ME caused by squeezed nerve?

[IreneF]

The French say cherchez la femme, the Americans say follow the money.

 

[Mary]

A few years ago I saw a chiropractor who made similar claims about atlas treatment. I did it because I had tried everything else I could think of. It cost me a couple of hundred dollars out of pocket. It did nothing for my CFS, although I think it helped my neck a little.

 

[Gingergrrl]

My chiropractor has talked about different treatments that can help me but he has never said that they can "cure" CFS!

 

[ukxmrv]

Sometimes the people offering treatment are not after our money they are after power or something else entirely like sex. I've met people who like the idea that only they can offer something spectacular that will heal me. In my experience these have either been psychopaths or deluded. I count these are scams because they want something of me. Sometimes it is "only" further verification of how special their talents are. The story you are being sold has the hallmarks of this for these reasons

1. You are being offered something scarce and very special indeed (read Vietnam forest etc)
2. You are being offered a cure (and a 100%)
3. There was a young vulnerable family member involved (read Munchusans or child abuse)
4. The person has a simple job, not much money and not much power (i.e. they are not just a humble carpenter but a superhero)
5. The person wants you complete in their power (you must dedicate your time to this and give up everything else)
6. The facts cannot be verified (i.e. there will be no test results on the child or the other people "cured")
7. Near death is mentioned for the child (this person gets off on death and should be avoided)
8. He / they have hooked you in with the "scarcity", too busy really to treat you but on reflection now going to do it. Has treated many in the past. now too busy but suddenly free

So, if it sounds too good to be true it is.

This is a very dangerous situation. Please consider how this person has gained access to you and how family members have been duped. Also please consider what has happened/is happening to the miraculous child.

It does hurt to think how these things happen in family. I have one myself in my extended family. She could cure cancer and her partner believes in her. It doesn't end well for the children or anyone duped by their lies.

You will need your eyes open to counteract the pressures that will be put on you now as they try to weave a web using your more gullible family members to hook you in.

 

[xchocoholic]

Great list of reasons @ukxmrv . Tx .. x

 

[optimist]

@ukxmrv I think you have worded some important points very skilfully there!

 

[khr]

What I am sure of is that he's not trying to scam me. He has actually expressed he rather not treat me as his too busy with his life, but since I know his family, and if I really want to, he'll do it. In fact it was my sister who asked him to share about his experience with ME with me. So, I do believe that he's convinced that he can cure me, and that he has no intention to scam me.

However, the doubt lies with me if he really can do what he says he can do, and if I'd bother to try
He claims that this man who taught him the technique tried to get inside the medical circles in Norway and that he offered to teach them what he knew about ME, but they refused, so he left the country and moved to Vietnam

Sounds like he learned it from some guy called John Pearsall. Do a search the name and the Norwegian ME forum. He was charging 20 000 pounds for treatment.

https://cureformecfs.wordpress.com/author/goyadogblog/

 

[adreno]

Great post @ukxmrv

 

[Wayne]

Did anyone ever hear about this? What's your thought? I have to admit I have more or less decided not to go for it, but thought just to hear with you guys.

Hi Optimist,

If what you're inquiring about is called atlas profilax, there's a lengthy thread here entitled: "Atlas Profilax Treatment" where I posted fairly extensively on my own positive experience with it.

 

[Hip]

Fantastic post, @ukxmrv. Very psychologically insightful.

There was another carpenter who also began an alternative healing and spiritual career, and also asked his acolytes to drop everything and focus purely on his teachings. He ended up founding a major religion. Had a bit of trouble with the Romans, though...

I agree with ukxmrv that there does seem to be a bit of a charismatic leader faith healer format to this treatment.


Perhaps one way to ascertain whether his treatment is for real or not is to ask him if you could contact a few of the 40 to 50 ME/CFS patients he says he has cured. Most ME/CFS patients will be very happy to detail their story of remission or cure, so by communicating with these treated patients, you might get a better idea of how authentic the treatment is.


Though it is an interesting idea that a squeezed nerve, or perhaps squeezed lymph channel draining the cerebrospinal fluid, in the neck might exacerbate the symptoms of ME/CFS.

If you are familiar with Michael VanElzakker's vagus nerve infection hypothesis for ME/CFS, you will be aware that VanElzakker suggests that ME/CFS arises when the vagus nerve becomes infected, with this infection constantly triggering sickness behavior in the brain, leading to all the symptoms of ME/CFS. Sickness behavior symptoms are defined as the mental and physical symptoms you experience when you come down with a nasty acute infection, like the flu, and these are very similar to ME/CFS symptoms.

The vagus nerve is known to be the main trigger and mediator of sickness behavior (the trigeminal nerve can also trigger sickness behavior), so it is not inconceivable that a physical dysfunction in these nerves might contribute to sickness behavior or ME/CFS symptoms.


Some time ago I came across this interesting story of an individual who was diagnosed with probable ME/CFS, but was cured using nothing more than dental appliances to realign her jaw (these appliances correcting her dysfunctional temporomandibular joints). This individual is a cancer researcher, so certainly we can assume her account is scientifically precise and accurate (although note that she may have had a condition other than ME/CFS). I speculate that her symptoms may have been due to a trapped or squeezed trigeminal nerve or vagus nerve in jaw area, and the jaw realigning fixed this, so that her symptoms disappeared.

The doctor who performs this jaw realignment to treat conditions such as ME/CFS, MS, IBS and migraines is Dr M Amir of Putney, London. Dr Amir is a dental surgeon.

Dr Amir says that aligning the atlas vertebra alone with not solve the problem, because a major part of the misalignments is to be found in the jaw. The jaw must be realigned first. Dr Amir says "The required change in the jaw is often much greater and needs long term treatment while the Atlas is corrected in one short visit."

A thread about Dr Amir's jaw / atlas realignment treatment can be found HERE. Dr Amir himself also comments on that thread; some posts made by Dr Amir are the following:

Post by Dr Amir, December 2011:

I am extremely grateful for the keen interest that many of you have shown in this concept. I have been working on this subject ever since I managed to heal my first patient of migraine some 30 years ago.

To understand this concept one has to accept that our bodies are as finely tuned as a finely made clock. If anything goes even slightly wrong with the mechanism of the clock it will not give the correct time. Another analogy I often quote is a motor car where the tyres, if not perfectly balanced, will eventually show wear on one edge needing replacement.

Our bodies are exactly the same. A slight asymmetry and eventually the damage starts causing pain somewhere in the body. Some other organic disturbances also develop like IBS/IBD.

A conglomeration of symptoms eventually are classed as different illnesses e.g. Fibromyalgia where patients exhibit certain areas with extreme pain and Multiple Sclerosis where some patients can have up to 40 symptoms.

You may be surprised to learn that these illness names are a figment of the imagination and have no bearing on reality. Many patients suffering from Chronic Fatigue Syndrome (CFS) are classified as such until they start getting some head symptoms like Optic Neuritis. This is when the patient is referred for an MRI scan and if some plaques are found in the brain the doctor exclaims with extreme glee that he has at last discovered what is wrong with the patient. It is not CFS it is MS! However medicine has neither an answer for CFS nor for MS (Except perhaps CCSVI where the jury is still out). The patient also very often takes a sigh of relief that at last the illness has been recognized not realising that they are in as much of a limbo as they were before and perhaps worse.

What has really gone on is that no effective treatment was provided for the earlier symptoms and matters have gotten worse akin to the tyre of a car eventually wearing out.

A visit to the Chiro or an osteopath will nearly always show that one leg is clinically shorter than the other. Correcting the Atlas immediately and permanently corrects the short leg. This would abate hip pains, sciatic nerve pains, numbness etc for a majority of the patients. If we are talking about MS patients you can just imagine the benefit many would experience from this PHYSICAL correction. Claiming that the previous hip pains were the consequence of demyelination becomes questionable as the patient often shows immediate relief.

Moving on from the hips to the head and neck and trying to answer your question please visualise the following:
I want you to imagine a perfectly shaped head for example that belonging to one of the great athletes like Usain Bolt or Mark Spitzer (a swimming legend). If such a head was balanced on a spike it would have to sit on a certain place on the spike to balance. If we now go and extract just one small tooth out of the patients mouth that head is not going to balance anymore and will need to be repositioned on the spike.

In life it is not a spike but our neck vertebrae which support the head. These vertebrae will have to compensate to balance the head. They compensate by realigning as best as they can. In other words they rotate and distort. Since the damage to the mouth is permanent they have to remain distorted permanently often affecting the nerves that emanate from the spine.

The body is built to gain symmetry all the time. The brain and other reflex mechanisms built into our neurology do not like the vertebral misalignment and contract various muscles to straighten the vertebrae and the head. Since the damage is permanent the messages to the muscles to contract are permanent. Fatigue and pain sets in. Over a long period the discs bulge, spurs grow and a whole host of problems like chronic neck pain and a frozen shoulder etc. develop.

The Atlas vertebrae appears to be misaligned in a majority of patients and its asymmetry appears to also depend/cause the asymmetry of the teeth and jaws. In other words they are interdependent. Correcting the teeth helps correct the Atlas and correcting the Atlas improves the jaw. The required change in the jaw is often much greater and needs long term treatment while the Atlas is corrected in one short visit.

Damage to the jaws are not from a single tooth extraction. It can be from a number of teeth extracted for various reasons which causes far bigger distortions of the neck.

Poor development of the jaws due to dietry effects and genetically missing teeth also eventually cause serious health issues. Please read the article on the previous page.

The treatment required is not to the neck which is showing secondary changes but to the mouth to improve matters.

I have tried to keep it simple and I hope this answers your enquiry.

Post by Dr Amir, December 2011:

Any malfunction of the jaw is called Temporo-mandibular Joint Dysfunction. or TMD.

TMJ pain and tooth grinding occur because the patients’ jaw does not sit happily in the joint which articulates with the skull causing clicking and pain. It is the consequence of a physical asymmetry in the jaws and teeth and the mismatch of the upper and lower jaw relationships. It is not caused by "stress" nor is it due to some other "mental" cause.

The physical impediment of poorly developed teeth stop other muscles around the head from finding a balance to which the brain responds and continuely fires messages to the muscles which finally fatigue and become very painful.

The ramifications of jaw asymmetry continue to spiral down the body affecting organ function and skeletal function with pain and symptoms arising anywhere and everywhere.

The Atlas plays a part in the asymmetry of the jaw but correcting the Atlas alone does not correct the jaw or can correct the jaw in entirety. Repeated adjustments to the Atlas, I would consider, unwise. It normally corrects in one go and remains so until a patient suffers a serious accident or a fall.

I would think, though, that cases in which jaw realignment for a temporomandibular joint dysfunction leads to significant clinical improvements in chronic diseases like ME/CFS, MS, IBS and migraines are comparatively rare.

 

[Gingergrrl]

@Hip, Incredible articles and I have a few questions!

1) How does a doctor test if someone has an infection in their Vagus nerve (or is that possible?)
2) If there is Vagus nerve infection, do anti-virals treat it? (assuming you identify correct pathogen)
3) With the atlas nerve/jaw theory, would this only apply to people with TMJ (which I do not have.)

Thanks in advance!

 

[Tired of being sick]

Well, this man is working as a carpenter, so this is something he would do on his spare time.

Whoa

 

[Hip]

@Hip, Incredible articles and I have a few questions!

1) How does a doctor test if someone has an infection in their Vagus nerve (or is that possible?)
2) If there is Vagus nerve infection, do anti-virals treat it? (assuming you identify correct pathogen)
3) With the atlas nerve/jaw theory, would this only apply to people with TMJ (which I do not have.)

(1) This vagus nerve infection idea is a very interesting hypothesis, and lots of researchers are excited by it, but it is not yet proven. It requires evidence to back it up. I understand the only way to test if the vagus is infected is during a postmortem, so only postmortem studies can confirm or deny the hypothesis. I don' think there is a way of testing it in a living patient.
(2) Michael VanElzakker explains in his paper that antivirals have poor penetration into peripheral nerves, so this means if ME/CFS were caused by a vagus nerve infection, then antivirals would struggle to reach the infection site in that nerve.
(3) I presume so, but not really sure.

 

[Sushi]

@Gingergrrl43 @Hip

It is possible to test vagus nerve functioning, however. Yet it wouldn't be possible to link dysfunction to a specific cause, like an infection. There have been some (I knew such a person) who, when a vagus nerve stimulator/pacer (not the correct word!), was implanted, either temporarily (think wires coming out the mouth! ), or surgically, found that the majority of their symptoms resolved. There have also been some who got worse, hence the wires out the mouth approach.

Sushi

 

[Gingergrrl]

(1) This vagus nerve infection idea is a very interesting hypothesis, and lots of researchers are excited by it, but it is not yet proven. It requires evidence to back it up. I understand the only way to test if the vagus is infected is during a postmortem, so only postmortem studies can confirm or deny the hypothesis. I don' think there is a way of testing it in a living patient.
(2) Michael VanElzakker explains in his paper that antivirals have poor penetration into peripheral nerves, so this means if ME/CFS were caused by a vagus nerve infection, then antivirals would struggle to reach the infection site in that nerve.

@Hip Since many people on PR (and elsewhere) with ME/CFS have been helped by anti-virals and you said that av's do not penetrate the Vagus nerve, does that somewhat disprove this theory in your opinion? I do not have enough of a science background to give an opinion!

@Gingergrrl43 @Hip

It is possible to test vagus nerve functioning, however. Yet it wouldn't be possible to link dysfunction to a specific cause, like an infection. There have been some (I knew such a person) who, when a vagus nerve stimulator/pacer (not the correct word!), was implanted, either temporarily (think wires coming out the mouth! ), or surgically, found that the majority of their symptoms resolved. There have also been some who got worse, hence the wires out the mouth approach.

@Sushi Is there a way to test Vagus nerve functioning outside of implanting a stimulator? I have known of people who did this (VNS) both for epilepsy and for depression but never heard of it in ME/CFS!

 

[IreneF]

Sometimes the people offering treatment are not after our money they are after power or something else entirely like sex. I've met people who like the idea that only they can offer something spectacular that will heal me. In my experience these have either been psychopaths or deluded. I count these are scams because they want something of me. Sometimes it is "only" further verification of how special their talents are. The story you are being sold has the hallmarks of this for these reasons

1. You are being offered something scarce and very special indeed (read Vietnam forest etc)
2. You are being offered a cure (and a 100%)
3. There was a young vulnerable family member involved (read Munchusans or child abuse)
4. The person has a simple job, not much money and not much power (i.e. they are not just a humble carpenter but a superhero)
5. The person wants you complete in their power (you must dedicate your time to this and give up everything else)
6. The facts cannot be verified (i.e. there will be no test results on the child or the other people "cured")
7. Near death is mentioned for the child (this person gets off on death and should be avoided)
8. He / they have hooked you in with the "scarcity", too busy really to treat you but on reflection now going to do it. Has treated many in the past. now too busy but suddenly free

So, if it sounds too good to be true it is.

This is a very dangerous situation. Please consider how this person has gained access to you and how family members have been duped. Also please consider what has happened/is happening to the miraculous child.

It does hurt to think how these things happen in family. I have one myself in my extended family. She could cure cancer and her partner believes in her. It doesn't end well for the children or anyone duped by their lies.

You will need your eyes open to counteract the pressures that will be put on you now as they try to weave a web using your more gullible family members to hook you in.

Excellent analysis.

 

[Sushi]

...

@Sushi Is there a way to test Vagus nerve functioning outside of implanting a stimulator? I have known of people who did this (VNS) both for epilepsy and for depression but never heard of it in ME/CFS!

My autonomic doctor tested it during the TTT--but he did so many sub-tests that I am not sure how he determined vagus nerve function, or in my case dys-function! And yes, autonomic specialists do think that the vagus nerve is often involved in our problems.

Sushi

 

[IreneF]

Fantastic post, @ukxmrv. Very psychologically insightful.

There was another carpenter who also began an alternative healing and spiritual career, and also asked his acolytes to drop everything and focus purely on his teachings. He ended up founding a major religion. Had a bit of trouble with the Romans, though...

I agree with ukxmrv that there does seem to be a bit of a charismatic leader faith healer format to this treatment.


Perhaps one way to ascertain whether his treatment is for real or not is to ask him if you could contact a few of the 40 to 50 ME/CFS patients he says he has cured. Most ME/CFS patients will be very happy to detail their story of remission or cure, so by communicating with these treated patients, you might get a better idea of how authentic the treatment is.


Though it is an interesting idea that a squeezed nerve, or perhaps squeezed lymph channel draining the cerebrospinal fluid, in the neck might exacerbate the symptoms of ME/CFS.

If you are familiar with Michael VanElzakker's vagus nerve infection hypothesis for ME/CFS, you will be aware that VanElzakker suggests that ME/CFS arises when the vagus nerve becomes infected, with this infection constantly triggering sickness behavior in the brain, leading to all the symptoms of ME/CFS. Sickness behavior symptoms are defined as the mental and physical symptoms you experience when you come down with a nasty acute infection, like the flu, and these are very similar to ME/CFS symptoms.

The vagus nerve is known to be the main trigger and mediator of sickness behavior (the trigeminal nerve can also trigger sickness behavior), so it is not inconceivable that a physical dysfunction in these nerves might contribute to sickness behavior or ME/CFS symptoms.


Some time ago I came across this interesting story of an individual who was diagnosed with probable ME/CFS, but was cured using nothing more than dental appliances to realign her jaw (these appliances correcting her dysfunctional temporomandibular joints). This individual is a cancer researcher, so certainly we can assume her account is scientifically precise and accurate (although note that she may have had a condition other than ME/CFS). I speculate that her symptoms may have been due to a trapped or squeezed trigeminal nerve or vagus nerve in jaw area, and the jaw realigning fixed this, so that her symptoms disappeared.

The doctor who performs this jaw realignment to treat conditions such as ME/CFS, MS, IBS and migraines is Dr M Amir of Putney, London. Dr Amir is a dental surgeon.

Dr Amir says that aligning the atlas vertebra alone with not solve the problem, because a major part of the misalignments is to be found in the jaw. The jaw must be realigned first. Dr Amir says "The required change in the jaw is often much greater and needs long term treatment while the Atlas is corrected in one short visit."

A thread about Dr Amir's jaw / atlas realignment treatment can be found HERE. Dr Amir himself also comments on that thread; some posts made by Dr Amir are the following:






I would think, though, that cases in which jaw realignment for a temporomandibular joint dysfunction leads to significant clinical improvements in chronic diseases like ME/CFS, MS, IBS and migraines are comparatively rare.

This TMJ thing is poppycock. I've got it. It causes earaches, sore jaw, headaches. I treat it with a night guard. No more earaches, sore jaw, headaches (of that sort).

Nerve damage affects what's away from the center. So if you have a pinched nerve in your shoulder, you might feel it in your arm and hand, but not in your ribs.

My feet now--completely different story. They're floppy and flat. I get pain not so much in my feet but in my legs, knees, and back, due to the fact that their foundation is inadequate.

 

[optimist]

If one peels of all mystic, weird stuff and dig around the purely scientific issues. there might actually be something to this squeezed nerve thing. I haven't been (cap)able to read through all that's been posted, but according to the articles @Hip refers to - having an alignment of the atlas bone and a correction of the jaw could be a possible symptom reliever.

According to the link provided by @khr (yes, that was the guy) and which I have briefly skimmed now, he seem to suggest that there is need of rebuilding some muscles, and a few other things too...

I wonder how this would relate to the Rituximab study?

 

[Gingergrrl]

...
My autonomic doctor tested it during the TTT--but he did so many sub-tests that I am not sure how he determined vagus nerve function, or in my case dys-function! And yes, autonomic specialists do think that the vagus nerve is often involved in our problems.

@Sushi I know there are no autonomic specialists in my area (as we've already discussed this!) but did yours recommend any treatment or suggestions after determining that you had vagus nerve dysfunction? All of my doctors agree that I have autonomic dysfunction with varying degrees of BP dropping when I stand and tachycardia/POTS stuff. But other than Beta blocker & Florinef, no other real suggestions.