,

    If you would go to the Active b12 basics and look at the symptoms list and then add any additional ones you find would be helpful. Though clearly you haver a lot of the same symptoms as many of us have had. It looks like you are provbably going to have hypersensitivity to the active b12 protocol taper and should start at the low end and o it in stages. Carnitine should be waited for becasue any normal amount will likely be terribly unpleasant and intolerable and yet is possivly needed to heal certain things in your brain. Do some reading and learn about these things

    DISCLAIMER

    I am a self taught systems analyst and consultant. I am not credentialed, certified or licensed to do anything besides drive a car. I have been disabled by the disease processes being discussed and affecting neurology in a multitude of ways for 10 years and impaired in a variety of ways and levels for 54 years before that. Everything I say is my opinion, synthesis, understanding or otherwise of my own creation except direct attributed quotes. Approximate paraphrases are also my interpretation of what I have read. All of this is at best my data analysis, understanding, synthesis and hypotheses and not to be construed as medical advice. I am not responsible for anything you do with any information provided in any way. Anything you do is your own responsibility and at your own risk. There are no published peer reviewed studies backing up my opinions or statements, except the incidental ones quoted or implicit in my synthesis or understanding, and then only in so far any reading of such papers may confer. Your interpretations, actions and variations of what I say are strictly at your own risk.
     
  3. Aileen

    Aileen Senior Member

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    Can't help with the 'liver ache' but something else did leap out at me. You mentioned a gas exposure. Just how bad was this? I am wondering about possible carbon monoxide (CO) poisoning. That would certainly take you from bad to worse. If this is the case, perhaps oxygen would help.

    I have found out that I have a serious CO buildup but unfortunately O2 didn't help me. Doesn't mean it won't help you though, if it turns out you have a problem. The good news is that you can test for this. In addition to the usual tests that doctors run for CO poisoning, since you have MCS (as I do) you should check into a form of MCS called MUSES Syndrome. For info: www.mscrr.org and take special note of info in the orange box.

    I'm sure some other people will have some comments on your other issues. Good luck.
     
  4. Freddd

    Freddd Senior Member

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    Hi Kontra,

    Well, if there is also MCS that would be entirely usual with paradoxical folate deficiency nad b12 deficiencies It can go away in months with the proper treatment. The jaundixce as a baby is almost always becasue of excess bilirubin from excessive red cell breakdown caused by vitamin E deficiency. Inmdeiate doses of Vit E are usually given the infant and put under lights that break the red pigment down.



    DISCLAIMER

    I am a self taught systems analyst and consultant. I am not credentialed, certified or licensed to do anything besides drive a car. I have been disabled by the disease processes being discussed and affecting neurology in a multitude of ways for 10 years and impaired in a variety of ways and levels for 54 years before that. Everything I say is my opinion, synthesis, understanding or otherwise of my own creation except direct attributed quotes. Approximate paraphrases are also my interpretation of what I have read. All of this is at best my data analysis, understanding, synthesis and hypotheses and not to be construed as medical advice. I am not responsible for anything you do with any information provided in any way. Anything you do is your own responsibility and at your own risk. There are no published peer reviewed studies backing up my opinions or statements, except the incidental ones quoted or implicit in my synthesis or understanding, and then only in so far any reading of such papers may confer. Your interpretations, actions and variations of what I say are strictly at your own risk.
     
  5. GracieJ

    GracieJ Senior Member

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    Welcome to the forums, Kontra. Your symptoms list sounds very familiar to me... and will to many others here. It has been interesting over time to see how close the symptoms lists for several things really are, including ME/CFS, lupus, Lyme's disease, fibromyalgia, and aspects of MS.

    My breakthrough with over 22 years of ME/CFS symptoms was detoxing and herbal medicine, which finally allowed me to SLEEP, and then slowly I was able to regain function in other areas. This followed years of using the standard ME/CFS medicines, such as sleeping pills, muscle relaxers, digestive aids, probiotics, hormone therapy, cortisol/thyroid support, etc., all of which eventually failed in effectiveness. When I reached nine prescriptions, I said ENOUGH and started using more and more vitamins and herbs.

    (I am at about 75% function, and often feel very guilty that so many symptoms are almost forgotten memories... as long as I am strict about diet, sleep, and pacing. Recovery for me has been relative; one bad move, or one too many cold viruses, and out comes that good ol' mac truck again overnight.)

    I could not use detoxes, would get too hypoglycemic within a couple of hours. It was finally a combination of strict diet* and bentonite clay cleanses that turned the tide for me. Once my system was cleaned up, it seemed the hormone support regimens worked a lot better, and I was able to tolerate more vitamin therapy and a wider variety of foods.

    *Per metabolic testing, I am a fast oxidizer, so my diet was no simple carbs at all, hardly any complex carbs except greens, no dairy except eggs, no fruit except apples and an occasional banana, no grains generally, no legumes -- lived on eggs, meats, greens, low starch veggies, small amounts of nuts, and about 50g per day of brown rice or forbidden rice. (Half a cup!)

    Each of us on here have had a different road we've followed, different levels of severity of symptoms, different approaches.

    I can't emphasize enough how valuable it is to get on these forums and just READ AWAY!! You will recognize yourself in the descriptions and come away with new ways to cope. Best of luck!
     
    justy likes this.
  6. caledonia

    caledonia

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    By gas exposure, do you mean carbon monoxide? If so, even if it was a low or chronic exposure, instead of a large exposure, you should do some hyperbaric oxygen treatments. The reason is that the carbon monoxide will replace the oxygen in your blood and it is very hard for it to come back out on it's own. So you have to get into oxygen under pressure to drive it back out.

    If the magesium and betaine hydrochloride are working somewhat, I would increase those more as long as you tolerate them. For the magnesium, magnesium oxide is not absorbed well, so other forms like magnesium taurate or magnesium glycinate are better. You should be taking the magnesium in several doses spread throughout the day.

    Gradually increase the magnesium until your bowels are very loose (diarrhea), then back off a bit, and that is "your" dose. It will likely be pretty high, because if you're having low adrenal function, you'll be leaking magnesium out and need to replace it (thus causing the constipation). You also say you have insomnia. I had problems with insomnia and it turned out I was twitching my feet hundreds of times a night. I increased my magnesium and that calmed down the twitching and now I sleep pretty good. So it's a good bang for the buck.

    I also do not tolerate any adrenal supplements for whatever reason, so I concentrate on replacing lost electrolytes - so in my case, that's salt, vitamin C and magnesium. Some people may also need to replace potassium. I use powders dissolved in water and drink that four times a day. It absorbs a lot better that way.

    To find my level of betaine hydrochloride, I increased the pills until I felt a burning in my stomach. Then I backed off one. I think at one point I was taking either two or three betaines with each meal. Once I started on some methyl folate the low stomach acid straightened out, and I don't need to take that any more.

    For food allergies, you can get a blood test by Allatess and see what you're allergic to. Then they can make up drops for you to take which will allow you to get used to your allergic foods. You'll have to avoid them for awhile and do some food rotation. They send you a food rotation plan made up specifically for you. That was too much for me to do, but I did avoid all of the foods listed. After about a year, I can have about half of those again.

    You may actually be able to eat a lot of the foods you're avoiding, if all they do is cause constipation, once you start taking enough magnesium.

    I've had significant reduction in MCS by taking methyl folate. Now this is puzzling, because technically, you also need to be taking methyl B12 for this to cause methylation in order to produce glutathione in order to deal with chemicals in your environment, thus alleviating MCS. Maybe I can get enough methyl B12 through my diet? I do eat a good amount of meat.

    I recently had my methylation genes tested, and I have mutations in both the folate and the B12 processing genes, so it's still puzzling.

    But anyway, you can try just taking a tiny amount of methy folate (Folapro/Metafolin) (5 MTHF) and if that doesn't work, then add a tiny amount of liquid methylcobalamin (methyl B12). Start with very low amount (like 1-10 mcg) because as you restart methylation, you'll also start to detox which will make you feel worse.

    You could also try Thorne Labs Basic Nutrients IV or V (IV has iron, V doesn't). This multivitamin has the active forms of folate and B12 in it. You may also have to add liquid methyl B12 to it, because the powder form that goes through the stomach doesn't absorb very well.

    Again, whatever you do, start one thing at a time. Start LOW and go SLOW. If you have any adverse reactions, STOP, and let everything clear out for several days or however long it takes. Then if you wish, you can restart again at a much lower dose to see if you can tolerate it.

    I keep a medical journal of all the stuff I'm taking, and my reactions to it, so I can track what is doing what and how I'm reacting to it. I simply use the calendar template in Microsoft Word for this (month at a view).

    =-=-==-=-=-=

    Ok, that is a lot of stuff - so where to start - always start with the gut. I would start with magnesium to get your bowels moving. Then if you wish, you can do a general gut program of gluten free, dairy free, betaine hydrochloride, digestive enzymes and probiotics and see where that gets you.

    Hopefully that will get you sleeping and digesting better and give you some more strength to deal with the rest.
     
    justy likes this.
  7. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    hello kontra

    maybe you can consider a liver cleanse to detox and purchase a dry salt inhaler to restore glutathion in your lungs.

    1) Liver cleanse - google Andreas Moriz

    2) http://www.the-new-saltpipe.com/products_products.php
    http://www.the-new-saltpipe.com/clinical-studies.php

    4) Try to avoid anything with sulphur, I guess your methylation is not working right and you store toxins like ammonia, cyanide, sulphites

    5) light and pain is probably due to B12 and B6, try to have it checked

    Best,

    Marlène
     
  8. Kontra

    Kontra

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    Was your 'metabolic testing' using a hair analysis? Or something different? Nutritional Balancing appeals to me due to the all encompassing nature of my particular symptoms and the ideology that you build the body up, rather than attempt aggressive detox procedures.

    Not sure about clay. Never really used it. I did try 'P&B' shakes for around a week and it felt like cement in my system, but I think that might have predominantly been the psyllium.

    Once my liver is in better shape then my tolerance for supplements and foods should increase, just how to do it safely without making myself worse is the million dollar question.

    Thanks!
     
  9. Kontra

    Kontra

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    I'm not sure if it was carbon dioxide (?). It was a gas leak in the street which drifted into the restaurant I was in. So the equivalent of leaving the gas on in your house and inhaling the fumes for half an hour.

    I did briefly try a canned oxygen product during my bouts of shortness of breath and it actually made me worse. It might have been a propellant (despite stating pure oxygen) or the oxygenation of my system was too much for my body to handle. I don't know how scientific that might be just that that was my experience.

    Ah, having read a little more it appears I may having conflicting issues with regards to methylation. Would I be right in thinking MCS is related to over methylation and high histamine is related to under? I have significantly more symptoms of under methylation. I might try to take a histamine test to be sure on that front (only going by my symptoms from ingesting aged foods). Is there a reliable test to measure methylation? I don't have any doctor support (consigned to being mentally ill apparently) so would have to look for tests privately here in the UK.

    I'll up the mag once I can find a safe source. Citrate is fermented from corn and caused me some gut irritation, but was good for the bowels. I hope I'll be okay with glycinate.

    Thanks!
     
  10. Freddd

    Freddd Senior Member

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    Hi Kontra,


    Ah, having read a little more it appears I may having conflicting issues with regards to methylation. Would I be right in thinking MCS is related to over methylation and high histamine is related to under?


    MCS is very often from low folate as often from paradoxcical folate deficiency. That can account for up to 40 sympotoms or so. Each of the mb12 and adb12 deficiencies is responsible for about 100+ overlapping symptoms each. Most of your sympotms shout "blocked merthylation" . So called Over methylation symptoms are mostly adb12 symptoms that are from problems in a different pathway from methylation. Adb12 does 3 differnt sets of things. With folate deficiency and mb12 deficiency the methylation process is blocked or broken causoing hundreds of of potential symptoms.
     
  11. Sparrow

    Sparrow Senior Member

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    As a note, Magnesium glycinate is actually pretty easy on the bowels. Which means you can take a much higher dose (which is usually a good thing, since we tend to need a lot of it), but it is much less likely to help with your constipation issues than magnesium citrate. It's still great to take, though.

    Have you tried some vitamin C? I wasn't able to read everything here, so I'm not sure if that was already mentioned. It's another supplement that will loosen things up at high enough doses.

    I'm really sorry you're condition has gotten so bad. I understand well the challenges of trying to heal a body that is in such a precarious state and that doesn't seem up to handling the treatments. I was there myself about a year and a half ago, and your symptoms sound very familiar. I'm not sure if what I did is the "right" answer. There is some indication that the sooner you can treat things, the less chance of permanent damage. But there are also a lot of cases of people attempting treatments their bodies weren't able to handle at that time and getting worse. It's a scary thing to feel like the choices you make might determine your future health. And that kind of stress tends to just make us worse.

    If it was me, I would focus on giving your body as much basic support as you can (vitamins, minerals, etc. and foods that you're really craving), removing as many things as possible that are hard on it (foods with particularly bad reactions), drinking lots and lots of water (with enough electrolyte drinks that the extra water doesn't cause additional problems) which will also probably help your constipation, and resting yourself more than you think you possibly can. And then some.

    If you can find probiotics, digestive enzymes, etc. to help a little with your gut (I found Pure Encapsulations DGL Plus before meals also very helpful), that's great. I wouldn't launch into a full-force attack or detox until you're a bit stronger (though what do I know). I felt for me that my body already had enough to deal with without the extra strain.

    For what it's worth, a lot of my really scary symptoms (like your sore liver, breathing troubles, etc.) resolved themselves once I was out of that really low crisis state. I think my body was having a lot of trouble adjusting to whatever was going on (I suspect a combination of suddenly lowered blood volume and less ATP energy available), but the body is smart and once my overall condition improved some, it figured out how to stabilize things. It may have been partly the supplement support I was on, or just natural improvement over time. I don't know. But symptoms seem to shift constantly for a lot of us. So whatever you do, hopefully that phase will pass.

    Have you had your adrenal function tested by the GP? How bad are those skin pigmentation patches, and are they lighter or darker? If they become significant, that might be worth another look. It's the only symptom on your list that doesn't sound just like my ME.
     
  12. Phred

    Phred Senior Member

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    Hi Kontra,

    Your symptoms sound like Celiac Disease. Gas, bloating and constipation are really big symptoms of Celiac. Do you have heartburn too? The malabsorption from the intestinal tract is what starts all the CFS type symptoms (fatigue, neurological, etc.) The skin issues could also be linked to Celiac (dermatitis herpetiformis). Celiacs also tend to have a lot of issues with the gallbladder.

    You say the general tests from your GP come back negative. Have you had a full Celiac Panel?

    • Total IgA (Immunoglobulin Antibody) Some people have low total IgA. If you are deficient in Total IgA, the other tests involving IgA are invalidated.
    • tTG IgA (Anti-tissue Transglutaminase) This is very strongly correlated with celiac disease, however, some people with diseases such as Type 1 Diabetes, Hashimoto’s thyroiditis, HIV, and autoimmune liver conditions can have a falsely positive tTG test. Those conditions all have a higher incidence in celiacs, though, so there is a chance you may have both conditions.
    • EMA IgA (Anti-endomysial Antibody) This test is very specific to celiac disease. If these levels are elevated it’s celiac! However, this test is not as sensitive as tTg IgA
    • AGA IgA (Antigliadin IgA antibodies) Positive results indicate intolerance, and potential for celiac. Is being repaced by DGP IgA
    • AGA IgG (Antigliadin IgG antibodies) Positive results indicate intolerance, and potential for celiac. This may be positive in people with low Total IgA.
    • DGP (anti-Deamidated Gliadin Peptide) IgA This is a newer test. It is more specific to celiac disease than the tTG and AGA tests, and can sometimes catch celiac disease in younger children and people with deficient Total IgA.
    • DGP (anti-Deamidated Gliadin Peptide) IgG This is a newer test, replacing AGA IgG
    Since you didn't mention having CFS/ME you might want to check this possibility. Celiac can be triggered at any time in life, by any circumstance.
    Good luck and I hope you can figure out how to heal yourself.
     
  13. caledonia

    caledonia

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    The HDMI Methylation Pathways Panel is a functional test of your methylation cycle. You can get it here without a doctor: http://www.seekinghealth.com/methylation-pathway-panel-vitamin-diagnostics.html

    MCS is due to lack of glutathione, which is due to poor methylation. Glutathione is a major antioxidant in the body. For every chemical molecule that you breathe/eat/absorb through the skin, your body uses up one glutathione molecule to carry it away. So if you're low in glutathione, your body can't deal with chemicals. So even tiny amounts that won't bother a normal person, will bother you.

    Did the other people in the restaurant have similar health issues later with the gas, or did they just notice the smell and not have any further problems? If so, I'm thinking hyperbaric oxygen probably wouldn't be necessary. If the gas was strong enough to warrant hyperbaric oxygen treatment, everyone would have been affected, not just you, as it's a deadly toxin.

    Natural gas is carbon monoxide (CO = one carbon and one oxygen molecule). Carbon dioxide is what we breathe out (CO2 = one carbon and two oxygen molecules). Actual CO is colorless and odorless, just like CO2. The gas company adds the distinctive bad smell so that people can detect when there is a leak.
     
  14. Kontra

    Kontra

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    Thanks Caledonia,

    No is was just me, although I had many of the symptoms I listed above already prior to that exposure, that's just when my MCS developed and other symptoms seemed to decline. No-one else in my party was affected. That was likely the 'tipping point' that sensitized me to my environment. My sense of smell (to toxins) increased 10 fold after that exposure.


    Thanks Sparrow.

    Did you experience instances of liver ache as well? I'm desperately seeking some expertise in this symptom as it seems very uncommon.

    What sort of electrolyte drinks did you do? I'd be wary of any added ingredients. That might be right up my street. I do have a natural craving for salt which I eat to satisfaction. If I am to try enema's that might be very useful.

    I've got some digestive enzymes. I tried a stint with probiotics in the past (custom probiotics) and didn't notice much either way even at high doses, but it may be of benefit to take them.

    I used to tolerate vitamin C in high doses, but since dropping to this lowered state of health, have struggled a little bit with it. I was using ascorbic acid which may have been a problem due to the corn, or simply that high doses now just become toxic in my body.

    My body has taken a hammering of late. gas exposure -> multiple VOC exposures after -> seizure from trying an asthma inhaler -> complete insomnia for 3 days, electrolyte imbalance and air hunger from trying a few capsules of a parasite cleanse -> trying a bottled oxygen product which gave me a panic attack. So it might need some time to settle.

    I've had cortisol blood tests in the past but not recently. I've got an ASI kit which I know my doctor won't approve of but worth getting a measure of my adrenals. I do know my adrenals are playing a massive part to my poor health as I can quite literally feel them in my back at times! Not that I can tolerate any supplements anyway. But it seems people are typically bed bound and experience nausea, vomiting and an all over tan if addison's is to be diagnosed.

    The pigmentation patches are mainly over my chest and neck. My GP believes them to be fungal and I believe they are an external sign of gut dysbiosis and/or poor liver function.

    Ta,
     
  15. Sparrow

    Sparrow Senior Member

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    I had my share of fungal infections as a sign of compromised immunity too. Glad you've had those checked out.

    Vitamin C at very high doses can actually cause some extra oxidative stress. For most people it's no big deal, and it only happens at very unusually high doses. But if vitamin C is causing difficulties for you, it might be a possibility that you're not dealing with oxidative stress as well as a healthy person would (which seems quite likely anyway, given some of the finding about most of us).

    In that case, you may want to try ramping up on antioxidants in general for a while and see if that helps take some of the burden off your body. When I was at my worst, I took vitamin C, E, natural beta carotene (not the synthetic stuff, which doesn't work nearly as well as an antioxidant), tons of berry concentrates, CoQ10, and a ton of other antioxidants. I still take most of those, though for some I've now lowered the dosage. It's possible they had an impact in making me feel less like death, so it might be worth considering in case the vitamin C reaction is a clue.

    Along these lines, it might also be worth looking into zinc, manganese (in very small doses) and selenium to support your body's natural defenses against oxidative stress; NADH for some potential help in getting glutathione (a potent antioxidant) into your cells to protect them; and possibly NAC or ala (though some would disagree with the last) to try to bring up your own glutathione stores. The Simplified Methylation protocol you can find here is also designed to help restore glutathione levels. Many of us find that also adding in some methyl B12 and dibencozide helps even more. As Freddd mentioned, you would probably need to start VERY low dose, though (much less than a full tablet) until you know how your body will react to it. Sometimes starting rusty gears moving causes its own issues (and side effects) unless you do it very slowly. You may also need to keep an eye on your potassium levels, as the start-up can create more demand for potassium and leave your levels low (and too much or too little potassium can be a dangerous thing).

    It might also be worth being cautious with things that are triggers for people with Glucose-6-phosphate dehydrogenase deficiency. It's not a condition you're likely to actually have full force, but there is some speculation that our G6PD may be a bit low in some of us (though not nearly as low as for people with the actual genetic condition), so things that would trigger a crisis in those folks might put a little extra strain on us too. And I think when your body is already in that much crisis, the less extra strain the better.

    If you want a pure electrolyte drink with no fillers, you can just add some sea salt and potassium crystals (potassium chloride seems readily available) to water or another beverage. If you're already taking magnesium elsewhere, you might not need to worry about adding that in. There is a bit of speculation on whether glucose has a role in helping absorption of electrolytes, so a little sugar or dextrose may not actually be a bad thing. Or better yet, have a bite of banana or something with the natural helpers along with it, if you can tolerate it. I used to make my own. I use nuun now, but it's been going fine. Some of the companies making these things put a lot of research into the proportions of different minerals, and the proportion of minerals to water in these things, because that's important, and I'm sure I never had the proportions exactly right making my own. To be honest, I often drink it watered down anyway, which is less optimal for absorption, but seems easier on my system.

    If you haven't figured out the sleep yet, I would recommend lemon balm (also an antiviral) and Douglas Labs Sublingual 3mg Melatonin (that brand and dose specifically, I swear, is eons more effective than anything else I've tried for sleep, including any kind of melatonin), plus fully implementing all of the standard "sleep hygiene" techniques out there. I still don't get refreshing sleep, but I do fall asleep now without issues most of the time. I take the lemon balm along with some other calming herbs about an hour before I want to be in bed, and the melatonin 10 - 15 min before, and it's worked well for me. Not sure whether it will be as effective for you too, but it might be worth a try.

    As a side note, do you have the "panic attacks" when you're not standing up? The symptoms of acute POTS can look a lot like a panic attack, and lots of us suffer from that, or other kinds of orthostatic intolerance.

    My liver wasn't as constantly sore as it sounds like yours is, but it definitely wasn't pleased with me either. I tended to get pains that came and went. I did find some info suggesting that at least some of us have a mild and difficult to detect form of liver inflammation, and should stay away from hepatotoxic drugs if possible. There's a note about hepatotoxic surgery drugs at the back of the International Consensus Critera document. Can't remember where the other note was. But it was unfortunately one of those things where it looks like there wasn't much to be done about it except to try not to strain the system more than necessary. It sounds like you're doing pretty well with that already anyway. Mine seems to have recovered from its crisis along with the rest of me. Thankfully livers are resilient. I would try not to worry about it if you can. But I know how impossibly hard that may actually be.

    Hopefully with time and rest (and a little help), your body can get you past at least the worst of this. It may not be able to heal the ME, but some of the actively distressing symptoms seem to fade down if you can give it enough help in recovering. I hope this passes for you soon.

    That said, I'm still bed ridden. But compared to how I was a year ago, I feel like a million bucks. No chronic pains, no constantly feeling like death warmed over. If I could just lie here like a lump and not do anything at all, I'd feel fantastic. ;) But I'm getting better. Steadily better every week.
     
  16. nanonug

    nanonug Senior Member

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    Virginia, USA
    Kontra, I am sorry you are in such bad shape.

    Looking at your symptoms, I think there is a very decent chance that you might be dealing with Mast Cell Activation Syndrome. Look at Table 1 of the following document and see if it rings any bells. If it does, I will post additional info for you: "Polycythemia From Mast Cell Activation Syndrome: Lessons Learned."

    Let me know if you have any questions.

    Good luck!
     

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