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Mitochondrial tests and treatments

Discussion in 'General Treatment' started by Dr.Patient, Jun 22, 2014.

  1. SOC

    SOC Senior Member

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    5-10 years is a long time to be sick and housebound. How is one expected to earn a living, maintain a social life, take care of the house/yard/vehicles, or raise children in that condition? I'm not giving up that much of my life on the off-chance that I'll recover from chronic infections, immune dysfunction, and a myriad of other measurable abnormalities just by waiting it out.
     
    justy, Valentijn, NK17 and 1 other person like this.
  2. SOC

    SOC Senior Member

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    Exactly. This is why many of us encourage patients to try to see one of the top ME/CFS specialists as soon as possible.

    There are too many ignorant doctors who either mistreat or leave patients with no medical choices. Who is surprised that patients bumble around trying unconventional treatments in that situation? No doctor in my community had a clue who the doctors are who actually treat this illness, or even tried to help me find one. I was left completely out in the cold, with no knowledge of the medical world to help me find a good specialist. If it weren't for Phoenix Rising, I'd still be lying in bed staring out the window as my entire life experience. That, or I'd have killed myself by now.
     
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  3. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Agree with seeing a CFS specialist, doing noninvasive tests if possible, and avoiding irreversible treatments - and waiting it out. Patients should know that if there was a treatment for this condition, it would have been out there a long time ago.
     
    catly likes this.
  4. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    It makes me so angry that physicians do not know what this is, or know any CFS specialists, or claim that they know what CFS is when they don't have a f$@+ clue what this is.
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    After some pretty thorough testing to see what is going on where, a good ME/CFS specialist can often put together an individualized protocol that can significantly improve symptoms and function. That's my experience anyway.

    Sushi
     
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  6. SOC

    SOC Senior Member

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    I generally agree. However, while there is no cure out there, there are quite a few treatments which can significantly improve quality of life -- pathogen treatments, OI treatments, immune treatments, pain treatments, sleep treatments, and probably others I'm not remembering at the moment. Those treatments ARE known and out there. Until mainstream medicine catches up with current knowledge of the illness, however, those treatments will not be readily available. So we're dependent on those doctors who are up-to-date with the current state of knowledge of the illness... and there aren't many of them.

    Four and a half years ago my daughter was so sick she was about to drop out of college. Today, after treatments from ME/CFS specialists, she's in graduate school in engineering, engaged to be married, and living a relatively normal life. Is she cured of ME? Nope. Do I think we should have not treated her and waited to see if she'd get better in 5-10 years? Absolutely not. Right now we have no cure. Quality of life improvements are all we have, but they can make a HUGE difference. Ask my daughter any day -- would she rather be sitting at home with no education, no job, and no friends waiting for the cure, or living a relatively normal life with a bright future? I imagine we can all guess what she'll say.
     
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  7. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Agree with Sushi and SOC that function can be improved in some patients, by all means, we should try to do that. A line should be drawn with fringe doctors and fringe treatments, however. In my personal opinion, SOC, your daughter got better spontaneously with time, although the treatments helped her with her functioning, I believe that there is nothing in those treatments that would have returned her to this level.
     
  8. SOC

    SOC Senior Member

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    Based on what do you draw that conclusion?

    You don't know what lab tests she had, or what the results were, or how those lab results changed with treatment. You don't know what treatments she received or how she responded to those treatments. You never even saw her or talked to her to know anything about her condition before, during, or after treatment. Just how do you think you can make such a statement based on absolutely no information whatsoever?

    Multiple doctors who know a lot more about ME/CFS than you do disagree with your conclusion. Their analyses are based on test results, not unfounded speculation. I think most people would find their conclusions based on science, more accurate than yours based on absolutely nothing.
     
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  9. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    My theory is based on my returning to 100 percent normal after 8 months of CFS, with no specific treatments. Then relapsing due to returning to physical exercise thereafter. And now seeing a tiny bit of improvement, again with no CFS-specific treatments. Also, having read about three people, again spontaneous improvements with no radical treatments.

    Perhaps you could share your daughter's specific protocols for the benefit of others, maybe?
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A lot of us here have ME--not CFS--and this is quite a different beast. ME patients rarely improve without treatment. In fact some ME specialists and researchers have charted a slow progression of this illness, over time--if untreated. They have also charted improvement in direct response to treatment is matched to the results of lab tests.

    You might find the series of videos ME/CFS Alert by Llewellyn King very interesting and informative. He has interviewed most of the specialists in the world on their research finding and treatment experiences in treating this illness. They are over 50 short video interviews (in different threads) all posted on this website and collectively there is a huge amount of knowledge and experience.

    SOC and hers daughter have ME and SOC has posted about their treatment extensively. A quick search will bring these posts up.

    Sushi
     
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  11. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @SDSue Wow, thank you for the detailed explanation and I will definitely be holding off on the glutathione IV until I get more info and see the CFS specialist in two weeks. I see my ND tomorrow and actually decided to hold off on any new treatments until after my trip to the specialty clinic. I take liposomal (liquid) gluathione daily with no problems but not sure how this compares to the IV version. I have never done 23andme, or any genetic testing, and that is one of the topics that still baffles me when I read posts about it.

    Thank your for explaning the "citrate synthase" and when you did the mito function test, was it a blood test or something else? Also, did the doctor give you the IV glutathione as a treatment based on the results of your citrate synthase/mito test or were they not connected? Was any other treatment recommended to you?

    I am so sorry you had that experience and then had to crawl through the airport to get home. My heart goes out to you and thank you again for sharing it.
     
  12. lansbergen

    lansbergen Senior Member

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    I got to the dying state with no treatment. Then I started doing what I had wanted to do for a long time but put it off because I was warned by many ( among them the inventor of that med) of the danger. The choice between dying doing nothing or try something that might kill me was not difficult. My gamble payed off. It was the turning point from getting worse and worse to slow improvement.

    Had I started it in the beginning I would not have become so bad.
     
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  13. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Dr.Patient, Can you share what caused your ME/CFS (was it a virus or another cause?) and also what symptoms you had? If you shared this in another post and I missed it, I apologize. I have not heard of someone spontaneusly getting better from ME/CFS in eight months and am very curious to learn more about your experience.

    I tend to use the word "CFS" because this seems to be the common term in the United States and the term that three doctors (non-specialists) told me is my diagnosis. I know that "ME" seems to be the term used in Europe and outside of the U.S. and often I see the terms combined. Here in the U.S., even if a doctor had no knowledge of the disease, they at least know the term "CFS" (no matter how misguided they may be.)

    But if I used the term "ME" to the average American doctor, they would look at me like I was an alien with two heads. So that is why I used the term CFS. But regardless of the name, I have not heard of anyone spontaneously getting better in eight months with no treatment. Believe me, I wish it were true so I could get back to my life.
     
    ahimsa likes this.
  14. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @SOC, wow, I did not know any of that re: your daughter and was not on the board back when you posted her treatment details. I am thrilled for her improvement and will do a google site search to find out what she did. God bless her and that is awesome!
     
    Last edited: Jul 1, 2014
  15. knackers323

    knackers323 Senior Member

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    Can I ask what that med is?
     
  16. lansbergen

    lansbergen Senior Member

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  17. SDSue

    SDSue Florida

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    Thank you Ginger.

    Two different docs were involved. The glutathione doc based the IV treatment on clinical findings, as labs had not yet been returned. He diagnosed me with "CFIDS". His treatment was limited to his clinic's expensive (and worthless) nutraceuticals.
    A mito specialist (another bad experience) ordered and interpreted the buccal swab for citrate synthase.

    I hate for you to base your decision on my experience, but until we find out why some of us react so poorly, I understand your caution. If you do choose IV, my advice would be low and slow!

    Many of these "CF" clinics are able to sell their potions and get reasonable results with chronic fatigue patients, as those conditions often do improve with time regardless of what is done. It reminds me of warts, which ancient Chinese call the "1.000 day curse". The internet is filled with people's "cures", which are often nothing more than coincidental with the wart virus running it's1,000 day course.

    Those of us with ME are a different animal altogether. ME doesn't "run it's course". I'm with @SOC - without PR and a bonafide ME doctor, I too might have offed myself. Hope is a beautiful thing. So is effective treatment!
     
  18. SOC

    SOC Senior Member

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    Let me see......

    My daughter had mild ME for 5 years with no treatment and not an iota of improvement.... not consistent with your theory.

    Then, for the next year she became more and more ill until she was very sick and unable to continue in college.... very much not consistent with your theory that she would recover over time without treatment.

    At that point we got her under the care of some top ME/CFS specialists who treated her with conventional medicine based on the results of laboratory tests showing a number of abnormalities including immune dysfunction, multiple chronic infections, dysautonomia, and hypothyroid -- a pretty typical set of abnormalities in ME. Then she began to recover and eventually returned to near-normal function. She is not cured. She still has to take medications, but she lives a relatively normal life for a young adult.

    I had ME for 6 years without treatment. I declined for those 6 years from mild until I was severe and bedbound,... very much not consistent with your theory that I would improve over time without treatment.

    At that point I, too, got under the care of top ME/CFS specialists who found multiple abnormalities and treated them with conventional medicine. I have improved from bedbound, unable to even read a book, to largely housebound, able to drive, tutor part-time, and do light housework -- a huge improvement. I'm not cured, either, but the life I live now is vastly better than the bedbound-staring-out-the-window non-life I had with no treatment.

    Perhaps your theory based on the experience of one person who had continually improving "CFS" for a mere 8 months does not apply to people who have had the serious neuroimmune illness ME/CFS for years.

    For other patients to know whether your theory based on your (n=1) study and resulting advice to "...if at all possible, friends, leave your bodies alone to heal" applies to their health situation, it is important to be able to compare your illness to that of other patients. What immune dysfunctions do you have? Which chronic infections are you battling? What kind of pain are you struggling with? In what way were the results of your exercise testing abnormal? How much cognitive dysfunction are you dealing with? Do you have dysautonomia? Do you have hypothyroid or other endocrine dysfunctions?

    Perhaps you are confusing the symptom "chronic fatigue" which can be caused by many conditions some of which may resolve over time without treatment with the neuroimmune illness ME/CFS which rarely, if ever, resolves spontaneously.
    "Reading it somewhere" is not scientific evidence. I have read about people abducted by aliens, but I don't accept their claims as truth without some scientific evidence to back it up.

    Do you know with any certainty that those people even had ME/CFS? Were those people diagnosed by knowledgeable ME/CFS doctors according to the CCC or ICC? What abnormal lab testing did they have? How did those lab results change over time?
    I have written extensively here at PR about my (and my daughter's) treatment for the benefit of our fellow patients. If you search, you will find it.
     
    Last edited: Jul 1, 2014
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  19. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I think you completely misunderstood me here. People should get checked for and treated for anything that conventional medicine can help with! We do know that some patients improve, some stay the same, and some decline.
     
  20. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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