Chasing Rainbows: Sleep Apnea, Polyneuropathy, & SIBO

2Cor.12:19

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Sometimes it seems like all I ever do is chase rainbows. With each new diagnosis and corresponding treatment, supplement, diet --fill in the blank, comes a glimmer of hope for significant and lasting improvement. But it always ends up being just another small piece of the puzzle leaving me wondering which came first, the chicken or the egg.

In addition to a bunch of other things, I have Idiopathic Axonal Polyneuroapthy which is progressing. It's been coming on gradually for about 20 years. This kind of nerve damage affects both sensory and motor nerves and can sometimes affect the autonomic nervous system.

Prior to my APN diagnosis, I was diagnosed with Mixed Sleep Apnea, which is a combination of central and obstructive apneas. I've had sleep apnea for as long as I've had ME/CFS, and yet none of the dozens of doctors and specialists I've seen over the decades thought to order a sleep study, until I was referred to a pulmonologist for pulmonary hypertension. I've been on CPAP for 3 years now which helps immensely, but as usual, it proved to be just another rainbow.

My current doctors (5 different specialists) ordered numerous tests in search of the cause of my PN and coming up with nothing, labeled it Idiopathic. About 1/3 of PN cases have no "known" cause. No one has suggested my decades long untreated Sleep Apnea might be the culprit, even though studies show that peripheral nerve damage can be linked to chronic night time hypoxia (oxygen de-saturation)

Axonal polyneuropathy in obstructive sleep apnoea

Peripheral neuropathy in sleep apnea. A tissue marker of the severity of nocturnal desaturation

I was also recently diagnosed with SIBO (small intestinal bacteria overgrowth) and suspect the underlying cause is down to poor gut motility. When treating SIBO, it's important to get to the underlying cause. I'm guessing that I also have autonomic neuropathy as well because I have so many of the classic symptom: POTS, dizziness, constipation, digestive and bladder issues, heat intolerance, and poor night vision. I'll be checking with my neurologist and gastro doc about this possibility.

Autonaumic Neuropathy - Stanford Health

The autonomic nervous system in functional bowel disorders

All of these issues, the PN, Apnea, and SIBO seem to be interconnected, but which came first and why? I was perfectly healthy before my 35 year cat and mouse game with ME/CFS began. I can't help but wonder if the initial Epstein Barr infection that triggered my ME caused permanent nerve damage that later cascaded into a domino effect. My nervous system was severely impacted from that first day when I woke up "vibrating" from head to toe.

Whatever treatments are to be had for what ails me now may help to a degree, but it won't really put a much of a dent in the overall picture. I'm still disabled and living in the shadows.

But I'm not in despair over it as I've learned to be content and appreciate the many other kinds of blessings I have. And I'm so very thankful for all of our researchers and advocates! At the end of the day, finding real answers to the mystery of ME/CFS will be the pot of gold at the end of the rainbow we all really need.
 
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ljimbo423

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I was also recently diagnosed with SIBO (small intestinal bacteria overgrowth) and suspect the underlying cause is down to poor gut motility. When treating SIBO, it's important to get to the underlying cause.
I've never been tested for SIBO but I think the chances of me not having it are slim. I was tested for general gut dysbiosis many years ago. The test found my "Dysbiosis Index" to be "severely elevated".

I think moderate to severe chronic anxiety was a huge factor in my severe dysbiosis. There were also many other contributing factors. I had taken many courses of antibiotics, drank heavily for many years, and had a very low fiber, high junk food diet most of my life.

Now that I haven't taken any antibiotics, drank any alcohol or eaten any junk food for years, I still have significant gut issues and I would bet I still have significant dysbiosis, although I haven't had it tested in a long time.

The only thing left that could be causing my gut to stay messed up that I can think of is chronic stress. Chronic stress slows gut motility (which can cause SIBO or dysbiosis), reduces blood flow to the gut, causes chronic inflammation (which can contribute to leaky gut) and causes gut issues in other ways.

So this is my main focus. To lower my stress enough to allow my gut to heal. I have had a low carb diet in place, eating very healthy food, taking antibiotic herbs and probiotics for 4 years. So I have those covered.:)
 
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I had taken many courses of antibiotics, drank heavily for many years, and had a very low fiber, high junk food diet most of my life.
I was almost the opposite, and feel like it hardly mattered. Years of: organic, couldn't drink alchohol by the time I was 22. Never took antibiotics- literally- I took them ONCE after a tick bite and ONCE for some cyst that didn't seem to affect my gut what so ever.

I do admit to liking cookies, so there was a flunk. But it surprises me, that I am able to fix my gut quite a bit with the chinese herbs, and the types of food I ingest. that I really don't eat hardly any junk, drink nothing with a calorie.

I think I have a bit less wind and joint issues now- my joints are simply weak ligaments, not inflaming etc. So thats about it for: improved digestion improves the body. (the opposite is a rule- bad digestion messes it up worse)
 

2Cor.12:19

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I think moderate to severe chronic anxiety was a huge factor in my severe dysbiosis. ...The only thing left that could be causing my gut to stay messed up that I can think of is chronic stress. Chronic stress slows gut motility (which can cause SIBO or dysbiosis), reduces blood flow to the gut, causes chronic inflammation (which can contribute to leaky gut) and causes gut issues in other ways.

So this is my main focus. To lower my stress enough to allow my gut to heal. I have had a low carb diet in place, eating very healthy food, taking antibiotic herbs and probiotics for 4 years. So I have those covered.:)
@ljimbo423 Stress for sure plays a huge part in gut issues- I’m with you on trying to reduce anxiety and stress. Not easy to do for sure, but I’m working on it.
 

2Cor.12:19

Senior Member
Messages
235
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613
I am able to fix my gut quite a bit with the chinese herbs, and the types of food I ingest. that I really don't eat hardly any junk, drink nothing with a calorie.

I think I have a bit less wind and joint issues now- my joints are simply weak ligaments, not inflaming etc. So thats about it for: improved digestion improves the body. (the opposite is a rule- bad digestion messes it up worse)
@Rufous McKinney That’s great to hear! I’m getting ready to start Rifaximin and hope it’ll help more than my gut problems.
 

bread.

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Sometimes it seems like all I ever do is chase rainbows. With each new diagnosis and corresponding treatment, supplement, diet --fill in the blank, comes a glimmer of hope for significant and lasting improvement. But it always ends up being just another small piece of the puzzle leaving me wondering which came first, the chicken or the egg.

In addition to a bunch of other things, I have Idiopathic Axonal Polyneuroapthy which is progressing. It's been coming on gradually for about 20 years. This kind of nerve damage affects both sensory and motor nerves and can sometimes affect the autonomic nervous system.

Prior to my APN diagnosis, I was diagnosed with Mixed Sleep Apnea, which is a combination of central and obstructive apneas. I've had sleep apnea for as long as I've had ME/CFS, and yet none of the dozens of doctors and specialists I've seen over the decades thought to order a sleep study, until I was referred to a pulmonologist for pulmonary hypertension. I've been on CPAP for 3 years now which helps immensely, but as usual, it proved to be just another rainbow.

My current doctors (5 different specialists) ordered numerous tests in search of the cause of my PN and coming up with nothing, labeled it Idiopathic. About 1/3 of PN cases have no "known" cause. No one has suggested my decades long untreated Sleep Apnea might be the culprit, even though studies show that peripheral nerve damage can be linked to chronic night time hypoxia (oxygen de-saturation)

Axonal polyneuropathy in obstructive sleep apnoea

Peripheral neuropathy in sleep apnea. A tissue marker of the severity of nocturnal desaturation

I was also recently diagnosed with SIBO (small intestinal bacteria overgrowth) and suspect the underlying cause is down to poor gut motility. When treating SIBO, it's important to get to the underlying cause. I'm guessing that I also have autonomic neuropathy as well because I have so many of the classic symptom: POTS, dizziness, constipation, digestive and bladder issues, heat intolerance, and poor night vision. I'll be checking with my neurologist and gastro doc about this possibility.

Autonaumic Neuropathy - Stanford Health

The autonomic nervous system in functional bowel disorders

All of these issues, the PN, Apnea, and SIBO seem to be interconnected, but which came first and why? I was perfectly healthy before my 35 year cat and mouse game with ME/CFS began. I can't help but wonder if the initial Epstein Barr infection that triggered my ME caused permanent nerve damage that later cascaded into a domino effect. My nervous system was severely impacted from that first day when I woke up "vibrating" from head to toe.

Whatever treatments are to be had for what ails me now may help to a degree, but it won't really put a much of a dent in the overall picture. I'm still disabled and living in the shadows.

But I'm not in despair over it as I've learned to be content and appreciate the many other kinds of blessings I have. And I'm so very thankful for all of our researchers and advocates! At the end of the day, finding real answers to the mystery of ME/CFS will be the pot of gold at the end of the rainbow we all really need.
Hey,

I also have severe mixed sleep apnea, what kind of cpap do you use? What did get better for you with using it?

(Also have SIBO etc...)

How severe are you? I am very severe.
 

2Cor.12:19

Senior Member
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613
Hey,

I also have severe mixed sleep apnea, what kind of cpap do you use? What did get better for you with using it?

(Also have SIBO etc...)

How severe are you? I am very severe.
Hi @bread. - I use a ResMed Airsense 10. My sleep study was done at home. At the time I had terrible insomnia so only slept a couple of hours during the test. It registered only 12 events pr hour which is not severe. But I don’t believe it was an accurate picture because the CPAP has made a huge difference. Even with the machine I can still have Centrals lasting at least 20 seconds. I use the Oscar apnea software to read my morning reports.

The machine has been great though and my numbers are always below 2 events pr hour- and often below 1- I’m very pleased with it.