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Re: Help.. Possibly Dying - ME/CFS/FM/MCS & Liver pain
 

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Hveragerthi Views: 4,582
Published: 12 y
 
This is a reply to # 1,949,277

Re: Help.. Possibly Dying - ME/CFS/FM/MCS & Liver pain


 Hi Chris,

Hi James. I was asked to post here by Long. So here's the message from the liver flush (plus posted on me/cfs & other boards) forum. I didn't get an email from you btw? Not on here or at my normal email. My blog site has a great deal of detail, if you read my story first at http://cfsjourney.wordpress.com/my-story

That's odd, I sent it to the e-mail on your blog contact information.  Maybe it ended up in the spam filter.


Thanks much for reading, any input much appreciated!

Chris.


Hi all. I'm 33, male from Austraila. I've had CFS/ME, fibro and digestive problems stemming from the liver for 12 years. Late 2000 I got the worst liver/gb pain ever, which turned out to be sludge, biliary stasis and GB dysfunction. Even mild attacks of pancreatitis.

In my email this is the most important part:

"One thing that would be really helpful is to know what medications, herbs or supplements you were on prior to this starting?  Also did you happen to lose a bunch of weight suddenly?

Other details such as anything leading up to this would be helpful including prior diet, injuries, etc."

Developing sludge like that requires bile stasis.  This is not as common in men, which is why I am wondering about a lot of what is in my questions.  Trying to get to the root of the bile stasis.

I know you are sensitive to a lot of things, but stimulation of the vagus nerve with bitters can still help.  You do not need commercial bitters.  Just a pinch of a bitter herb like andrographis, artichoke leaf or gentian root on the tongue.  Suck on it 5-10 seconds and swallow.  Even if the herb has salicylates the amount in a pinch would be less than most foods.  

Fiber is also important for bile formation, which will help dissolve the sludge.  If you can tolerate some lecithin this is also important for the formation of bile.  Bile contains a significant amount of lecithin, which is why bile is an emulsifier.

The only problem is that I just saw you had your gallbladder removed.  Doing bitters without a gallbladder is normally not a good idea since this increases the diarrhea from the dumping of caustic bile in to the intestines.  And increasing bile at this point is not going to make much difference without the gallbladder still being there.

You also mentioned some nerve issues in one of your blog posts that sound like a demyelination induced neuropathy.  Again lecithin is a major component of myelin:

http://curezone.com/forums/fm.asp?i=1639133 

The cortisone you are on can also be contributing to this by chronically elevating the blood sugar.

Cortisone also suppresses the immune system by atrophying the adrenals and thymus glands as well as through the elevation of blood sugar, which interferes with white blood cell activity.

Ever since I've had terrible digestion, and been trying remedies to no avail all these years. In fact in 2008 i developed adrenal insufficiency because I guess my body couldnt handle the constant stress any more of the condition, hence im left on cortisone, which is a nightmare of its own.

Most of your symptoms are due to the adrenal insufficiency either directly or indirectly.  Unfortunately the cortisone is only going to atrophy the adrenals further.  Let's look at your symptoms and I can tie these together for you.

First allergies and sensitivities.  We are all exposed to allergens, but do not all suffer from allergies/sensitivities.  The reason is that when we are exposed to allergens our adrenals secrete antihistamine and antileukotriene epinephrine and immune modulatory and anti-inflammatory corticosteroids to counter these responses.  Asthma, which is generally an allergic inflammatory response is also controlled in the same way.  This is why doctors frequently use steroids or epinephrine or related drugs to control both allergies and asthma.  Here is an old write up on asthma:

http://mountainmistbotanicals.com/info/Asthma.htm

Poor adrenal function can contribute to the heart palpitations by reducing blood flow through either severe drops in blood pressure or epinephrine induced vasoconstriction from allergic responses.  Here is a link to an old write up I did on the topic of arrhythmias:

http://curezone.com/forums/fm.asp?i=1509535#i 

That can also explain why your SVT came back despite the cardiac ablation.  Cardiac irritability from a decreased blood supply can produce other ectopic pacemakers.  You probably had several areas of reduced blood flow to begin with such as small blockages that were contributing.

Depending on the type of headache the adrenals can also play a role here.  Weak adrenals lead to increased inflammation.

The coffee you were drinking was also making your adrenals worse by over stimulating them:

http://curezone.com/forums/fm.asp?i=1534758#i

When you crash the adrenals again there is less epinephrine output as well as cortisol output.  This reduces our energy levels, messes with blood sugar levels, increases inflammation, suppresses immunity, decreases our ability to deal with stress, messes with blood pressure regulation, etc.  The adrenals also help to regulate the thyroid leading to thyroid suppression.  This in turn can cause the "spaced out" feeling you were getting from the coffee.  Suppression of the adrenals and the thyroid can also cause chronic fatigue.

In your other link:

http://cfsjourney.wordpress.com/7weeks/

you show your hands and the strange skin tone.  Looking at the photos, especially the tips of the fingers that you can see are even a different tone that the hands I would say this is most likely Raynaud's phenomena from the hypothyroidism or possibly even Raynaud's disease:

http://curezone.com/forums/fm.asp?i=1558927#i

I know you said you have reactive hypoglycemia, but adrenal dysfunction can also lead to chronic hypoglycemia:

http://curezone.com/forums/fm.asp?i=1610489#i


Anyway as of Nov last year (2011) my liver detox and digestion totally bottomed out, leaving me worse than ever, extremely weak. I was in hospital for 8 weeks, with no answers. Tests mostly normal, except severe pots / orthostatic intolerance.

Orthostatic hypotension is also a sign of adrenal dysfunction.  Normally upon standing up the adrenals release epinephrine to constrict the blood vessels to compensate for gravity pulling blood away from the brain.

I am in incredible systemic pain day & night, and such weakness I can barely leave the bed. My liver hurts all the time, except when I eat nothing for a long period. I feel so toxic as does my brain.

I have never done flushes, because of the way that fat/oil gives me a lot of pain in the liver/pancreas. However ive become SO weak, and feel like im dying.. I now wonder if I must Liver Flush or something, as there seems no other option for me. I do not want to die at 33.

Any opinions would be so appreciated. Read my site if you like for details: cfsjourney.wordpress.com/7weeks

Thanks all. ~Chris.

33/m/Australia.

 

You also mention on your blog:

" For some strange reason, high protein foods such as meat/eggs flare up the brain/nerve/muscle pain severely."

Animal protein sources contain the pro-inflammatory omega 6 fatty acid arachidonic acid.  Some plants are also high in other omega 6 fatty acids that can contribute to inflammation.  Omega 3 fatty acids counter the inflammatory effects of the inflammatory  omega 6 oils.

 

"Even after those meals, but moreso after decent ones, my brain

shuts off into a weird almost coma like state for a couple of hours & my muscles can become virtually paralysed. I can become wracked with pain in my muscles and all my tiny joints around the torso, ribs, back/spine, neck, shoulders, elbows, (basically everywhere), which crack upon movement. Some of these things have improved a little since Nov/Dec, but not much." 

Part of this can be from the hypoglycemic reaction due to the higher sugar load of your diet.  But I also suspect that you are very deficient in magnesium, which plays numerous roles in the body.  These include cellular energy production, circulation and blood sugar control.  The lack of cellular energy (ATP) production can lead to muscle disorders such as fibromyalgia and rhabdomyolosis.  Magnesium deficiencies also contribute significantly to asthma and spasming of other smooth muscle and can contribute to arrhythmias.

I have some old posts on gastroparesis and IBS as well, but it looks like the Curezone search function is down at the moment since it is not returning anything on searches at the moment.

In short though your gastroparesis and reflux are most likely from deficient stomach acid, which also leads to a number of other health issues such as nutritional deficiencies and increased inflammatory responses.  This also increases allergic responses due to incompletely digested proteins acting as antigens.

IBS has been linked to a lack of flora, which can also lead to "leaky gut" and constipation.  Your gluten intolerance, whether it is true Celiac or just a gluten intolerance, can also increase "leaky gut" contributing to allergic responses.

At the moment I am running really late and need to get out the door.  But this will give you some stuff to think about and research for the moment.

 

 

 

 
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