Tuesday 16 June 2015

Have we become our own experts

  1. Catseye said:
    1. One thing that has helped me greatly is oil of oregano. I have watched the yeast and bad bacteria dwindle in numbers over time from using oil of oregano. I was able to see the progress on my stool analysis tests which measure levels of yeast and bacteria. I know I "cured" my candida with oil of oregano because I saw it happen. I guess I could make my CDSA tests available online for everyone to see but what would be the point? For those who believe in alternative methods, no proof is necessary when you get results and for those who don't believe, no proof is enough.
    2. Click to expand...
  2. Hi Catseye,

    Thanks much for all your great writing on this thread. Your references to oil of oregano remind me how it's been on my back burner for years. I think it's time to bring it to the front burner! :)

    Thanks!

    Wayne
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  5. Catseye

    CatseyeSenior Member

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    Hi Wayne!

    Been a long while, huh? I stopped using oil of oregano for awhile after I fixed the dysbiosis and would use it again from time to time if levels of bad bacteria became high on my CDSA. Recently, I haven't bothered with a CDSA just yet but I'm back on OOO. I'm sure the chelation I'm doing is opening up biofilms (I was told that would happen by the autism community, btw) because I began getting abdominal cramping and loose stools. I didn't see any point in spending the money on the CDSA so I just started back on the OOO; the cramps stopped immediately and the stools straightened up somewhat. I'll keep on it for awhile and then do a CDSA. I imagine I'll be doing occasional CDSAs for the rest of my life since they are the only way to monitor the health of the guts/immune system which is what went bad for me in the first place and was my own CFS starting point.
     
  6. slayadragon

    slayadragonSenior Member

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    I don't know what you mean by the word "cure."

    For instance, if people have a peanut allergy, the accepted treatment is to avoid peanuts. (Even if it means limiting one's life to avoid breathing in peanut dust.)

    If people have a latex allergy, the accepted treatment is to avoid latex. If people have a gluten allergy/sensitivity, the accepted treatment is to avoid gluten.

    With CFS, the rules seem to be different. It doesn't seem to matter how many people I can find who say that they have a hyperreactivity to toxic mold and other biotoxins, and that by avoiding it scrupulously they get much better or well.

    The whole idea of having to avoid mold is so anathema that the whole discussion gets shut down, and nobody ever studies it.

    Can you imagine if this is what had happened with peanut or gluten or latex allergies? "There's no way you could be reacting to such small amounts of that stuff. You must be imagining it."

    Of course, now people aren't even objecting to the idea of our little phenomenon of people recovering through extreme avoidance as being made up. The comment they make now is just, "That's not the _cause_ of the illness." Or, "You can't prove it applies to everyone."

    Can you imagine if this is what doctors said about diabetes? "If your body were normal, you'd be able to eat all the sugar you wanted -- so go right ahead."

    (Which is the same thing as doctors like Cheney not encouraging people to look for mold in their environments and move if they find it, now that he's acknowledged that mold indeed is bad for us.)

    Well, anyway. I can't prove that it applies to everyone. Just every single person who's tried it so far.

    There's only so much I can do, with regard to this "cure" thing.

    Best, Lisa
     
  7. richvank

    richvankSenior Member

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    Hi, Lisa.

    Dr. Shoemaker, in response to a question as to whether he would acknowledge that not every case of ME/CFS involved biotoxin illness, said that in his view, no one with ME/CFS can afford to ignore the possibility of biotoxin illness.

    Best regards,

    Rich
     
  8. taniaaust1

    taniaaust1

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    Sve. My family has had more success with alternative medicine then with normal doctor medical. I can offer several examples where it has worked far better the proof is in that it cured the issues.

    My daughter, during birth she caught HPV from me and ended up with laryngeal papillomas http://en.wikipedia.org/wiki/Laryngeal_papillomatosis which in her case would of been fatal if not treated. These grew so fast in her case that she needed surgery every 2-3 mths so her airways werent blocked. She had surgery up to 18 times and each surgery.. she was at risk of getting permanant damage from the surgery eg she could of permanantly lost her ability to speak due to scarring on her voice box from surgery. In the end in despiration as doctors were had given up on saying that surgery was going to fix her, they just rapidly grew back and they couldnt take them out deeper without permanent damage .. so I took her for accupunture.

    Amazingly, 1 treatment of accupunture and those growths never came back, it boosted her immune system and stopped them. Pity I didnt try that in the first place which would of avoided years and years of surgery trauma for a little girl

    - I know this sounds crazy but I had a team of energy healers come into hospital one time when my daughter was in and her sudden recovery on that occassion amazed doctors so much that they were coming in and wanting to know exactly what we'd done. She'd just had surgery and was up and running about the room playing right after it due to the healers like she was completely well and with no pain at all. (as I'd refused for her to have any pain meds, antibiotics etc etc.. doctors were further astounded by her miracle recovery).

    - Another occassion, I discharged her out of hospital against hospital advice (left before they could grab us with thier security team as no way would they have allowed me to take her out). On that occassion things hadnt gone well after surgery (I didnt have any healers on standby on that occassion) and she was developing a bad infection and had started running a sky high fever and was very pale and whole body was limp and on she was partly loosing conciousness (in and out) and so sick she couldnt speak and head just dangled when picked up. I suspected the hospital meds wouldnt work as fast as I could have her treated, so I snuck her out of hospital while the nurses were arranging to a doctor to attend to her (unfortunately hospitals dont allow alternative meds to be used.. so hence I had to remove her from the hospital care).

    Rushed her immediately to an experienced naturopath I knew close by and gave her emergency treatment using herbal medicine along with rescue remedy (rescue remedy a homoeopathic med). She was up and running about and not going in and out of unconscious after about an hr of taking it.. completely well. (she was actually starting to improve within 20-40mins of the medicines, her fever suddenly dropping). (she didnt even have to have antibiotics for her post surgery infection).

    Ive practically lived at hospitals at times over the years due to two children who had major health issues (both needing surgeries) so have seen much bad stuff there and lost all faith in them. Ive learnt to cope with many medical issues home better then what Ive seen in hospital. I can cure ear infections and other things far quicker then doctors can.

    Other examples.
    - I had had long term "constant" dizziness with the ME. No doctor could help it. I went to a chiropractor and he fixed it, it turned out to be due to my neck being slightly out.

    - With the ME I was peeing heaps. Having to get out of bed 5-6 times during the night to pee so it was severely disturbing my sleep. This had been happening for quite a while. A homoeopath fixed that. I only ever get up once a night now for that.

    - my rabbits. I used homoeopathics on them twice on occassions where their condition would of been viewed as hopeless and it fixed them (with rabbits one cant say it is due to the belief a med has helped!!)

    - My youngest child was born disabled and at two and a half years old I got told she'd never be able walk, the hospital gave up on her as her nerves were too bad, frayed spinal cord,she's missing the lower part of her spine (she had no feeling at all in places). I sought alternative care.. chiropractors had us doing cross crawling exercises with her to try to teach her to coordinate her little body etc etc. She is able to walk today and not in a wheelchair due to us not listening to hospital advice. I was never gonna quit on her.

    Nor did she had a surgery procedure that 2 other children with her condition had at that time which would her made her permanently reliant on a urine bag (I wouldnt allow it) both those other children were left with permanent other damage due to it and spent years in hospital with infections and other complications.

    So in my own case Ive come across many things which normal doctor/hospital care didnt fix but we got cured by alternative treatments. (my daughter is still bladder incontient so does wear pads but she did end up gaining control over her bowel functions)

    Anyone who knocks alternative meds without given them a go, may well be missing out on something which may of helped.
    We've had what normal medicine class as miracles... achievements over what they've told us was possible.

    In the case of the HPV, surgery was like offering bandaides, accupunture offered real treatment. Much of normal medical system is like offering bandaides and not treating deeper causes.

    The statistics for death due to normal doctors and their treatments is very high.
     
  9. uni

    uni

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    Catseye,

    How much carbs were you consuming while trying to get rid of leaky gut and dysbiosis? I know this is a significant part of my problem, but maybe also that something else is causing the dysbiosis in the first place.

    My biggest problem with tackling this is that I cannot do low carb. I've tried it in the past and my brain felt like it was being starved, my sympathetic nervous system was ramping up, and I will trouble sleeping. I don't plan on trying to "stick it out" because I know that my body much prefers to have a good amount of carbs to run optimally. Also for digestion, my stools are much better if I eat more carbs. I'm trying to find a balance where I can attack the dysbiosis while not depriving my body of carbs. Pre-CFS, I would have been able to tolerate low carb, but not now - probably due to a dysfunction HPA axis and low cortisol levels, I cannot.

    Do you think there might be something that is causing the leaky gut and dysbiosis in the first place? Its interesting because I know other with signs of dysbiosis. They have smelly farts/stools, acne, or perhaps fungal infections on their toes. But they dont display the gut-brain symptoms that so many people with CFS/ME, autism, and other conditions do.

    Also, how do you target dysbiosis in the colon? I assume that compounds that oil of oregano would be absorbed by the body before it reached the large intestine. Would taking large amounts of bifido bacteria get rid of the bad bacteria in the large intestine?

    THanks
     
  10. svetoslav80

    svetoslav80Senior Member

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    Laryngeal papillomatosis cured by acupuncture is very interesting example, and maybe the first reasonable. I'm glad your daughter is cured.
     
  11. anniekim

    anniekimSenior Member

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    I often see it written that big pharma are only in it to make money. Of course, this is true, but I sometimes think one has to pay for alternative medicine too, it too makes a profit. There is nothing wrong with either doing this, but I just note they are both making money. I would love to consult more alternative practitioners for help with various symptoms etc.., but it's very expensive (living in the UK, our health service is free; however, for people with M.E this is not much help as they have no treatments to offer us apart from the dreaded GET and CBT).

    I had acupuncture for a year, spent over 2000.00, unfortunately for me it didn't work. A young girl who was diagnosed as having M.E and who lives opposite me visited the same guy and now seems fully well three years on which she credits to the acupuncture treatment. I'm not knocking alternative medicine, it's just expensive to keep trying things, taking different supplements..

    I'm glad Tania your daughter benefited so hugely from the acupuncture. As I think others have said on here there is place for both allopathic medicine and alternative medicine.....
     
  12. LBS

    LBSSenior Member

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    I do agree with this. A point to be made, though, is that the way money is made is vastly different between the two. Pharma exists because synthetic compounds are patentable, and therefore the company that develops them gets to become the sole owner and seller of that compound, at least for a while. This is hugely profitable in many cases.

    On the other hand, the only way to make money on a naturally occurring substance is to extract, package and sell it, and you will be competing with dozens of others who are doing the same thing. It's a different kind of playing field, where the stakes are different and the pot of gold at the end of the rainbow is much larger in pharmaceuticals.

    And, yes, without clear guidance, it's a bit of a crap shoot as to what sort of care to get. This is why I am grateful to my primary care doctor, who is trained in western and Chinese methods. I trust that he has the knowledge to best determine which system of medicine is the best fit for my problems and to treat accordingly. But there are plenty of unscrupulous people in alternative medicine (and western medicine, too), just out to fleece people who are desperate. It's always good to approach any treatment methods with a healthy dose of skepticism and to read and learn as much as you can about the methods available, so that you can make choices that are grounded in common sense and the best available evidence.
     
  13. slayadragon

    slayadragonSenior Member

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    That's the first time I heard that quote, Rich. Thanks!

    Best, Lisa
     
  14. anniekim

    anniekimSenior Member

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    Hi Catseye, it's been fascinating reading your healing journey. I'm coming round to the alternative route more and more.

    I was wondering whether you could give your thoughts on why heavy metal poisoning is a problem with people with m.e? What causes it? Is it because people with m.e do not detox well due to methylation problems?

    Many thanks

    Many thanks
     
  15. richvank

    richvankSenior Member

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    Hi, uni.

    I wonder if you have ever tried taking coconut oil. The idea is that coconut oil is about 65% medium chain fatty acids. This category of fatty acids is routed directly to the liver from the gut, rather than going into the lymph system and thence to the circulating blood via the thoracic duct, as the longer-chain fatty acids do. If a person takes a generous helping of coconut oil (a couple of tablespoons, for example), the capacity of the liver to burn the fatty acids is overwhelmed, and the liver converts the excess to ketone bodies (beta hydroxybutyric acid and acetylacetate), and puts them into the circulating blood. Some reaches the brain and is able to cross the blood-brain barrier. The brain is able to use ketones as a secondary energy source to glucose.

    This treatment has been used for epilepsy, cancer, and most recently, Alzheimer's. In these cases, it seems that the benefit of coconut oil is that the ketones go directly into the Krebs cycle, and do not have to pass through the glycolysis pathway and the pyruvate dehydrogenase complex to get into the Krebs cycle, as glucose does. There appears to be a problem with the pyruvate dehydrogenase complex in these disorders. That is usually not true in ME/CFS, but nevertheless ketones can still be used, and may be a good substitute for glucose to feed the brain when a person is on a low-carb diet.

    Of course, this will require good bile function in order to break the coconut oil into small droplets so that lipase can digest it in the gut, but if that is present, it should work.

    Best regards,

    Rich
     
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  16. Catseye

    CatseyeSenior Member

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    Hi Uni,

    I didn't keep track of the number of carbs per day, though my doc said as a rule to stay under 40. I know I couldn't have been under that but he knew what I was eating. It's easier to say what I was eating rather than what I was avoiding. I was eating zucchini, eggs, chicken, raw almonds, pumpkin (high starch, I know, I didn't realize it at the time, I was soooo brain fogged), salads with homemade tahini dressing, Lydia's organic crackers made from raw nuts and veggies and broccoli. Also, lots of soup made with the above veggies along with onion, garlic and bell peppers. And lots of Himalayan crystal salt on everything.

    I was not digesting food properly so my doc had me on lots of digestive enzymes, betaine hcl and a rice protein, multi vitamin/mineral/amino formula called Nutriclear by Biotics Research. I know this stuff really saved my butt. I still use it, I love it. I was using 2 scoops twice a day for a very long time and just that powder alone for the day was 42 grams of carbs. Now I just use one scoop a day as a multi.

    I, too, was also worried about carbs in the beginning of this diet and I told the doc I had severe hypoglycemia and had to eat every couple of hours or at least sip on juice once in awhile. I had been eating lots of brown rice and beans, even in the middle of the night, that's how bad my hypoglycemia was. I even had to use these protein bars at night called Extreme because I couldn't make it through the night with no carbs. Extreme bars are particularly for hypoglycemia, they have some things in them (like corn starch, bad!) that take a long time to break down and so you prevent hypoglcemia. He put me on another supp that saved by butt called Bio-Glycozyme Forte. It's another supp by the same company, you can see their products at their website same name dot com, and it is specifically geared to help blood glucose regulation. I took a couple of these with every meal and within 2 weeks, my severe hypoglycemia was gone. It has B complex, minerals, trace minerals, antioxidants, glandular support and vitamins. I was taking a bunch of supps but these, along with the ADP (oil of oregano) and Nutriclear, helped the most.

    I think what causes LG in the first place is a combination of factors. For me, it was a bad diet almost devoid of green and healthy veggies, use of acid reflux pills like Prilosec which halt production of stomach acid (you need acid to kill the bugs, baddies and pathogens in the food and gut), use of NSAIDs and aspirin for pain (they interfere with proper functioning of the stomach and intestines, I could write a whole article on just that), lots of antibiotics for sinus infections, etc. and too much junky food that is high in sugar and carbs. I also had a severe dairy intolerance though I wasn't aware of it at the time. My sinus issues and persistent hay fever were indicative of a dairy intolerance but I only found that out after it was too late. It caused inflammation throughout my body and that contributes to LG, too. I'm not exactly allergic to dairy, but it makes my immune system hypersensitive and then I become highly sensitive to other allergens like cats and pollen. My real nail in the coffin, though, was hep c. When you already have dysbiosis and you end up with a major infection, you're toast.

    As soon as yeast are given the opportunity, like with antibiotics and high sugar diets, they will take over. My doc explained it to me like this - imagine a hotel where all the rooms are full of bad bacteria and yeast. In the hotel, there is only so much room, and if they are in control of all the rooms, you have to kill them off to make room for the good guys. And that is the hard part. It takes a very loooong time and is tedious. I had asked him if it was possible to just take a powerful pathogen killer and then just take handfuls of probiotics to replace the good stuff. And that's when he explained about the hotel. In the intestine, we have a balance of good and bad guys. It is the job of the good guys (like bifido, etc.) to make some vitamins and enzymes and help digest food but one of their most important functions is to maintain the integrity of the gut lining. If they get pushed aside by the bad guys, or killed off by antibiotics or whatever, once the bad guys take over, you're up the creek. Btw, I have seen an article in pubmed about how the flora balance in the intestines is crucial for the bone marrow's production of immune system components. If anyone wants to see it, I can go through my notes and track it down.

    First, yeast grows out of control because there aren't enough good guys to keep it in check. Incidentally, in AIDS, yeast is the first thing to get out of control, too. And the yeast in the intestines can get particularly nasty, they will put "roots" down into the gut lining and cause even more inflammation, thereby inflaming the pores which are now large enough to let the contents of the intestines seep through. So you end up with undigested food particles (which cause inflammation throughout the body and stress the liver and kidneys) and bad bacteria and yeasts coursing through the bloodstream. If this goes on for a long time, like probably years in my case, then eventually, the liver can't function properly, you lose methylation (thanks to Rich I know all about this now) and then heavy metals pile up and you end up with CFS. And then you have to spend years on google figuring it all out if you want to feel good again and get out of bed! Arggg!

    I think the oil of oregano gets everywhere, because I watched my yeast and bad bacteria levels plunge over time from the CDSA tests. I don't think just taking probiotics, even a good one, will get rid of the bad guys because of the hotel explanation. In the gut lining, that's where all these guys reside, and there is only so much room. Once the bad guys have a foothold, it's extremely difficult to remove them. My doc always said you have to starve them and kill them at the same time.

    I think if most people did the CDSA test, they would find a certain degree of dysbiosis. But somehow, they are able to keep it in check so it doesn't get too out of control. If they get a major infection, though, they will have a much harder time of healing it.

    So are you hypoglycemic? And what carbs are you eating? Can you just switch to veggie carbs and avoid grains and dairy? Once you kill off a good amount of baddies, you'll find your body working better and better as time goes on. You may start out not-so-low carb but you would probably be able to cut out more and more carbs as you go on killing baddies.
     
  17. richvank

    richvankSenior Member

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    Hi, anniekim.

    I'm not Catseye, but would like to butt in and put in my two cents on this question. I think that in some cases heavy metal poisoning can be a primary issue that helps to bring on ME/CFS. I think this is particularly true for people who have inherited certain genomic polymorphisms, such as in the glutathione transferase enzymes, or for people whose glutathione has been somewhat depleted by other causes. These people are not able to detox heavy metals at rates as high as normal, so that if they are exposed, such as by inhaling mercury vapor from amalgam fillings or by eating large fish, for examples, they can accumulate mercury. Over time, this can contribute to the onset of ME/CFS.

    On the other hand, if a person develops ME/CFS from other causes, their glutathione will become depleted, and while they are ill, they will not be able to detox and excrete heavy metals at rates as high as normal. As they are exposed, they will build up larger body burdens of these metals. These metals bind to enzymes in the body, and over time, they inhibit the enzyme function. This can be a barrier to recovery from ME/CFS, because several of these metals bind to sulfur in enzymes, and the sulfur metabolism is what is involved in keeping ME/CFS chronic. If this problem becomes sufficiently severe, it is not possible to lift the methylation cycle block unless the level of the toxic metal is lowered, such as by a chelation treatment. One of the case studies I described in the seminar in Sweden was an 84-year-old lady who had this problem, and Dr. Nathan was able to help her by chelation treatment, which then allowed the methylation protocol to work. The video of the seminar is here, and this case is discussed at the end of he third section:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

    Best regards,

    Rich
     
  18. anniekim

    anniekimSenior Member

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    Hi Rich,

    Thank you for sharing your thoughts on more question, don't mind at all. Good to get lots of info and perspectives.

    When you write
    , is there a test for these certain genomic polymorphisms you mention? Many thanks
     
  19. Dreambirdie

    Dreambirdiework in progress

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    Hi Catseye--Thank you for sharing your story. I have appreciated reading it. Personally, I have not done well with oregano oil, but I have found GSE to be very helpful in controlling candida, as well as certain Chinese herbs from my TCM practitioner.

    I want to add that one of the things that I found most helpful in healing my leaky gut has been L-glutamine. I took 1000 mg 2X/day, one dose before bed, and one dose upon waking, on an empty stomach. The first time I took it I was amazed at how well it cut down the bloating. So I want to add it to the list of good supp's for leaky gut.


    YES, I can surely relate to this!
     
  20. Wayne

    WayneSenior Member

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    Vagus Nerve Connection to Digestion/Immune System

    Hi Uni,

    I suspect there are various reasons people develop leaky gut and/or dysbiosis. I believe there are a number of different ways it can be addressed therapeutically, with some therapies working well for some, but not for others.

    One thing I would mention for consideration of dysbiosis is whether a person's cranial nerves might be impinged or crimped due to a significantly misaligned atlas (uppermost cervical vertebra). I had a major head injury/whiplash as a teenager, and which marked the beginning of my descent into compromised health.

    I went to many doctors/chiropractors over the years, and could only gain marginal relief for short periods of time. I finally came across a procedure called AtlasProfilax, which "repositions" the atlas in a way that doctors and chiropractors are unaware of.

    I've written about this on numerous threads, and don't want to sound like a broken record, but when I had my atlas repositioned, I experienced a lot more nerve energy flowing through my whole GI tract. My digestions improved, my immune system improved, and much more.

    I've come to believe that people can do virtually everything right as far as trying to address dysbiosis, but if the vagus nerve, which supplies nerve energy to the GI tract is compromised, optimal results will not be achieved. AtlasProfilax worked very well for me. I've long suspected it could work very well for others on this board, perhaps especially for those whose onset of CFS began with an accident.

    Also, I've seen various references on research regarding the connection between ME and a compressed brain stem (including cranial nerves). I've always believed this is a topic that is worthy of much more consideration than it's been given.

    Regards, Wayne
     
  21. Catseye

    CatseyeSenior Member

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    Hi anniekim,

    Yes, I think the methylation problem is the point of no return. Once the liver is down and unable to detox and flush out the toxins, they, particularly the metals, end up in places they never should. At any one time, there are between 50,000 and 100,000 different enzymes floating around the human body. Metals interfere with basically everything (receptors, chemical reactions, etc.) and seem to get stuck so they just start to accumulate all over in a random scatter. Our enzyme soup is affected, differently for everyone, and the body starts to try to compensate and it tries to deal with the interference, creating even more of a random scatter of symptoms, but it can't function normally no matter how hard it tries. And it can't get the metals out once they're in even if methylation turns back on.

    I don't know that it would be possible to get methylation to function again if LG is involved unless you take care of the LG first because the poor liver is overwhelmed already. In many of our cases, I think LG is the cause of the methylation problem and in turn, the heavy metals problem.

    So if you had metal fillings, the mercury wasn't being cleared out as it slowly left the tooth, if you ate fish you were storing the metals you got from the fish. Even now, you are getting metals from your food, from your environment - there's no way to get away from them. You are constantly ingesting them and unless you take steps to get the ones out that you couldn't remove before because of methylation problems, you carry them around forever. I had my metal fillings removed, I had lots of them, and I don't eat any fish right now. I'll wait until after chelation to maybe eat fish again. Maybe since methylation returned I have been clearing out new metals but I'm not going to purposely ingest any while I'm chelating, I want this over as soon as possible.
     
  22. Marg

    MargSenior Member

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    I have been reading about Burznski for a long time. He has gone through a lot to continue his work. I seem to remember that his son has gone in practice with him. I don't think that was in the movie.

    The disgusting part is according to what I read and I think it was in the movie you cannot be treated by him until chemo has failed. What ever happened to the home of the brave and the land of the free? Do the people that make these rules think they will never becomne ill, is money more important than health, must be for some.

    I have seen people go through terrible chemo treatments and radiation only to die, cancer not detectable but poisoned. The answer is not cut, burn and poison. I have a good friend going through it all now with breast cancer. I e-mailed the movie to her, she was astounded never knew such things on. I know Susanne Somers said no to chemo the second time. She is well now and has written several books about her journey.
     
  23. Catseye

    CatseyeSenior Member

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    Yes, glutamine! I took tons of that, too. I'm glad you brought it up, Dreambirdie. It's the main amino acid that the body uses to maintain and repair the gut lining. It's tasteless, inexpensive and easy to take so it's a good mention. I took one tsp, about 5 grams, every night and every morning on an empty stomach.
     

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