Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[StarChild56]

eh perhaps i should wait until i get a Dx and then worry about this

I think that might be helpful because if it is ruled out then you don't have to worry about it any longer.

 

[Daffodil]

so there is a doctor here in toronto whose page lists chiari as a speciality or interest of w/e. perhaps it would be worth it to get on the (LONG) waiting list to see him ...just to feel him out.

in the canadian guidelines, it says that neurosurgical intervention is indicated if:

Evidence of significant instability on dynamic imaging, with possible spinal cord/brainstem compression on MRI, and or neurological deficits to warrant a cranio-cervical fusion.

now canada is very clever in that they wont do surgery unless you are practically in a wheelchair or dying lol. so the last part means that the neuro deficits will have to be massive. CFS/brain fog wont be enough....they will want to see my not being able to walk or seizures or something similar.

i did hear no one gets this surgery covered in canada.....but i do wonder if someone managed to. i need to get into that BTM group!

anyway, just brain storming

 

[frozenborderline]

Remember that sometimes there’s a reason why medical procedures cost as much as they do... besides inflation of costs of course, but I mean relative to the cheaper ones

 

[Hip]

Good find, @debored13. It seems that BPC 157 works reasonably well for EDS. Some quotes:

This is my first update for BPC - 157. IT WORKS.
Estimated pain reduction: 40-50% Overall symptom reduction 50-60%

My Schedule: I did 3 5mg vials over the course of one month. This came out to about 500mcg per day, every day for 30 days. I did a mix of subcutaneous injections and sublingual/oral administration and tried to split the doses into 2 250mcg doses per day, though sometimes I forgot or didn't have time and did one 500mcg dose per day.

The 180 degree change in my symptoms is really amazing. I strongly encourage all of you to do some research into this stuff because it genuinely blows every other medication out of the water. I seem to have tried every medication under the sun, as I'm sure many of you have, but this actually helps treat the root causes of our symptoms rather than attempting to simply manage pain. This compound will help with CFS, GI issues, and hypermobility.

Source: here.

I love being on this stuff. I feel a lot better in numerous ways, the most noticable is probably just having energy again. I'm usually exhausted from my job, which also causes a lot of pain. With BPC - 157 I can do a lot more physical activity.

Source: here.

 

[frozenborderline]

No long term safety studies on bpc 157 but wondering if you have any thoughts on its safety per its mechanism of action, @Hip ? I’ve seen concerns about itt being carcinogenic because of angiogenesis. And then I know that other things that stimulate collagen production systemically can cause cardiac fibrosis. It seems like stimulatinf growth in very specific areas is tricky.

 

[Inara]

In addition I would imagine that almost nobody pays for this surgery out of pocket

Ehm, yes, they do. At least 90% won't get it covered in Germany either, at least not when it gets to the Neurosurgeons Jeff recommends. And the others won't see a problem, most probably.

Edit: Oh I misunderstood you! Sorry!

 

[Inara]

but is there a connection between the N-type VGCC calcium channels and neck injuries or CCI?

The authors claim that in "neck injuries" intracellular calcium is increased and that this increase is due to N-type channels that transport Ca from outside the cell inside of it. (There is also a role for Na-transporters.) This would be a normal reaction. I don't know what would happen with a dysfunctional channel.

 

[Daffodil]

i have been doing some more research and people where i live say they cannot ever get these surgeries because here, doctors tell them EDS causes no problems. so they have set up gofundme's etc. and these are people with actual seizures!

but i dont think i have EDS....a chiropodist told me i had hypermobility and predicted i would have spinal problems earlier than most....but i have never been tested for EDS. you can have hypermobility without EDS right?

is it possible i might have brain stem compression as a result of EBV / ligament degeneration but still not have EDS?

because if i dont have EDS, i might not need to go to a doctor who speializes in spine surgery for EDS patients. most of these gofundme's are by people with EDS.

i mean ...there are doctors who do and have done surgeries in the cranioservical area to relieve pressure....people other than gilete etc

 

[Daffodil]

how about this study in belgium using bone marrow stem cells? someone mentioned they had prolotherapy injection but it did not work....was this the same injection?

https://www.regenexx.com/blog/areas-treated/spine/new-ccj-instability-rct-study-begins/

EDIT: the article says its different from other prolotherapies such as PRP, which does not address the problem with the ligaments this says

 

[Daffodil]

so i called dr. gilete's office. the 15 - 17K procedure was for disc replacement....the single level fusion is 50 - 53K euros!

anyway they say i will have to wait 2 - 3 weeks for the diagnosis. i just realized i do always have some neck pain...its just that i have had it now for decades so stopped noticing it as it is not that debilitating anymore

wonder what happens if some fusion has taken place already

this is a very exciting new avenue to look into. i am so thankful for the people here!

 

[Daffodil]

so i was reading that people with EDS have low success with orthopaedic surgery cuz the healing is different and the ligaments are weak etc. i am wondering....what does henderson, bolognese, gilete etc do to combat these things during surgery?

oh this makes me so mad. another thing you cannot get treated for in canada...just go to useless support groups and talk about how you cant get help ugh. i have had enough of that. thats all this country ever provides.

 

[Hip]

No long term safety studies on bpc 157 but wondering if you have any thoughts on its safety per its mechanism of action, @Hip ? I’ve seen concerns about itt being carcinogenic because of angiogenesis. And then I know that other things that stimulate collagen production systemically can cause cardiac fibrosis. It seems like stimulatinf growth in very specific areas is tricky.

Yes, all those injectable hormone and peptide products sold on body-building websites are done so on the understanding that they are not for human consumption. That allows these websites to operate legally. But it means that anything you do take is done at your own risk.

I've tried a number of these hormone and peptide products for brief periods (listed some of them in this post), including BPC-157.

A good review website which user rates the various body-building website vendors is www.eroids.com. That's where I look when I want to find a reliable vendor.


In terms of things like cardiac fibrosis, I would think there is a difference between trying a product like BPC-157 just for a few months, where I imagine the risks will be low, versus using it for many years.

BPC-157 is closely related to a peptide naturally found in the stomach.

In this study, BPC-157 actually prevented fibrosis in rat livers.

 

[rel8ted]

do you guys know if one can ask a neuro to let you use a halo for a day or 2 to see if you feel better with it? i imagine it has to be assembled by a qualified professional

I think maybe it would be best if you did some research on exactly what this is and how it is used. If you google "how is a halo brace applied", you will get the info you are looking for.

 

[rel8ted]

View attachment 30860 Remember that sometimes there’s a reason why medical procedures cost as much as they do... besides inflation of costs of course, but I mean relative to the cheaper ones

Agreed. Expertise is expensive, if it weren't, I could afford a Ferrari. Most of understand this concept.

 

[rel8ted]

so i was reading that people with EDS have low success with orthopaedic surgery cuz the healing is different and the ligaments are weak etc. i am wondering....what does henderson, bolognese, gilete etc do to combat these things during surgery?

oh this makes me so mad. another thing you cannot get treated for in canada...just go to useless support groups and talk about how you cant get help ugh. i have had enough of that. thats all this country ever provides.

@Daffodil, I understand that you are overwhelmed by your situation, but I want to tell you a story to be an encouragement to you that you to not have be overtaken by your situation.

There once was a girl who went off to serve her country and came out 2 years later debilitated and broken with no clear diagnosis, which meant no medical care. She had access to subpar care, but nobody knew what to do. The love of her life married her, and a couple of years later, he also became disabled and unable to continue his service to the country, He also has access to subpar care. They have spent years working whatever jobs they could keep in order to get access to better medical care. They sold their nice comfy home & moved into a place they never thought they would have to live in to survive on much less than they make. All of this was done to get the little girl a proper diagnosis and medical care. She fought for many years pushing way too hard working and sleeping in the parking lot after work to have enough energy to get home. He took jobs that he knew would put him in physical pain because they had health insurance. They have done things that people said couldn't be done, but they chose not to listen to the voices of doubt because they want the girl to be well again. They have put thousands of hours into researching diseases and treatment options and were able to find one doctor who has never given up the hope for an answer. There are SO many amazing people on here like @jeff_w. @Gingergrrl, @Hip, @Murph, @debored13, @mattie, @StarChild56 and many, many, many more who I forgot to mention that all have one thing in common. They carry on from day to day with persistence and eschew doubt, they do not blame their circumstances. They all find any possible way to overcome whatever obstacle is in front of them. They are the most valuable resources we have here because they know how to make things happen.

@Daffodil, I want to to know that marrying an American is not going to fix your health insurance problems, Americans have health insurance problems. You will find all the answers you need if you take it all one step at a time and look under every rock and around every corner for an answer. I think most pwME would agree that nobody cares about our health like we care about our health. Persistence is the key.

 

[Daffodil]

((((((((( @rel8ted ))))))))))) thank you for that post. i must calm myself. i do tend towards catastrophic thinking

is this woman in the story, you?

 

[dreampop]

@debored13 @jeff_w @mattie

Sorry if this is repetititve, I am in a very bad moment and can't read 40 pages, is there something between nothing and a halo collar that helpful in relieving symptoms of CCI? I.e. something you don't have to get screwed in.

 

[Gingergrrl]

dm @ashleyO if you don’t mind thanks!

@debored13 I wanted to let you know that I have tried twice (yesterday and today) to send a PM to your friend, Ashley, but I get a message back saying that I am not allowed to start a conversation with her. I am not sure if it is b/c she is a new member and PM's are not activated for her or for some other reason? Maybe you can ask her to send me a PM to see if that works? I just wanted to let you know that I tried!

 

[Gingergrrl]

The authors claim that in "neck injuries" intracellular calcium is increased and that this increase is due to N-type channels that transport Ca from outside the cell inside of it. (There is also a role for Na-transporters.) This would be a normal reaction. I don't know what would happen with a dysfunctional channel.

So in a neck injury, calcium from outside of the cell increases so more of it is transported to inside of the cell (via the N-type channels) and that this would be considered a normal reaction to the neck injury? Is this correct?

Would a neck injury ever relate to someone (later) developing calcium channel autoantibodies or is there no relationship whatsoever? My guess is that there is no relationship and that the autoantibodies stemmed from the initial EBV viral injury (or the body's attack on the virus not being able to properly shut itself off).

 

[frozenborderline]

@debored13 @jeff_w @mattie

Sorry if this is repetititve, I am in a very bad moment and can't read 40 pages, is there something between nothing and a halo collar that helpful in relieving symptoms of CCI? I.e. something you don't have to get screwed in.

Philadelphia collar is cheap and can relieve some symptoms but nowhere near as effective as halo. It should not be used as diagnostic for that reason. It may help some but if you don’t feel great from it it doesn’t mean you don’t have cci. It is not adjustable but is more supportive than the adjustable ones are so you will be better off getting it and shoving a towel under it or w/e. Again, nothing besides getting the scans is diagnostic and sometimes even that is not diagnostic and people have to get different scans or get invasive cervical traction to b diagnosed