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Thread: Scoliosis & Heavy Metal Allergy

  1. #76
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    gee, that's what it sounded like to me, Linda

    jess

  2. #77
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    I am really disappointed with the way visitors to this website are treated. Disagree with what I've posted if you wish but to be personally rude to posters is not what I would have expected, especially when some of it is coming from a Moderator.

    I will still post the result of the toxicity test because I said I would for the sake of those who are interested enough to read it, but that will be my last contribution to the website. I wonder how many others have been put off contributing to the forum after reading some of the comments above.

    Shame really, the website has the potential to help a lot of people with Scoliosis but I would no longer point people in its direction. I really hope that in my efforts to help people with other health problems that I would never treat a poster in the way I have been treated regardless of what I thought of their posting. I don't take the comments personally as I don't think it would matter who had posted the information. I just wish those who think this is an acceptable way to respond to someone who was only sharing information would try to see it from the other side of the fence.

    It really isn't nice or necessary.

  3. #78
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    Quote Originally Posted by AndreaM View Post
    From what I can gather, it is only likely to affect those who have a sensitivity towards heavy metals, however, out of interest, did you have all the usual childhood vaccines, some of which until more recently contained Thimerosal?

    I now have my own doctor's cooperation to take the blood sample required for this test (which I actually ordered from a different website than the one to which I referred earlier) and am just waiting for it to arrive in the post.

    It will be nice to know one way or the other.
    Yep, I had all the normal vacines of my era--and I'm now 48.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  4. #79
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    Quote Originally Posted by AndreaM View Post
    I am really disappointed with the way visitors to this website are treated. Disagree with what I've posted if you wish but to be personally rude to posters is not what I would have expected, especially when some of it is coming from a Moderator.

    I will still post the result of the toxicity test because I said I would for the sake of those who are interested enough to read it, but that will be my last contribution to the website. I wonder how many others have been put off contributing to the forum after reading some of the comments above.

    Shame really, the website has the potential to help a lot of people with Scoliosis but I would no longer point people in its direction. I really hope that in my efforts to help people with other health problems that I would never treat a poster in the way I have been treated regardless of what I thought of their posting. I don't take the comments personally as I don't think it would matter who had posted the information. I just wish those who think this is an acceptable way to respond to someone who was only sharing information would try to see it from the other side of the fence.

    It really isn't nice or necessary.
    I agree 100%. It's baffling.
    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/

  5. #80
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    Quote Originally Posted by mehera View Post
    I agree 100%. It's baffling.
    That's about as baffling as every poll I have ever seen has almost half the US claiming the earth is a few thousands years old.

    Some things that appear baffling sometimes in fact have straightforward answers. The problem is folks don't want to hear those answers, not that there are no answers.

    In AndreaM's case, I think she is at the end of her rope and trying anything no matter how alternative. I am not clear why she doesn't get new tests to see if some diagnosis can be supported.

    What is truly baffling is how she doesn't seem to have much pain from the L5-S1 disc after ~25 years of an H-rod fusion to L5. Just from my cursory reading, I suggest that might be unique and should be a case study in some top-shelf journal. She is perhaps the only person ever to have a fusion to L5 who doesn't need an extension to pelvis. If they can figure out why that is, maybe it can help others.
    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."

  6. #81
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    Quote Originally Posted by Pooka1 View Post
    Some things that appear baffling sometimes in fact have straightforward answers. The problem is folks don't want to hear those answers, not that there are no answers.
    So you have an answer why a moderator would roll her eyes at a member? I would love to know. I won't pretend to know what is causing so much trouble for AndreaM but I do hope she gets some answers or at least relief somehow. And I hope everyone can play nice enough that she sticks around to share any findings.
    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/

  7. #82
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    Quote Originally Posted by AndreaM View Post
    I am really disappointed with the way visitors to this website are treated. Disagree with what I've posted if you wish but to be personally rude to posters is not what I would have expected, especially when some of it is coming from a Moderator.

    I will still post the result of the toxicity test because I said I would for the sake of those who are interested enough to read it, but that will be my last contribution to the website. I wonder how many others have been put off contributing to the forum after reading some of the comments above.

    Shame really, the website has the potential to help a lot of people with Scoliosis but I would no longer point people in its direction. I really hope that in my efforts to help people with other health problems that I would never treat a poster in the way I have been treated regardless of what I thought of their posting. I don't take the comments personally as I don't think it would matter who had posted the information. I just wish those who think this is an acceptable way to respond to someone who was only sharing information would try to see it from the other side of the fence.

    It really isn't nice or necessary.
    Hi Andrea...

    I apologize for being insensitive. I could have been far more careful with my words.

    I can almost guarantee that someone will find something abnormal in the tests you'll be paying your funds out for, but they will be totally meaningless in terms of knowing that they have even an iota of effect on your scoliosis.

    --Linda
    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

  8. #83
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    The particular modality AndreaM is pursuing is listed on Quackwatch.

    I don't know what the appropriate response to pseudoscientific scams is supposed to be. Maybe rolling eyes is effective at getting folks to start making sense and acknowledge that science is the only game in town. I don't know what it is going to take. I am just saying the US populace is poorly prepared to sort out science from pseudoscience and it shows. The BBB can only do so much to protect folks from themselves.

    There is a real problem with folks going to mainstream doctors and not getting a diagnosis. It is bad enough to be sick. Not having a diagnosis only compounds the situation. The rational response to that situation is to keep looking for someone who might know, similar to the situation on that show, "Mystery Diagnosis." It is NOT going to help to go for a treatment that is listed on Quackwatch.

    Just my opinion.
    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."

  9. #84
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    I just want to make it clear that I have never had any issue with people rejecting the idea that mercury toxicity might be responsible for some instances of scoliosis. Neither have I any objection to others asking for explanations why I am going down the road I am. I did not at any stage claim that this was beyond doubt - all I did was state my own reasons for believing that there may be some relevance in this when applied to my own particular and complex case and the only way to find out was to have the appropriate test. I don't think this justifies 'rolled eyes' or comments about 'space aliens causing scoliosis'.

    I personally do not feel that the likelihood of heavy metal toxicity is a ridiculous notion but others are free to differ. What they are not free to do is publicly ridicule someone on a 'support' forum who broaches the subject in a calm and reasonable manner and who was looking only to offer information for others to make of it what they will. It was that alone which offended me - not differences of opinion.

    I also confirm that I am not at the end of my tether. I have had as many tests as it is possible to have and accept the way things are with my health. However, to reject out of hand a possible explanation without giving it a chance is, to my mind, foolish as it could potentially lead to an improved quality of life. I don't really care if any of this appears on 'Quackwatch'. They are not the authority by which I live my life or take my understanding. I prefer to use a mixture of scientific research, other people's and my own individual experiences (even when they fly in the face of such research) and a degree of common sense and logic. In this particular instance, heavy metal allergy fits comfortably with my own sense of logic and understanding. Whether or not it applies to me has yet to be determined.

    I hope that, if nothing else, this thread will lead to a more courteous environment for people to share ideas and experiences.

  10. #85
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    Andrea,
    I sincerely hope that you can get to the bottom of this. Your post on another thread about PA has helped me with a dear friend of mine that has B12 deficiency and a high rheumatoid factor. I was able to come up with some questions for her to ask her doctor based on that thread. Please don't think that posting your ideas is useless. I think that others "roll eyes" because they believe that heavy metal poisoning in and of itself would have to be extremely high amounts of metals to lead to anything. That really hasn't been the truth for lead. There are many, many sick children from living in old houses with lead based paint on the walls. It's saddening. I also think that many are missing the point that you are speaking of "allergies", not just poisoning. Overall, your sickness may be caused by something like that. It's likely that your scoliosis wasn't caused by that since you had it before you became ill. If you do have metal allergies, may I ask if you still have instrumentation in your spine or did they remove it? That could make the difference right there. I know you have had your feelings hurt, but you might want to take Pooka1's advice and contact the show directors of "Mystery Diagnosis". Maybe they could put you in touch with a new specialist that can take a fresh look at everything. Sometimes when we have a problem, our local doctor's tend to look inside the box, so to speak. A fresh pair of eyes may be just what you need. In any case, please let us know what you find out.

  11. #86
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    Rohrer,

    I have no metal in my spine.

    I know full well that nothing can cure my scoliosis and am not pursuing this test for that reason. It is only in the hope of improving my general health which has taken a battering by something else and the symptoms of exposure to mercury do match what I have been experiencing for many years. That alone is the reason for considering this explanation for my ongoing problems.

    I will update this thread as I have promised to do but I feel it is appropriate to let others know that I have notified the NSF of my disgust at the way in which my posts were responded to by a few members. This is no way to run a forum which is supposed to be there to offer support to people with any serious medical condition.

  12. #87
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    You are not the only one who feels this way. I have heard others leave the forum for this very reason. I have almost done it myself. I try to overlook those types of statements, but like many they do hurt even if it is coming from strangers. Some people feel more at ease talking this way when they are not face-to-face with a person. Please know that you are not alone here. I know that Linda is rough around the edges and I was really shocked, to say the least, when I first joined the forum and saw some of the things that were going on. But in Linda's defense, she does contribute a lot of good information and has had some really good suggestions when you get past the prickles. I have learned that there are certain topics that you just don't bring up or you will get attacked. That's just the way some people are. Please don't leave, there is a lot of good information here, and there ARE supportive and caring people, too. That withstanding, maybe there are other forums more specific to your current condition that would be more supportive of you, since scoliosis isn't your main problem at this time. Like I said before, your other posts were extremely helpful, especially for my friend.

  13. #88
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    i had a friend who was in very poor health...it started with untreated Lyme diseae, and went downhill from there...he ended up with cardiac problems...
    he is no longer with us...
    at one point, having tried most everything, he had all his fillings removed...made absolutely zero difference, and he was sorry he wasted the money...

    i just think it is such a shame when people waste time and money on treatments that make no difference, except to their pocket books...

    that said, it is a free country....people are free to seek whatever they want to...apricot pit tx for cancer, if they so choose!

    i got caught up once, too...i went to Mexico for a treatment that, in my saner moments, i never would have considered....though 2 acclaimed doctors told us to try it!
    desperate times make for desperate people....
    it is sad that some take advantage of that!

    jess

  14. #89
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    Keep Visiting

    It is not for someone else to say whether you wasted your money on a treatment. Look, there is no cure. Even if you spent money on some alternative treatment & it didn't work, it still does not necessarily mean that you wasted your money!! How insulting! This website IS here to offer support to people with a very serious medical condition. In a sensitive state, it can be very hurtful for people to hear blunt comments. Good luck, and please, don't quit us here!
    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..."

  15. #90
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    that was not an insult..
    apparently you dont believe in free speech...
    it is called an OPINION
    people are allowed to have them!
    and express them!

    people who believe in alternative treatments need to grow thicker skin!
    not everyone will agree with them
    it is called America!
    and my friend John who had his fillings removed, personally told everyone he wasted his money!

    i wasted my money...so that is what i said...
    and i personally think pursuing metal allergy is a waste of money!

    that is MY opinion..
    you can have your own...and i won't tell you not to!

    jess

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