Craniocervical instability

[David Tyrer]

Anybody in the UK here managed to get their GP/family doctor to look into CCI, in relation to their ME/CFS and/or other symptoms?

I've long since been convinced that my atrial fibrillation was caused by some issues with the vagus nerve and I'm now becoming more and more certain that issues with my cervical spine are some how involved in my ME/CFS as well.

I've had many issues with cervical spine over the years, often waking with throbbing/nagging aches and pains at the base of my skull/top of my neck, that often radiates around to the front of my head in a strange way. Occipital headaches, are those called? I also get headaches/pains behind one or both eyes. This has been going on for as long as I remember but then, I often forget that I was knocked over by a black cab in my mid-20s. Suffered no immediate serious problems as a result, other than a bruised ego and body but I've had those neck/spine/head issues ever since. I had many problems just holding my head up straight and often had to rest it back on chair/bed, or even the wall at times.

The very first health issue that cropped up for me in my 30s was my heart - I was eventually diagnosed with afib. Had an ablation. A couple of years later my first of the current crop of problems started with dizziness, heavy head, fogginess, blurry vision. Then the other problems followed from about 9-12 months later.

As my ME/CFS symptoms have worsened over the past 18 months those pains have gotten worse and become more frequent. They're certainly not crippling but definitely increasing in frequency/duration. Now yes, it could be that they've become worse because of my ME/CFS. But I'm becoming more curious as to whether it's the other way around.

Anybody been investigated for/diagnosed with CCI or some sort of cervical spine problem in the UK and how did you go about it?

 

[Carl#1]

People with CFS sometimes have problems with collagen because of a shortage of available Glycine which gets used up by the liver for amino acid conjugation detox. This can cause problems with the neck in some people. Getting more Glycine might help. I take as much as I can get without making myself sleepy as it can increase GABA. 5ml Glycine is my limit at a time unless I take it with Magnesium Glycinate which delays the release of the glycine. Research that I have read suggests that the human body needs around 20 grams of glycine/day.


DOI: 10.1007@s12038-009-0100-9

A weak link in metabolism; the metabolic capacity for glycine biosynthesis does not satisfy the need for collagen synthesis.pdf
Schi-hub is not working ATM

 

[Sandi Scott]

Hi David, I cannot Help you with finding a doctor in the UK for CCI as I live on the central coast of California but I can tell you How I was finally able to experience a life- changing level of relief from my CCI. Over the last 25 years I have been in approximately 10 motor vehicle accidents so experienced multiple whiplashes. I went to my MD for one of the initial injuries and he prescribed a muscle relaxant Which made me very very sleepy so it didn’t really help.I have undergone massage therapy and chiropractic treatment for the past 20 years plus.

Fast forward to spring of 2017 when I had a five week illness with severe sinus congestion diarrhea vomiting ear pain tongue pain which I believe was my trigger for contracting ME. One of my very first symptoms was the decreasing ability to hold my head up especially in a sitting position where I’m not reclining at all. Eventually in December 2019 my MD upon my request sent me to get x-rays of my neck and sent me to an orthopedic surgeon As well as an MRI. I had such great great hopes And was so disappointed as My MD stated my MRI was normal. The neck x-ray showed some minor atherlisthesis. The orthopedic surgeon referred me to a pain specialist who I did not go to. My MD also referred me to a very good craniosacral therapist and I experienced some temporary relief in my neck but it didn’t last And it was very expensive and not at all covered by my insurance So I couldn’t afford to keep going. I also underwent 6 months of physical therapy in late 2018/early 2019 which helped a little bit.

In the meantime I go back home and I lay in bed with my iPhone propping it up on a pillow searching for something that will help.I am completely perplexed at how all these people with ME might need to be in a wheelchair but they could sit up;they can type they can read. I could only do these things For about five minutes and then the neck and trapezoid muscles and my arm muscles were just too weak to carry on.

SOOO, in November of 2020, I took Lamuvidine which is an anti-viral drug prescribed by my Infections disease specialist MD, Dr. John Chia. After I stopped the Lamuvidine (had to because of side effects), I experienced an overall increase in my energy level of about 20%.

About this time I decided I needed to just start Going back and reading everything I could find on specific treatments for ME And I thought I must’ve missed something obvious because of Hundreds if not thousands of people I see every day on the millions missing Instagram they don’t Appear to have an unstable neck. I realized I just needed to start trying some new things and my brain functioning was so much better after being on the Lamuvidine That I was starting to remember things I had read in the past Especially by Dr. Charles Lapp, Dr Chia, Dr. Teitelbaum and Dr. Sarah Myhill among others. I primarily focused on these four because they are clinicians. I watched every YouTube presentation that I could of all of these doctors especially the ones where they present at the IACFS/ME conferences. I purchased Dr. Myhill’s book diagnosis and treatment of Myalgic Encephalitis second edition. I looked for “holes” in my treatment plan, but more specifically I looked for 1) treatments recommended by all 4 MD’s or at least 3 out of 4 and 2) research to back it up.

I was already taking a lot of supplements some which were recommended by my MD, one by Dr. Chia and others were my choice. I have several other co- morbid conditions.

***********HERE IS WHAT MADE THE DIFFERENCE:??D-RIBOSE. 5 g. 3x. Day???????

On the 13th day I experienced a dramatic difference in my energy level but more specifically I could hold my head up.

NONE of my doctors told me about D-Ribose. I might be different than a lot of people because of the multiple injuries, but since they’re puzzled by it, I can only conclude that my body just Didn’t have the energy to hold up the weight of my head



Full disclosure:


On the 11th day I began:

Acetyl L-Carnitine 500 mg

Glutathione (reduced) 500 mg. And

Super Oxide Dimutase 20 mg


FYI - also started taking 250 mg Niacinamide (not Niacin per Myhill) every 3 hours to teach 1500 mg per day but after 5 days I had diarrhea and severe insomnia so I now take 250 mg twice a day.

I also find that going to a hot springs helps greatly with relief from the muscle tightness, pain and discomfort. Before I went I checked with my MD and Dr. Chia. Both recommended it. Dr. Myhill also recommends it.

Based on my experiences, I highly recommend taking all the recommended supplements to support your bodies production of ATP, massage therapy, hot springs or Epsom salts baths, heat and cold therapy and simple neck strengthening exercises that SHORTEN the neck muscles.

You didn’t mention if you have had an x-ray of your neck. I probably should’ve mentioned this first as I don’t know if you have a condition which in order to be corrected would involve cranial cervical fusion. If you are not familiar with Jen Brea, I highly recommend you check out her story. She had CCI/ME and is recovered now. During her recovery she had a cranial cervical fusion surgery among other surgeries. She co-founded Meaction. net and I think there is a UK branch.

I do completely empathize with you because I’ve experienced it. I hope you can find relief.

 

[Edie]

Hi David. Sounds to me, after reading your experiences, that you should have also been diagnosed with Fibromyalgia as well. Your story is so similar to mine. I also had problems walking and tried D-Ribose. Worked like a charm! I've been on D-Ribose for years now.

Dr. Jacob Teitelbaum's new 4th edition book (GREEN COVER) 'FROM FATIGUE TO FANTASTIC' lists the benefits of D-Ribose: 61.3% increase in energy
37% increase in overall well-being
29.3% improvement in sleep
30% improvement in sleep
30% improvement in mental clarity
15.6% decrease in pain

Dr. T's new 4th edition book (green cover) contains the most helpful information on the understanding of what has gone wrong with ME/CFS/FM and the treatments he has used in his decades of treating himself and his patients. It's a must have book for all of us and our Health Professionals!

 

[JameDiagonal]

Very interesting thread, thank you for sharing.

 

[David Tyrer]

People with CFS sometimes have problems with collagen because of a shortage of available Glycine which gets used up by the liver for amino acid conjugation detox. This can cause problems with the neck in some people. Getting more Glycine might help. I take as much as I can get without making myself sleepy as it can increase GABA. 5ml Glycine is my limit at a time unless I take it with Magnesium Glycinate which delays the release of the glycine. Research that I have read suggests that the human body needs around 20 grams of glycine/day.


DOI: 10.1007@s12038-009-0100-9

A weak link in metabolism; the metabolic capacity for glycine biosynthesis does not satisfy the need for collagen synthesis.pdf
Schi-hub is not working ATM

Hi and thanks for your reply. Sorry I'm only just responding, brain fog has been quite severe lately and I forgot I'd even posted the question!

I will look into that, thank you!

 

[David Tyrer]

Hi David, I cannot Help you with finding a doctor in the UK for CCI as I live on the central coast of California but I can tell you How I was finally able to experience a life- changing level of relief from my CCI. Over the last 25 years I have been in approximately 10 motor vehicle accidents so experienced multiple whiplashes. I went to my MD for one of the initial injuries and he prescribed a muscle relaxant Which made me very very sleepy so it didn’t really help.I have undergone massage therapy and chiropractic treatment for the past 20 years plus.

Fast forward to spring of 2017 when I had a five week illness with severe sinus congestion diarrhea vomiting ear pain tongue pain which I believe was my trigger for contracting ME. One of my very first symptoms was the decreasing ability to hold my head up especially in a sitting position where I’m not reclining at all. Eventually in December 2019 my MD upon my request sent me to get x-rays of my neck and sent me to an orthopedic surgeon As well as an MRI. I had such great great hopes And was so disappointed as My MD stated my MRI was normal. The neck x-ray showed some minor atherlisthesis. The orthopedic surgeon referred me to a pain specialist who I did not go to. My MD also referred me to a very good craniosacral therapist and I experienced some temporary relief in my neck but it didn’t last And it was very expensive and not at all covered by my insurance So I couldn’t afford to keep going. I also underwent 6 months of physical therapy in late 2018/early 2019 which helped a little bit.

In the meantime I go back home and I lay in bed with my iPhone propping it up on a pillow searching for something that will help.I am completely perplexed at how all these people with ME might need to be in a wheelchair but they could sit up;they can type they can read. I could only do these things For about five minutes and then the neck and trapezoid muscles and my arm muscles were just too weak to carry on.

SOOO, in November of 2020, I took Lamuvidine which is an anti-viral drug prescribed by my Infections disease specialist MD, Dr. John Chia. After I stopped the Lamuvidine (had to because of side effects), I experienced an overall increase in my energy level of about 20%.

About this time I decided I needed to just start Going back and reading everything I could find on specific treatments for ME And I thought I must’ve missed something obvious because of Hundreds if not thousands of people I see every day on the millions missing Instagram they don’t Appear to have an unstable neck. I realized I just needed to start trying some new things and my brain functioning was so much better after being on the Lamuvidine That I was starting to remember things I had read in the past Especially by Dr. Charles Lapp, Dr Chia, Dr. Teitelbaum and Dr. Sarah Myhill among others. I primarily focused on these four because they are clinicians. I watched every YouTube presentation that I could of all of these doctors especially the ones where they present at the IACFS/ME conferences. I purchased Dr. Myhill’s book diagnosis and treatment of Myalgic Encephalitis second edition. I looked for “holes” in my treatment plan, but more specifically I looked for 1) treatments recommended by all 4 MD’s or at least 3 out of 4 and 2) research to back it up.

I was already taking a lot of supplements some which were recommended by my MD, one by Dr. Chia and others were my choice. I have several other co- morbid conditions.

***********HERE IS WHAT MADE THE DIFFERENCE:??D-RIBOSE. 5 g. 3x. Day???????

On the 13th day I experienced a dramatic difference in my energy level but more specifically I could hold my head up.

NONE of my doctors told me about D-Ribose. I might be different than a lot of people because of the multiple injuries, but since they’re puzzled by it, I can only conclude that my body just Didn’t have the energy to hold up the weight of my head



Full disclosure:


On the 11th day I began:

Acetyl L-Carnitine 500 mg

Glutathione (reduced) 500 mg. And

Super Oxide Dimutase 20 mg


FYI - also started taking 250 mg Niacinamide (not Niacin per Myhill) every 3 hours to teach 1500 mg per day but after 5 days I had diarrhea and severe insomnia so I now take 250 mg twice a day.

I also find that going to a hot springs helps greatly with relief from the muscle tightness, pain and discomfort. Before I went I checked with my MD and Dr. Chia. Both recommended it. Dr. Myhill also recommends it.

Based on my experiences, I highly recommend taking all the recommended supplements to support your bodies production of ATP, massage therapy, hot springs or Epsom salts baths, heat and cold therapy and simple neck strengthening exercises that SHORTEN the neck muscles.

You didn’t mention if you have had an x-ray of your neck. I probably should’ve mentioned this first as I don’t know if you have a condition which in order to be corrected would involve cranial cervical fusion. If you are not familiar with Jen Brea, I highly recommend you check out her story. She had CCI/ME and is recovered now. During her recovery she had a cranial cervical fusion surgery among other surgeries. She co-founded Meaction. net and I think there is a UK branch.

I do completely empathize with you because I’ve experienced it. I hope you can find relief.

Hey, and thank you!

I've not heard of the others doctors, but I'm had a recent consultation with Dr MyHill and read the 2nd ed of her book. I struggled a lot with her PK diet so had to stop after a month but I'm taking D-Ribose, and will up dose to 3 times a day, and also taking Glutathione, although only recently! I'll take a look at the other two though, thank you.

Yes, I've heard of Jen Brea before. Actually had a few conversations with her on Twitter. Her documentary was hard to watch, so familiar but it's her own experience that's led me to looking into CCI/ME, as I had a couple of accidents over the last 20 years that I believe may have come back to haunt me in the form of my ME and other health issues. I can't remember if I had an x-ray of my neck but it's something I'm definitely pushing for. I've been referred for physiotheraphy and apparently they'll refer me on if they believe there is something more serious going on with my neck issues.

 

[David Tyrer]

Hi David. Sounds to me, after reading your experiences, that you should have also been diagnosed with Fibromyalgia as well. Your story is so similar to mine. I also had problems walking and tried D-Ribose. Worked like a charm! I've been on D-Ribose for years now.

Dr. Jacob Teitelbaum's new 4th edition book (GREEN COVER) 'FROM FATIGUE TO FANTASTIC' lists the benefits of D-Ribose: 61.3% increase in energy
37% increase in overall well-being
29.3% improvement in sleep
30% improvement in sleep
30% improvement in mental clarity
15.6% decrease in pain

Dr. T's new 4th edition book (green cover) contains the most helpful information on the understanding of what has gone wrong with ME/CFS/FM and the treatments he has used in his decades of treating himself and his patients. It's a must have book for all of us and our Health Professionals!

Thanks! I'm taking D-Ribose at the moment but only once a day. I'll start taking it a few times a day and see how that helps. It has helped give me a little boost in the mornings when I take it so I'll see how it goes with 3!

 

[Sandi Scott]

Hey, and thank you!

I've not heard of the others doctors, but I'm had a recent consultation with Dr MyHill and read the 2nd ed of her book. I struggled a lot with her PK diet so had to stop after a month but I'm taking D-Ribose, and will up dose to 3 times a day, and also taking Glutathione, although only recently! I'll take a look at the other two though, thank you.

Yes, I've heard of Jen Brea before. Actually had a few conversations with her on Twitter. Her documentary was hard to watch, so familiar but it's her own experience that's led me to looking into CCI/ME, as I had a couple of accidents over the last 20 years that I believe may have come back to haunt me in the form of my ME and other health issues. I can't remember if I had an x-ray of my neck but it's something I'm definitely pushing for. I've been referred for physiotheraphy and apparently they'll refer me on if they believe there is something more serious going on with my neck issues.

 

[David Tyrer]

Well, update on my attempts to get this checked out via NHS: I had an appointment with the musculoskeletal department last week.

Was told it's all due to deconditioning and stress. The guy I spoke to (presumably HCA or physio) didn't even know what CCI was and, as the gatekeeper, I wasn't able to speak to the actual specialist.

I'm being sent strengthening exercises. Because whilst physio didn't work 3 years ago, when it was much more mild, this will definitely be the cure this time.

Looks like I'm going to be saving my spare cash for some private investigations again. Would love to know what I pay my tax/NI for. But what frustrates me even more is that I work for the NHS and not all departments are like this, but so many are worse.

 

[Carl#1]

I have a further recommendation which I have found with regard to Glycine.

I can take more that a 5ml scoop of Glycine without causing sleepiness providing I also take Glutamine with it..... I take a 1:2 ratio Glycine:Glutamine which works for me. I can then increase my Glycine intake without causing drowsiness/sleep because the Glutamine gets turned into Glutamate which balances the GABA produced by the Glycine. If sleeping is okay I will increase the Glycine amount or not have the Glutamine. However Glutamine/Glutamate/glutamic acid is needed along with Cysteine/NAC for glutathione production which is essential in CFS because of the extremely high detox requirements caused by Increased Digestive Permeability.

The human body can produce some Glycine but when the requirement rises in high detox environments there is insufficient and something suffers as a result the liver will prioritize as required. Skin/collagen may suffer as a result as it does in the elderly. Genes can play a part.

There might be other missing nutrients which could also contribute to the problem so it might be worth investigating what nutrients are needed for collagen production.

Another thing is Magnesium. I get neck pain when I consume insufficient Magnesium. For me that is a fairly reliable indicator of my Magnesium status. pamojja who posts to a number of forums at one time could not get enough Magnesium without IV. I do not know whether that has changed for him. Magnesium is involved in so many processes.