Something exciting is coming in November

[Aidan Walsh]

I might as well just dig out the lounge chair and toss in the towel...

Turn on YouTube now & watch the second part of the video called The Girl with SMA Syndrome it also explains the special Radiologist & xrays drinking barium procedures then we all will go to a Beach & drink some beers & write some tell all Books LOL

 

[Judee]

They're not the only ones trying to figure this out though.

 

[Aidan Walsh]

They're not the only ones trying to figure this out though.

Aidan is also trying to figure it all out LOL

 

[Judee]

Aidan is also trying to figure it all out LOL

Yep...the brainiacs of PR.

 

[Aidan Walsh]

Why do I show a left enlarged kidney lopsided, is it blocked? SMAS/Nutcracker Syndrome, also is the vein stuck between my spine & my aorta or between my SMA and aorta? My heart aorta shows a dilatation ascending like an aneurysm does. The aorta runs up beside the spine area.

Why do I show 2 styloid bones actually an ENT Surgeon measured them at a 31& 34 left/right neck for Eagle Syndrome?

Why do I also show 2 tumors, one on top of the other in my pineal gland top right side of my brain stem, mid-brain below brain matter, one measures a 25/2.5?

Why did I have an opening spine pressure of 500+ on the lumbar puncture pseudotumor cerebri?

 

[Aidan Walsh]

I don't have the same bad opinion of OMF that many others have, but this was unnecessary hype, not worth the buildup or the continued boasting.


Please.

What OMF should have done is announced this without the buildup or the hype. And i hope they are not spending much money on it because its a musical chairs study, these drugs have been tried and help some people somewhat. The drugs are off patent and the only real cost here is the staff time spent collecting and analyzing data.

Its worth a confirmatory study so its on the books for future reference but its not a big deal, its standard repurposed drug trial that we already know is not a game changer or even particularly effective.

We need competent skilled Radiologists and Surgeons, it is likely structural instead of bio-weaponry or toxic useless medicines for profits & No pathogens have ever been discovered, all speculations...Patents for profits is what I am seeing now

 

[Alvin2]

Aidan is also trying to figure it all out LOL

As is @Alvin2

 

[Oliver3]

Why do I show a left enlarged kidney lopsided, is it blocked? SMAS/Nutcracker Syndrome, also is the vein stuck between my spine & my aorta or between my SMA and aorta? My heart aorta shows a dilatation ascending like an aneurysm does. The aorta runs up beside the spine area.

Why do I show 2 styloid bones a 27& 31 left/right neck for Eagle Syndrome?

Why do I also show 2 tumors, one on top of the other in my pineal gland top right side of my brain stem, mid-brain below brain matter, one measures a 25/2.5?

Why did I have an opening spine pressure of 500+ on the lumbar puncture pseudotumor cerebri?

It's some kind of unrecognized connective tissue disorder. I'm positive of that.
Just been looking at some crispr mice edited to have muscular skeletal problems. I think eds is such an unexplored field.
Look at Jen brea, didn't pass the criteria for eds but the ligaments in her neck causes vascular compression and structural issues for the brain and nervous system.
It's deffo a structural thing, down the line but it starts with the connective tissue.

The mice had the energy problems, increasing deformities and associated stomach issues involved in spine and muscle degradation.

Regenerative medicine
That's our only way out.

I've followed a scientist called " liz Parrish" . She regrowing muscle and tissue using telemerase and other anti ageing processes.
She's like Ron. In it for the right reasons. In her case, her son has type 1 diabetes and she believes her work on tekemores and tissue building will help many conditions. I believe she offers bespoke treatment s

 

[Aidan Walsh]

It's some kind of unrecognized connective tissue disorder. I'm positive of that.
Just been looking at some crispr mice edited to have muscular skeletal problems. I think eds is such an unexplored field.
Look at Jen brea, didn't pass the criteria for eds but the ligaments in her neck causes vascular compression and structural issues for the brain and nervous system.
It's deffo a structural thing, down the line but it starts with the connective tissue.

The mice had the energy problems, increasing deformities and associated stomach issues involved in spine and muscle degradation.

Regenerative medicine
That's our only way out.

I've followed a scientist called " liz Parrish" . She regrowing muscle and tissue using telemerase and other anti ageing processes.
She's like Ron. In it for the right reasons. In her case, her son has type 1 diabetes and she believes her work on tekemores and tissue building will help many conditions. I believe she offers bespoke treatment s

Jen Brea was told she had EDS Hypermobility then another opinion Doctor said she did not have EDS. I feel she has EDS& I believe Ron Davis's entire Family has EDS Hypermobility he has not been well since a child & why he went to Medical school his daughter is now also diagnosed with EDS Hypermobility.

I was first told I had EDS3 with partial Marfans then a genetic Doctor said I did not but then diagnosed me with HSD Hypermobility Spectrum Disorder EDS I know I also have ME/CFS I also believe ME/CFS is also EDS types some even have crossovers like EDS3 with Tenascin X. EDS4 Vascular is rare but some have this.

I know many with ME/CFS also have the Classic EDS type it could also be why so many have so many illnesses combined & no one can find the proper tests because so many illnesses are overlapping.

Not all EDS have a Genetic test, especially the ones like EDS3 or HSD. Syncope, POTS are everywhere in EDS types ME/CFS so are CCI CHIARI MALS NUTCRACKER SYNDROME, MESENTERIC ARTERY COMPRESSION, SCOLIOSIS TOS EAGLE SYNDROME PINEAL GLAND TUMOR CYSTS.

The lists are so long some even have Nutcracker Syndrome compression with the Left RenalVein & the Aorta/Spinal Chord or the Left Renal Vein & Mesenteric/Aorta. There will never be one Pill fix when it is mostly Surgical fixes missed in everyone.

The Groups on Facebook cover all the links above they all have these issues yet everyone keeps going on about Viruses, Bacteria, Mold and Lyme with zero answers. EDS is the most under-treated illness on the entire Planet.

In fact, Doctors are told in training not to operate on these connective tissue patients. I think the Medical community needs to be sued for $Trillions$ & Criminal Court Public Enquiries

 

[Oliver3]

I agree with everything you say. It's just not recognized. The Beighton score is a joke of a test in this day and age. I mean yes, good to use as a tenuous basic guide but tissue and genetic testing needs to be improved.
Whilst I agree surgery may be required to realign the body, regenerative medicine is the only cure.
The fact that Jen breas " specialists" couldn't agree whether she had EDS says it all. It's guess work.
HEDS has no genetic markers yet, and looks EXACTLY like m.e. my friend has it ( RCCCX theory anyone?) And his symptoms are the same as mine except he has an aneurysm already.

I see that heds look in so many peopleyoure right it's everywhere. The links between MCAS autism etc etc all have these connective roots.
How many of us have a relative ( grandparents too) who suffered similar difficulties. As you point out, these things run in families. Mold, viruses, etc they're all secondary to the basic faults that need reengineering


Once they find a way to develop crispr to tackle multiple genetic targets then boom!

You mention vascular eds. Surely that would be a candidate for crispr.

 

[Judee]

@Aidan Walsh and @Oliver3 not sure if you saw this thread:
Https://forums.phoenixrising.me/threads/im-vitamin-c-injections-for-heds-anyone-tried-this.89241/

Edit: Oops, just noticed that you did Aidan so no need to respond.

 

[Oliver3]

@Aidan Walsh and @Oliver3 not sure if you saw this thread:
Https://forums.phoenixrising.me/threads/im-vitamin-c-injections-for-heds-anyone-tried-this.89241/

Edit: Oops, just noticed that you did Aidan so no need to respond.

Very interesting. I mean I've tried high dose vit c before but not injecting etc and not in a structured way.
Interestingly, for me, I used to be designated driver when I was a teacher and able to work. I used to drink like four pints of fresh orange juice on those nights out.
I suddenly felt like I was 15 again. No anxiety, no energy lack, no constriction feelings around my body.
At first I thought it was the sugar. But sugar drinks just made me feel worse.
Then I'd try kiwis and I felt like my veins would open up . So then I started eating a fair bit of vit c.
It's what got me interested in mast cell activation and from there EDS.

The vit c after a while started having less effect and citric acid started hurting my bones.

She is young, it worked for me around that time.
That said, thank you for posting. I'll look I to it properly

 

[Aidan Walsh]

I agree with everything you say. It's just not recognized. The Beighton score is a joke of a test in this day and age. I mean yes, good to use as a tenuous basic guide but tissue and genetic testing needs to be improved.
Whilst I agree surgery may be required to realign the body, regenerative medicine is the only cure.
The fact that Jen breas " specialists" couldn't agree whether she had EDS says it all. It's guess work.
HEDS has no genetic markers yet, and looks EXACTLY like m.e. my friend has it ( RCCCX theory anyone?) And his symptoms are the same as mine except he has an aneurysm already.

I see that heds look in so many peopleyoure right it's everywhere. The links between MCAS autism etc etc all have these connective roots.
How many of us have a relative ( grandparents too) who suffered similar difficulties. As you point out, these things run in families. Mold, viruses, etc they're all secondary to the basic faults that need reengineering


Once they find a way to develop crispr to tackle multiple genetic targets then boom!

You mention vascular eds. Surely that would be a candidate for crispr.

One cannot change blocked veins or fix pineal gland cyst benign tumors removals with Crisp, the kidney is compressed blocked & spinal fluid leaks or scoliosis. There is no virus, no mold as any cause

 

[Aidan Walsh]

Very interesting. I mean I've tried high dose vit c before but not injecting etc and not in a structured way.
Interestingly, for me, I used to be designated driver when I was a teacher and able to work. I used to drink like four pints of fresh orange juice on those nights out.
I suddenly felt like I was 15 again. No anxiety, no energy lack, no constriction feelings around my body.
At first I thought it was the sugar. But sugar drinks just made me feel worse.
Then I'd try kiwis and I felt like my veins would open up . So then I started eating a fair bit of vit c.
It's what got me interested in mast cell activation and from there EDS.

The vit c after a while started having less effect and citric acid started hurting my bones.

She is young, it worked for me around that time.
That said, thank you for posting. I'll look I to it properly

I wanted to reply to this, if she responded to Vitamin C the likelihood is she had a vitamin C deficiency from HFI Hereditary Fructose Intolerance, illness not EDS. A paper Published called Doctor, why is my son so tired? he was deficient in vitamin C he needed iv vitamin C & Pills he had adolase B HFI deficiency from Birth

 

[Oliver3]

One cannot change blocked veins or fix pineal gland cyst benign tumors removals with Crisp, the kidney is compressed blocked & spinal fluid leaks or scoliosis. There is no virus, no mold as any cause

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.

 

[Oliver3]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6994142/

 

[Oliver3]

Btw, I think crispr can deal with spinal leaks/ pressure and scolliosis. Along with stem cell therapy

 

[Oliver3]

I wanted to reply to this, if she responded to Vitamin C the likelihood is she had a vitamin C deficiency from HFI Hereditary Fructose Intolerance, illness not EDS. A paper Published called Doctor, why is my son so tired? he was deficient in vitamin C he needed iv vitamin C & Pills he had adolase B HFI deficiency from Birth

Regarding the fructose intolerance. I'm pretty sure that's a symptom in many eds patients.
These connective tissue illnesses have such a long repertoire of secondary issues as we see in the RCCCX theory

 

[tyson oberle]

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 would like to know, thanks

 

[Oliver3]

I would like to know, thanks