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  • #31
    I meant we've gotten different measurements and conclusions from different doctors. For example, one doctor (orthopedic) looked at her growth plates and actually said she was almost done growing. Another doctor a week later said that she still had years to grow, looking at the same xrays! Which do you believe?

    Only game in town? There are many alternative games in town that are evidence-based, no? But I suppose we are getting a bit off track of message (metal allergies)...
    Last edited by Still Hoping; 03-12-2011, 05:48 PM.
    Mother of 14 yr old daughter with scoliosis
    Diagnosed at 12th birthday 1/09: 17T 13L
    6/09: 18T 14L Oh God she's increasing
    4/10: 27T 16L My worst nightmare
    7/10: 33T 18L Oh help God!
    7/10: off to CLEAR Institute: We'll see
    10/10: 33T 16L What?
    1/11: 31T 16L 6 months after CLEAR... hhmmm...

    "What a long, strange trip it's been..."

    Comment


    • #32
      still hoping, Thank you for reminding us why we're all here.

      Andrea, I'm sorry for responding with a negatives only post. I think it's an interesting topic and worth learning more about and I should have said that in my post. I would be very interested to hear the results if you choose to pursue this.

      But where I get stuck theoretically is that I would think over time we have learned what metals are harmful to us and have made changes to limit our exposure to them. If a metal allergy is one of the triggers for scoliosis (or maybe just a factor in progression) then why wouldn't the incidence decrease as we make our world safer overall? Or maybe there would have been peaks in incidence during the industrial revolution or something. But as far as I know the statistics have stayed fairly consistent.
      1993, Age 13, 53* Right T Curve w/ Left L compensatory
      2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

      http://livingtwisted.wordpress.com/

      Comment


      • #33
        anecdotals do not constitute proof of anything, except what happened to that one patient...
        i do not see rigorous research with conclusive proof that metal toxicity somehow directly causes scoliosis....none!
        where is the proof...?

        vague vibes and feelings and individual experiences do not constitute proof of anything...
        "mercury madness" seems like an apt title for what was on that website...

        i am not trying to attack anyone...
        i am trying to point out that i expect legitimate research...in all kinds of medicine...traditional AND alternative...before i start seriously considering that there is proof of such claims!

        sorry if that offends anyone...but i think more harm than good has been done over the years with ideas that scare people and turn out to be based on no facts...no proof...no solid research...

        jess
        Last edited by jrnyc; 03-12-2011, 10:56 PM. Reason: splg

        Comment


        • #34
          Originally posted by jrnyc View Post
          anecdotals do not constitute proof of anything, except what happened to that one patient...
          i do not see rigorous research with conclusive proof that metal toxicity somehow directly causes scoliosis....none!
          where is the proof...?

          vague vibes and feelings and individual experiences do not constitute proof of anything...
          "mercury madness" seems like an apt title for what was on that website...

          i am not trying to attack anyone...
          i am trying to point out that i expect legitimate research...in all kinds of medicine...traditional AND alternative...before i start seriously considering that there is proof of such claims!

          sorry if that offends anyone...but i think more harm than good has been done over the years with ideas that scare people and turn out to be based on no facts...no proof...no solid research...

          jess
          Agreed.

          And don't you just love the spectacularity of RFK Jr., a lawyer, making claims in opposition to the VAST consensus of the medical community? Even after all that went down in recent months w.r.t. Hg and autism, he is STILL at it!

          When you listen to his "reasoning," it seems obvious why he went into law and not science.
          Last edited by Pooka1; 03-21-2011, 04:08 PM.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #35
            Originally posted by Still Hoping View Post
            I meant we've gotten different measurements and conclusions from different doctors. For example, one doctor (orthopedic) looked at her growth plates and actually said she was almost done growing. Another doctor a week later said that she still had years to grow, looking at the same xrays! Which do you believe?

            Only game in town? There are many alternative games in town that are evidence-based, no? But I suppose we are getting a bit off track of message (metal allergies)...
            I suspect this is an issue of one doctor having no clue about what he's seeing.
            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
            ---------------------------------------------------------------------------------------------------------------------------------------------------
            Surgery 2/10/93 A/P fusion T4-L3
            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

            Comment


            • #36
              Originally posted by LindaRacine View Post
              I suspect this is an issue of one doctor having no clue about what he's seeing.
              "Suspect" might be too wishy-washy. I suggest we can go further.

              There is one right answer to those who know which measures are most accurate and what to look for as I understand this growth plate game.

              If the opinions are all over the board then you aren't dealing with folks who know this game FULL STOP.
              Sharon, mother of identical twin girls with scoliosis

              No island of sanity.

              Question: What do you call alternative medicine that works?
              Answer: Medicine


              "We are all African."

              Comment


              • #37
                Hi Still Hoping,

                Thank you for your kind comments and support. I too was rather taken aback with the reaction to my comments, not because others were sceptical (which is healthy!) but the whole idea was rubbished without any knowledge of the reasoning behind it. Whether we believe individual people's explanation or interpretation of metal allergy and what it could potentially do, it doesn't mean that there is no truth in it. There may not be, but it is beyond doubt that mercury and lead in particular are extremely harmful to the body. Just because it can't actually be proven to be leading to some cases of Scoliosis doesn't mean that it isn't and I would rather keep an open mind in the hope that more research can be done which confirms the connection if there is one. I was particularly interested in the fact that the seas are awash with mercury and fish have high levels of it. Is it a coincidence that dolphin and whale meat sold in Japan have high levels of mercury and both dolphins and whales are now being discovered with Scoliosis? I don't know if that is the reason but it doesn't sound implausible to me.

                I am also amazed that others place so much confidence in the medical profession. I used to think that they would know whatever could be known about any condition but found out the hard way that this just isn't true. I am appalled at the ignorance and flawed understanding of Pernicious Anaemia in particular and the negligence and mis-management of this condition, which has been known about for a long time, is quite shocking. So are the standard tests which are used to diagnosis it - they are deeply flawed and yet no-one seems to want to do anything about it. Even when they are presented with proper scientific reasoning for why the tests are unreliable, it is simply ignored. I speak to people every day with horror stories of how their doctors have treated them, making them much worse and having them on medications which are dangerous and totally unnecessary. It is deeply satisfying to be able to point them in the right direction and see at least some of them recover once they take control of their own treatment, much to the kind of response from their doctors which I have seen here.

                What is the point of making a dental nurse wear protective gloves and mask to handle mercury and then have it sealed into your teeth? Something is very wrong here. If it is considered dangerous for the nurse to have on her hands, why would it be safe in your mouth for the rest of time?

                All I know is that I have had considerable exposure to different heavy metals throughout my life, including childhood vaccines, 16 dental amalgams, a dental brace, a Harrington rod and a titanium plate in my foot. I have many of the symptoms contributed to poisoning and took a nose-dive several days after a vaccination which included mercury. I was also on another medication at the time which would have compounded the effect of the mercury.

                Pharmaceutical companies do not want to do research on any condition which is treated by a natural substance or by the withdrawal of toxins because they can't make any money from it. Acid-suppressant medicines, for example, prevent you being able to absorb nutrients from your food. They cause the very symptoms they are supposed to treat and cause eventual gastric atrophy. I know, as I was on them for a total of 22 years until I made the connection myself and came of them. I improved somewhat but the damage to my stomach was done and I can't absorb any nutrients properly as a result. I know many other people in the same position.

                If you are waiting for medical science to come up with all the answers then you are on a hiding to nothing. It hasn't come up with the reason(s) for Scoliosis either yet we are content to trust them with our care and treatment. There is a 14 year old boy in Scotland who decided to try to help his mother who has MS and eventually came up with the observation that Vitamin D helped her. He is now being taken seriously by other 'experts'. Vitamin D helps your body produce glutathione which gets destroyed by metal toxicity so is this the reason why it is leading to MS? There will be many in the medical profession who will scoff at a young boy's findings but all he knows is that his mother improves when she is given vitamin D. He may not be able to prove it but he knows it is happening.

                Whatever people here may make of what I have posted, I will have this test done. The worst that can happen is that I lose money but I would still gain knowledge that this was not the source of my problems and could continue to search for an answer. On the other hand, if it is the source of my problems I can have the chance of an improved quality of life. Sometimes we have to take chances and sometimes these chances pay unexpected dividends.

                Comment


                • #38
                  Some straight dope on Hg in fillings, etc.

                  http://www.quackwatch.com/search/web...rankby=DEFAULT

                  Mercury is found in the earth's crust and is ubiquitous in the environment. Thus, even without amalgam fillings, everyone has small but measurable blood and urine levels. Amalgam fillings raise these levels slightly, but this has no clinical significance.

                  The legal limit of safe mercury exposure for industrial workers is 50 micrograms per cubic meter of air for 8 hours per day and 50 weeks per year. Exposure at this level will produce urine mercury levels of about 135 micrograms per liter. These levels are much higher than those in the general public but produce no symptoms and are considered safe.
                  Also, chelation therapy is discussed on Quackwatch... emphasis added

                  http://www.quackwatch.com/search/web...rankby=DEFAULT

                  Chelation Therapy: Unproven Claims and Unsound Theories

                  Chelation Therapy:

                  Chelation therapy, as discussed in this article, is a series of intravenous infusions containing disodium EDTA and various other substances. It is sometimes done by swallowing EDTA or other agents in pill form. Proponents claim that EDTA chelation therapy is effective against atherosclerosis and many other serious health problems. Its use is widespread because patients have been led to believe that it is a valid alternative to established medical interventions such as coronary bypass surgery. However, there is no scientific evidence that this is so. It is also used to treat nonexistent "lead poisoning," "mercury poisoning," and other alleged toxic states that practitioners diagnose with tests on blood, urine, and/or hair.
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #39
                    Thimerosal is the mercury additive in vaccines:

                    http://www.ncbi.nlm.nih.gov/pubmed?

                    Thimerosal interacts with the Ca2+ release channel ryanodine receptor from skeletal muscle sarcoplasmic reticulum.

                    The thiol-oxidizing reagent, thimerosal, has been shown to increase the intracellular Ca2+ concentration, to induce Ca2+ spikes in several cell types, and to increase the sensitivity of intracellular Ca2+ stores to inositol 1,4,5-trisphosphate. Ryanodine-sensitive stores have also been implicated in the generation of Ca2+ oscillations induced by the addition of thimerosal. Here we report that micromolar concentrations of thimerosal stimulate Ca2+ release from skeletal muscle sarcoplasmic reticulum vesicles, inhibit high affinity [3H]ryanodine binding, and modify the channel activity of the reconstituted Ca2+ release protein. Thimerosal inhibits ryanodine binding by decreasing the binding capacity (Bmax) but does not affect the binding affinity or the dissociation rate of bound ryanodine. Single channel reconstitution experiments show that thimerosal (100-200 microM) stimulates single channel activity without modifying channel conductance. The thimerosal-stimulated channel is not inhibited by heparin. Furthermore, a Ca(2+)-stimulated channel is first activated and then inhibited in a time-dependent fashion by high concentrations of thimerosal (1 mM). Once inactivated, the channel cannot be reactivated by addition of either Ca2+ or ATP.

                    Comment


                    • #40
                      Originally posted by AndreaM View Post
                      Thimerosal is the mercury additive in vaccines:

                      http://www.ncbi.nlm.nih.gov/pubmed?

                      Thimerosal interacts with the Ca2+ release channel ryanodine receptor from skeletal muscle sarcoplasmic reticulum.

                      The thiol-oxidizing reagent, thimerosal, has been shown to increase the intracellular Ca2+ concentration, to induce Ca2+ spikes in several cell types, and to increase the sensitivity of intracellular Ca2+ stores to inositol 1,4,5-trisphosphate. Ryanodine-sensitive stores have also been implicated in the generation of Ca2+ oscillations induced by the addition of thimerosal. Here we report that micromolar concentrations of thimerosal stimulate Ca2+ release from skeletal muscle sarcoplasmic reticulum vesicles, inhibit high affinity [3H]ryanodine binding, and modify the channel activity of the reconstituted Ca2+ release protein. Thimerosal inhibits ryanodine binding by decreasing the binding capacity (Bmax) but does not affect the binding affinity or the dissociation rate of bound ryanodine. Single channel reconstitution experiments show that thimerosal (100-200 microM) stimulates single channel activity without modifying channel conductance. The thimerosal-stimulated channel is not inhibited by heparin. Furthermore, a Ca(2+)-stimulated channel is first activated and then inhibited in a time-dependent fashion by high concentrations of thimerosal (1 mM). Once inactivated, the channel cannot be reactivated by addition of either Ca2+ or ATP.
                      What is your point? This appears to be an in vitro study at seemingly whacking high [EtHG] (0.1, 0.2 and 1 millimolar!!) that they do not even try to relate to in vivo levels in the abstract at least.

                      In other words, it is possible for everything they found to be true and it STILL be irrelevant to humans.

                      Can I ask you a question? Do you have a legitimate diagnosis? Medical doctors not being able to find a diagnosis often drives rational folks to the occult alternative. I see that as a reason but it not really an excuse.

                      Anyone can claim anything, including things that sound plausible. I do not think the known epidemiology allows for Hg to be a trigger of scoliosis but let's assume it is at least plausible. The burden is on the folks claiming that to prove it. Sometimes something can be disproven from first principles (like homeopathy) but most of the time there is simply no proof or disproof. The likelihood of something doesn't go up simply in the absence of disproof. It may just mean the idea if too wacky for legitimate researchers to test.

                      Good luck.
                      Sharon, mother of identical twin girls with scoliosis

                      No island of sanity.

                      Question: What do you call alternative medicine that works?
                      Answer: Medicine


                      "We are all African."

                      Comment


                      • #41
                        Originally posted by AndreaM View Post
                        Whatever people here may make of what I have posted, I will have this test done. The worst that can happen is that I lose money but I would still gain knowledge that this was not the source of my problems and could continue to search for an answer. On the other hand, if it is the source of my problems I can have the chance of an improved quality of life. Sometimes we have to take chances and sometimes these chances pay unexpected dividends.
                        Good for you! I hope you find the answers you are looking for and some relief. From what you are describing maybe you do have an allergy that is making your condition worse. I think the reason people here get so defensive of any new ideas is that they immediately jump to the conclusion that you think you've found a cure for the curve in your back. But I say anything that might help relieve symptoms is worth doing. You have the right to decide for yourself whether your time and money is worth spending on something unproven and no one else has the right to judge you for it.
                        1993, Age 13, 53* Right T Curve w/ Left L compensatory
                        2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

                        http://livingtwisted.wordpress.com/

                        Comment


                        • #42
                          Fillings and scoliosis.

                          [QUOTE=AndreaM;118320]I have just been told by a Professor that my Scoliosis is almost certainly due to the large amount of dental amalgam fillings I had as a child!

                          Almost certainly????

                          I have heard this before but if you search scientific/ medical sites no studies have been done to show this was true or even suggest a correlation. The problem is that anyone can put anything at all on a web site and it can cause a lot of fear and bad choices.

                          I just had a recent experience about a situation in my home. I was looking for a certain type of contractor. They had a great website with pages of information which was true but when my husband and I wanted to check credentials?----we found the guy was convicted felon!!!

                          Regarding fillings and scoliosis in my case: my 2 siblings and myself were never taken to the dentist until a cavity was so large there was a toothache. This was after any one of us developed scoliosis. My mom also never went to the dentist until her teeth fell out. She had scoliosis too.
                          Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                          Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                          Comment


                          • #43
                            It just occurred to me that I think under a different thread there was discussion of bad reactions to vaccines and I wonder if the reason for the reactions was mercury. If I remember correctly it seemed like many scolis had had a reaction at some point (I did as an infant). Obviously this doesn't prove anything, just thought I'd mention it. But back to my original point, I think they've stopped using mercury in the most common childhood vaccines so you would think you would see a change based on that.
                            1993, Age 13, 53* Right T Curve w/ Left L compensatory
                            2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

                            http://livingtwisted.wordpress.com/

                            Comment


                            • #44
                              Thank you Mehera,

                              I have no way of knowing what this test will reveal, if anything at all. However, neither will I ever know if I don't give it a chance. Scoliosis is only one of my problems. I was on acid-suppressants to protect my stomach from NSAIDs needed for ongoing pain following my fusion. Fifteen years later, I started having shooting pains in my leg and had a TIA shortly after. I was then put on BP meds and from then on never felt well. I was dizzy, had increasing nerve pain, extreme fatigue and stomach issues. Then I began to lose the feeling in that leg and the muscles withered. Next was a gradual and total loss of bowel and bladder function which is permanent. Added to it all was general allergies, muscle cramps and spasms and insomnia. I felt at the point of death when, by chance, I saw a list of the symptoms of Pernicious Anaemia. Since it was exactly describing me, I read up on it and approached my doctor. Despite all the tests being in the low normal ranges, he allowed me to try the injections and the effect was instant and spectacular. After months of terrible pain, especially during the night, it disappeared the night of that first injection. Over the next few days, my energy level began to improve and I stopped falling and banging into furniture and doorways. My BP returned to normal within the week. However, I needed a very high amount of B12 and folic acid to keep stable and fortunately my doctor is one of the few who allowed me to have them. He knows how ill I was and what difference it made to me. I suspect I will always have the results of the nerve damage which is reckoned to be irreversible due to the length of time it has been there but I have some sort of a life back. Then, in December, I had the 'flu jab and within days began to get quite a few symptoms, including general sickness and stomach upset. I have very gradually improved to some extent but my BP is very erratic, even on medication. I do not have any official diagnosis, other than demyelination of my spinal cord, and the evidence of bladder and bowel shutdown and nerve damage to my leg.

                              The fact that I am on B12 and folic acid is consistent with the theory of it helping my glutathione level (which gets destroyed by mercury) and I am wondering if that is why it has been so effective in improving my health. I know I can't do anything about the Scoliosis but if I can even recover sufficiently to be able to stop having to inject into muscle 3 times a week, it will be worth it.

                              Even if was eventually proved that heavy metal allergy was leading to cases of Scoliosis, quite what you would do about it is another matter. Obviously, you can't test the entire population and even if you did you are not going to know which people might go on to develop it and what other factors may have to come into play. So that leaves you only able to respond once the first signs of Scoliosis begin to appear. It would be very interesting to know what the figures would be if everyone in this position was tested for metal allergy as soon as Scoliosis was detected. Would those here who are so dismissive of the whole idea refuse to have their child tested? Imagine perhaps later finding out that you could have halted or reversed the Scoliosis. There are many Scoliotics now in their 40s or 50s who have gone on to have the kind of problems I have. Why should they develop these symptoms if all that was wrong was a physical deformity of their spine? There are of course all the others who don't have Scoliosis but have MS and some unfortunates have both.

                              I don't intend to post again here as I have limited time and would rather use it to help others who are still open to other possible explanations for their health problems. I'm just sorry that others can't at least keep an open mind and see how someone else fares on a new sort of treatment even if they don't feel confident of its relevance.

                              PS - I gather that Thimerosal has been withdrawn from some vaccines but mercury in dental amalgams is still being used, except in Denmark where it was apparently banned because of the controversy.
                              Last edited by AndreaM; 03-13-2011, 03:25 PM.

                              Comment


                              • #45
                                well, post or not post...perhaps you feel threatened by those who question the cause you seek to prove...i think you have started with the cause you seek to be there at the end of your search...and do not want to consider that there is no research for your beliefs....

                                i do NOT look to medicine to have all the answers...they couldn't diagnose my Lyme disease til i was in a wheelchair...i lost faith in doctors long ago...
                                that does not mean i believe every quack web site that challenges traditional medicine...

                                i am sure mercury is not good for the human body!
                                that does NOT mean it causes scoli, or cancer, or every other woe known to man that "mercury madness" folks would like to blame it for!

                                i hope you find the help you seek...no one wants to see people suffer in pain and with miserable afflictions...
                                but that does not mean that mercury causes scoliosis!

                                jess
                                Last edited by jrnyc; 03-13-2011, 03:39 PM.

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