Thanks for writing. Yes, I'm very familiar with Jeffries. But my daughter started to have life threatening GI haemorrhages in 2011, requiring transfusions, and the source of th bleed in GI tract has not been located to date. One doctor told me the hydrocortisone could have done this. I don't know. Th CFS doctors follow Jeffries. But she is exhibiting some symptoms of osteoporosis at such a young age. So, I don't know.
It has not made my daughter functional. She's housebound, bed bound, always feeling sick, flu feeling, malasise, low BP, the whole list...and nothing has brought relief. She's worse without the hydrocortisone, I guess. Totally flat out.
I sure hope this horrific illness gets addressed soon.
I hope so too, it sounds horrible what she's going through.
Osteoporosis is one of the markers I have to watch out for with my long term Hydrocortison supplement so that seems to imply indeed that your daughter is on too high a dose. And it is not bringing a cure, how frustrating, since what you describe sounds so cortisol-related.
I'm sure you have looked into Aldosterone supplementation in combination with Cortisol. Aldosterone = Florinef = solely for BP
She doesn't take any herbal supplements that agitate the adrenals such as Ashwagandra or Echineaforce?
I found relief by eliminating all stressors from life ("silly stressors" such as negative people, noises, warm showers, ambition to shower more than once a week, eating nuts, watching news, eating the egg whites)
And helping the body by eating gelatineous foods (chicken stock; fish jelly; gelatine). Gelatine is easily absorbed. It's basically what cells in labs get fed.
And helping the lymph system by stretching and yawning. All while lying in bed, just like a lazy dog/
would do. Nothing fancy or tiring.
Just breathing and yawning and stretching like a lazy animal helps the lymph system eliminate waste. It was the thing I had to do before I was able to lift my head.
and, lastly, making the stomach acid more sour. Taking HCL pills with every meal or whenever feeling nauseous. Or drinking diluted lemon juice.
This takes away nausea and gets bile flowing, which is a major waste eliminator. Cortisol usually makes the stomach acidity and it takes a lot of energy. With HCL pills you ease up on that demand on the body. I'm in recovery and I'm still on the HCL pills, even with HC supplementation.
I so hope the best for you and your daughter.