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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Aerose91

Senior Member
Messages
1,401
curious how many here have experience with ozone. My doc wants me on it but its way too expensive so I'm looking into getting my own machine and doing it at home. Im curious about others' experiences with it
 

Hopeful2021

Senior Member
Messages
262
curious how many here have experience with ozone. My doc wants me on it but its way too expensive so I'm looking into getting my own machine and doing it at home. Im curious about others' experiences with it
Hi @Aerose91
I posted a question about Ten Pass Ozone.
Could you post this over there also?
There's a few ppl with experience.
So far, ppl like it.
 

used_to_race

Senior Member
Messages
193
Location
Southern California
Yes, I will need to do more research if I try this in the future. Thanks

I live in the US and have owned a Macy Pan for about 8 months. So far it works well, the only complaint I have is that the frame retention system isn't as good as the one OxyHealth has. But you could DIY this with zip ties pretty easily.

The other complaint I have is that there was a misunderstanding with customs, so the price I ended up paying was about $1500 higher than what I was quoted because tariffs weren't taken into account. At the time I was pretty annoyed about this but it's not really their fault if this is enforced by the government pretty stringently. Hopefully they're more communicative with their customers about this now and you should definitely ask about it specifically if you talk to them.
 

dreamydays

Senior Member
Messages
182
Location
United Kingdom
It might be wise to test your interferon gamma first. Mine was sky high so increasing it might not be the wisest idea.

They might be synergistic as they both can decrease oxidative stress. however, I was unable to stay in ketosis because my need for amino acids was too high, so I've been only on a low carbohydrate diet.

I have an Oura ring which tracks my HRV at night. one thing I've noticed is both the beta blocker I'm on, as well as Benadryl which I take around my IVIG for 3 days every 3 weeks, can dramatically alter my HRV, so I haven't found that HRV is the most useful thing to track.

I think the Oura ring looks fantastic but I am holding out for a new version as covid should push fitness trackers forward towards health tracking.
 
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used_to_race

Senior Member
Messages
193
Location
Southern California
I think the Oura ring looks fantastic but I am holding out for a new version as covid should push fitness trackers forward towards health tracking.

I wish I had something tracking my HR and HRV all day. It would be so much easier to look at the data and correlate it with, say, a symptom journal. I think Apple Watch is going to support oxygen saturation soon as well as these other quantities.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
It's been pretty helpful so far. In general, It helps me know when something's really working really interfering with my energy.

When I started Kuvan, my energy increased by 30% and stayed that way since. Starting a beta blocker lowered by heart rate, and affected my sleep quantity. Taking Benadryl tanks my HRV. I also collect data, like averaging 5 hours and 51 minutes of sleep for an entire month, and report that to my doctor, to get the doctor's attention to do something about it!

Not stuff a Fitbit could really help with.:rolleyes:
 

ChookityPop

Senior Member
Messages
600
It's been pretty helpful so far. In general, It helps me know when something's really working really interfering with my energy.

When I started Kuvan, my energy increased by 30% and stayed that way since. Starting a beta blocker lowered by heart rate, and affected my sleep quantity. Taking Benadryl tanks my HRV. I also collect data, like averaging 5 hours and 51 minutes of sleep for an entire month, and report that to my doctor, to get the doctor's attention to do something about it!

Not stuff a Fitbit could really help with.:rolleyes:
What is your diet like? First time Ive heard about Kuvan.
 

frozenborderline

Senior Member
Messages
4,405
I dont think the specific iteration of the metabolic trap proposed by phair is correct, although id be happy to be proven wrong as its a nicer picture than the reality. But i do keep thinking maybe bistability is an idea with a lot of merit. Has anyone really recovered from me/cfsfully without having to do alot of work to maintain it? Even the cci recoveries seem to have needed to do tons of extra pt and stem cell therapies etc. (I wonder if, for example , they've got some iteration of the metabolic trap that causes inflammation to continue too degrade ligaments)
 

ChookityPop

Senior Member
Messages
600
I dont think the specific iteration of the metabolic trap proposed by phair is correct, although id be happy to be proven wrong as its a nicer picture than the reality. But i do keep thinking maybe bistability is an idea with a lot of merit. Has anyone really recovered from me/cfsfully without having to do alot of work to maintain it? Even the cci recoveries seem to have needed to do tons of extra pt and stem cell therapies etc. (I wonder if, for example , they've got some iteration of the metabolic trap that causes inflammation to continue too degrade ligaments)

What do you mean with bistability?
 
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