1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

Help for bedbound aunt

Discussion in 'Other Symptoms' started by Amw66, Nov 17, 2017.

  1. Amw66

    Amw66 Established Member (Voting Rights)

    Messages:
    63
    Likes Received:
    302
    My aunt is 69 years old. She developed ME shortly after a trip to India, although she has had numerous illnesses suggesting a poorly functioning immune system for years, together with thyroid issues when in her 20s ( partial thyroidectomy), and symptoms of a hypoactive thyroid response now. She feels it may have been the travel vaccinations that tipped immune response over the line and ME followed. She has osteoporosis too.

    She has been bedbound for nearly 2 years and had the ATP profiles test around Easter and this provided a score of 0.11 reflecting how ill she was - she has deteriorated since then.

    Testing for toxins highlighted significant lead presence ( she carries haemochromotosis gene and this may affect lead too - there seems to be a correlation as you age). She cannot detox with DMSA as her body cannot cope with it, even on a reduced dose.( 8 tablets/week)

    She tried the Optimum clinic, and I think she found the meditation/ stress and diet helped for a while. She has been in touch with Dr Myhill following the ATP Profiles and test - the supplement regime is based on feedback.
    Her GP is hopeless ( even with the MEA book)

    She follows the supplement regime below, but this is not working and she is currently getting worse. She has excrutiating permanent headaches and symptoms of POTS. She cannot tolerate B vits - particularly B12 ( went temporarily blind for 20 mins on 2 occasions after taking)
    Multi Mineral Mix 3gm
    Acetyl-L-Carnitine x2ml
    Vitamin C500 X1
    Multi Vitamins &Minerals X1
    Marine Ethyl-EPA 70 x2
    Niacin 500 mg X1
    Poyzyme Forte X1
    Ubiquinol 100 mg x2
    Pregnenolone 25 mg X 1
    Hemp oil x1Tbl spoon
    Melatonin 3mg x2
    Magnesium .5ml injections twice daily

    I feel that there are significant methylation issues ( but I don't know enough about it), and potenitally SNPs that may affect things. I have persuaded her to do a 23 and me test and we await the results.

    My aunt's main carer is her elder sister (71)- they both played a huge part in my life after my parents divorced and it is horrible to see things playing out without the knowledge to help.

    Can anyone suggest any ways forward - we are really at the stage that we will try anything.
     
    Yessica likes this.
  2. Squeezy

    Squeezy Senior Member (Voting Rights)

    Messages:
    251
    Likes Received:
    1,634
    I'm so sorry to hear about your Aunt's declining health. She is lucky to have such a devoted neice.

    Lack of B12 causes serious nerve damage and may well be the cause of her POTS-like symptoms. Mine has been a problem to keep up, and I get dizzy, almost black out, and fall over until it's raised via injection.

    Do you and your Aunts feel that Dr Myhill has enough knowledge and experience to advise you following the 23and me test?
    On a personal note, are you happy with her? I've thought about seeing her myself.

    There's a lot of information about MTHFR mutations and methylation, but I can't get my Biology and Chemistry A Levels head round it! Which is probably a sign I have methylation problems...

    I hope that the 23and me test reveals this to be the issue, and your Aunt is able to take the vital B vitamins and the other supporting nutrients to improve her health.
     
    Wonko, Amw66 and Yessica like this.
  3. Amw66

    Amw66 Established Member (Voting Rights)

    Messages:
    63
    Likes Received:
    302
    Unfortunately she can't tolerate B vits. Metabolism seems very screwed up. Hopefully 23 and me may provide positive routes. Thanks
    @Valentijn do you still have a 23andme database that she could contribute to - as she is severely affected it may have pertinent SNPs?
     
  4. Valentijn

    Valentijn Moderator Staff Member

    Messages:
    1,521
    Likes Received:
    7,164
    Location:
    Netherlands
    I'll PM you with contact info.
     

Share This Page