Flu feeling

[perrier]

Hi

If you know anyone, a friend, neighbour or family member who is nurse, maybe you could get someone to give her an saline IV.

IV saline solution and IV equipment is available by ebay (you may have to order it in from overseas Ive ordered hospital approved stuff before from ebay, it is expensive but if it makes me feel a lot better and helps get me back on feet again its worth it). I wonder if due to the bleeds and the ME, low blood volume too could be knocking her around a lot and she may need more fluids then the hospital is aware.

When I get very bad, 2 Litres of saline really can help pick me up some (you probably wouldnt give a child that much though I guess things like that also would depend just not on how bad a person is with low blood volume but the persons size).

I guess if you tried this you could probably go by her blood pressure (take it and watch for shifts, when my blood volume is better and my body has had enough IV, my blood pressure stabilises and stops shifting dramatically to postural changes such as to sitting and standing from laying).. and how she feels with it to help know if you are giving her too much and test out if she's an ordinary sized teen say 500ml trial one day and 1L a couple of days later if the 500ml didn't seem to do anything.

I can tell when Ive had enough IV by feel. With so much (for me its around 1L) I can sit easier (by that point Im not feeling so dreadful) but with a bit more (another 1L) I can stand without it causing BP issues and other problems.

When my blood volume gets even worst then it usually is, I feel feverish (and often have fever), feel that horrible fluish kind of feel where one feels extreme malaise (over all unwellness sick feel and less energy). I will continue feeling like crap and this way till I get an IV (things like electrolyes, I just mostly pee out though they can help a bit at times but not if I'm too bad). So I wonder if some of her crash is cause her blood volume hasn't picked back up enough after the bleed and the surgery. It can be bad enough without having bleeds.

Other then that, there may not be a to which will help except to wait out till the crash is over and keep resting. (and yeah taking her anywhere in such a state could do more harm then good). Don't do anything which could risk making her worst. It could take her 6mths ... or a year to recover from surgery with this condition due to the stress her body has been through.

 

[taniaaust1]

Hi

dear Tania
They had put in a picc line at hospital
We kept it
I obtained saline bags
We try 500 ml
Yesterday 750 ml
I've even put in some alpha lipoic to see
Very little 35 ml
Your descriptions are first rate
She suffers from low blood volume
We've done Myers at home too
Weak ones
No result
Just a huge relapse
We will keep trying
And poor sleep is making it worse
She can't get more than two or three hours
Oh why has medical science come to this nightmare so late
So many lovely people tortured

It's like nothing works normally in the body
Neither digestion nor immune nor hormones
Nor that saviour sleep
She said she had the best sleep in the hospital
Where they gave her dilaudid and gravel through IV
Now she's off pain killers and there is no sleep either
She's on klonopin but .5
No sleep
Just sick feeling day after day
Your are very kind to help me like this
I will have to get more supplies
I'm reassured you used eBayeBay

sorry that that didn't seem to help her improve, its really hard knowing what to suggest seeing she's as child so you need to be super careful and its not the same as an adult deciding to take a risk for themselves in the hope that something will help. It may not have been enough but I think to experiment more with it you really should only do so only under a drs advice. Do you know if it changed anything with her BP or heart rate to orthostatic stressors? Do you know what her body does heart wise and BP wise to orthostatic stressors?

I suggest to really try to do something about her sleep as that will be impacting her heaps more and make the whole illness harder to deal with. There is a lot of good posts here with sleep suggestions. I myself and I know some others here too have used the sleep aid which can be brought over the counter called doxylamine succinate (if you try it with her use a super low dose at first. eg I found I only needed 1/8th of a pill (a crumb) to notice some affect.

I was taking both doxylamine succinate and melatonin together there for a while.

"She's on klonopin but .5 "

Klonopin didn't help me sleep at all but was very useful to me when I had a really bad nearly unbearable over stimuli thing going on with my brain which gave me a wired feel with constant anxiety for a while (excitatory neurotoxicity as Dr Cheney calls the issue). is it helping anything at all with her? If not she probably should stop it as people can end up with issues with it.

 

[caledonia]

Hi

dear Tania
They had put in a picc line at hospital
We kept it
I obtained saline bags
We try 500 ml
Yesterday 750 ml
I've even put in some alpha lipoic to see
Very little 35 ml
Your descriptions are first rate
She suffers from low blood volume
We've done Myers at home too
Weak ones
No result
Just a huge relapse
We will keep trying
And poor sleep is making it worse
She can't get more than two or three hours
Oh why has medical science come to this nightmare so late
So many lovely people tortured

It's like nothing works normally in the body
Neither digestion nor immune nor hormones
Nor that saviour sleep
She said she had the best sleep in the hospital
Where they gave her dilaudid and gravel through IV
Now she's off pain killers and there is no sleep either
She's on klonopin but .5
No sleep
Just sick feeling day after day
Your are very kind to help me like this
I will have to get more supplies
I'm reassured you used eBayeBay

Your description of she's ok when lying down, but not ok if she gets up sounds like orthostatic intolerance. Does her blood pressure go down when she sits or stands? Does her heart rate go way up?

As far as alpha lipoic, if you're referring to alpha lipoic acid (ALA), that is a chelator of mercury and other toxic metals. Many people with this disease have these toxic metals (I do, and I see many people on the Cutler chelation forums with ME/CFS type symptoms even if they don't have an official diagnosis.) So I'm guessing there is a good chance your daughter does too.

If you don't take the ALA correctly within its half life, and you do have mercury, it will pick up the mercury, but then drop it before the body detoxifies it. This will cause mercury redistribution back into your body, which can make you feel much worse.

So my suggestion would be to stop using ALA at this time.

 

[perrier]

Your description of she's ok when lying down, but not ok if she gets up sounds like orthostatic intolerance. Does her blood pressure go down when she sits or stands? Does her heart rate go way up?

As far as alpha lipoic, if you're referring to alpha lipoic acid (ALA), that is a chelator of mercury and other toxic metals. Many people with this disease have these toxic metals (I do, and I see many people on the Cutler chelation forums with ME/CFS type symptoms even if they don't have an official diagnosis.) So I'm guessing there is a good chance your daughter does too.

If you don't take the ALA correctly within its half life, and you do have mercury, it will pick up the mercury, but then drop it before the body detoxifies it. This will cause mercury redistribution back into your body, which can make you feel much worse.

So my suggestion would be to stop using ALA at this time.

Ok,will do. Thanks for your input and concern.