If money was no object...which treatment?

[baccarat]

IThere are enough studies on fibromyalgia/POTS/CFS where they know exactly what is going on. It is increased levels of norepinephrine and awkward acting beta and alpha adrenergic function primarily which causes all the symptoms including immune suppression.

They who? I thought you said the cause of CFS was linked to milk and carbs consumption...
Real people who actually get better usually achieve that by sorting their infections out and/or remove their toxins load.
Everything else gets better as a result.

 

[Sushi]

... There are enough studies on fibromyalgia/POTS/CFS where they know exactly what is going on. It is increased levels of norepinephrine and awkward acting beta and alpha adrenergic function primarily which causes all the symptoms including immune suppression. ...

Huh? References?
(my bolding)

Sushi

 

[SOC]

I know people on here who take valcyte and are still just as screwed up as when they started it. Yeah maybe they can brush their teeth now without being out of breath but that's about it. If someone knows of a success story here though by all means prove me wrong.

Try reading the thread. I already mentioned some. Don't talk about stuff you know nothing about.

 

[xks201]

I meant to say that there are some abnormalities that are clear in CFS studies. Of course there is not one cause to every case of CFS. Yeah if you have an overgrowth of lactic acid producing bacteria that will cause CFS.

 

[taniaaust1]

The only other thing i would like to try would by XYREM and growth hormone, both are very expensive and can help with sleep and general recovery.i have heard the odd person say that growth hormone has fixed their sleep.

cheers!!!

hi heaps, can you remember around how much the cost of growth hormone is? and do you know if it would be covered if one is on a pension if one was found to have a deficiency of it?

thanks.
.....

To the poster who said that this thread was pointless (or something those lines)... I personally think this is a great thread. I have an interest in what others would like to be doing to treat ME/CFS...

 

[Dainty]

Well, I'm currently on my dream treatment (which costs $60 a month, including a Dr. visit) but there's a bit of a catch: its efficacy is inversely proportional to the amount of stress, noise, EMFs, and other burdens placed on my body. It is bringing about permanent healing so I won't alays need to manage myself this closely, but in the meantime stressors can put a significant dent in my progress.

Ergo, my ideal treatment at this time, in adidtion to cranial ostoepathy, would be:

1. An isolation tank - get to float with all noise and light shut out. Might even sleep in it.
2. 10+ acres of quiet property, not too windy, lightly treed with some meadows. No crows.
3. A swing. A very large swing. So I can enjoy the feeling of movement without expending much energy.
4. A chemical-free hot tub to soak in
5. A chemical free swimming pool or private lake to swim in
6. A chemical-free building structure large enough for me to swing my arms around in. I'm thinking a yurt or similar tent-like structure pitched over a heated concrete slab to keep me warm.

Yeah, I think that would do it.

 

[Little Bluestem]

You would need some horses for those meadows. Then I suppose you would need someone to take care of them.

 

[Dainty]

You would need some horses for those meadows. Then I suppose you would need someone to take care of them.

Are you volunteering?

Cookies can be arranged. I have connections.

 

[heapsreal]

hi heaps, can you remember around how much the cost of growth hormone is? and do you know if it would be covered if one is on a pension if one was found to have a deficiency of it?

thanks.
.....

To the poster who said that this thread was pointless (or something those lines)... I personally think this is a great thread. I have an interest in what others would like to be doing to treat ME/CFS...

growth hormone is around $350 a month, as for it being covered under our aussie health system, buckleys and none even if u have low levels. only covered if your a child with growth problems.

If there is a way to improve stage 3/4 sleep then this would help our natural groth hormone. i have seen a study showing baclofen 9ncreases stage 3/4 sleep.

cheers!!!

 

[Little Bluestem]

Are you volunteering?

Cookies can be arranged. I have connections.

I wish I could, but I just don't have the energy to care for horses right now.

 

[taniaaust1]

growth hormone is around $350 a month, as for it being covered under our aussie health system, buckleys and none even if u have low levels. only covered if your a child with growth problems.

If there is a way to improve stage 3/4 sleep then this would help our natural growth hormone. i have seen a study showing baclofen increases stage 3/4 sleep.

cheers!!!

At that price..it certainly comes under that "if money was no object" thing. Now I know why I dont hear of many people doing this.

 

[garcia]

The only other thing i would like to try would by XYREM and growth hormone, both are very expensive and can help with sleep and general recovery.i have heard the odd person say that growth hormone has fixed their sleep.

I have tried growth hormone. I did badly on it. Made me worse. The hormonal experts say that growth hormone is the last hormone you should correct/supplement when all the others have been corrected first. I don't know if that is true, but certainly fits in with my case.

As for Xyrem, I wouldn't touch it with a bargepole. It can depress the CNS/respiratory drive, so potentially very risky. I have actually tried a drug for sleep which is chemically similar to xyrem, and it did depress my respiratory drive, so I am extra cautious about xyrem.

In answer to the question, if money were no object I would do some kind of environmental cure. Move to a pristine stress-free environment where I have my own personal chef cook salutogenic food for me. I'd also get daily massages, and other daily therapy. I'd have a personal assistant to manage everything so I could concentrate on being a patient, and not have to play doctor/ researcher / carer / organizer for myself as I currently do.

Somewhere near the beach/sea would be nice. And somewhere with some sun ...

 

[xks201]

XIFAXAN definitely ...now that I think about it.