84 replies to this topic

[dk2011]

@Stinkorninjor I spent years where Ashwagandha would instantly make the sensitivities go away.  And where Chamomile would instantly bring them back.  I'm talking with a few minutes or less.  I'm still confident that on PubMed or similar studies there is a direct set of receptors or a chemical that Ashwagandha was up-regulating while Chamomile is down-regulating (although both only lasted while they were in my system aka 24 hours).  Have we found an explanation for this phenomenon?

 

Kynurenic acid as an Antagonist of α7 Nicotinic Acetylcholine Receptors in the Brain: Facts and Challenges

https://www.ncbi.nlm...les/PMC3721521/

 

Hypothetically if something like α7 nAChRs are the cause, it seems like taking Tryptophan by way of Kynurenic Acid might be a possible way to reverse this?  (5-HTP never benefited me at all though).  When I say endogenous, for example, I used to be 1,000'x sensitive to herbs & medicines, but I was never sensitive in the same way to substances like Magnesium, CoQ10, things like that.

 

 

 

So... reversing this state might not mean much, since you'll still have a form of dysautonomia - all sorts of things could trigger something similar or equally bad, or even the same thing, again.

 

 

At least some of the states mentioned in the article, which causes Dysautonomia, are highly, highly hereditary - Fibromyalgia in particular, is proven to be familial. You need to consider that you were born with a malfunctioning immune system, and then take steps to permanently keep it in check.

 

 

I agree that I will still have the root disorder that I have now.  My goal is to find which substance will reverse what messed me up.

 

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Edited by dk2011, 14 December 2017 - 04:47 PM.

[dk2011]

 

Looks like you are really a glass half empty guy indeed...

 

 

...You may want to try those various treatments, see what works, and report back.

 

 

I'm trying not to be confusing, since I desperately need help.  But I can't tolerate medicines the right way.  It's as if I'm so UN-sensitive at this point that meds do the opposite in many cases.

 

I had an extensive set of autonomic nervous system tests recently for Dysautonomia including:

• Sudomotor (Postganglionic Sympathetic) test
• Cardiovagal (Parasympathetic) test
• Valsalva test
• Vasomotor (Sympathetic) tilt table test
• Pupillometry (Parasympathetic) test

 

The findings:  Essentially normal autonomic function tests.  Borderline sweat volume at a single site in isolation does not likely have clinical significance.  Autonomic testings was otherwise normal. 

 

However, I have found countless people with self-described "CFS" or "Dysautonomia" with extreme sensitivities to meds like me (or like I used to before the Choline stuff).

Edited by dk2011, 14 December 2017 - 05:18 PM.

[dk2011]

So based on PubMed articles and what we now know about those substances, is there any consensus so far that would explain my chart?  To explain why these substances were doing what they were doing?

 

 

Edited by dk2011, 14 December 2017 - 05:25 PM.

[Mind_Paralysis]

So based on PubMed articles and what we now know about those substances, is there any consensus so far that would explain my chart?  To explain why these substances were doing what they were doing?

 

 

I'll break it down, sorry if I was unclear earlier, should probably have done this - all of the things you list? They alter cholinergic signalling - acetylcholine, which is what nACH-7 receptors respond to, is created from choline.

 

Agonists-

------------

ASHWAGANDA:

Agonises acetylcholine-signalling.

Cholinesterase inhibiting withanolides from Withania somnifera.

https://www.ncbi.nlm...pubmed/15520512

 

(prevents choline from breaking down)

 

 

CDP-CHOLINE *AND* CHOLINE BITARTRATE:

Agonises acetylcholine-signalling - PERMANENTLY.

 

 

Antagonists-

----------------

CHAMOMILLE:

Antagonises acetylcholine-signalling.

(nACH-alpha-7 to be specific - the part that controls your immune system.)

 

 

CHOLINE ELIMINATION-DIET:

Antagonises acetylcholine-signalling - PERMANENTLY.

 

 

This is why I want you to stop eating choline for a few weeks at least - it could actually have an effect, on your current symptoms.

But eventually you're going to need to get back to it, otherwise you'll swing back - I'm not sure you can feasibly control this by switching up your diet constantly, because the changes with diet would take time, and it would be way easy to swing too far in one direction - I honestly think the way to solve everything permanently is to be able to swing faster, and more accurately - with set of two compounds: one to agonise alpha-7, and one to antagonise.

 

They'll have to be very specific too, no other actions, since you respond to oddly to anything that hits anything.

Edited by Stinkorninjor, 14 December 2017 - 07:54 PM.

[nickthird]

I don't mean to insult you but your descriptions are not consistent and don't behave like a disorder would. Rather they are very consistent with OCD/Anxiety or some other related disorder.

You predict how things will effect you and they do just that. The effects are not even possible in some cases - stuff in your shampoo would not hit the brain at all or in the given time frame. You say the effects you feel are just like what the herbs are described to do in the body... No, no, I am 95 percent sure all these effects are imaginary. It is real for you of course, I believe you experience them just as if they were real, but it is extremely unlikely that they are.

[dk2011]

I don't mean to insult you but your descriptions are not consistent and don't behave like a disorder would. Rather they are very consistent with OCD/Anxiety or some other related disorder.

You predict how things will effect you and they do just that. The effects are not even possible in some cases - stuff in your shampoo would not hit the brain at all or in the given time frame. You say the effects you feel are just like what the herbs are described to do in the body... No, no, I am 95 percent sure all these effects are imaginary. It is real for you of course, I believe you experience them just as if they were real, but it is extremely unlikely that they are.

 

This whole problem started over 18+ years ago with me randomly having extremely unusual symptoms that always varied.  I don't mean anxiety symptoms at all.  My family and I had to literally BACK-TRACK at the time and retrace my steps to see everything I had done right before it started.  EVERY...SINGLE...TIME... it was directly explained by something with an herbal extract in it that ended up directly explaining the symptoms once we looked it up.  Every time.

 

No offense, but people with your mindset are the reason why almost 2 decades ago when my family and I were bouncing from doctor to doctor to try to get help, our biggest obstacle was getting doctors to believe us.  The close-mindedness of people such as yourself was the reason my family and I were completely abandoned by the medical community at the time from getting help that I desperately needed.  Of course, you would have no idea what that was like.

 

To further prove my point about small amounts of substances....

 

• Scientists differ about the relative toxicities of substances, but they seem to agree that botulinum toxin, produced by anaerobic bacteria, is the most toxic substance known. Its LD50 is tiny – at most 1 nanogram per kilogram can kill a human. Extrapolating from its effect on mice, an intravenous dose of just 10^-7g would be fatal to a 70kg person.

 

Not that I ever reacted adversely to Botox...  My point is that the tiniest amount of a substance CAN affect the human body, not to mention if you have a rare disorder involving nervous system receptors.

[nickthird]

If it were in fact caused by herbal extracts then you'd get a much worse response with most medicine, as most medicine is plant sourced and very highly concentrated. Yet you didn't report anything like it.

There is hardly any time when you are not in contact with herbs, cotton for example... That's like saying my symptoms start when I breathe air and I can back trace every time to a point where I breathed it.

[dk2011]

 

I'll break it down, sorry if I was unclear earlier, should probably have done this - all of the things you list? They alter cholinergic signalling - acetylcholine, which is what nACH-7 receptors respond to, is created from choline.

 

 

@Stinkorninjor It sounds like you are so spot on!!!!   Thank you so much!  I'm honestly excited at your discovery.  I hope I'm not getting excited too soon, because I've been wrong before with different theories.

 

 

Here's the thing though... I am having a difficult time with the concept of simply "too much acetylcholine," because as you've said, this is very specific to α7 nAChR's.  In a normal person without this disorder, the body instantly has a way to readjust when a7 nAChR's are over-active or under-active.  For example, Chamomile used to work within minutes to bring back my sensitivities.  I'm convinced the body has an endogenous substance to normally re-establish homeostasis when they are over-active.  We know that CDP-Choline is an endogenous α7 nAChR agonist.  There has to be something in the body that causes the opposite, doesn't there?  Are there any endogenous α7 nAChR antagonists that come up on PubMed or elsewhere?

[dk2011]

If it were in fact caused by herbal extracts then you'd get a much worse response with most medicine, as most medicine is plant sourced and very highly concentrated. Yet you didn't report anything like it.

There is hardly any time when you are not in contact with herbs, cotton for example... That's like saying my symptoms start when I breathe air and I can back trace every time to a point where I breathed it.

 

I was just as sensitive to medicines as I was to herbs at the time.  If I cut up tiny pieces of prescriptions, I still had exaggerated effects at the time.

 

I never reacted to cotton.  Cotton fiber does not have any medicinal effects.  You are confusing that with the cotton flower.

[nickthird]

So basically you are saying you are sensitive to any chemicals (you said all medicine) no matter what dosage the average person needs for an effect, your receptors are all for all the different kinds that there are responding to minute concentrations of chemicals...

Okay do a blood test see if the chemicals in your blood are 1 thousandth of what they should be. You can even do it for serotonin. If you are that sensitive and your levels are all abnormality low, the doctors will hospitalize and treat you for sure!

[dk2011]

So basically you are saying you are sensitive to any chemicals (you said all medicine) no matter what dosage the average person needs for an effect, your receptors are all for all the different kinds that there are responding to minute concentrations of chemicals...

Okay do a blood test see if the chemicals in your blood are 1 thousandth of what they should be. You can even do it for serotonin. If you are that sensitive and your levels are all abnormality low, the doctors will hospitalize and treat you for sure!

 

 

When I was sensitive, it was only to medicines.  I wasn't particularly sensitive to things like Magnesium, Calcium, Potassium, etc.

 

When you take Tribulus extract, for example, it doesn't actually contain luteinizing hormone...  You know this right?   It contains Saponins which instruct your body to product luteinizing hormone and testosterone via stimulating specific nerves in the ANS.

[nickthird]

Unless you were only sensitive to psychiatric medicine, almost any medicine you take should have a noticeable effect on blood levels of some chemical.

[dk2011]

 

I'll break it down, sorry if I was unclear earlier, should probably have done this - all of the things you list? They alter cholinergic signalling - acetylcholine, which is what nACH-7 receptors respond to, is created from choline.

 

Agonists-

------------

ASHWAGANDA:

Agonises acetylcholine-signalling.

Cholinesterase inhibiting withanolides from Withania somnifera.

https://www.ncbi.nlm...pubmed/15520512

 

(prevents choline from breaking down)

 

 

CDP-CHOLINE *AND* CHOLINE BITARTRATE:

Agonises acetylcholine-signalling - PERMANENTLY.

 

 

Antagonists-

----------------

CHAMOMILLE:

Antagonises acetylcholine-signalling.

(nACH-alpha-7 to be specific - the part that controls your immune system.)

 

 

CHOLINE ELIMINATION-DIET:

Antagonises acetylcholine-signalling - PERMANENTLY.

 

 

@Stinkorninjor Please see my other message above.  In the meantime, I've updated my chart.

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[Mind_Paralysis]

 

 

I'll break it down, sorry if I was unclear earlier, should probably have done this - all of the things you list? They alter cholinergic signalling - acetylcholine, which is what nACH-7 receptors respond to, is created from choline.

 

 

@Stinkorninjor It sounds like you are so spot on!!!!   Thank you so much!  I'm honestly excited at your discovery.  I hope I'm not getting excited too soon, because I've been wrong before with different theories.

 

 

Here's the thing though... I am having a difficult time with the concept of simply "too much acetylcholine," because as you've said, this is very specific to α7 nAChR's.  In a normal person without this disorder, the body instantly has a way to readjust when a7 nAChR's are over-active or under-active.  For example, Chamomile used to work within minutes to bring back my sensitivities.  I'm convinced the body has an endogenous substance to normally re-establish homeostasis when they are over-active.  We know that CDP-Choline is an endogenous α7 nAChR agonist.  There has to be something in the body that causes the opposite, doesn't there?  Are there any endogenous α7 nAChR antagonists that come up on PubMed or elsewhere?

 

 

No, there are no known antagonists of Choline or Acetylcholine.

 

I just realized that I was incorrect in my previous statement, because I just realized that there ARE endogenous antagonists...! Most famously, kynurenic acid is a antagonist at the NMDA-receptor sites, which are instead agonised by Glutamate.

 

That's the only endogenous antagonist I know of though... Antagonists are, for apparently evolutionary reasons, much more rarely occuring in our bodies - usually there's instead INdirect antagonism - signalling is decreased through feedback-loops - Norepinephrinergic Alpha-2-receptors antagonise cAMP activity, for instance. Choline and Dopamine has a semi-antagonistic relationship - there's also auto-receptors, like I said, when they are activated, they cause a feedback-loop which shuts down activity from other receptors in the same group.

 

(alpha-2-receptors are actually also auto-receptors for Norepinephrine, and cause decreased NE-release, leading to indirect antagonism at other NE-receptors, since there'll be less NE to activate them)
 

 

--EDIT while writing --

 

Wait... I'm a dummy... I forgot! Right... KYNA - Kynurenic Acid - is also an antagonist of alpha-7-receptors! That's another aspect of why it's bad when it's increased in Schizophrenia - it causes cognitive issues for schizo's, while the NMDA-antagonistic effects causes the hallucinations and delusions!

 

God-damn, I actually forgot...!

 

Kynurenic acid as an Antagonist of α7 Nicotinic Acetylcholine Receptors in the Brain: Facts and Challenges

https://www.ncbi.nlm...les/PMC3721521/

(I recommend you read the entire article - the info is hella' solid.)

 

Reading about it... It doesn't seem clear-cut though... it's actually not been sufficiently proven, there's no consensus that it actually does that.

 

There's also the fact that KYNA is a hella' dirty weapon! Firstly, it primarily antagonises NMDA-receptors, but that's not all - it hits a multitude of other receptors as well - so there's no telling what it would do to someone with Dysautonomia!

 

However... if you wish to try to raise your endogenous KYNA-levels, there's another complicated dietary approach - like previously mentioned, KYNA is raised by Ketogenic Diet - eliminate ALL carbohydrates, feed exclusively off of fat, and your KYNA will go up, and, hypothetically, start lowering your Alpha-7-mediated signalling.

 

 

I believe there is also a drug in development for the treatment of Alzheimers... it's a prodrug for a compound closely related to KYNA, some variation of kynurenic acid - can't recall the name though. HOWever... That compound is not a 1:1 equivalent to KYNA - it's not certain that it does ALL of the same things - so far, all it's been found to do, is to antagonise NMDA-receptors - that doesn't mean it's also an Alpha-7-antagonist.

[dk2011]

 

 

Choline kinase-alpha by regulating cell aggressiveness and drug sensitivity is a potential druggable target for ovarian cancer

https://www.ncbi.nlm...les/PMC3899765/

 

Acetylcholine as a neuromodulator: cholinergic signaling shapes nervous system function and behavior

https://www.ncbi.nlm...les/PMC3466476/

 

A novel choline-sensitive nicotinic receptor subtype that mediates enhanced GABA release in the chick ventral lateral geniculate nucleus.

https://www.ncbi.nlm...pubmed/11906789

 

Inhibitory actions of bisabolol on α7-nicotinic acetylcholine receptors.

https://www.ncbi.nlm...pubmed/26283025

 

An in silico guided identification of nAChR agonists from Withania somnifera

http://www.tandfonli...69.2016.1207569

 

 

@gamesguru  GREAT CATCH on the nAChR being likely/possibly involved!!  Thank you!

[gamesguru]

is this idea on kynurenic acid, is this why you PMed me about how chamomile is pro-schizotypy?  well it already makes a huge assumption about kynurenic acid.  see the block quote for some contrary evidence

 

you ought to stop weaving your threads of reason so thinly, one need only look at the length of your posts for some discouragement.

 

Serum kynurenic acid is reduced in affective psychosis.

https://www.ncbi.nlm...pubmed/28463241

 

B6 may help metabolize it and control its levels:

 

Effects of vitamin B6 deficiency on the conversion ratio of tryptophan to niacin

Quote

The urinary excretion of kynurenic acid decreased while that of xanthurenic acid increased drastically in the two B6-deficient groups

 

 

I found studies suggesting we may not want to lower levels too drastically.

 

Modulation of striatal quinolinate neurotoxicity by elevation of endogenous brain kynurenic acid

 

nicotinylalanine exerts its effect by increasing levels of endogenous kynurenic acid in the brain. The results of this study suggest that agents which influence levels of endogenous excitatory amino acid antagonists such as kynurenic acid may be useful in preventing excitotoxic damage

 

Nicotinylalanine increases the formation of kynurenic acid in the brain and antagonizes convulsions

antagonism of the NMDA receptors. In fact, NAL antagonized sound-induced seizures and prevented death in DBA/2 mice. Pretreatment of the mice with D-serine (100 micrograms intracerebroventricularly), a glycine agonist and a competitive antagonist of KYNA, completely prevented the anticonvulsive action of NAL. These data suggest that changes in the extracellular concentration of KYNA in the brain are associated with a modulation of NMDA receptor function.

 

The Brain Metabolite Kynurenic Acid Inhibits α7 Nicotinic Receptor Activity and Increases Non-α7 Nicotinic Receptor Expression

 

 

[dk2011]

 

 

That's the only endogenous antagonist I know of though... Antagonists are, for apparently evolutionary reasons, much more rarely occuring in our bodies - usually there's instead INdirect antagonism - signalling is decreased through feedback-loops - Norepinephrinergic Alpha-2-receptors antagonise cAMP activity, for instance. Choline and Dopamine has a semi-antagonistic relationship - there's also auto-receptors, like I said, when they are activated, they cause a feedback-loop which shuts down activity from other receptors in the same group.

 

(alpha-2-receptors are actually also auto-receptors for Norepinephrine, and cause decreased NE-release, leading to indirect antagonism at other NE-receptors, since there'll be less NE to activate them)
 

 

--EDIT while writing --

 

Wait... I'm a dummy... I forgot! Right... KYNA - Kynurenic Acid - is also an antagonist of alpha-7-receptors! That's another aspect of why it's bad when it's increased in Schizophrenia - it causes cognitive issues for schizo's, while the NMDA-antagonistic effects causes the hallucinations and delusions!

 

God-damn, I actually forgot...!

 

Kynurenic acid as an Antagonist of α7 Nicotinic Acetylcholine Receptors in the Brain: Facts and Challenges

https://www.ncbi.nlm...les/PMC3721521/

(I recommend you read the entire article - the info is hella' solid.)

 

 

I found another article saying that there was a study disproving the concept of Kynurenic Acid (KA) being a α7 nAChR antagonist.  I can't find the link at the moment. 

 

• In NORMAL people, if CDP-Choline gets over-produced and the α7 nAChR's get over-activated.... What down-regulates it?  There's got to be a reverse feedback loop somewhere!  Any ideas?

 

• On the Kynurenic Acid hypothesis, I've tried 5-HTP before (which is also supposed to raise KA right?), but I don't remember it helping me at all.  I guess I could try regular Tryptophan instead.

 

Thanks for believing me @Stinkorninjor.  You have no idea what I've been through!!!  This is an extremely difficult problem, because medical professionals wouldn't hear me out and wouldn't believe me!  I shared this α7 nAChR hypothesis with a neurologist I've been seeing.  Hopefully he will give it some thought and not just dismiss it.

[dk2011]

 

is this idea on kynurenic acid, is this why you PMed me about how chamomile is pro-schizotypy?  well it already makes a huge assumption about kynurenic acid.  see the block quote for some contrary evidence

 

you ought to stop weaving your threads of reason so thinly, one need only look at the length of your posts for some discouragement.

 

 

I'm not aware that I PMed you.  When?

 

"weaving your threads of reason so thinly" ---  How do you mean?

 

Also, what are you suggesting I take?  I know that both B6 and the more "active" version P-5-P gave me extreme toxicity and horrific side effects from extremely small doses now that everything in my body is out of wack.  I cannot reattempt B6 supplementation.  Extreme headaches and it gives me pins and needles feeling in my legs.

 

If Nicotinylalanine is a suggestion, what do you suggest I try?  Nicotinylalanine is not available in supplement form.

 

Would Tryptophan work?  I've tried 5-HTP in the past, but it never seemed to help.  Maybe I didn't try it long enough?

Edited by dk2011, 15 December 2017 - 12:43 AM.

[gamesguru]

all that was directed and stinko.

 

hmm idk, but have you tried bacopa, it regulates serotonin and choline?  might be worth a shot

[dk2011]

 

 

Kynurenic acid as an Antagonist of α7 Nicotinic Acetylcholine Receptors in the Brain: Facts and Challenges

https://www.ncbi.nlm...les/PMC3721521/

(I recommend you read the entire article - the info is hella' solid.)

 

 

 

L-Tryptophan

Mood, Relaxation, Sleep

The essential amino acid L-tryptophan helps support relaxation, restful sleep, and feeling better. It plays a part in the synthesis of both melatonin and serotonin, hormones involved with mood and stress response. L-Tryptophan also supports immune functions because it is the body's precursor to the kynurenines that regulate immunity. If needed, L-tryptophan converts to niacin in the body, which supports circulation, a healthy nervous system, the metabolism of food, and the production of hydrochloric acid for the digestive system. Source Naturals L-Tryptophan is extremely pure and is regularly tested to ensure the highest standards of quality.*

 

 

Kynurenines = Kynurenic Acid, correct?  So is this it?  Will L-Tryptophan work?  I swear I just read a study that confidently refuted this claim, but I lost the link.

[ablainey]

Ive had a similar problem with extreme reactions to innocuous substances. Ive been hospitalised over a dozen time for reactions to Aspirin in the last 3 years.

All started when I had a tick bite in 2015 and a major heart attack 2 weeks later. Long story short its Lyme disease & unknown coinfections in my case.

 

Cardiolgists, Neurologists, Rhumatologists, Neuro surgeons, Hematologists, 2 Gp's and a physician later: I finally got refered to a Lyme expert. Th irony being my wife had it years before and I was telling everyone I had been bitten and my symptoms were the same as my wifes.!!

 

I found similarly that the effect of meds was often irratic. one day good, the next horrific and almost 180degree to what they should be doing. Through trial and error I found a few things that help. Raw onions helped a lot. also L-methionine. PQQ, Tyrosine, Hemp or fish oils. CoQ10, Taurine, MSM, Glucose, in fact quiet lot of things. mostly anything that helps energy level.

 

I also found bizarly that anything that effected cox1 or 2 had the biggest effect which was a good indicator it was infection related. As for "unique disorder" I can also relate. As I norrowed it down to cox1/2 and the prosteglandins relactions I was convinced I had some odd genetics relating to this and subsiquently found out my mother had a factor V lieden mutation. Which makes sense. this part of the metabolic pathways not only effect blood clotting (thus my heart attack) but also the immune system in general.

 

Anyhooo: forgive the waffling, can't concentrate as doing two things at once. But I woudl recomend testing for Lyme asap. Also for blood clotting disorders wihch are also indication of a *weird* immune system. Mine has alwasy been overactive (read that as very efficient in terms of infection but causes unwanted effects such as eczema). A short course of antibiotics may be useful in diagnosis. I found I felt much better after only a week of Amoxicilin although this is useless if it is Lyme, you will need a much longer course of lymecycline.

 

Try the onions! the sulphate/sulphite pathways have big effects and might be indicative of oportunistic candida. and universal advice: get your gut flora in order. It does wonders regardless of what ails you.

Appologies for the hit and run, as said Busy busy busy! good luck!     

A.

[ablainey]

just to add and sorry this was the most important: Try 800mcg Folinic acid (folic acid) and 1000mg B12 preferably methylcobalamin but cyanocobalamin is also fine.

That should cut through any brain fog/fatigue and a lot of pain within 40mins. I also take Glutathione to help the liver detox.

 

imho the problem could be A kind of herxhiemer reaction. In my case as related directly to Aspirin it would be Reys Syndrome, but still just a specific herx. If it is Lyme you could be triggering the same with the herbs. I have found that Astragalus or turmeric can trigger it. then another day they make me feel better!

It really is bizzare at times and trying to get a medical proffesional to listen is like banging your head against a wall.

 

Coincidentally I had a one off reaction about 20 years ago when I unknowingly had epstien barr. Same reaction to aspirin and all the non descript symptoms. Never had a problem before or since up until the lyme infection. Im personally convinced taht most cases of CFS, fibromyalgia and more than likely alzheimers are lyme or its regular coinfections, but thats a whole different can of worms.

[dk2011]

Thanks for your response ablainey.  I'm still looking into everything you wrote.

 

Hey guys:  Did you see my post above about L-Tryptophan?  Thoughts?

Edited by dk2011, 15 December 2017 - 04:30 AM.

[dk2011]

Post-epidemic eosinophilia myalgia syndrome associated with L-Tryptophan

https://www.ncbi.nlm...les/PMC3848710/

 

That case was Post-epidemic, happened in 2011.  Remember how many people died around 1989-1990 from EMS?  Scary stuff.

 

Thoughts anyone on this whole situation I'm in, this rare disorder I have, and what I should do?

Edited by dk2011, 15 December 2017 - 08:17 AM.

[dk2011]

Sorry to take a left turn here but.....  I checked my supplement log from the past, and L-Tryptophan had definitely failed to relieve my current issue.

 

From my understanding of the Driscoll Theory, what I have is a compressed vagus nerve, that began when I was growing physically.  This would explain why my symptoms didn't start until age 13 and actually got worse as I matured.  Any easy way to understand the difference:

 

Sympathetic=Fight or Flight

Parasympathetic=Rest & Digest

 

The vagus nerve controls the parasympathetic nervous system, and neural communication of the parasympathetic nervous system is inhibited in people with CFS/POTS like me.  This explain why my epinephrine and norepinephrine levels are through the roof on multiple medical tests I've had, which would be explained by the sympathetic nervous system being overactive since communication with the parasympathetic nervous system is impaired.

 

Now, here's where it gets tricky.  Acetylcholine is the major transmitter of the parasympathetic nervous system, but is also the transmitter at the ganglia of both the sympathetic and sympathetic nervous systems and the somatic nervous system.  The real question is what on earth did CDP Choline (or Choline Bitartrate possibly) do in this case?  Assuming that transmission through the vagus nerve is partially blocked, what would CDP Choline or Choline Bitartrate have done in this case?  And how might I counteract what it did?

 

 

@Stinkorninjor and others, can you help me figure this out?  Or am I way off?

Edited by dk2011, 15 December 2017 - 02:29 PM.

[Mind_Paralysis]

Sorry to take a left turn here but.....  I checked my supplement log from the past, and L-Tryptophan had definitely failed to relieve my current issue.

 

From my understanding of the Driscoll Theory, what I have is a compressed vagus nerve, that began when I was growing physically.  This would explain why my symptoms didn't start until age 13 and actually got worse as I matured.  Any easy way to understand the difference:

 

Sympathetic=Fight or Flight

Parasympathetic=Rest & Digest

 

The vagus nerve controls the parasympathetic nervous system, and neural communication of the parasympathetic nervous system is inhibited in people with CFS/POTS like me.  This explain why my epinephrine and norepinephrine levels are through the roof on multiple medical tests I've had, which would be explained by the sympathetic nervous system being overactive since communication with the parasympathetic nervous system is impaired.

 

Now, here's where it gets tricky.  Acetylcholine is the major transmitter of the parasympathetic nervous system, but is also the transmitter at the ganglia of both the sympathetic and sympathetic nervous systems and the somatic nervous system.  The real question is what on earth did CDP Choline (or Choline Bitartrate possibly) do in this case?  Assuming that transmission through the vagus nerve is partially blocked, what would CDP Choline or Choline Bitartrate have done in this case?  And how might I counteract what it did?

 

 

@Stinkorninjor and others, can you help me figure this out?  Or am I way off?

 

I honestly don't know much about the Vagus Nerve - other than that stimulation-techniques of that region, for mental disorders, does NOT work for everyone. (like every other treatment)
 

Is it possible to get neuroimaging done of the vagus nerve? Or at least a basic MRI? To see if you truly have physical abnormalities there - as far as I know, modern imaging techniques have reach sufficient sophistication for this - h*ll, shouldn't a simple x-ray be able to tell if the abnormality is skeletal?

I suggest, before you even pursue this hypothesis further, then you need to order some imaging of that area of your body.

 

And isn't The Driscoll Theory only pertaining to EDS? Have you been evaluated for EDS? What you have doesn't necessarily sound like EDS, could be multiple things - I'm still thinking your issue at its core is an immune-system issue - there are multiple ways to gum up those works.

 

It should be noted, that the leading theory for CFS, which I must admit that your symptoms are very similar (still feel that since PAIN is a bigger part of your life than for the classic CFS-er, then Fibro is somewhat more plausible) to that, and that's considered to be a form of METABOLIC disease - caused by some kind of underlying immune-system error, which then messes with metabolism - putting you into a protective state, so as to conserve energy, to last you out of this "disease-state" which your body have become convinced that you are in.

 

I suggest you talk to others on the Phoenix Rising forums, and see if there are others there which fits you to a tee - then you will know if it is CFS, and then you can start trying some of those techniques...

 

 

In the meantime... Are you at least considering the two dietary changes I suggested? Either Choline Elimination, or Ketogenic - either one seems reasonable enough to start with - although Choline elimination seems more certain, since it really IS the absolute opposite of over-dosing on Choline - complete elimination of exogenous sources.

[dk2011]

@Stinkorninjor, a7 nAChR's have an IMMUNE component, correct?  My neurologist to his knowledge α7 nAChR's cannot be permanently up-regulated or down-regulated.  But what about some element of the immune system?  I haven't had a fever or flu in 8 years.  I would that think an overactive immune system would show up on all these blood panels they did (White blood cell count was normal).  I know many people with CFS have a Mast Cell disorder.  How how would a7 nAChR's affect the mast cells or other immune factors?  And how on earth would this tie into sensitivity to medicines?  And how would the medication-sensitivity altering effects of CDP Choline last for 8 years?

 

It's got to be an immune element here involving histamine or something else.

 

Modulatory effects of α7 nAChRs on the immune system and its relevance for CNS disorders.

https://www.ncbi.nlm...pubmed/26979166

 

Here's a chart of my symptoms:

[ablainey]

Interesting........thats another comparison. I also have vegus problems. My heart attack happened during a bout of runaway tachycardia which was triggered by a bad neck position while lying down.  I had many similar tachycardic events afterward and eventually learnt I could stop them by specific positioning of my head and neck.

Latest research (Kings, London) says that vegal response is personality type dependent and not as previously believed where all vegal stimulation causes a bradicardic reaction. It seems Introvert types have tachycardia, extroverts bradicardia. Which leads me to think that presumably and possibly most intresting I believe that those with intermediate personality (bipolar tendency) might flip flop between states depending on current physiology. Taking suppliments may tip the ballance.

 

These events are dependent on my current lyme sysmptoms. One thing that has become obvious is that most of the problem is an inflamatory response to areas of injury or infection.

Oddly diclofenac triggers my symptoms in the same way as Aspirin, but ibuprofen is absolutley fine and settles things down. Serrapeptase also works well.

[dk2011]

 

 

I suggest you talk to others on the Phoenix Rising forums, and see if there are others there which fits you to a tee - then you will know if it is CFS, and then you can start trying some of those techniques...

 

 

In the meantime... Are you at least considering the two dietary changes I suggested? Either Choline Elimination, or Ketogenic - either one seems reasonable enough to start with - although Choline elimination seems more certain, since it really IS the absolute opposite of over-dosing on Choline - complete elimination of exogenous sources.

 

 

The Phoenix Rising people fit me to a Tee.  I known that for a long time.  I believe all the following are essentially the same disorder:  Chronic Fatigue Syndrome, POTS Syndrome, Mitral Valve Prolapse Syndrome, and sometimes people mistakenly call it a type of "Dysautonomia."

 

I have to be honest, I am very certain that my symptoms are not as simple as "choline excess."  When I first used CDP Choline in 2009, remember how many years I went in-between then that you would expect Choline levels to eventually come down or fluctuate at some point if I abstained from choline products.  I think the best chance for me to get an answer is to rely on better understanding the effects of CDP Choline through all of the medical studies on PubMed and NIH that have been already done.

 

Hate to sound like a hypochondriac sounding the alarm, but after my re-attempt with CDP Choline a few months ago that I mentioned, my situation has rapidly been deteriorating over the last few months.  I have a primary doctor who doesn't believe me, and the specialists I've seen are not familiar enough with CDP Choline to understand it's effects and what to do.

 

It's almost like a encyclopedia needs to be created of everything that medical studies have shown CDP Choline can do to the body, the vagus nerve, receptors, endocrine, etc and figure out something.  I will go to the Emergency Room again if needed, but in my 4 experiences there they have no idea how to help my particular situation.  They keep telling me to see a specialist and the specialists doesn't know what to do.

 

To top it off, many people on this forum think I'm crazy, and aren't taking my problem at face value saying "this isn't possible."  For people who said that when I  used to have sensitivity to meds that it was impossible, look at MVP Syndrome... It is clearly listed as one of the symptoms.

 

 

Symptoms...

• Sensitivity to drugs, including alcohol, caffeine and medications. (Caffeine prevents the natural absorption of catecholamines, so that they linger in the body. Caffeine and theobromines in chocolate are related to medications used to treat asthma, which work by inhibiting the absorption of catecholamines.) People with mitral valve prolapse are especially sensitive to all kinds of drugs and medications.

SOURCE:  http://drhoffman.com...lve-prolapse-3/

 

Edited by dk2011, 18 December 2017 - 12:58 AM.

[Krocius]

It sounds like Myasthenia gravis. Your body started to produce antibodies to acethylcholine receptors (?). Try common treatments for this condition. Maybe immunosuppresants like glucocorticoids? Have you tried this?