Something exciting is coming in November

[Oliver3]

The point is to not push. If anything feels wrong, don't push. For example the first breath in after retention may be too much.

This guy is great. He doesn't try to push you. There's no intense music.
I can honestly say this has opened up my vascular system a bit. It's no cure but over time, doing things very gradually it's improved my erection, which is my best indicator of vascular health.
I can also feel the veins getting less scloraric in my thorax.
Please don't push...take it easy. We're all in sympathetic arousal anyway..but this is a good wU to face that and over time lessen it's effect.
The only trouble I have is if I push it, which I've learned not to do...I have what feels like vascular compression in the neck, so I'm careful on the return back to breathing not to do the first intake hold, unless it feels ok and then only for a few seconds. Not the fifteen wim suggests.

The good thing , at least for me, is that blowing off the carbon dioxide in the 30 breaths initially constructs the vessels. But as the hyperventilation temporarily alters your blood pH, it means you can have a long retention time.
In that retention, which is longer than you could normally do comfortably, your veins expand with the reintroduction of carbon dioxide, which is a vasodilator.
In this way, your endothelium gets a work out. The muscle of the endothelium gets exercised and ' unravels' making the veins and arteries more flexible and reopening them.
It's not a cure all but it definitely is my lived experience that it helps me.
Overtime it's also strengthened my diaphragm. I found thirty breaths very taxing for a few months. You have to put in the practice to see results.
But DO NOT PUSH.

This is an excellent meditation on how to face your sympathetic nervous system with calmness whilst having benefits to your cardio.

I've tried both the classical buteyko method and wim Hof over the last decade. Both strengthen your body and vasculature but Hof , done in this way is more gentle and helps emotionally.


I can only say my experience. But it definitely helps me

Do not do the cold water exposure. I've tried time and again and it makes me relapse. The breathing is enough.
You have to play with it and be gentle and experiment

 

[Aidan Walsh]

No point apologozing

Aidan, I'm not saying crispr will do that. I'm saying it will prevent these things happening again after surgery or before someone gets into the state where surgery is needed. It's gonna be a viral tool.
I think viral reactivation is a problem. But only in collagen effected individuals. Same with mold. I know people with eds whose fatigue lifts in hot dry climates but they still have EDS.
I've just been reading the paper on vascular eds and the role of androgen on collagen. ( If I understood it correctly z it's a scientific paper.
They used spiralactone as a therapist if agent which stopped this cross talk. Blood thinners and diuretics seem to help with CFS.
I'm glad to know they're creating mouse models ( the poor mice tho) that display these collagen defects and are finding some of the mechanisms and potential inhibitory effect of drugs on the disease process.


My point, if not clear, I apologize , is that the ground zero is collagen defects. Everything flows from that.
Some of us need surgery for sure. Some don't but we will all need crispr eventually and perhaps bridging therapies like spiralactone.
I don't have VEDS, as far as I'm aware but I think all CFS patients have compromised vascular systems that a perhaps subclinical variants of the same disease.

In the eds mouse models with eds type three, the mice developed problems in their skeletons that led onto damage to other parts of the system , such as digestion.


Just anecdotally, as something to try and you may shoot me down for this, when I've tried the win Hof method breathing, the nutcracker like symptoms lesson.
Wim says that the veins become sclerotic over time. I can attest that that reverses with consistent breathing exercise. At least for me. Obviously it could be dangerous to some but desperate times and all that.

The nutcracker symptoms lessen and erection strength increases through the breathing and there is less dysautonomia all round.
If you ever try that, I can direct you to the unaggressive, calm version of wim Hof.
It definitely does something to veins in these compression syndromes.

I am just trying to make everyone know there are countless complications in ME/CFS/EDS & many recovered from specific surgeries/procedures
I understand where you are coming from now with all of this. One Woman sick 48 years she got well with a diagnosis of HFI Hereditary Fructose Intolerance. NIH wants to use Stem Cells in copies of the tryptase genes (HATS) Hereditary Alpha Tryptasemoa Syndrome 2 or 3 copies of the tryptase gene the test done here key in tryptase on the home page the cost is about $169.00 it takes about 8 weeks from sending back the mouth swab in mail www.genebygene.com

 

[Oliver3]

Yes. I understand. Don't worry, there are plenty of us here who know eds throws many curve balls in different ways such as vascular compression.
Ron Davies has EDS but he doesn't have m.e. it affects people differently doesn't it.
Interesting info on the gene testing.
The bedrock of our illness is eds but it's intricacies are where the rub lies.
There are going to be many branches to the tree.
Isn't breast cancer 8 or 9 different diseases essentially and explains why early treatments only worked for certain individuals.
Don't forget, not everyone is gonna have nutcracker syndrome or eagle syndrome.
I believe Whitney was tested for compression in the neck.
Many autistic people have hypofusion in the brain without compression, or as it's understood at the moment anyway. It's smthg to do with the vascular system and has a lot of cross over with eds.
So, yes you make good points and I agree with you.
My point is that we need to add to that and start using crispr and stem cells to improve the basic building blocks. Why can't it be edited out of humans

 

[Rufous McKinney]

This is such an interesting discussion- hope I can get through more of it....

Have I posted this before? (not necessarily rhetorical)

Below is me about 15 months old with a left "clubbed" foot and I'm standing on the other ankle, too, just not as noticeably.

My mother said I had a mildly "clubbed" left foot and that she "massaged it". (it's now half a size smaller than my right foot, no high heels for me!)

 

[Rufous McKinney]

and stem cells to improve the basic building blocks

I ran into a supplement by accident, and I"m nearly done with taking the first bottle of 60.

Its called: Stem Cell Complete

Its got alot of Ellagic Acid

And my body has been doing things and symptoms have been changing and I think this might actually be something helpful. I"m unclear how it relates to stem cells but I"ll take the improvements.

 

[Rufous McKinney]

It's not a cure all but it definitely is my lived experience that it helps me.

really great video, I'd suggest you post it as its own thread.....

Plus your helpful commentary

I got to PT for one whole appointment and she had suggested this type of thing MIGHT be a way to build some stamina /core very gradually and without pushing aerobically.

Going to Do This More, myself.

 

[Aidan Walsh]

Yes. I understand. Don't worry, there are plenty of us here who know eds throws many curve balls in different ways such as vascular compression.
Ron Davies has EDS but he doesn't have m.e. it affects people differently doesn't it.
Interesting info on the gene testing.
The bedrock of our illness is eds but it's intricacies are where the rub lies.
There are going to be many branches to the tree.
Isn't breast cancer 8 or 9 different diseases essentially and explains why early treatments only worked for certain individuals.
Don't forget, not everyone is gonna have nutcracker syndrome or eagle syndrome.
I believe Whitney was tested for compression in the neck.
Many autistic people have hypofusion in the brain without compression, or as it's understood at the moment anyway. It's smthg to do with the vascular system and has a lot of cross over with eds.
So, yes you make good points and I agree with you.
My point is that we need to add to that and start using crispr and stem cells to improve the basic building blocks. Why can't it be edited out of humans

Eagle Syndrome is also part of the compression Syndrome disorders & related to the stomach ones & kidney compression can be SMA & the Aorta or Aorta & the Spine compressions. Countless have both ME/CFS/EDS combined they all overlap The best video is The Girl with SMA Syndrome youtube

 

[Oliver3]

really great video, I'd suggest you post it as its own thread.....

Plus your helpful commentary

I got to PT for one whole appointment and she had suggested this type of thing MIGHT be a way to build some stamina /core very gradually and without pushing aerobically.

Going to Do This More, myself.

Thanks rufous.
Just go careful. It took me ages. I think I said a few months but it was probably a year before I could do thirty breaths four times without fatigue. And I gave up a couple of times but it's honestly the only intervention physichally that has helped. But we're fragile so go careful, but not fearfully.
I genuinely go into that space mentally now with gratitude. Sometimes there's resistance and you may have to do more than this set but it does help my cardio, for absolutely sure. I just have to be careful with the neck compression. So I do my own version.
Never push. But build up. It will make you confront your body in a positive way..I hope anyway.

Btw, don't worry about the times. Sometimes I make them sometimes not

 

[Oliver3]

Eagle Syndrome is also part of the compression Syndrome disorders & related to the stomach ones & kidney compression can be SMA & the Aorta or Aorta & the Spine compressions. Countless have both ME/CFS/EDS combined they all overlap The best video is The Girl with SMA Syndrome youtube

Yes, I know of eagle syndrome. Asked my doc and my dentist to refer me, with no joy. Same with nutcracker syndrome.

So far my sorta is ok.
I have a congestion pulsing feeling in my naval. Breathing and nattokinase help for me

 

[Aidan Walsh]

I also forgot to mention TOS is also a compression syndrome & some also have Pineal Gland Cyst Tumors as well & need Surgery. So, TOS, ES & all the stomach compressions

 

[Oliver3]

This is such an interesting discussion- hope I can get through more of it....

Have I posted this before? (not necessarily rhetorical)

Below is me about 15 months old with a left "clubbed" foot and I'm standing on the other ankle, too, just not as noticeably.

My mother said I had a mildly "clubbed" left foot and that she "massaged it". (it's now half a size smaller than my right foot, no high heels for me!)

View attachment 52988

Interesting. Thanks for sharing the pic.byou were a little cutie!!
I'm really interested in familial inheritance. These syndromes run in my family. It has nothing to do with a virus in the sense that the entry point is this weakness.
My mum had mycoarditis as a kid. Ron Davies did. I'm not as severely effected as Whitney but it's funny how these patterns occur.
I think these are spectrum disorders. So vascular eds, which presents as early death in the most severe cases I believe goes underreported and is seen as rare because we're seeing the * clinical manifestations".
As I understand it there are people in their 80s with vascular eds. Rare but happens.
Collagen is the building blocks of our resilience.
I agree with Aidan, compression syndromes play a big role. But there are problems with mitochondria, electron conduction, circadian rythms, anxiety, strings of metabolic and other mental health issues. Autoimmunity plays a role and it's prevalence is higher in eds.
I can't believe anyone can think otherwise at this point.
I think Bob naviauxs work shone a light on the healing deficits that occurred in certain phenotypical individuals and that those healing cycles can be restarted.
I remember at one of the omf question and answer sessions one of the speakers saying that stem cells will be a way out of this illness.
Most of us had a time when we were well, or at least better. The work on telemerase by Liz Parrish, in general, the work done in Panama , crispr and regenerative medicine in general are a way of reversing many deficits, strengthening us.
It's interesting bob naviaux is working for NASA at present. Astronauts cone back to earth with connective tissue problems such asprecursors to heart disease and spinal problems.
They go into the " dauer" state he talks of. I'm sure NASA wants him for restarting mitochondria when astronauts gets to Mars.
We, unfortunately, go through these ageing processes quicker on age and that's because eds allows the dauer state to activate under earthly stressors and deficits to accumulate.
Thin skin...that's a metaphor for every aspect of our disease. Poor boundaries in relationships. Poor immune health. Poor structural integrity. Poor resilience. Easy gut permeability.
I think we're a phenotype for a reason. It sucks to be the phenotype

 

[Oliver3]

I also forgot to mention TOS is also a compression syndrome & some also have Pineal Gland Cyst Tumors as well & need Surgery. So, TOS, ES & all the stomach compressions

Totally with you Aidan...compression syndromes are a nightmare because they're not understood by mainstream medicine in general we know they exist cos we can feel them.

 

[Oliver3]

Just seen Jennifer Brea is making a documentary on this exact broad topic of eds, dysautonomia and compression syndromes

 

[Aidan Walsh]

The Doctor in the UK had also TB Latent form I guess passed on from Birth. Also, APS antiphospholipid syndrome blood clotting can go with compression syndromes.
The National CFIDS Foundation published another paper with Seymour & Mothersill back in April on radiation sickness they also mentioned NHL as well non-Hodgkins Lymphomas I do not believe them

 

[Aidan Walsh]

Bubbling with some possible excitement in December:
I went over my old alpha gal meat allergy tests & all were Negatives. I noticed that my Alpha Gal test was very low almost non existent it is not supposed to be so low so like an idiot I searched I found out that low AG anything below 1.2 is a deficiency for FARBY DISEASE.

My AG level was 0.01 I am now looking into this some more I may need enzyme relacement therapy for life every 2 weeks if it is FARBY DISEASE all along it can also come with heart brain kidney also cataract issues & bad daytime fatigue, sleep night issues, pain.

Reductions in fat foods, meats, lactose free milk is ok avoiding dairies Alpha Gal-Alpha Galactose-Alpha Galactosaide xx