Worst experience with Snake Oil

Discussion in 'Fibromyalgia Main Forum' started by vannafeelbettr, Sep 13, 2008.

  1. vannafeelbettr

    vannafeelbettr New Member

    Sorry all! Reposting this thread as I accidentally deleted it as I was replying to simonedb! I'll repost that my worst experince was with MMS. I worked my was up to 7 drops and got deathly ill.

    Simonedb responded that worst snake oil was chiropractor adjustments.

    My response was that chiro was the next thing i had lined up for myself, and i'll keep my fingers crossed that I get a good chiro experience or I may be posting about that as well!!
  2. vannafeelbettr

    vannafeelbettr New Member


    Thank you for passing along the experience with grapeseed extract. For you to be on it 12 years, it must be doing something. It's exciting when something helpful comes along, that does not cost you an arm and a leg. I love reading your posts, because you are so knowledgable, and I greatly appreciate that;)

    Kina, you are so right that the MMS is poison. My husband yelled at me that day I was close to croaking for taking that stuff and begged me to throw it out. It's a shame, the desperate measure we will take just to feel better. It's one thing that it doesn't help you, but to make a person SERIOUSLY ill is quite frankly, inhumane.

    My whole reason for this post is to warn others of the risk of that product, but I would also love to learn of others failed attempts at product "promises" before I am a victim for those particular products as well.

    Many thanks!!!
  3. victoria

    victoria New Member

    Just my 2 cents as to finding 'balance' in things...

    Finding a good chiropractor is as necessary as finding a good doctor. I can find many stories both pro and con about both professions... and every professional has their fans as well as detractors. For me, chiropractic has been very helpful tho I know many have had bad experiences, including my own MIL. Well, I run out of fingers for counting my bad experiences with MDs... but 0 for chiros in my experience. I guess I've been lucky.

    As far as MMS, I know first hand someone close to me it has helped immensely who has had some long term problems/allergies/whatever. I also have seen that it does not work on acute infections first-hand.

    I also know people who die from cancer even tho they get chemo and radiation... and people who live even tho they don't do the 'standard' treatment.

    It's always wise to review and research and talk to as many as one can before one tries something, but even then nothing is guaranteed.

    As one who has had problems using 'tried & true' standard allopathic med as well as alternatives... I recognize that nothing's 100%.

    all the best,

  4. gapsych

    gapsych New Member

    Chiropractors can help lower back pain but according to scientific studies that is about all. Do not go to one who does the muscle testing which is about as helpful as voodoo.

    However, the biggie is never let a chiropractor do any adjustments aboove your shoulders.

    There have been people having strokes after adjustments to the neck. If you want, I can put up a post about that.

    Take care whatever you decide.

  5. victoria

    victoria New Member

    I and many I know have had neck & back adjustments, all for the better. But of course it is wise to proceed cautiously.

    Again, I think it has to do with one's physical condition of course plus the expertise of the practitioner... just as with all doctors or therapists of any kind.

    all the best,
  6. gapsych

    gapsych New Member

    What an interesting experience. Sounds like something from a book!!

    Take care.

  7. acer2000

    acer2000 New Member

    I had a very bad experience with Neurofeedback where it turned out that the practitioner was being totally dishonest about their skills and experience and also not honest about what they were trying to accomplish with it and the risks involved. Subsequent attempts to get help with the problem the neurofeedback caused revealed a significant number of NF practitioners who used the same claims and lacked enough experience to really practice safely and effectively... There are probably honest, skilled, and careful NF providers out there, but I had the misfortune to run into a few that were not...
    [This Message was Edited on 09/14/2008]
  8. gapsych

    gapsych New Member

    What is Neurofeedback?

  9. mbofov

    mbofov Active Member

    Gapsych - I know you think that muscle testing is a crock. Here is my experience with it which I you will read.

    I started getting sick in 1985, felt fluish, tired, sick, stomach felt off. Doctors could find nothing wrong, said maybe Epstein Barr, and that was the end of it. Symptoms would come and go. Periodically I would go back to the doctor, because I felt so sick, I was sure they’d find something wrong, but no go. This went on for about eight years. Eight years of going to the doctors with no help at all.

    Finally, out of desperation, I began to wonder if it was food allergies. I didn’t know who to see about this, and chanced upon a chiropractor in the phone book who advertised nutritional counseling. So I went to see him. He told me what he did, gave me a video to watch on muscle testing and I decided to give it a try. It cost $50. What did I have to lose besides $50? I’d already wasted eight years of my life going to regular doctors.

    So for $50 I let him do muscle testing on me. And within 5 minutes, using the muscle testing, he’d picked up some digestive problems (I forget exactly what, it was 15 years ago). Also using muscle testing, he a determined that I needed collinsonia root and I think choline. I went home, took the pills, and within a few days was feeling better.

    This same scenario repeated itself several times. I got more symptoms, soreness in my upper right abdomen, digestion off. Went to the doctor - nothing. Went to the chiropractor, who found inflamed gallbladder and gave me AF Betafood by Standard Process, which worked miracles. It is such fantastic stuff for the gallbladder.

    Later I had pain in my lower right abdomen, accompanied by a sick feeling, as though I was being poisoned. Again I went to my doctor. He did a barium enema, and found nothing. End of that story. Saw my chiro, and he found a stuck ileocecal valve, which was letting s**t literally back up into my body, poisoning me. The chiro pressed on my lower side gently and used muscle testing to determine when the valve was reclosed, and sure enough within a few hours my symptoms resolved. Eventually I learned to do this myself. I was under severe stress at the time, sharing a house with my estranged husband and this particular symptom stopped once he was out of the house.

    The chiro helped me with other things, all after I first saw regular doctors to no avail.

    So, I think I would be entirely justified in telling people, don’t go to doctors - they’re a crock, - they can’t help you, just as you do with muscle testing. Not one doctor in eight years was able to help me. But of course I don’t say that. Doctors can help a lot with certain things but they also have definite limitations.

    Gapsych, I know you don’t believe that muscle testing works, but I think if you ever tried it you might be pleasantly surprised.

    Like doctors, there are competent and incompetent practitioners of muscle testing. I was very fortunate to happen upon one who was very very good my first time around. Since then I’ve seen a few others with varying results, some good, some not so good, like doctors.

    It’s commonly accepted that doctors can go for years without getting to the root of a patient’s problems. I read once that the average length of time it takes to get diagnosed with celiac disease is between 8 and 11 years (I forget exactly which), during which time the patient is often misdiagnosed as being depressed, given various meds, etc., none of which deal with the real problem. This is a pretty sad state of affairs, to put it mildly.

    Everyone says, go to your doctor, go to your doctor, go to your doctor. But what do you do when the doctor can’t help you? Keep going? For years? How many years? How much money do you pour down the drain (for doctors cost way more than simple chiropractors)? Or maybe you should just try something new, that doesn’t cost too much, that doesn’t have weird or dangerous side effects. I’m glad I did.

  10. acer2000

    acer2000 New Member

    Neurofeedback is a form of biofeedback that attempts to influence brain wave patterns. It is mainly used for ADD/ADHD but it is sometimes also promoted for other things.

    Before I was diagnosed with CFS, my primary care doctor sent me to a psychiatrist to help me with "sleep" issues. I think he thought my symptoms were due to poor sleep, despite my obvious infectious sudden onset.

    In discussing my history with the psychiatrist, I mentioned that since getting sick I had trouble with concentration (not that I couldn't do it, but that I would tire quickly), and I think because of that this psychiatrist made a whole lot of assumptions he shouldn't have about my condition. Instead of doing normal biofeedback with me or another treatment for sleep such as meds, he hooked me up to this neurofeedback type of biofeedback. He basically ignored my whole medical history, the sudden onset of my symptoms, infectious symptoms, etc... from what I can tell. He also claimed there were no reported negative effects from neurofeedback and the worst that would happen is that it would do nothing. Basically "anything it could do was good", and the worst is that it wouldn't do anything.

    Well that turned out to be very untrue, and it had very bad consequences in me. It made my mood very unstable, increased my cognitive problems, etc.. After it was apparent that he had taken me up a creek without the proverbial paddle, the truth came out that he hadn't ever worked with someone like me before and he basically bailed on me. He vehemently denied that he could have caused the problems that he did, and he started blaming me for being a "bad patient" etc... Basically he was trying to skirt responsibility for the fact that he had caused the problem I was then having. He appeared in over his head and I was proof positive that he wasn't honest about the risks. He seemed way more concerned that neurofeedback get a bad reputation as a treatment than for my wellbeing as his patient.

    In retrospect I should have been way more skeptical of this guy. But I trusted the doctor I was seeing at the time, and based on the information I was presented at the time, I really had no reason to think that this psychiatrist was going to behave the way he did or I would react the way I did to his treatment. After this debacle, I have since researched neurofeedback more and found out that yes, it can cause abreactions (even in normal people), and no its never been really proven to be safe or effective in "CFS" - most of the research (what there is out there at all) has been limited to the treatment of ADD/ADHD and sometimes affective disorders - none of which CFS is - and none of which I had.

    There may well be honest neurofeedback people out there that do good work within the domain of their field, but many of the ones I met seemed more concerned with peddling NF and "beating the establishment" (meaning ritalin for ADD, etc..) that they often overlook the fact that they are misrepresenting their therapy's known safety and efficacy outside of a narrow set of patients.

    I would advise others who might run accross neurofeedback who have CFS to be very careful about the claims that are made and the safety of it as a treatment for this disorder.
    [This Message was Edited on 09/14/2008]
    [This Message was Edited on 09/14/2008]
  11. acer2000

    acer2000 New Member

    I was told by my cardiologist that you should not submit yourself to high velocity adjustments in your neck. Apparently there have been reports of people who had strokes following such adjustments. The other adjustments for back pain are supposedly safe. My experience was I did one and I felt more "aligned" (stood up straighter, etc...), but it didn't really do much else. YMMV, however.... I have had friends with back pain get significant releif from it. Of course they didn't have CFS/FMS. I think it depends on the person you go to. How to find someone skilled and honest, I'm not sure. Maybe word of mouth? Certifications?
    [This Message was Edited on 09/14/2008]
  12. mbofov

    mbofov Active Member

    I know, we're kindred souls in some respects. I would have been lost without the muscle testing. Like I said, 8 years of wandering around traditional medicine with no help at all. I did feel lost until I stumbled across the muscle testing. It hasn't cured my CFIDS but it has helped me so much with my adrenals and digestion and detoxing my liver.

    I just realized when I wrote my post above, I was responding to one that Gapsych wrote in which she said to not do muscle testing, that it didn't work. However, that post of hers is no longer up there. It may have been from the previous "snake oil" post which was originally posted which I and some others responded to and then was deleted for some reason.

    c'est la vie --

  13. gapsych

    gapsych New Member

    Thanks for the info. I realized when I started reading it that yes indeed I had heard about it for ADD.

    I have never heard of it being used in any other context. Interesting.

    THanks for the info.
  14. hermitlady

    hermitlady Member

    I went to this Dr for a few months a couple of yrs ago. A friend saw his partner for hormonal issues and was very pleased w her results. Anyway, after a few thousand dollars, I was sicker than ever. Here's what I tried (what I can remember anyway)

    He did do a bunch of bldwk that was good but expensive, ins wouldn't pay a dime.

    I had U.V. blood treatments in his office 2x wk. Also had Hydrogen Peroxide blood treatments thru IV in office 2x wk.

    I had a few IV chelation treatments before I ran out of money.

    I had a pile of supplements for Adrenal support (frozen liquid pig adrenal, yuck) and other things. Very expensive stuff, he was selling it at the office, but you could buy comparable stuff elsewhere.

    I went on a yeast free diet. That did help w my low blood sugar dips thru out the day (if I don't eat frequently this happens a lot)

    I haven't really heard of anyone else doing the UV and Peroxide blood treatments. I think it made me feel worse due to herxing. I had to drive an hour and a half to get there, I just couldn't safely drive that distance anymore either cuz I got so sick.

    Dr OD'd me on Armour Thyroid and I discovered a couple of months after quitting treatment w him that I had developed a goiter on my thyroid. That just about sent me over the edge. I felt I had really been scammed, I had really trusted and liked this Dr!