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cfs and impaired sulphur metabolism

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by leaves, Mar 18, 2010.

  1. Countrygirl

    Countrygirl Senior Member

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    Hello June,

    I am slowly reading through the long article that leaves recommended, and so much of seems to reflect a number of the problems I have had over 30 years. Of course, there may be another explanation - I have much to learn about this yet.

    Certainly most of the foods listed I found worsen my symptoms; my bilirubin levels are high (a chronic low jaundice state, I think); I cannot produce pancreatic enzymes or sufficient hydrochloric acid; I have MCS; I have been diagnose with 'leaky gut'. I have much more to read of the article, but so much of it seems to be applicable.

    One thing that interests me is the bilirubin findings. High levels of bilirubin suggests a diagnosis of Gilbert's Syndrome, which is reported as being found in 16% of people with ME. What is the relationship of the above to Gilbert's? Is it one and the same thing? It is a genetic disorder and I wonder if this makes us susceptible to developing ME in the first place. We need one of science boffins to answer this for us.
     
  2. richvank

    richvank Senior Member

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    Hi, ukxmrv.

    I think it's interesting that you have difficulty with sulfur-rich foods as well as chlorine (I'm assuming that you mean hypochlorite, which is the form of chlorine in bleach and in swimming pools).

    The body normally detoxes hypochlorite by the use of taurine. As you may know, taurine comes partly from the diet and the rest is made in the body as part of the sulfur metabolism. So I think it's likely that there is a connection between the two issues you mentioned.

    The most common problem in the sulfur metabolism in PWCs appears to be a partial block in the methylation cycle, which lies at the beginning of the sulfur metabolism. That is usually associated with glutathione depletion. When this partial block is present, it seems that the sulfur metabolism drains excessively through the transsulfuration pathway and on into sulfoxidation to sulfate and then the sulfate is excreted. By the time a person is tested, the sulfur metabolites in general are depleted.

    In my opinion, the first place to look is at the methyation cycle, using the Vitamin Diagnostics methylation pathways panel. A less direct way is to run the Genova Diagnostics Metabolic Analysis Panel, which is a urine test that can be run at home and is available without a doctors' order from www.directlabs.com. If there is a partial block in the methylation cycle, the simplified treatment approach, which consists of non-prescription supplements, is able to lift it in most PWCs, and allow glutathione to come back up to normal. My position is that it should be considered together with one's physician, and physician monitoring is necessary while on this treatment, to guard against adverse effects, which have been reported by a small number of people.

    Another thing that has been helpful for some PWCs with sensitivity to sulfur-rich foods is to take molybdenum, at dosages up to 500 micrograms per day. Molybdenum forms a cofactor for the enzyme sulfite oxidase, which normally converts sulfite to sulfate. If it becomes overloaded because of excessive flow into sulfoxidation, sulfite can rise, and this can produce symptoms such as headaches, as well as further depleting glutathione.

    I hope this is helpful.

    Rich
     
  3. leaves

    leaves Senior Member

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    Hi Rich,

    I have very similar symptoms as ukxmrv however I am confident that methylation has nothing to do with it. I have been a firm believer of methylation, and have been on a methylation protocol for a very long time. However without results. Later tests revealed that methylation was indeed NOT my problem. And I just learned that the pst enzyme IS a problem. I am in a very early stage treating it, but I can say that my cognitive problems have improved and that my energy has somewhat increased. I am very sorry to have learned the pst problem so late, as I feel I lost a lot of time trying with hindsight useless protocols.
    I appreciate all your advice on the methylation thread and I am convinced that for many people with CFS this is indeed a problem. However cfs victims are not a homogeneous group, and should not be treated as such. There is, as of yet, not a one fits all approach. Some people may need to support their methylation pathways, others will need to support sulphur metabolism, or both, or something else.
    Over the years with CFS I have learned that an evidence based approach is most effective. I try to treat only problems that I know I have, either confirmed by testing, or if that is not possible or too expensive, by looking as objectively as possible, to the symptoms that I have. Based on these experiences I have decided that when I start a new, experimental protocol that is not based on testing but on introspection or some external advisor and do not see effects within a few months, I will not stick to it. One should not be too attached to ones hypotheses. Thanks,

    Leaves
     
  4. ukxmrv

    ukxmrv Senior Member

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    Thank you very much Leaves and thank you Rich, for the contributions.

    It's given me a lot to think about and I'm going to try some experimention and take notes to hopefully better identify the problem.

    I really do appreciate that you would spend the time to reply to me.

    XMRV+
     
  5. richvank

    richvank Senior Member

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    Hi, leaves.

    Thank you for your response. I certainly agree that we are dealing with a very heterogeneous population in CFS, and I also agree that it is not a good idea to fall in love with one's hypothesis! :)-)
    I'm happy to hear about the progress you have been making. I also agree about the importance of testing. I would be very interested to know which tests you ran to rule out methylation issues. Also, I'd be interested to know how you identified the phenol sulfotransferase enzyme as the problem in your case, as distinguished from a deficit in sulfate, which this enzyme needs for its detox reaction.

    Also, your post about this reminded me of a paper written by Rosemary Waring et al in autism research a few years ago:


    Biol Psychiatry. 1999 Aug 1;46(3):420-4.
    Sulphation deficit in "low-functioning" autistic children: a pilot study.

    Alberti A, Pirrone P, Elia M, Waring RH, Romano C.

    Department of Pediatrics, Oasi Institute for Research on Mental Retardation and Brain Aging (IRCCS), Troina, Italy.

    BACKGROUND: Parents of autistic children and autism support groups often report that autistic episodes are exacerbated when the children eat certain foodstuffs such as dairy products, chocolates, wheat, corn sugar, apples, and bananas. The hypothesis that autistic behavior might be related to metabolic dysfunctions has led us to investigate in a group of "low functioning" autistic children and in an age-matched control group each made up of 20 subjects, the sulphation capacity available. METHODS: Utilizing the biochemical characteristics of paracetamol we evaluated by high performance liquid chromatography, the urine paracetamol-sulfate/paracetamol-glucuronide (PS/PG) ratio in all subjects following administration of this drug. RESULTS: The PS/PG ratio in the group of autistic subjects gave a significantly lower results than the control group with p < .00002. CONCLUSIONS: The inability to effectively metabolize certain compounds particularly phenolic amines, toxic for the CNS, could exacerbate the wide spectrum of autistic behavior.

    PMID: 10435209 [PubMed - indexed for MEDLINE]

    Best regards,

    Rich
     
  6. dannybex

    dannybex Senior Member

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    Hi Rich --

    Does the Genova Diagnostics Metabolic Analysis Panel help determine if there are other problems besides methylation...like sulfation issues?

    Thanks in advance,

    Dan
     
  7. richvank

    richvank Senior Member

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    Hi, Dan.

    The MAP panel looks at a lot of things in addition to giving indirect information about both glutathione depletion and a partial methylation cycle block, but as far as I know, it doesn't give information about the status of sulfation. The competing Organix panel offered by Metametrix does measure the sulfate level in the urine, but I don't think it will tell you how well the phenol sulfotransferase enzyme is working.

    Rich
     
  8. dannybex

    dannybex Senior Member

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    SAM-e and sulfation issues...

    Man, it seems like my last post was three weeks ago, not three days ago. :(

    Anyway, I really think I may have this sulfation problem as well. I seem to notice a pattern depending on what I've eaten, and also can see a pattern in ancient diaries I kept starting back in 1999, when I'd feel better when taking SAM-e (although at times it could make me kind of giddy/restless).

    Then just found this possible -- possible? -- explanation:

    "Methionine reacts with adenosine triphosphate (ATP, which is low in CFS) to form S-adenosyl methionine. S-adenosyl methionine is the principal methyl donor in the body and contributes to the synthesis of many important substances, including epinephrine and choline (also low in CFS?).

    SAMe is involved in the synthesis of creatine, epinephrine, melatonin and the polyamines spermine and spermidine, among several other substances. Methionine plays a role in cysteine, carnitine and taurine synthesis by the transsulfuration pathway, lecithin production, the synthesis of phosphatidylcholine and other phospholipids (which might explain why I feel worse if I eat 'too much' fat, or fattier foods?).”

    Methionine is both an antioxidant and lipotrope, meaning it helps remove fat from the liver. Methionine contributes to the hydrophobicity of a protein. Methionine controls the level of beneficial sulfur-containing compounds in the body. These sulfur-containing compounds are in turn vital for defending against toxic compounds like heavy metals in the liver. Methionine helps reduce histamine levels, which are amino acids that control dilation of blood vessels and influence brain function."

    So...if ATP is generally low in patients with ME/CFS, then at least in a subgroup with sulfation problems, then wouldn't that explain (in part anyway) why SAM-e might help that subgroup...by increasing ATP levels, and helping the sulfation detox pathway?

    Curiouser and curiouser...

    Would love your feedback.
     
  9. Amyiable

    Amyiable Guest

    I have what you describe, at least to some degree. I already do the things you describe (mostly), and also find that MSM helps me. I dump several table spoons in a drink. It lifts brain fatigue, enabling me to last more hours. Also, I react to red wine. Unlike you, I like periodic use of the glutathione precursors (including l-cysteine). Perhaps it's the MSM, or something else - who knows.

    Best,
    Amy
     
  10. leaves

    leaves Senior Member

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    Hi Diesel,

    Below you find what I do for diet and supplements etc. I also do low oxalates. I used to be very sensitive to rice, but can now tolerate white rice fine. I am doing better.

    Diet

    All very pure foods, no additives, no sugar, or coffee, little starch and carbs and low oxalate and salicylate, not too much fruit, enough high quality protein and raw veggies.
    If you want an SCD version of this diet, you limit your starch choices to the bolded ones in the list below. I do much better when avoiding grains and starch, but am too lazy for it ☺.

    I follow the diet pretty strictly. This is what you can eat:


    Protein
    Fresh un-spiced pure meat (preferably chicken/turkey or grass fed beef or organic pork if tolerated)
    tilapia, sometimes salmon, organic or omega 3 eggs, sardines on water (not on olive oil) if you are not histamine intolerant.
    Goat milk kefir (make sure you get a good quality kefir plant).
    Occasionally you can eat goat mozzarella or cottage cheese. But only if you feel better.

    Starch/breads
    • White rice (Plain e.g. Sunwhite, medium or long grain, Arborio, Doongara, or glutinous but not flavored like basmati, jasmine, or wild rice.
    • White rice noodles.
    • yellow split peas,
    • black eyed peas,
    • coconut flour (if tolerated)
    • pumpkin seeds flour
    • flax seeds.
    • Chebe bread mix
    • EnerG white rice loaf/ flax seed loaf or tapioca loaf (not too much)
    • Green lentils
    • Split chick peas/ split mung beans
    • Occasionally 1 corn tortilla or small bag corn chips

    Veggies
    Pumpkin, bok choy, string beans, lettuce, mushrooms (e.g. shitake) cabbage, Brussels sprouts boiled cauliflower, mung bean sprouts, onion cooked, cooked carrot, asperges, turnip, fennel (moderate), pumpkin, yellow/acorn squash, peeled cucumber (if tolerated), seaweed (moderate), peas. Garlic, avocado (if tolerated), rucola (if tolerated)

    Fruit
    Peeled golden delicious apples, passion fruit, peeled pears, Papaya, melon, pomegranates, yellow plum (if tolerated nectarine, cooked pineapple, cherries (if not black))

    Other
    Sunflower (limited!) or pumpkin seed paste (you can buy this on line)
    Limit to 1 teaspoon gluten free soy of terayaki sauce
    Fresh cilantro, fresh ginger (moderate) salt, horseradish

    Sweeteners
    refined sugar or maple syrup (limit this)

    Oils
    Organic Butter, pumpkin seed oil for salads
    limited: sunflower, safflower and canola.

    Drinks
    Fennel tea, nettle leaf tea,
    electrolyte (and filtered!) water
    pomegranate juice.
    Self made green juice from romaine lettuce, golden delicious apple and cucumber (if tolerated).


    This diet is low in oxalate, cysteine, glutamate, salicylate and amines. After half a year you can increase salicylates and amines (you can probably tolerate them then) low oxalate is forever.
    It is quite specific; e.g. you can eat coconut flour, but not coconut oil, (high salicylates) etc.

    Follow your own intuition; if you note that some of the food on this list is not good for you, avoid it.

    Breakfast idea: fruit with kefir and flax seeds or an omelet

    Lunch idea :
    bread made from cocoonut flour and pumpkin seed flour
    Salad from raw cabbage, apple, garlic, pumpkinseedoil
    salad with cucumber romaine avocado, cilantro and chicken.
    Vegetarian sushi.

    Dinner idea:
    Pumpkin soup with mushrooms
    cauliflower soup with chicken ginger garlic and split chickpeas.
    Stir fry with chicken, bok choy and onion with sunflower seed sauce.
    Str fry with onion, black eyed peas, pork and mushrooms.
    Tilapia, sea weed, horseradish, cilantro, ginger, garlic, rice noodles and mung beans.





    Supplements





    1. Magnesiumsulfate cream/ Epsom salt baths daily. This is to increase sulfate in your body and will help you with detox. Magnesium is good for may things, including the nerves.
    2. Kefir (Doms Kefir is the best, but online you will find people offering good quality kefir too) you can make it yourself with goat milk. This helps reducing inflammation, fighting infections and improves your immune system. It also helps breaking down toxic substances.
    3. Electrolyte water (e.g. Trace Minerals Research Endure Performance Electrolyte -- 4 fl oz) (if this is not too expensive). This helps to balance your body.
    4. Taurine 2 caps daily. This helps with the sulpur problems.
    5. Magnesiumcitrate 2 x 400 mg (eg NSI vitacost) this is good for the nervous system, helps with detox and reduces oxalates.
    6. Fish oil (allergy research group/nutricology) 2 x 1 caps daily more if you don’t eat sardines. This helps with reducing inflammation and detox.
    7. Vitamin k2 (thorne) slowly build up. This is a great antioxidant that does not contain salicylates.
    8. Vsl 3 ds (reimbursed by insurance if you have a nice MD) (if this is too expensive, stick to Kefir). This is the strongest probiotic around and can actually change the population in your gut, in addition it is proven to destroy oxalates in your system.
    9. Natural vitamine A (country life) 1 caps every 2 days. This is needed for detox, the vegetable vitamin A (carotene) is often not usuable.
    10. Molybdenium (eg NSI vitacost) This helps with sullphur problems
    11. Coq10 + alpha lipoic acid + acetyl carnitine (e.g. NSI vitacost) 2 caps daily. This helps with sulfur problems as well as liver detox and other processes.
    12. NAC (jarrow) 600 mg I capsule daily. This increases gluthathione, is a great antioxidant and helps for sulphur problems.
    13. Jarrow b right 2 x daily (if tolerated, if not build up slowly) These B vitamins are needed for many processes including sulphur problems. I take 4 daily, it helps me a lot.
    14. Vitamin D3 (E.g. NSI liquid) 5000 IU daily (have your vitamin D level tested some time, it should be in the 80’s) This is important for immune system etc.
    I also take p5p (you probably need it if you dont dream, and I take traceminerals from thorne)

    I put the brand name because these don’t have bad additives.

    Additional detox support: You can also try spirulina, or chlorella for detox, that worked pretty good for me. Another option is to take activated charcoal every morning. Take this far away from your supplements.

    Please watch out with other supplements, especially herbal supplements (salicylates!!) or supplements that contain large amounts of vitamin c or plant antioxidants etc. I dont take glycine because it can increase oxalates.
     
  11. leaves

    leaves Senior Member

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    I would really try not to eat the gluten and the nightshades (potato is nightshade). if i eat those i wouldnt be able to be out of bed. For me white rice works, but you can also try canned black eyed peas Or chebe bread mix or split chick peas ( dried in a bag in the store). white rice noodles are also easy to make, you could try that. At whole foods you could get enerG gluten free bread; for example the white rice, the flax seed loaf and the tapioca loaf would work. You can also order that online at vitacost.
    dont expect miracles from the epsom salt. Best way to make the cream is to heat epsom salt in a little bit of water on the stove and then mix it with cream.
    I hope you'll feel better in a while, excluding gluten helps many pwc. Diet also helps, limit sugar, coffee and starch, as does clean living; I now have toothpaste from baking soda, only Burt bees milk and sea butter brand for soap, these are all without salicylates.
    I think its wise to postpone the goat kefir. I dont do well with dairy, and cows product make me very ill but do well with goat kefir. I think the benefits of the kefiran and the probiotics outweight the negatives.
     
  12. leaves

    leaves Senior Member

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    Hey Diesel,

    First of all, everyone is different; what works for me might not work for you.
    Coconut oil is VERY high in salicylates, you can see in my earlier posts why that may not be good.
    butter is dairy, so if you are very sensitive that can be a problem. However it is very low in allergens (no lactose, little casein and whey) Some people do well with ghee as it does not contain casein. I cant tolerate cows milk products and cheese but butter is fine. They also sell goat butter at whole foods btw. I always buy cultured butter btw, that is easiest to digest.
    The other types of white rice, and wild rice are high in salicylates.
    black eyed peas is low in salicylates AND oxalates, other legumes tend to be very high in oxalates. Moreover many of them (especially kidney beans!) contain lectins. When i eat kidney beans I get very sick.
    I think diet is the most important step, yes. Especially since you are so sensitive at the moment that you cannot tolerate supplements.
    start with that and add in the supplements later.
    Try to not overdo it on the carbs, and eat your veggies :), especially raw !
    btw if you are so sensitive to most veggies you could try spirulina, and the green juice I mentioned.
    What do you mean; intolerant to fiber; cant you ear ANY fiber? or just not some types; like psyllium (tends to be hard on the gut)
     
  13. Athene

    Athene Never give up

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    Hi folks,

    First, Leaves, thank you so much for this info and thanks Rich as well for adding more explanation and insight.

    I've known I had sulphur problems for about 20 years, I just had no idea what to do about it. Chlorine gives me horrible reactions. I feel incredibly weak and after about half an hour in a swimming pool I have blood blisters all round my nose and upper lip and then blood starts to come out of my nose. Afterwards I get (got - don't go swimming any more!) bad tummy pains and diarrhoea.

    I follow the diet and take the supplements but something is still missing. I am a heavy hydrogen sulphide producer and anything I take that contains sulphate seem to be turned into H2S by the bacteria in me. I used Magnesium sulphide cream and it made me feel incredibly weak.
    Does anyone know a way round this? If I take the supplements recomended by Leaves might I eventually get over this problem? Or do I need to find a way to eliminate the H2S producing bacteria in order to let sulphates take the right path in my body?
     
  14. leaves

    leaves Senior Member

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    Interesting that,
    Do you have any idea which bacteria?
    I know that rifaximin is used to clear the gut from all bacteria. So that may work? but then you do have to take good probiotics afterwards, naturally.
    A more gentle approach is taking the vsl 3 ds and the kefir.
     
  15. richvank

    richvank Senior Member

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    Hi, Athene.

    As I recall, you wrote in the past that you have been a patient of Dr. de Meirleir. As you may know, he has been involved in developing a urine test for hydrogen sulfide, and he has emphasized the problem of hydrogen sulfide production by dysbiotic bacteria in the gut. I don't know how he treats these bacteria, but perhaps he has a good treatment for them.

    Best regards,

    Rich
     
  16. Rosemary

    Rosemary Senior Member

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    Thanks for this information Rich,
    ...Dr Myhill also uses Prof. De Meirleir's H2S test so I looked at Dr Myhill's suggestions for treatment which I have copied and attached below

    The H2S Test

    Increase in hydrogen sulfide levels can be measured by dint of a simple urine test that looks at hydrogen sulfide spilling over into the urine, and this test has been developed by Prof. De Meirleir in Belgium.

    Treatment of a Positive H2S Test Result

    If one has the wrong bacteria in the upper gut, then H2S could be produced as a result of this fermentation process. So, improving gut function and restoring the normal gut flora will be centrally important to tackling gut fermentation producing hydrogen sulfide. The important issues that must be tackled are as follows:

    Stoneage Diet - the evolutionarily correct diet which encourages growth of friendly bacteria;

    Hypochlorhydria - acid is essential for sterilizing the stomach and upper gut;

    Pancreatic function - essential for quick and efficient digestion of foods so they cannot be fermented downstream.

    Gut dysbiosis - having the wrong bugs, possibly also in the wrong place;

    Probiotics - essential to introduce the friendly bacteria to the gut. Kefir is an excellent cheap source of friendly bacteria.

    However, problems will arise particularly where the immune system no longer recognizes good from bad. That is to say, undesirable bacteria have gained a foothold in the gut and the immune system does not evict them. The immune system seems to accept the status quo, so if these bacterial numbers could be kept low for as long as possible, the hope is that the immune system will eventually relearn good from bad.

    What we need, of course, is an antibiotic which is not absorbed systemically and is specific to those hydrogen sulfide-producing bacteria.

    This could be a prescription drug, or a herbal preparation. Initially, I would suggest rifaximin, which is a non-absorbable antibiotic [passes through stomach and into intestines without being absorbed into the blood stream], widely used for travelers' diarrhea with very few side effects and low risk of antibiotic resistance. It must be taken with high dose actively fermenting probiotics such as Kefir.

    The joy of the urine test for hydrogen sulfide is that we have a way of checking as to whether or not we are making progress with the gut. My view at this stage therefore is to put in place as many of the above interventions as is reasonably possible to do, and take rifaximin 200mg three times daily for three days, then a maintenance dose of 200 mg daily and then re-check a urine test to see if we are making progress.

    With time, new agents will doubtless become available that can be tried.

    It may be that eating foods low in sulfur could be helpful, but sulfur is also essential for normal body biochemistry, and my view is that one should concentrate on gut function to ensure quick and efficient digestion into desirable end products rather than further food avoidance.

    One could go on further to do more detailed analysis of gut flora to see which bacteria are present and, again, I will try to make this test available.** However, my guess is that this will not affect treatment, at least in the early stages when the aim is to restore gut function.

    Professor De Meirleir's treatment regime includes all the above factors, but he believes that heavy metals may also be implicated here because they have a synergistic effect with H2S to make it more toxic.

    Indeed, we know already that mercury vapor from dental amalgam can have a profound effect on gut flora. He suggests that H2S may combine with heavy metals, and the resultant compound distorts proteins to form prions. These prions then distort other normal proteins in what is known as the "rotten apple" effect. This magnifies the underlying poisoning by heavy metals and H2S.

    So, heavy metal detoxification is likely to be an important part of the treatment program.

    http://www.steungroep.nl/index.php/component/content/article/195
    Protea Biopharma Press Conference (slides), London May 28, 2009. Prof K. De Meirleir, Chris Roelant, Marc Fremont.
    See also Lemle MD. "Hypothesis: Chronic fatigue syndrome is caused by dysregulation of hydrogen sulfide metabolism," Medical Hypotheses 2009;72(1):108-9. Epub 2008 Sep 16.
    mdlemle@yahoo.com
     
  17. Athene

    Athene Never give up

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    Hi Rich et al!

    De Meirleir measured the bacteria in my gut a prescribed antibiotics for them. I've been taking them for 6 months with minimal improvement. My son has been on the same treatment and his H2S level was so high that the nurse who did the test (in Meirleir's clinic) specifically came out to tell me the reacgent actually turned black from the vapour before he could even drop the urine into it, and that he had never seen such a high level... it was too high to quantify.
    So I would not say that the antibiotic treatment has exactly been a noteworthy success.

    Rosemary, I think you are right and that this is the key to it all:
    However, problems will arise particularly where the immune system no longer recognizes good from bad. That is to say, undesirable bacteria have gained a foothold in the gut and the immune system does not evict them. The immune system seems to accept the status quo, so if these bacterial numbers could be kept low for as long as possible, the hope is that the immune system will eventually relearn good from bad.

    What to do? Can this be remedied?
     
  18. Athene

    Athene Never give up

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  19. Athene

    Athene Never give up

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    Oh and I nearly forgot, Diesel, Iodine affects the thyroid and alters heart rhythm. It is dangerous, I would steer well clear of it.
     
  20. leaves

    leaves Senior Member

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    everything in moderation, but you do need Iodine, it is an important element!!!
     

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