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

lenora

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I wonder whether one under-appreciated issue related to cartilage destruction in craniocervical issues might be the role of glycine deficiency. Glycine is an amino acid that is essential for making or restoring cartilage. The average dietary intake of glycine is roughly 1.5-3 grams per day.[1] This is not enough for the body's needs, so the body makes its own glycine to make up for the inadequate dietary supply. However, the way that the body makes new glycine is tied to the folate cycle, which means that glycine production can be slowed down by anything that slows down the folate cycle, such as B12 deficiency.[2]

One publication meticulously calculated the average body's glycine production and the average body's need for glycine. This paper found that the average body makes about 2.5 grams of glycine per day, but that the body needs a total of about 15 grams of glycine per day to maintain the amount of cartilage we had in early adulthood.[3] Although this is only one paper, their results may be supported by the in vitro observation that higher amounts of glycine continue to stimulate large increases in collagen synthesis, as if the cells know that the current collagen level must be inadequate.[4] (cartilage is made of collagen)

References
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6627940/#idm139934315659552title
[2] https://pubmed.ncbi.nlm.nih.gov/19179765/
[3] https://pubmed.ncbi.nlm.nih.gov/20093739/
[4] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6153947/

NB: This post was adapted from the following post:
https://forums.phoenixrising.me/threads/is-your-hypothalamus-up-the-creek.81181/page-2#post-2294627
Hi @Pyrrhus....I don't know how I miss this, but I did. Do you have me on your list of notifications? The problem could have been at my end, I don't know. Anyway, Pyrrhus, I honestly (& I mean honestly) don't have time to read another newsletter today....right now I'm focusing on books that also contain recent research, and I'm wondering if you could once again put the name of the glycine supplement you're taking? I'm at at an age when what's left of the body has to seriously be preserved (not that I haven't tried for the past 30++ years). Anyway....when you have a moment, it would be appreciated. Thanks, @Pyrrhus. Yours, Lenora.
 

lenora

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Hi Pyrrhus.....I read the above and would like to caution about something not mentioned: That would be new or increased pain due to these cutting edge techniques. Sometimes we aren't given choices, as if it death is going to occur (as in my case in the 1970's) and sometimes that isn't the situation but we think we'll make things better. My advice is this: Don't count on the latter. At least until we get better pain improvement...which will come, things are changing much faster than we know by now. You do not want to live in horrible pain for the no. of years that I have. Always looking for something, still thinking you're somehow responsible...just how much can the body take? Then there's always the chance that whatever works for us for pain will be pulled from the market. I've seen it happen in my own case and it's not only maddening, the older we get the less energy we have to run around looking for new doctors and new answers.

Anything that sounds to good to be true, probably is. Let your wiser self be your guide. You can do good things to prepare yourself for surgery by prepping your body with good, wholesome food, vitamins and supplements (not overdone, though) and careful living. I wish you well as you go on with your lives. yours, Lenora.
 

Pyrrhus

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Hi @Pyrrhus....I don't know how I miss this, but I did. Do you have me on your list of notifications? The problem could have been at my end, I don't know. Anyway, Pyrrhus, I honestly (& I mean honestly) don't have time to read another newsletter today....right now I'm focusing on books that also contain recent research, and I'm wondering if you could once again put the name of the glycine supplement you're taking? I'm at at an age when what's left of the body has to seriously be preserved (not that I haven't tried for the past 30++ years). Anyway....when you have a moment, it would be appreciated. Thanks, @Pyrrhus. Yours, Lenora.
Hi @lenora !

Actually, I haven't tried glycine supplements yet, but that is the very next thing on my list of things to try! I'm sure I'll share my experience after I try it for a couple of weeks.

If you want to make sure you get notices when a specific thread/discussion is updated, you can click on "Watch" towards the top right of the page, next to where it says "Jump to new". This means that the software is now "watching" that thread/discussion for you and should notify you when something is added to the thread/discussion. If it says "Unwatch" instead of "Watch", it means that you are already signed up to receive updates! Hope this helps.

Anything that sounds to good to be true, probably is. Let your wiser self be your guide.
Generally speaking, that's always wise words to live by!

Best wishes,
Pyrrhus
 

lenora

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Hi @Pyrrhus.....Thanks for the news about accessing new info and for telling me that you're actually not taking glycine yet. Perhaps I'll wait until I get more reports back about how it's working, etc. I'm so behind in what's current; I feel that I've never been exposed to this world before. Trying to play catch-up really fast here!! Thanks. You're so polite, a pleasure to deal with. Yours, Lenora.
 
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I'm still researching this issue as I'd like to suggest looking into this to my dr. I heard the Facebook group is more active with surgery info? Is that the beyond the measurement group or is there another group? I tried to find Jen brea's group but couldn't find it.
 
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I'm still researching this issue as I'd like to suggest looking into this to my dr. I heard the Facebook group is more active with surgery info? Is that the beyond the measurement group or is there another group? I tried to find Jen brea's group but couldn't find it.
Yes, if the quality is good enough. It's best, however, to identify the neurosurgeon you most want to see and look into what imaging he (sorry, they are all men at present!) prefers. For example, Dr. Bolognese prefers a supine cervical MRI (3T is best but 1.5 will do) without flexion or extension. Others are more likely to want the upright MRI's with flexion/extension, although the resolution is not nearly as good.

See @jeff_w 's site MEchanicalBasis.org for contact info for Dr. Sunil Patel (Charleston, SC), Dr. Paolo Bolognese (Long Island, NY) and Dr. Vicenç Gilete (Barcelona, Spain). Others that people speak well of for craniocervcial fusion and Chiari, especially in patients with connective tissue disorders, are Fraser Henderson, MD (Chevy Chase, MD, used to be on @jeff_w 's site, not sure why Jeff removed his info), and Justin Virojanapa, DO (Cincinatti, OH, he trained under Dr. Bolognese).
 

kelly8

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Hi @valentinelynx ,
Thank you for the info. I'm currently looking into dr. Bolgonese as my area doesn't have an upright mri machine and the nearest is one state away which would mean I'd need to quarantine to get to and from. My sister is also interested in a scan since she is in mass and can't get anything out of state covered.

I'm hoping to get info about the surgery recovery and how many M.E. patients recover.
I'm hoping I don't need surgery even if they see something. But if we know at least we could monitor it and maybe do some PT to strengthen around the area.

I didn't realize because my brain was so bad when I got sick but I had a major concussion about a year before my viral illness kicked in. Then I lived in a moldy apartment so I was destined for issues. I've also had about 3 major concussions and a couple minor ones. Also I've got mixed connective tissue disorder so I could have loose ligaments regardless.

I just hope my Dr takes this request seriously. He's been really good but has brushed off my high growth hormone as being normal for me even though I am having hand and foot growth that is unusual...