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A Sad Loss of a Member of Our Community

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Oct 29, 2013.

  1. Freddd

    Freddd Senior Member

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    A woman who suffered terribly for 20 years or so with 21st century mystery disease, with particularly nasty co-morbidities died about a week ago, alone, as so many of us are. She was utterly despondent over her treatment by a doctor who wouldn't even consider listening to her or examine in any way or performing certain tests because she INSISTED that she had the problems we talk about here. Her choice of words were not mine. She used language, common language amongst at least half the people here, to try to talk with a neurologist. She had the most extreme damage to the limbic system, by her responses to nutrients, that I have seen in years of this. The doctor would not even allow her to get that far. He dismissed her, calling her names, right then and there. He would not examine her. He wouldn't make any tests. He wouldn't even let her finish her story. At certain "incorrect" words he cut it off abruptly and sent her packing calling her names. One of those words that shuts doctors off is "detox". I don't know which one(s) he reacted to. She might have used more than a few. He had no concept that she was DEMONSTRATING the physiological psychology caused by the damage, rather than describing it well in a detached scientific fashion. I'm not here to invade her privacy or tell her story so I'll leave it at that. This could have happened to any of us, and has been for decades. He just didn't ever want to see her come back to his office again because she was such a PITA, as I was for 30 years.

    This was probably a preventable death. All he had to do was be willing to listen and then say "I'll see if I can find any studies on it" or something like that, and maybe test for neurotransmitters or anything that might give some clues. He just had to look like he took her seriously. Instead he called it nonsense and called her names for saying it. She has probably been kicked out of as many practices as I have been.

    I had to learn how to talk to doctors in person so I wouldn't immediately be shut out by their language filters. Some of the language we use will get us kicked out of the doctors office. For instance I was expelled from several practices for saying I had severe b12 deficiency symptoms while taking CyCbl since I was insisting on an IMPOSSIBILITY. I got kicked out for denying that I was an alcoholic "with all those typical blood changes". I got kicked out for lying because I had "too many symptoms to be believable". I got kicked out for refusing to accept that typical b12 deficiency neuropathies are really "conversion disorder" and not a real physical problem.

    People using the word "detox" talking about the effects of glutathione, NAC, folic acid, MeCbl, methylfolate etc are pariahs. It will get you kicked out of many offices.

    Be careful what language you use.
    stridor, xchocoholic, L'engle and 8 others like this.
  2. Sea

    Sea Senior Member

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    So sad
  3. Violeta

    Violeta Senior Member

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    Too sad.

    Don't go to doctors.
  4. PennyIA

    PennyIA Senior Member

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    That is really hard to hear. I'm so sorry we've lost someone again from lack of 'understanding'.

    I, too... found many similarities and experiences.

    It took me six years of BEGGING to be tested for B6 toxicity which was declared to be IMPOSSIBLE at the dosage I was taking even though my mother became toxic on the same dosage. I FINALLY convinced someone to test me for it and they were shocked by how high my toxic levels were.

    I got kicked out of one nuerologists office because my B12 test levels were sky high (if they had a toxic range I would have been in it, but it's IMPOSSIBLE to get toxic on cyanocobalamin) AND because (his words) I had all the symptoms of severe B12 deficiency. Which was IMPOSSIBLE. Ergo, he would not see me nor attempt to treat me until I underwent psychiatric testing because it was OBVIOUSLY a psychosomatic illness.

    I still see my Internist for annual exams, but don't trust him with anything more than taking my blood pressure.

    I now save all my health concerns for an Integrative MD who specializes in MTHFR. I've regained so much ground in the last six months that it's not even funny. Even with a mild step-back recently? I'm still 90% better than I was under THEIR treatment (lack of).

    One thing that really ticked me off was all these years of getting told that there was NOTHING wrong with any of my test results. The Integrative MD looked at the exact SAME results and identified at least four or five things that needed further investigation and/or immediate treatment. When I asked him how he could see concerns the other doctors didn't see... he explained a little something to me. The regular doctors are looking for ranges of test results that need IMMEDIATE reaction to prevent death, serious disease, and/or surgery. i.e., the levels have to be SO BAD that they cannot avoid treatment. He, on the other hand... is looking at whether or not my results fell into the OPTIMAL range. If they were sub-optimal then treatment should improve my health. No wonder our medical system is so messed up.

    I have spent years (and still feel like such a beginner) trying to piece together the puzzle and have to say, that I'm so thankful that there are people and resources out there sharing their stories to help me out. If I hadn't had several friendly souls ask me about MTHFR and telling me that it seems like something I should look into, I don't think I would have figured it out.
    Beyond, Sea, rosie26 and 1 other person like this.
  5. Freddd

    Freddd Senior Member

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    Hi Penny,


    I got kicked out of one nuerologists office because my B12 test levels were sky high (if they had a toxic range I would have been in it, but it's IMPOSSIBLE to get toxic on cyanocobalamin) AND because (his words) I had all the symptoms of severe B12 deficiency. Which was IMPOSSIBLE. Ergo, he would not see me nor attempt to treat me until I underwent psychiatric testing because it was OBVIOUSLY a psychosomatic illness.

    Exactly!. Must be psychosomatic, conversion disorder, hypochondria or something not of physical cause. I had that too, and the wanting to medicate me into submission to their version of what how to cure impossible severe b12 deficiency symptoms, Dilantin, valium, antipsychotics, antidepressants, sleep disorder meds, diuretics, asthma meds, allergy meds, anti nausea meds etc. I absolutely refused many of the medications as far as too dangerous or like the antipsychotics and antidepressants, I knew what was wrong. Those were not needed and just add their side effects, bad ones.
  6. leela

    leela Slow But Hopeful

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    The blanking arrogance of these people. It's beyond shameful, it's murderous.
    PennyIA, Beyond and Little Bluestem like this.
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Were you not better off to see the backside of such ignorant MDs? Do you think any of them would have been able to help you if you had talked to them 'right'?
    Violeta likes this.
  8. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Nah they wounldn´t help either. From the dozens of "doctors" I have been none of them have been useful in diagnosing or treating. The most you can get from some is a blood test of DHEA that comes back horribly defficient for your age, but of course (?!) they don´t know why is low, how to treat it or even what DHEA is (true strory). The range of things in which most of allopaths are useful is very limitated, but they were there to remove my tonsils and appendix, whatever their function in the body was :rofl: It seems both are quite important for the immune system.

    I remember the first time I used the term "leaky gut" or "hypothalamus" or even "intestinal flora" in a doctor. I haven´t done it many times after.
    Little Bluestem likes this.
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Most doctors are as useful for people with ME, as using a cheese grater for a condom.... :confused: :p
    PNR2008 and peggy-sue like this.
  10. Red04

    Red04 Senior Member

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    I really don't understand the systematic breakdown in the doctors line of thinking. These doctors are smart. They see hundreds of people they can't cure, yet they continue to do the same thing over and over. Surely they want to help people. Surely they know better. What gives? Whats the motivation behind sticking their head in the sand? or giving out diagnosis that they can't back up with the slightest bit of science?

    Are they that invested in their career that they are willing to prescribe some chemical when they have no idea what's wrong? Does med school beat it out of them? Do they have too many patients?

    I have to think they are genuinely intelligent and caring people. But after dealing with several of the best in Houston, you can't draw that conclusion.
  11. PennyIA

    PennyIA Senior Member

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    It's sooo true. To be honest, two of the doctors I've either met or have read a lot online that are dealing with methylaton are doing it BECAUSE they are looking for ways to help folks. And they found something that is working for some people and they dug deeper to figure out the why.

    I think most of them care, but if the EXPERTS (Ha) claim that our best treatment is antidepressents; they can't afford the malpractice insurance that would result if the don't follow the experts advice and something goes wrong. As long as they follow the standardized treatment, they can't be sued. The minute they step off the path - they are at risk of lawsuits.
    end and peggy-sue like this.
  12. Freddd

    Freddd Senior Member

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    Hi PennyIA,

    It would be nice if I was only the ex-spurts who were done thinking decades ago. Back in the 90s one of my consulting colleagues was on the Ambulatory Care Committee of the Join Commission on Hospital Accreditation. It would take months to agree on the language of a paragraph. Every representative was doing their best not to have their interest group's ox gored. It wasn't about setting the "best" standard of care. Instead it was the care all agree on that didn't threaten anybody's turf. Some groups fought regular hand washing until it became vital for survival. They could in no way change to MeCbl from CyCbl for instance, as too many interest groups ox would be gored by the change, like admitting it wasn't any good in the first place. If we are going to change the care for ourselves it has to be done from the bottom up. Right now we are the write-offs of healthcare. That causes a few docs to dig in and really try to find out what is happening. Most of the rest go by the "book" to be safe and do nothing useful to help us.
    Last edited: Oct 30, 2013
    xchocoholic and PennyIA like this.
  13. caledonia

    caledonia

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    I personally know two women in my area with mysterious symptoms who went to a neurologist. They both got diagnosed with "conversion disorder". One found out she had Lyme. The other lady, I'm still not sure what's wrong with her, but she started taking pregnenolone and that got her out of a wheelchair, so maybe adrenal fatigue, which can be caused by a of stuff.

    My point - stay away from neurologists. They're too arrogant to say "I don't know".

    It's unclear from your original post if the lady died from her disease or from self harm caused by despondancy over the horrible doctor's visit?
  14. Freddd

    Freddd Senior Member

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    Hi Caladonia,

    I was keeping it unclear because I didn't want it to be condemned by some that think that way. She didn't die directly from the disease but it was headed that way pretty fast as a slow starvation caused by uncontrollable GI tract spasming. So despondency and "I just can't take the misery any more". On a mystical forum I participate in somebody asked me how I could tell when I died. I said "That is when the pain shuts off as if with a switch" and nothing from life is anymore my concern. I do readings for and/or guidance of the dead. So things moved into a different part of what I do. She no longer needs nutritional suggestions. I was clearly the last person to talk to her, and judging by the changes in her voice I was hearing but not understanding, I said "It sounds like you need a nap".


    I had urged her to get into a neurologist but I was really thinking of one familiar with physiological psychology and neurotransmitters, maybe at a medical school, and would know what kind of testing might detect the type of limbic system damage she so blatantly had. She said that wasn't possible where she was, only 1 neurologist anywhere near. The other problem is that she was on Medicaid or something like that and it doesn't even pay overhead expenses so most docs won't talk to Medicaid folks.

    I never found a neurologist who can do any good on any B12/folate/carnitine CNS effects or anything that actually heals the neurology. They act like it is impossible, and it is impossible the way they do it. Maybe that is arrogance or studied ignorance.

    A "conversion disorder" diagnosis is a direct surrogate for B12 deficiency. The stocking and glove paresthesias and numbness Freud made so much of are hallmark b12 deficiency symptoms as are the mood and personality changes. Freud wasn't afraid of grouping these "obviously" unrelated items to signify conversion disorder 60 years before pseudo B12 was accidently made and accepted as the real thing.
    Last edited: Oct 30, 2013
  15. caledonia

    caledonia

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    @Freddd That's sad. I was also the last person to talk to a friend of mine, and didn't understand what was going on until after the fact. He was reacting badly to starting a psych med. I didn't understand until I had the same problem a year later. He could have been helped by methylation, had I known more at that time.
  16. Wayne

    Wayne Senior Member

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    Thanks Fredd for posting this; your caution about the words we use is well taken. I would even encourage anybody with ME/CFS to avoid having this diagnosis if it can be prevented. I have a good friend (an RN) who went to all the best specialists she could find for her "mysterious" ailments. The best they could come up with was, "you seem to have some kind of infection that we can't seem to identify", and "you seem to have some sort of autoimmune disorder we can't seem to identify".

    She never used CFS terminology, she was fully on board with their conventional approach, and she ended up with a diagnosis that allowed her to sail through her disability process. To this day, she doesn't seem to have an understanding that her symptoms are virtually identical with pwCFS. --- I've long believed that going to doctors is one of the most dangerous things we will ever do. Fredd's story only strengthens this belief.
    Last edited: Oct 30, 2013
    Beyond, AbbyDear and Sea like this.
  17. roxie60

    roxie60 Senior Member

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    this may not be the right thread to post but it relates to how beat down one gets dealing with doctors. Today I saw the Endo and was told my TSH 1.5/FT4 0.90 are now normal after 6 weeks on Levothyrixine. I was asked if I felt better. I really struggle answering that question anymore. Truth be told during the visit I felt terrible, my lungs are burning, I'm tired, nauseous, no stamina, anxious because she extended he hand for a shake twice (coming/going and I made her aware I already appeared to be getting a cold or respiratory issue (which she reminded me she doesn't deal with that, I would need to see GP, talking down to me again).

    I just stress out anymore when doctors want to shake my hand, god grief their doctors, that has to be the worse parctice, especially if you dont see the doctor wash their hands before greeting you. They have a sign in the waiting room telling people they do not provide toys for children due to risk of germs, why would hand shaking be ok in a doctors office. They just dont get someone who has been sick for so long, catches bugs easily just has no interest in hand shakes. Too rsiky.

    I am aware that my company approved my disability based on the Labs and the last Endo visit. She made it clear she would be reporting to my company that my labs indicate my thyroid is functioning normally and there was no reason related to thyroid that would keep me from working. So I fully expect now my company will once again deny disability (still have not got the first disability check so looks like it will be just one unless the Igenex test shows something).

    But what was so discouraging to my spirit is her saying she doesn't know me that well yet (our second visit) but maybe I should seek psychotherapy to address my symptoms. So once again, it's all in my head, based on labs I should feel better. She will mail in the form I'm certain will end my short lived disability. She also bashed (in a nice voice) my use of supplements, she can't realy say if they maybe are making me feel worse. Really, B12, D3, probiotics, lithium orotate. And a few others that I have not taken recently just cause not sure what is helping or hurtng. She thinks group therapy would be a good thing to pursue. I just wish these doctors would have to live with just one month of these maddening symps and then lets see if they would change their turn (oh and also have to try to get treatment).

    I am really down, I want to be better, I would never choose to lose so much. Psychosomatic my a$$. But all of this is taking an emotional toll. I have lost my confidence in myself and others. I am sorry to hear of this fellow traveler being mistreated and I can relate to how you just want to give up after so many down right abusive attitude by medical people et al. You just want to give up or you start doubting yourself, maybe your are crazy. I just cant imagine being this sick with symptoms all over the place that it is all in ones head. I am so down today, I wish I had not gone to Endo, half expected it to go this way but had to go due to disability. Also she did not want to fill out the forms but told her they based disability on the labs and her notes (whatever they were).
    Beyond likes this.
  18. AbbyDear

    AbbyDear

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    @Freddd Thanks for trying to help. Thanks for the update. So sad it comes to this. I can relate. Wish these drastic events would finally change something - wish there could be some good drawn from them.

    @Wayne I think many doctors act more like big pharma reps - i.e. they try to determine which drugs 'everyone' is deficient in, and (I think) in addition they are controlled by the insurance companies. I think this goes for most of the large organizations. We can only hope for the lone doctor to be an advocate. He/she might actually have some original thought. These are fewer and fewer, probably become extinct someday. What are all the univerisites researching these days ?
    Beyond likes this.
  19. Sea

    Sea Senior Member

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    @roxie60 so sorry to hear what's happening to you. Sadly it is so common
    peggy-sue likes this.
  20. SilverbladeTE

    SilverbladeTE Senior Member

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    As I've said before, my own loathing of the Medical Profession (as the culture stinks) goes back to well before my birth :p
    Mum was nurse, things she saw docs doing, omg, then she got her back injured, they gave her a X ray fluorescing dye that caused severe scarring/harm to her spinal cord
    Psychiatrist said her suffering was just "neurasthenia" !!! (all in her head)
    no, it was first diagnosed as ankylozing spondylitis then arachnoiditis, scarring on the spinal cord, incredibly painful.
    it was probably caused by the X ray dye which they KNEW way back then was bad, leading to crippling spinal problems due to the chemicals.
    they didn't ban it in the UK until 1980s as usual the government lying, "poo-pooing" any complaints and hiding behind their usual scumbag "experts", so what happened then? they shipped the remaining dye off to Africa to be used there!!! :mad:
    Last edited: Oct 31, 2013
    Dmitri and Beyond like this.

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