Hi,
This is Katie's friend. I flew over to take care of her and I've been here for the past month. (Whoever it is who is keeping contact with Kate through emails, I emailed you myself the other day on her email account). I am writing here because she cannot and I don't know where else to turn for help. Her situation is only getting worse.
To begin with, Katie kept up with her 'usual' diet of baby food, pudding cups, chocolate bars and protein shakes made with almond milk (all soy apart from the baby food; no dairy). These were the only things she could tolerate - and when I say tolerate I mean it in the most detached way possible, as she wasn't comfortable eating any of it, just these are the ones that caused her the least discomfort. But recently, her gut discomfort has only got worse, so we've been trying to lay off the soy products in case soy is the reason. Kate has switched to pea protein, but it doesn't have a high calorie content at all, and we're finding ourselves stuck for options. She cannot manage water for the most part, so has been taking coconut water. For a while, she was also taking 60ml of aloe vera mixed in with her drinks.
Over the weeks, we slowly stared to introduce g3, a strong vitamin juice recommended by Dr. Judy Mikovits. We started by adding one teaspoon and have gradually worked our way up to five. However, due to a change in UK law, we have just found out that it's being discontinued and Kate's been pointed towards a different product called JVi which has a multitude of different ingredients. This came as a bit of a shock as she now has a whole new product to get used to.
For the past few days, she hasn't been able to eat much at all. I try to encourage her but she is fully aware as to how dire the situation is and is fighting it with everything she has, so when she says she cannot, she really cannot.
She is not tolerating food on a whole-body level. When she eats, or even drinks water, she begins shaking profusely. She feels poisoned/toxic to an extreme, unbearable level. It affects her breathing, her sinuses, her head, her heart, her general cognitive awareness. Inflammation everywhere goes bananas. She describes the feeling as so intense, it feels like she is about to have a stroke or a fit. All she wants to do is defecate, but there isn't anything inside her and she's not constipated. The more she eats on one particular day (though we are talking very small quantities), the more intense the symptoms get. Her body is screaming at her to not put anything more inside it.
Yet despite this, she does get hungry.. and her actual stomach rumbles and asks for food. It's more a case of
what happens during digestion. She doesn't have problems swallowing, and the actual physical act of eating is fine.
Her problems are not in the stomach, at least not mainly, but rather underneath it. I can only guess potential inflammation of the intestines. Her heart is in trouble too and she frequently reaches a state of tachycardia, related to her POTTS perhaps, but she feels it may be more likely a problem with her left ventricle.
We are in a Catch 22 situation. Everything screams hospital, if only for the tests to find out what is going on, but the exposure and exertion when she is in this state could only make her worse. She cannot afford to crash and get worse. This is the worst she's ever been. She feels like she's dying every day.
A GP just came round to look at her - not the one I asked for who is head of the practice and had seen her before, but a new one... so again, she had to go through the process of explaining what is going on with her. We explained it in great detail and stressed the urgency for a side-room in hospital, because she just cannot tolerate a ward. She spoke about a psych team to 'help with the stress' and deal with the symptoms while she is taking the necessary tests in hospital... which is... frustrating, to say the least. I want to pull out my hair. You cannot make this stuff up.
Is there no way to get around the hospital restrictions and have her transported there with minimal exposure (stretcher, eye mask, face mask) and then be admitted into a private room where I might be able to help her where they cannot? Keep in mind we are in the UK. Her parents have asked many months ago, but to no avail. Her good friend is fighting this battle full on and is trying too, but so far, it seems there is no solution... but to wait until she is literally dying, then risk everything and call 911 without any precaution at all.
As is, they expect her to go in without any form of protection, with exposure to all types of illnesses, in a ward with many people with excessive noise, movement and light. As is, she can hardly roll over in bed; the suggestion of her going to hospital as a regular patient is ludicrous. At the same time, I don't know how long it can be avoided.
Additionally, if any of you have suggestions as to how we might be able to ease symtoms for her along the way, that is always helpful. I aplogize for any potential misinterpretations, I do not have this illness myself. But I am so worried; I love Katie very much and she is suffering. I am at a loss as to how I can help her. This is exhausting for her. She is worse and worse every day.
