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Help for very ill bedbound aunt

Discussion in 'General Symptoms' started by anni66, Nov 17, 2017.

  1. anni66

    anni66 mum to ME daughter

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    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 providing any improvement - 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.
     
  2. PatJ

    PatJ far and free I gaze

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    A couple of members here on PR have mentioned the following:

    Fish oil, from Valentijn on PR:
    Chronic headache for 5 years was resolved with regular use of fish oil.

    Basil EO, from Hip on PR:
    One treatment that worked for my own tension headaches is basil essential oil, 10 drops mixed into 15 ml of a carrier oil (eg: baby oil), and then rubbed onto a large area of skin (eg: the legs), where it is absorbed. Then it takes around 12 hours or so to cure the headache. That's what I found. Basil (Ocimum basilicum) is known to help with headaches.

    Too much melatonin can cause problems. Dr. Teitelbaum recommends 0.5mg per night according to this article.

    I use 1mg long acting because it works much better for me than non long-acting. See my signature for more details about what helps with my sleep.
     
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  3. Mary Poppins

    Mary Poppins Immoral Pantsless Poppins

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    You are very kind to help your aunt.

    All the best x
     
    mrquasar, anni66 and Shoshana like this.
  4. aquariusgirl

    aquariusgirl Senior Member

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    anni66 likes this.
  5. aquariusgirl

    aquariusgirl Senior Member

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    There is a support for Myhill patients Facebook group. Not exactly the right name but you’ll find it
     
    anni66 likes this.
  6. Jesse2233

    Jesse2233 Senior Member

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    Is she close to an MS HBOT clinic? It could help depending on her ability to get there
     
    anni66 likes this.
  7. anni66

    anni66 mum to ME daughter

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    Unfortunately travel is a non starter. Stuck in bed. No NHS support. Trying to find something that helps
     
  8. Jesse2233

    Jesse2233 Senior Member

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    Hmm what about just oxygen supplementation? It may or may not have an effect, but Dr Deckoff-Jones has found it helpful for some of her severe patients including herself

    Other than that I would say IVIG but that would likely be difficult to acquire in the UK

    There is also Dr William Weir in London who sometimes prescribes antiretrovirals
     
    anni66 likes this.
  9. anni66

    anni66 mum to ME daughter

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    How would oxygen supplementation work ?
     
  10. anni66

    anni66 mum to ME daughter

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    Sorry @Jesse2233 , what would this entail? Poor wording on my part
     
  11. Jesse2233

    Jesse2233 Senior Member

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    It would mean renting an oxygen concentrator with tubing and a mask and trying it for 20-60m a day to see if it helped. You may need a drs prescription
     
    anni66 likes this.
  12. anni66

    anni66 mum to ME daughter

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    Thanks - will suggest this and see if we can make it work
     
    Jesse2233 likes this.
  13. TenuousGrip

    TenuousGrip Senior Member

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    I'm so sorry.

    Is it definitely ME/CFS ? If I got ill after a trip to India I'd have to wonder whether I may have picked up an exotic bug. Has she had a workup by a top-notch infectious disease doc ?

    Best of luck !
     
    anni66 likes this.
  14. anni66

    anni66 mum to ME daughter

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    As far as i am aware this has been discounted- i don' t know exactly what bloodwork has been done, but will doublecheck this
    . Our problem is getting her anywhere ( or even getting doctor to come to home). I suspect the "top notch" infectious disease docs are in London as this is where UK Ebola patients had specialist treatment.
     

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