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LCH Langerhan Cell Histiocytosis

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vickylou
vickylou

Hi all

My dauber was diagnosed with diabetes insipidus in January this year. The fact most people, including some medics, doesn’t help.

She started on  dissmopresson (sorry spelling?) and was fine for six weeks. However she started feeling worse, sickness, dizziness and chronic fatigue.

She was admitted to hospital Monday this week. She’s had MRIs, scans, brain scans, numerous special blood tests, medics couldn’t find any reason.

Thankfully her endocrinologist consultant saw her and said from the results of the tests, he was fairly certain she had Langerhan Cell Histiocytosis LCH. Need to have bronchoscopy and bone marrow tests to confirm the diagnosis. Apparently it’s very rare in a 29 year old adult.

I just wondered if there was anyone who has LCH and could maybe share the effects of LCH.

Thank you

0 likes, 1 reply

1 Reply

  • MtViewCatherine
    MtViewCatherine vickylou

    Posted

    Hi Vickylou, I don't have experience with this disease. However, I can offer a different perspective than what you might typically hear.

    There is some evidence pointing to retroviruses in relation to certain illnesses. It might be worth your effort to investigate natural antiviral supplements such as berberine, lysine, grape seed extract, Frankensense, oregano oil. 

    Cant hurt to try. I figure these are fairly harmless in comparison to the treatment options you’ll be offered.

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