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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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ME caused by squeezed nerve?

Discussion in 'General ME/CFS Discussion' started by optimist, Jul 21, 2014.

  1. Hip

    Hip Senior Member

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    So are you saying that that Uzma Qureshi's cure from her probable ME/CFS illness through TMJ treatment was just imagined? To me it would not seem inconceivable that, in some small subset of patients with ME/CFS or ME/CFS-like conditions, their illness arises from or is exacerbated by some physical dysfunctions of the nerves.

    It should be noted that higher levels of substance P are found in TMJ dysfunction patients. Substance P is released into the cerebrospinal fluid when the trigeminal nerve (which runs through the lower jaw) is stimulated.

    Substance P is also found raised in the cerebrospinal fluid of fibromyalgia patients, and may be driving the symptoms of fibromyalgia. Substance P stimulates pain receptors in the body.

    Now since temporomandibular joint disorder is a comorbid condition found in fibromyalgia, it is quite feasible that the substance P released by the TMJ dysfunction may be exacerbating the fibromyalgia, and thus TMJ treatment may lead to some remission from fibromyalgia.
     
    Last edited: Jul 22, 2014
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, he treated me for several years (until I left that city) but the meds he used were tailored to my test results and couldn't be taken as general treatment guides for dysautonomia. I don't have POTS, beta blockers aren't suitable for me--just an example of how individualized treatment has to be.

    About the only things that are right for most dysautonomia patients are more fluids and electrolytes. There are about 15 (off the top of my head) meds that are used in treatment and the wrong one is worse than none at all!

    Sushi
     
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  3. Hip

    Hip Senior Member

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    Those implantable vagus nerve stimulators can work very well for severe depression, I read; and I have always wondered if they could help ME/CFS. The only trouble is that the surgery and the implantable stimulator device will set you back $50,000.

    However, a new cheap, hand-held vagus nerve stimulator called the Gammcore that does not require surgery is soon to become available, and this will be worth trying.
     
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  4. Hip

    Hip Senior Member

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    No, the antivirals can penetrate the vagus, but do so poorly. So according to Michael VanElzakker, this may explain why antivirals can be helpful, but do not cure ME/CFS.

    I think the most interesting aspect of VanElzakker's theory of ME/CFS is not the specifics of vagus infections, but the idea that a chronic low level infections somewhere in the body may constantly induce the state of sickness behavior. Sickness behavior can explain how many the symptoms of ME/CFS arise. This paper compares the symptoms of sickness behavior to the symptoms of ME/CFS, and finds similarities and differences.
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    That is really interesting, Hip. My friend had severe dysautonomia with an onset after being given 4 instead of 3 Hep B vaccinations. The vagus nerve stimulator removed the dysautonomia symptoms nearly instantly.

    Sushi
     
  6. Hip

    Hip Senior Member

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    Wow, that's amazing. I wonder if vagus nerve stimulation might help POTS, which I have.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It might, I wonder about the availability of the units you linked? And the price, and whether a doc could prescribe one for a patient to try without buying, or to use in his/her office?

    Sushi
     
  8. Hip

    Hip Senior Member

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    I think the Gammacore manufacturer is talking about pricing per electrical stimulation dose. The idea is that you would pay for say 300 electrical doses, and the stimulator unit would keep working until you had used up all of the 300 electrical stimulation doses it dispenses. Each stimulation lasts for 90 seconds, and presumably you'd only need to apply these stimulations a few times throughout the day. So I imagine the device itself will be cheap, and they will make money when people charge up the device with additional doses. I read this in this article about the Gammacore VNS device.

    You apply the Gammacore device to the jugular vein area of your neck, where you can feel the pulse. The vagus nerve runs through this zone. You are supposed to do this only on the right side of the neck, not the left side (because stimulating the left side vagus nerve may have some untoward effects on the heart).
     
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  9. stevesayshi

    stevesayshi

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    CMX001 is lipophilic; i.e. it is drawn to fats. It crosses the blood brain barrier readily. I imagine it would have some effects on the peripheral nerves, too. It is "only" effective against herpes virus / double stranded viruses, though I imagine knocking those out would enable one's immune system to handle e.g. enteroviruses more readily. I found the typical "viral half life" under antiviral treatment is about a year.

    The vagus nerve idea is promising, though I wonder if it is more often a problem due to the gut-vagus connection.
     
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  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Hip
    Leave it to medical device manufacturers to invent creative pricing! It sounds interesting but also something to be a bit cautious of. I won't be first in line!

    Sushi
     
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  11. WillowJ

    WillowJ Senior Member

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    I think it would be like any other physical/ manual/ chiropractic/ etc therapy: some people would get some benefit, and some would not (or would feel worse).

    I would think it would be a bad idea to go to someone who treated necks on the side. Pretty sure the normal way to do this is with compressed sound. Here's a description:
    http://forums.phoenixrising.me/index.php?threads/chiropractic-treatments-need-advice.12751/

    (apologies if that's already been posted, as I've not read the entire thread)

    Ps, I think there is one published study on this in CFS
     
    Last edited: Jul 23, 2014
  12. Wayne

    Wayne Senior Member

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    Below is a part of a post I did on another thread regarding some of my experiences after getting an Atlas Profilax treatment (which I believe Optimist's original post was referring to). I believe my atlas "repositioning" released a lot of pressure on my cranial nerves, especially my vagus nerve. Thought it was pertinent to this thread because of the ongoing discussion about vagus nerve issues.
    ---
    Here’s what I believe happened. The 12 major cranial nerves exit the brainstem through the opening in the atlas. If the atlas is out of alignment, these nerves can become impinged, and nerve flow to the rest of the body is inhibited. The vagus nerve is the longest of the cranial nerves, traversing through the TMJ, through the thyroid, the heart, stomach, GI system, and ending in the colon. If these organs/areas aren’t receiving enough nerve energy because of a crimped vagus nerve, they’re not going function properly or efficiently.

    Here’s my theory as to why some people notice significant improvements from AP, and others don’t. — The opening in the atlas through which the cranial nerves go through is different in size from one person to the next. If the opening is large, the atlas can be out of alignment by quite a bit without impinging on the cranial nerves. If the opening is small, only a small alignment can cause significant cranial nerve dysfunction. — A former NFL football player was temporarily paralyzed from a rather insignificant blow, and it was determined that the opening in his atlas was much smaller than normal, which significantly raised his potential for a serious injury. He promptly retired.

    I feel certain most, if not all of my cranial nerves became impinged from a serious head injury/whiplash I experienced at age 15, which corresponded with the decline in my overall health. I am even more certain that at least my vagus nerve was majorly impacted. To have all this pressure relieved from a single treatment felt almost miraculous to me. I can easily see why others wouldn’t have a similar experience, because even if they had a seriously misaligned atlas, they may not have had seriously crimped nerves. The following is a list of improvements I jotted down a few months after receiving my AP treatment in the summer of 2007:
    ...............................................................

    Symptom Improvements since Atlas Profilax Treatment 7-9-07

    Primarily Neurological Symptom Improvements

    Sensory Overload - 25-50%

    Excessive Neuronal Firing - 25-50% (I feel Perque B-12 is very good for this also)

    Anxiety – 25-50% (Didn’t even fully realize my levels of anxiety until they lessened significantly)

    Vertigo / Neurally Mediated Hypotension – 25-50%

    Environmental Illness (EI) / Multiple Chemical Sensitivity (MCS) – 25-35%

    Cognitive Function / Ability to take make mental notes – 25-35%

    Ability to Organize - 15-20%

    TMJ (Moderate to begin with) - 20%-25%

    Ability to relax – 25-35%

    Severe adrenal exhaustion / dysfunction – approx. 25%

    Sense of Balance – 25-50%

    Sleep – approx. 15-20%

    Primarily Physical Symptom Improvements

    Physical / muscle strength – 25-30%

    Viral overload symptoms – 50-75%

    Digestion – 50%+

    Generalized Pain and Headache reduction - 25-50%

    Detoxification Capabilities – 25-50%

    Postural Corrections, from my neck, down my entire spine to my hips, knees and even feet – I can’t even put a percentage on this – A growing sense of wholeness seems to pervade my entire postural structure. My chest cavity seems to have risen. When I walk these days, I feel like I’m almost gliding.

    Overall energy level – approx. 10-25%

    I feel taller and I am taller by 1/4"-1/2"

    Spiritual/Energetic Improvements of Note

    Overall Sense of Well Being – 25-50% (I especially notice this when I’m walking)

    Greater sense of patience

    Greater sense of rhythm

    Feel less dense, a greater sense of fluidity
     
  13. Wayne

    Wayne Senior Member

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    A brief comment on TMJ issues: I once read that 70% of all the nerve impulses exiting the brain pass through the TMJ. If this area is crimped, it's easy for me to imagine varying degrees of health impairment resulting from inadequate nerve flow to critical areas of the body.
     
  14. ukxmrv

    ukxmrv Senior Member

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    I don't think that it is a question of "peeling away the mystical stuff" - that's another important part of the scam that hooks one in.

    All the best scamsters who have claimed to be able to cure me have all had a hook that involves something plausible. It's part of the spiel. There needs to be something that sounds scientific or has a possibility there for the best ones to appeal to those of us who have done our homework. We are the more desirable victims. More of a challenge.

    We say "OK he might be a bit flaky but he could be on to something under neath it all". It really hits after when we realise it is a scam. Not only did we go with the treatment but we didn't listen to our inner voice.

    I'm speaking as well as someone who went though all the TMJ stuff in the 80's as well and got fleeced. Saw it happen to others in my support group.
     
    Last edited: Jul 23, 2014
  15. adreno

    adreno 3% neanderthal

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    Wouldn't a TENS or similar device possibly work for this, if placing the electrodes correctly?
     
  16. lnester7

    lnester7 Seven

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    @adreno You cannot use TENs Above the neck???? (or at least mine has those instractions)...
     
  17. Hip

    Hip Senior Member

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    I think the problem with your average TENS unit is that it uses DC current or low frequency (less than 300 Hz) AC current, and this apparently is not good for deeper penetration. You need higher frequency AC (several kHz) for good skin penetration. A strong enough DC current causes pain and irritation as it passes through the skin, but higher frequency AC can pass through the skin without eliciting pain, due to a capacitance effect of the skin which passes the current more easily.

    If you look at this brochure, the Gammacore appears to use a 5000 Hz AC current, which is pulsed into short bursts — ie, pulsed current (PC); and a peak to peak voltage of up to 48 volts. I believe the reason pulsed current is used is also related to the skin capacitance effect. There is some info on the rationale for using pulsed alternating current in this paper.
     
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  18. Hip

    Hip Senior Member

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    CMX001 sounds like a promising candidate.

    The actual reasons that antivirals are much less effective for infections within nerve ganglia are listed in this post.

    Another issue is working out what virus might be infecting the vagus nerve. It could be an enterovirus rather than a herpes family virus, in which case all the herpes antivirals are not going to be much use. Dr Chia says that enterovirus infections in the stomach can enter into the vagus nerve (as this nerve innervates the stomach), and it then takes just three days for the enterovirus infection to travel the entire length of the vagus nerve, from stomach to brain (and it may then enter the brain too). Chia found 82% of ME/CFS patients have enterovirus infections of the stomach, so enterovirus infections would be a prime suspect for a vagus nerve infection in ME/CFS.
     
    Last edited: Jul 23, 2014
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  19. Asklipia

    Asklipia Senior Member

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    I found this about vagus nerve stimulators, where it says that the Gammacore stimulates both sympathetic and parasympathetic, hence a problem :
    Neurostimulation Devices in Migraine treatment.
    I notice there is a Thai doctor interested, from the land of MSG and glutamate problems.
     
  20. Hip

    Hip Senior Member

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    That link does say that the Gammacore stimulates both sympathetic and parasympathetic, but I don't think that can be correct, for the following reason:

    Most of the parasympathetic nervous system runs through the vagus nerve, and the vagus lies not far beneath the skin in the neck, hence the vagus will be easily reached and stimulated by an electrical current passed through the skin of the neck. (The vagus nerve is the only nerve running from the head to the rest of the body that lies outside the spine).

    By contrast, all of the sympathetic nervous system runs through the spine, which is encased in bone and is deeper inside the neck, and will thus presumably much more be protected from this electrical current passed through the skin.

    The Vagus Nerve Running Outside The Spine, Through The Neck
    Vagus Nerve in Head and Neck.jpg


    The Parasympathetic (Left) and Sympathetic (Right) Nervous Systems
    sympatheticandparasympatheticnervoussystem.jpg
    In the above diagram, note how most of the parasympathetic nervous system
    runs through the vagus nerve and the cranial nerves, with only a tiny part of the
    parasympathetic running through the spine (this part exits at the very bottom of
    the spine, in the sacral nerves); by contrast, all of the sympathetic nervous system
    is routed through the spine.
     
    Last edited: Jul 23, 2014
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