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Jesilyn

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Aug 22, 2020
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87
This whole thing is a big WTF Ey..
You wake after an hour and then you're in excited state... Don't fall asleep again....

Screw it if this Cirs-lyme, I know there are active members on the forum who know about this...

Can you add the tags "CIRS, LYME, CHRONIC FATIGUE " etc to the thread or is it too late? Can't believe only 5 or 6 members have participated.

When are you seeing your doctor next, and will she explain in fear language what this is about that she thinks...

Edit: "Clear language " not "Fear language ".

I hate this keyboard and it hates me.
I will see if I can add the tags. I see to have unusual react
Does a filling meal that has abundant carbs and a bit of good fat, with a bit of progesterone afterwards not make you want to take a 30 or 40 minute nap as it happens with me?
i can’t really remember what feeling sleepy is like. Can’t remember the last time I felt it. Exhaustion, incapacitation, yes. Sleepiness, not in my vocabulary anymore.
 
OP
J

Jesilyn

Member
Joined
Aug 22, 2020
Messages
87
This whole thing is a big WTF Ey..
You wake after an hour and then you're in excited state... Don't fall asleep again....

Screw it if this Cirs-lyme, I know there are active members on the forum who know about this...

Can you add the tags "CIRS, LYME, CHRONIC FATIGUE " etc to the thread or is it too late? Can't believe only 5 or 6 members have participated.

When are you seeing your doctor next, and will she explain in fear language what this is about that she thinks...

Edit: "Clear language " not "Fear language ".

I hate this keyboard and it hates me.
I will see if I can. It is all so confusing and I feel like I’m just wildly pulling levers without really understanding anything I’m doing.
 

SonOfEurope

Member
Joined
Jul 10, 2016
Messages
602
Well if you have had all these tests and everything else in your brain is fine except the confirmed detection if these Biotoxins, then that's what it is and it's not going to kill you, but it's devastating because you are going from severe buildup exhaustion to 4 hours of sleep and the cycle repeats.... This is something brutal and can only beg you to stay strong and keep us updated, all the advice in this thread is a lot to assimilate but it's good advice and cannot harm you, at least not regulated P4 and aspirin+k2... If tradozone works better go for it... If taking nothing AT ALL day works better absolutely go for it, we want to help you, and let's hear your doctor's proposed treatment, We'll keep posting.
 

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sribop101

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Joined
Jun 17, 2020
Messages
18
Ironically I did a round of doxycycline last June for a tick bite, even though it was a very low risk case, I ended up taking it anyways “just in case” for Lyme. I had diarrhea for about 6 months non stop after taking those...
I'd be very careful about taking antibiotics. It's a total shot in the dark and could make your precarious situation even worse.

Definitely keep us posted on what your doctors say about sleep disordered breathing. In the meantime, here are some things that have helped me personally for my UARS induced insomnia:

  • 200mg magnesium before bed
  • 3-5g glycine before bed
  • 1 dropper Herb Pharm ashwaghanda tincture, before bed and upon waking prematurely. I find this extremely helpful for relieving that "agitated" feeling when I awake at night.
Hope this helps!
 
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Jesilyn

Member
Joined
Aug 22, 2020
Messages
87
This whole thing is a big WTF Ey..
You wake after an hour and then you're in excited state... Don't fall asleep again....

Screw it if this Cirs-lyme, I know there are active members on the forum who know about this...

Can you add the tags "CIRS, LYME, CHRONIC FATIGUE " etc to the thread or is it too late? Can't believe only 5 or 6 members have participated.

When are you seeing your doctor next, and will she explain in fear language what this is about that she thinks...

Edit: "Clear language " not "Fear language ".

I hate this keyboard and it hates me.[/QUOTE
Well if you have had all these tests and everything else in your brain is fine except the confirmed detection if these Biotoxins, then that's what it is and it's not going to kill you, but it's devastating because you are going from severe buildup exhaustion to 4 hours of sleep and the cycle repeats.... This is something brutal and can only beg you to stay strong and keep us updated, all the advice in this thread is a lot to assimilate but it's good advice and cannot harm you, at least not regulated P4 and aspirin+k2... If tradozone works better go for it... If taking nothing AT ALL day works better absolutely go for it, we want to help you, and let's hear your doctor's proposed treatment, We'll keep posting.
Thanks for the encouragement, I really need it right now. This may be the most flummoxed I’ve felt in this whole journey. Seems like most of what I’ve tried has made things worse and I just get more confused. Which is perhaps I’m part a call to simplicity. Making one decision salt a time to the best of my ability and knowledge, not trying to solve the whole thing at once, and not beating myself up for mistakes. I will keep you all posted on how it’s going.
 

sribop101

Member
Joined
Jun 17, 2020
Messages
18
Thanks for the encouragement, I really need it right now. This may be the most flummoxed I’ve felt in this whole journey. Seems like most of what I’ve tried has made things worse and I just get more confused. Which is perhaps I’m part a call to simplicity. Making one decision salt a time to the best of my ability and knowledge, not trying to solve the whole thing at once, and not beating myself up for mistakes. I will keep you all posted on how it’s going.
Stay strong Jesilyn. I know how hard and hopeless it can feel. At my worst, I genuinely thought my life was over. I thought I would never recover. I'm doing better now. We are all rooting for you and you will beat this thing, I have no doubt about it. Looking forward to your updates.
 
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Jesilyn

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Aug 22, 2020
Messages
87
Stay strong Jesilyn. I know how hard and hopeless it can feel. At my worst, I genuinely thought my life was over. I thought I would never recover. I'm doing better now. We are all rooting for you and you will beat this thing, I have no doubt about it. Looking forward to your updates.
Thank you!!!
 
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Jesilyn

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Aug 22, 2020
Messages
87
Wondering if anyone has any insight into this: I tried a bit of riboflavin 5’-phosphate (prob 15 mg) this morning, sort of out of curiosity after my experience with niacinimide yesterday because it seems like they have some opposing actions, if I am understanding correctly, which is a big if... in my desperate and sleep deprived state I seem to be grasping a bit wildly at all levers in view, and I happened to have some B2 I haven’t tried yet. I think B2 is involved in fat metabolism while B3 in glucose, and B2 helps in case of undermethylation, while B3 helps in over methylation. Anyways, my response was somewhat similar: agitation, blood sugar drop, breath tightness, kinda spacey/dizzy/foggy. And much more sugar craving than when I tried the niacinimide yesterday. I think I may just need to put the B vitamins down and walk away for now, haha. Beside thiamine, I’ve been taking that for months and I think it has helped a lot. Although I did have an adjustment period to that with some rather unpleasant symptoms.

This is the most ravenous I’ve been, I almost feel like I need a sugar IV to keep up with the hypoglycemia symptoms... what the heck?
 
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bk_

Member
Joined
Apr 6, 2018
Messages
356
Wondering if anyone has any insight into this: I tried a bit of riboflavin 5’-phosphate (prob 15 mg) this morning, sort of out of curiosity after my experience with niacinimide yesterday because it seems like they have some opposing actions, if I am understanding correctly, which is a big if... in my desperate and sleep deprived state I seem to be grasping a bit wildly at all levers in view, and I happened to have some B2 I haven’t tried yet. I think B2 is involved in fat metabolism while B3 in glucose, and B2 helps in case of undermethylation, while B3 helps in over methylation. Anyways, my response was somewhat similar: agitation, blood sugar drop, breath tightness, kinda spacey/dizzy/foggy. And much more sugar craving than when I tried the niacinimide yesterday. I think I may just need to put the B vitamins down and walk away for now, haha. Beside thiamine, I’ve been taking that for months and I think it has helped a lot. Although I did have an adjustment period to that with some rather unpleasant symptoms.

This is the most ravenous I’ve been, I almost feel like I need a sugar IV to keep up with the hypoglycemia symptoms... what the heck?
Sounds like it could be a combination of issues like poor sugar metabolism, chronically high stress hormones, poor liver function/glycogen storage. It may take time to dig out of that hole keep strong!
 
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Jesilyn

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Aug 22, 2020
Messages
87
I am getting a bit of sleep relief from a liposomal GABA by Quicksilver Scientific that a friend sent me. Still experiencing frequent wake ups but spending more of the night asleep, even if not getting deep sleep. It has a more powerful sedating effect than any of the pharmaceuticals I tried. There are several ingredients in this formulation so I’m not sure what’s actually having the effect.

250mg GABA, 100mg L-Theanine, 134mg phosphatidylcholine (from purified sunflower seed lecithin).

Should I be concerned about PUFA with the phosphatidylcholine? Will it have a beneficial effect on liver function otherwise?
 

bk_

Member
Joined
Apr 6, 2018
Messages
356
I am getting a bit of sleep relief from a liposomal GABA by Quicksilver Scientific that a friend sent me. Still experiencing frequent wake ups but spending more of the night asleep, even if not getting deep sleep. It has a more powerful sedating effect than any of the pharmaceuticals I tried. There are several ingredients in this formulation so I’m not sure what’s actually having the effect.

250mg GABA, 100mg L-Theanine, 134mg phosphatidylcholine (from purified sunflower seed lecithin).

Should I be concerned about PUFA with the phosphatidylcholine? Will it have a beneficial effect on liver function otherwise?
134mg is so little I think it’s fine. L-theanine has helped me in the past before with sleep but it wasn’t a magic bullet. Others on the forum said good things about L-theanine and sleep.
 

SonOfEurope

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Jul 10, 2016
Messages
602
Rough for me to read all this, gaba can be magic... Are you seeing your doctor soon for further (deeper) tests?
 

tara

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Mar 29, 2014
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10,368
I do notice that if I’m on my back sometimes I will jolt out of almost-asleepness because the breath stops. Does not happen when I sleep on my side, which I usually do.
Apparently sleeping on the back can tend to promote hyperventilation, compared with sleeping on the side. Some people tie things to their backs or put a pillow behind or something to prevent rolling onto back once asleep.
Do you notice whether you tend to breath with the diaphragm or the thorax/clavicles?
This is where I learned a bit about breathing, carbondioxide/oxygen use and Buteyko method: normalbreathing.com.

Niacinamide supplement can tend to reduce fat burning and increase sugar burning, so if glycogen stores are low, you can increase the risk of running too low while asleep. I'd consider using niacinamide during the day with food, not especially in evening.

Could you see if you can eat 2500 cals every day for a week and see if you get more sleep?
If you supplement niacinamide or progesterone or anything that increases metabolism while undereating, the effect could be more stress.
 
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Jesilyn

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Aug 22, 2020
Messages
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Ugh. I was really feeling like things were gonna start improving after a couple nights of GABA goodness. But last night was brutal. I just kept taking more GABA to no avail. And yesterday and the day before were almost identical in food and supplements. It sort of seems like the endotoxin/serotonin builds up and then my system goes into crisis. I had a big wave of diarrhea last night before bed and I thought, oh good, just unloaded a bunch of endotoxin, hopefully that will help me sleep. I had a bowel movement the evening before that too, before a much better night of sleep. What can I say? I am really stumped. I could tell yesterday that my appetite wasn’t as strong, but I could still eat and the food tasted good, so I did. Maybe I am just overdoing the dairy and creating too much inflammation. I’ve also been eating pretty freely starch and cooked fruit, maybe it is just too much. But then I end up undereating. Currently I am really not finding the sweet spot between eating enough and overtaxing my GI tract. The past three nights I’ve eaten closer to bed, and that seemed to help keep me asleep longer, but I did have a subtle sense of increased toxic load. And last night the closeness to sleep felt all wrong. This is just awful.

I am waiting to hear back from my doctor about next testing steps, but I won’t be able to actually meet with her for another 2.5 weeks. I’m gonna send another message reminding her I want to keep this moving as efficiently as possible.

Sounds likely that I can get a sleep study through Medicaid, although I’m not sure what can come of it, I’m feeling quite certain after paying more attention to it that it is a factor. It really feels like a structural functioning problem. Like the musculoskeletal structures involved in breathing are malfunctioning because they can’t properly relax. Like the cells are in a chronic excitatory contracted state and can’t relax and open/contract properly. In which case it’s another one of these vicious feedback loops. The body can’t function because it can’t rest/regenerate and it can’t rest/regenerate because it can’t function.

This is a trial of a lifetime. This sense of powerlessness is about as much as I can bear. And the stress of not knowing how I’m going to pay for all of this, and an ambiguous sense of support from my family, it’s just torture.

I feel like I need to figure out how to support my liver better. I’ve been listening to Chris Shade talk about how endotoxin shuts down the liver’s detox flow through the bile and toxins get sent back into the blood. It inspired me to add in charcoal with slippery elm the past couple of days. Sometimes I feel like I notice a benefit, sometimes not. My bowels are moving/releasing so much these days, and I’m eating a carrot or two a day and cooked mushroom every day, and it seems like there a steady clearing out happening there, but I’m still experiencing this high level of endotoxemia. What else can I do?
 

sribop101

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Joined
Jun 17, 2020
Messages
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Ugh. I was really feeling like things were gonna start improving after a couple nights of GABA goodness. But last night was brutal. I just kept taking more GABA to no avail. And yesterday and the day before were almost identical in food and supplements. It sort of seems like the endotoxin/serotonin builds up and then my system goes into crisis. I had a big wave of diarrhea last night before bed and I thought, oh good, just unloaded a bunch of endotoxin, hopefully that will help me sleep. I had a bowel movement the evening before that too, before a much better night of sleep. What can I say? I am really stumped. I could tell yesterday that my appetite wasn’t as strong, but I could still eat and the food tasted good, so I did. Maybe I am just overdoing the dairy and creating too much inflammation. I’ve also been eating pretty freely starch and cooked fruit, maybe it is just too much. But then I end up undereating. Currently I am really not finding the sweet spot between eating enough and overtaxing my GI tract. The past three nights I’ve eaten closer to bed, and that seemed to help keep me asleep longer, but I did have a subtle sense of increased toxic load. And last night the closeness to sleep felt all wrong. This is just awful.

I am waiting to hear back from my doctor about next testing steps, but I won’t be able to actually meet with her for another 2.5 weeks. I’m gonna send another message reminding her I want to keep this moving as efficiently as possible.

Sounds likely that I can get a sleep study through Medicaid, although I’m not sure what can come of it, I’m feeling quite certain after paying more attention to it that it is a factor. It really feels like a structural functioning problem. Like the musculoskeletal structures involved in breathing are malfunctioning because they can’t properly relax. Like the cells are in a chronic excitatory contracted state and can’t relax and open/contract properly. In which case it’s another one of these vicious feedback loops. The body can’t function because it can’t rest/regenerate and it can’t rest/regenerate because it can’t function.

This is a trial of a lifetime. This sense of powerlessness is about as much as I can bear. And the stress of not knowing how I’m going to pay for all of this, and an ambiguous sense of support from my family, it’s just torture.

I feel like I need to figure out how to support my liver better. I’ve been listening to Chris Shade talk about how endotoxin shuts down the liver’s detox flow through the bile and toxins get sent back into the blood. It inspired me to add in charcoal with slippery elm the past couple of days. Sometimes I feel like I notice a benefit, sometimes not. My bowels are moving/releasing so much these days, and I’m eating a carrot or two a day and cooked mushroom every day, and it seems like there a steady clearing out happening there, but I’m still experiencing this high level of endotoxemia. What else can I do?

I would go easy on the dairy. Personally, I can't drink milk at all, it wrecks havoc on my digestive system. It's only gotten worse since my UARS-induced sleeping problems started. I keep to a very clean, low-inflammatory diet now, and if I experience any kind of flare-up I take a few capsules of activated charcoal. Clears up any stomach rumbling or churning very quickly.

That sounds good, keep pestering your doctor. Make it clear that this is an emergency and explain how bad the sleep is. See if she can order a sleep study sooner than 2.5 weeks out. Also, I can't stress how important it is to request a sleep study that scores Respiratory Effort Related Arousals (RERAs). WatchPat does this and several others. A sleep study that only scores apneas will not give you the full story on sleep disordered breathing.

Lastly, I totally understand that "trial of a lifetime" feeling. At the height of my own suffering, one day it just hit me: this is the hardest, most grueling thing I'll ever have to do. My family wasn't awfully supportive either; they couldn't imagine the amount of pain I was in. It's impossible to understand the effects of chronic, severe sleep deprivation unless you've personally felt it. Just take one day at a time. It sounds like money is tight but health needs to come first now. Everything else will fall into place once you recover.
 
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Jesilyn

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87
I would go easy on the dairy. Personally, I can't drink milk at all, it wrecks havoc on my digestive system. It's only gotten worse since my UARS-induced sleeping problems started. I keep to a very clean, low-inflammatory diet now, and if I experience any kind of flare-up I take a few capsules of activated charcoal. Clears up any stomach rumbling or churning very quickly.

That sounds good, keep pestering your doctor. Make it clear that this is an emergency and explain how bad the sleep is. See if she can order a sleep study sooner than 2.5 weeks out. Also, I can't stress how important it is to request a sleep study that scores Respiratory Effort Related Arousals (RERAs). WatchPat does this and several others. A sleep study that only scores apneas will not give you the full story on sleep disordered breathing.

Lastly, I totally understand that "trial of a lifetime" feeling. At the height of my own suffering, one day it just hit me: this is the hardest, most grueling thing I'll ever have to do. My family wasn't awfully supportive either; they couldn't imagine the amount of pain I was in. It's impossible to understand the effects of chronic, severe sleep deprivation unless you've personally felt it. Just take one day at a time. It sounds like money is tight but health needs to come first now. Everything else will fall into place once you recover.
What is the basic composition of your diet? What do you mostly rely on for protein? The interesting thing is I rarely get actually belly distress. I just increase in brain fog, anxiety, and insomnia. It has made it a bit challenging to determine what is affecting me. Yesterday I felt especially good in my belly, like kind of energized and tight (as in less bloat). My best guess is that the serotonin/excitatory cocktail creates this feeling... but is also preventing me from sleeping.

Good to know about the RERAs, I have to wait for the referral to come in the mail, hopefully soon. Does the test give you insight into why/how the RERAs are happening, or just that they are (I know that they are).

And thanks for the encouragement, I can't imagine anything more potent than this to flush out deep seated unworthiness. I know it is worth the investment in my health now, but when the fear that I can't get better is triggered, ouch, that is a terrible yucky feeling. What a practice to retrain the attention from the doom spiral!
 

Bart1

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May 21, 2018
Messages
445
Hey Jesilyn, stumbled upon your thread. I haven’t got the energy to read through all the pages but from what I read I have been/actually am still in the same boat as you. I understand your frustration..

it all started 5-6 years ago, without going into my story, these are some things that apply to me, that could apply to you as well and maybe help you.

definitely endotoxin/excess serotonin
Hypothyroid? Check temps/pulse
How are your adrenals?
Have your iron levels ever been tested, full panel?
How is your environment? Ever looked into mold?
I had been tested on a lot if things, nothing really came up on blood tests/mri etc, but I think I have a liver problem. With this kind of endotoxin load and severe insomnia I start to think about the liver as well.

So focusing on liver and gut and the accompanying nutrient deficiencies. I would be very careful with too much killing of bacteria. Take it slow, support detoxification of the liver.

i tried fruit instead of starch. Less endotoxin for sure, but couldn’t get enough quality fruit and I felt I needed glucose. Even though starch give me endotoxin, I still prefer it, it makes me feel fuller and minerals get absorbed better.

some things that helped me sleep, tried about all supplements on the world:

before sleep (not all together, take 1 at a time):
zinc sulfate
Famotidine (pepsin)
Lithium oratate (very small dose)
Pregnonelone (very small dose)
Casein protein in cooked
Forassist (phages)
 
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OP
J

Jesilyn

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Aug 22, 2020
Messages
87
How do
Hey Jesilyn, stumbled upon your thread. I haven’t got the energy to read through all the pages but from what I read I have been/actually am still in the same boat as you. I understand your frustration..

it all started 5-6 years ago, without going into my story, these are some things that apply to me, that could apply to you as well and maybe help you.

definitely endotoxin/excess serotonin
Hypothyroid? Check temps/pulse
How are your adrenals?
Have your iron levels ever been tested, full panel?
How is your environment? Ever looked into mold?
I had been tested on a lot if things, nothing really came up on blood tests/mri etc, but I think I have a liver problem. With this kind of endotoxin load and severe insomnia I start to think about the liver as well.

So focusing on liver and gut and the accompanying nutrient deficiencies. I would be very careful with too much killing of bacteria. Take it slow, support detoxification of the liver.

i tried fruit instead of starch. Less endotoxin for sure, but couldn’t get enough quality fruit and I felt I needed glucose. Even though starch give me endotoxin, I still prefer it, it makes me feel fuller and minerals get absorbed better.

some things that helped me sleep, tried about all supplements on the world:

before sleep (not all together, take 1 at a time):
zinc sulfate
Famotidine (pepsin)
Lithium oratate (very small dose)
Pregnonelone (very small dose)
Casein protein in cooked
Forassist (phages)
How are you supporting liver health... I know this is a major part of the equation for me! And how to you avoid too much killing of bacteria?
 

Bart1

Member
Joined
May 21, 2018
Messages
445
How do

How are you supporting liver health... I know this is a major part of the equation for me! And how to you avoid too much killing of bacteria?
hey, I'm battling this still everyday. I certainly don't have all the answers;

Liver is trying to lower endotoxin, so work on gut with natural things like oregano oil, monolaurin, carrot salad etc.
Stimulate bile with things like glycine, taurine or Tudca, Limonene.
Eat enough calories and protein and get enough of all the vitamins, probably you have to supplement them with a good supplement.

Too much killing is when you get too much herx and get very dizzy and fatigued, it's ok to have that, but if your getting dizzy like every day you probably have to slow down a bit.
 

sribop101

Member
Joined
Jun 17, 2020
Messages
18
What is the basic composition of your diet? What do you mostly rely on for protein? The interesting thing is I rarely get actually belly distress. I just increase in brain fog, anxiety, and insomnia. It has made it a bit challenging to determine what is affecting me. Yesterday I felt especially good in my belly, like kind of energized and tight (as in less bloat). My best guess is that the serotonin/excitatory cocktail creates this feeling... but is also preventing me from sleeping.

Good to know about the RERAs, I have to wait for the referral to come in the mail, hopefully soon. Does the test give you insight into why/how the RERAs are happening, or just that they are (I know that they are).

And thanks for the encouragement, I can't imagine anything more potent than this to flush out deep seated unworthiness. I know it is worth the investment in my health now, but when the fear that I can't get better is triggered, ouch, that is a terrible yucky feeling. What a practice to retrain the attention from the doom spiral!

I keep it simple. White rice, white / sweet potatoes, gluten-free oats for carbs. Lots of low-lectin veggies that I seem to tolerate well like zucchini, cucumbers, leeks, onions, carrots, etc. Main protein source is whey, but I mix in a daily egg, collagen, and then one of chicken / fish / red meat. Mostly saturated fats with butter, ghee, coconut oil, and olive oil. Digestive distress definitely worsens my insomnia as well, but this template has been working well for me.

The test will tell you how many RERAs / apnea events are happening and some additional information like how it relates to sleeping position. It's really a diagnosis tool, but making a proper diagnosis is the first step toward recovery. The tricky thing about sleep disordered breathing is that each person's anatomy is different and there is no one size fits all solution. But don't worry about that now. I'll help you navigate that world if that's what you're dealing with.

Yes, it's quite the practice. Isn't it scary how our very thoughts change when we're sick like this? It's like the mind turns against itself... but don't listen to those thoughts. It's temporary and it will pass. Try to take your mind off it as best as you can.
 

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