My ME is in remission

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MEPatient345

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Gingergrrl said:
I did not watch the video, and might be misunderstanding @Mel9, but do you mean that Dr. Davis himself has EDS and he said that Whitney might as well?
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Yes.. that’s what he said. Definitely made me wonder since it is genetic if Whitney could have some type of connective tissue disorder. Obviously this was 5 or 6 months ago, but Ron might know more about it now. Interesting about the 50% of patients number.. seems a lot.

Here is a transcript starting around 1:04 in the video:
Ron Davis: “We work with a physician in the Bay Area, David Kauffman, he comes to our meetings. He is the physician who had the patient who had the fusion in his spine (aka Jeff), the technical terms I’m not gonna be able to do (ie. CCI, AAI), who feels that that person got better. I think that probably what happens is that the head drops down too far and the spine sort of penetrates into the brain that causes a lot of problems. That’s probably caused by Ehlers Danlos syndrome. That is our guess. I’m walking with a cane because I have Ehlers Danlos syndrome and my knees are totally wearing out but I don’t want to take the time to get them replaced.

So what fraction have it, I asked David about this. He said “I don’t think it’s the cause of the disease, but I think it adds to a lot of the symptoms”. He’s evaluated a number of people who he’s pretty convinced do not have that, although they could develop it because of flexibility problems. Our assessment is about half of the patients have Ehlers Danlos syndrome. So for some reason it’s causing a connection to the disease. And it’s also possible that they develop Ehlers Danlos syndrome because of the disease (meaning ME), we don’t know that for sure.”
 
valentinelynx

valentinelynx

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Dakota15 said:
Does anyone know Dr. David Lynch's background in the above video? I am not familiar with Dr. Lynch....
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That's Darren Lynch, MD (David Lynch is one my favorite film directors), who is apparently a family practice doctor with an "Integrative Medicine" practice, who, according to the Hampshire College press release on this event, "has been treating ME/CFS patients for ten years." Here's a link to a description of his practice: Darren Lynch, MD – Physician, Integrative Medicine & Allergy. I thought his name sounded familiar, but I guess it was just the David Lynch reference, because I'm pretty sure I've not heard of him before.
 
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sue1234

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75
JenB said:
For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three neurosurgeries, all of my ME symptoms are now in remission.!
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Jen, I have read many of your writings about how your journey began with a virus. Maybe I missed seeing it somewhere, but what kind of virus did you have? (respiratory, gastrointestinal, etc.) I am so happy that you are well!
 
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Hopeful1976

Senior Member
Messages
346
Seriously, I can't bear to read anymore about this. PR is awash with cci - an area that I feel I cannot do a single thing about - I'm a single mum in the UK. How can I find out if I have this issue? Where on earth do I turn? I'm totally lost and feel utterly hopeless now. This has not been positive info for the likes of me at all.
 
Rufous McKinney

Rufous McKinney

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valentinelynx said:
Otherwise your options are: while you are working in a job with good benefits that offers a good PPO plan, but you cannot quit that job!
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Your overview here is outstanding, and pretty accurate in my view. Similar lack of actual treatment issues happen also in rural areas- few plans, no doctors, etc etc.

Just want to say: thats what I did. I had little choice. I had to keep working even tho I was too sick to continue to do so.

This appears to have harmed my body. This is: a huge problem in my view.

so then the great Plan I earned: denies coverage , the PPO doctor: cancels the appointment, would not want to waste my time.

This LACK OF public awareness of the trajectory of this illness, and related syndromes, and the potential damage that comes from: forced to keep working, or not receiving proper care and advice....

THAT IS CRIMINAL negligance of some type. Everyone should be warned. And if you find yourself with a little whiplash, or a bit of bungee jumping stress, some mysterious virus: you may discover you'll recieve no medical care, also!
 
Remi

Remi

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175
Hopeful1976 said:
Seriously, I can't bear to read anymore about this. PR is awash with cci - an area that I feel I cannot do a single thing about - I'm a single mum in the UK. How can I find out if I have this issue? Where on earth do I turn? I'm totally lost and feel utterly hopeless now. This has not been positive info for the likes of me at all.
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Maybe not rightaway, but it may be the beginning of better understanding, ultimately leading to better dx and tx options.

In the UK there are 2 upright MRI centres of Medserena that scan the cranio cervical junction for £1250. Dr. Gilete looks at the scans for €250*. This is all super pricey if you just want to rule out a "neck dx", but this is the option without referral needed. If you can get a brain and supine MRI on NHS or already have one, dr Bolognese looks at them for $500 if you are outside the US. Medserena does not do a brain MRI without referral, but supine is possible and perhaps cheaper.**

*It seems he wants a MRI venogram and opthalmology report as well, don't know the cost of that.
**Someone on here did not have to pay because the scans were negative, so there was nothing to discuss.
 
Wayne

Wayne

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Hopeful1976 said:
Seriously, I can't bear to read anymore about this. PR is awash with cci - an area that I feel I cannot do a single thing about - I'm a single mum in the UK. How can I find out if I have this issue? Where on earth do I turn? I'm totally lost and feel utterly hopeless now.
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Hi @Hopeful1976 -- I'm sorry to hear how distressing the current CCI discussion(s) are for you. Perhaps something to keep in mind is that CCI/AAI most likely pertains only to a minor subset of those with ME/CFS (but nobody knows of course). So for most of us, followup on these discussions would not be a high priority.

Exceptions to that would be if a person has unique characteristics to CCI/AAI that are not common to ME/CFS. What comes to mind from what I've read so far is a sense of "cranial settling" that people with CCI experience. It also appears that some kind of Orthostotic Intolerance such as POTS is virtually always present with CCI, but less so with ME/CFS.

I'm sure there are other differences as well. I'm not sure if @JenB or @jeff_w have made a compilation of factors that seem to clearly separate the two diagnoses, but if they have, I'd be most interested in reviewing it. I think such a compilation could help many of us, perhaps especially those who are stressed about much of this such as yourself.

I feel pretty certain I have some degree of CCI, but because of my circumstances, it's unlikely I'd ever be able to follow up on any kind of surgery. So I focus on any number of things that I feel could help me at least manage it for now, and/or safely postpone any needed surgery. This is why I started the following thread, to discuss things we can do at the present time, while we carefully (and patiently) consider what our best options are concerning possibly having CCI: -- Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues.

All the Best!
 
Rufous McKinney

Rufous McKinney

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Wayne said:
So I focus on any number of things that I feel could help me at least manage it for now, and/or safely postpone any needed surgery.
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I am not even convinced I'd let that: online Doctor with his miracle injection to fix CCI: even do that.

Just keep: making subtle adjustments to all dials and settings. Return to: normal settings. Repeat chant.
 
P

Pondering

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Canada
So here is the difference (IMHO) between an open minded researcher and the various people who have been speculating around if CCI is or is not CFS, etc., etc. etc. based on no real knowledge one way or the other. (some of whom have science backgrounds and should know better... I hope Jen and Jeff are ignoring them) (bolding and underlining mine).

Ron Davis: “. He said “I don’t think it’s the cause of the disease, but I think it adds to a lot of the symptoms”. He’s evaluated a number of people who he’s pretty convinced do not have that, although they could develop it because of flexibility problems. Our assessment is about half of the patients have Ehlers Danlos syndrome. So for some reason it’s causing a connection to the disease. And it’s also possible that they develop Ehlers Danlos syndrome because of the disease (meaning ME), we don’t know that for sure.”
 
valentinelynx

valentinelynx

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Rufous McKinney said:
Everyone should be warned. And if you find yourself with a little whiplash, or a bit of bungee jumping stress, some mysterious virus: you may discover you'll recieve no medical care, also!
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You are absolutely right. Every time I read or hear someone say how they are happy with the employer-suppled insurance they have, and that the US has "the greatest healthcare system in the world", said usually in the context of objecting to those who don't have insurance getting coverage from the government, I think, "Just wait until they try to use that insurance! Then they'll find out how wonderful the US 'healthcare system'" is! Yes, it's great if you are wealthy and can afford to pay any price for care. Otherwise, you will discover that in the US, healthcare is rationed: not according to need, but according to your ability to pay.
 
Rufous McKinney

Rufous McKinney

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13,489
valentinelynx said:
Otherwise, you will discover that in the US, healthcare is rationed: not according to need, but according to your ability to pay.
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Part of the rationing is the Delay business model. Keep that dollar in the insurance companies wallet, for as long as possible.

Three insurances ago: HMO, EVERY request for a referral would be denied, it would usually take three months, and the denial was always a mistake (wrong diagnosis entirely, what patient are they referring to?). Every Time.

So: they expect you to just wait, delay, beg and bother them endlessly until something finally happens.

Or: you submit referral requests: and nothing happens. So if you weren't THAT keen on going to the doctor in the first place, these issues lead to more: Delay or just Oh well, why bother to get my eyes checked.

Doctor says: Oh, they did not give you the correct Eppstein Barr Test: they ignored what he wrote on the RX and gave me the generic test that doens't tell us anything.
 
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Inara

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Messages
455
In these moments of non-responsiveness, which began after my thyroidectomy, it can look to an outside observer (I have been told) like I have passed out or, if my eyes are open, like I am dead. I am still “there” inasmuch as I can hear what is happening around me, but I have a hard time having any thoughts or interpretation of events. My cognition is still there, but at a rudimentary level. I cannot move or speak.
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I know these kind of situations, only in my case something else triggers them: a substance (certain medications) or being high-altitude (e.g. in an airplane). It may be O2 "issues" - sth. like hypoxia maybe as a consequence of hyperventilation, because giving pure O2 makes all these symptoms disappear and normalize my body. I don't really understand it; I only have the observation. I find it very interesting, though, that you describe an experience that sounds pretty similar to mine (please correct me!), only with completely different triggers.

Edit: I know this state also from concussion. (Had it 2 times, and experienced it both times.)
 
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