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puddleduck’s progress (CFS symptoms)

#41 · March 1, 2022, 3:51 pm

Quote from puddleduck on March 1, 2022, 3:51 pm
accidentally posted before done writing will update soon lol

EDIT: Lmao writing takes me sooooo long. 🤣

March 3rd, 2022

Hey guys,

Long time no update. I wish I could say this is because everything has been hunky dory, but no... I’m feeling kinda discouraged right now, because it has been a really rough year-and-a-half in my personal life and physically it feels like I’ve barely made any progress... 😂😭 Kept holding off posting because I was like, “it’s got to get better soon!”

One positive I can report is that much of the progress I did make has held:

PCOS is 100% cured (confirmed by pelvic ultrasound)

Weight has remained stable since Spring 2021 (intentionally gained weight after losing too much in Winter 2020/2021 and it has stuck)

OCD, Mania, and Clinical Depression haven’t returned

And so I continue the experiment! I am loathe to give it up before the 5-year mark.

Thanks for all the awesomely helpful comments, by the way guys! 😊 I wanna take the time to respond to each one individually and will try to do so.

✨ Three Year Update ✨

So I’m going to start with the bad news. Wait, who am I kidding? It’s all bad news. 😂 〽️

Sorry guys, I’m in a bit of a grieving phase right now. I have literally slept an entire decade of my life away... And I’d hoped this decade would take me from horizontal to upright, at least more than 50% of the daylight hours, y’know?

I’m okay, though. Always aiming for that balance of striving and hoping for a brighter future without letting that vision get in the way of acceptance and enjoyment of the moment. 🦋

Mildly Elevated TSH

In October 2021, I got bloodwork done. My Thyroid Stimulating Hormone was slightly above the reference range of 0.28 — 4.20 mIU/L at 4.28 mIU/L.

This is a red flag “because a TSH within the upper end of the usual reference range (2.5 to 4.5 mIU/L) confers some additional risk of progressing to overt hypothyroidism over time...” And therefore some doctors suggest “the threshold for diagnosing subclinical hypothyroidism should be lowered to 2.5 mIU/L.” [1]

Am I Allergic to Gluten? Yeah, Probably 🚫🌾🥖🥨

It’s a hassle navigating the Healthcare System right now (for obvious reasons 😷), so I haven’t tried to get properly tested for it, but there are several “clues” that point in this direction:

1. I had been relying on whole grain sandwiches and pastas for convenient meals, but my appetite started to reject them in favor of potatoes, rice, and gluten-free noodles. 🙃

2. One of my parents suffered greatly for decades due to Celiac Disease before being diagnosed and going gluten-free. I also have a cousin who had been quite sick with it, too.

Apparently there’s a “strong genetic component” to the disease. [2]

And family members often do not share the same symptoms, but rather present subclinically, “meaning even though they had the characteristic intestinal damage found in celiacs known as villous atrophy, they didn't have classic celiac symptoms. Instead, many of them had autoimmune conditions that have been linked to celiac disease, including thyroid disorders and psoriasis. Others, meanwhile, had atypical celiac symptoms such as reflux.” [3]

3. I’ve been working with Dr. Smith since the summer of 2020, but my most recent appointment in autumn of 2021 revealed my deficient mineral levels hadn’t moved up much, despite aggressive supplementation. Might there be a malabsorption issue?

4. Night sweats can be a sign of autoimmune conditions, including celiac disease. [4]

Inositol mostly cleared up the severity and intensity of that symptom (in Winter 2020/2021 I was waking up completely drenched in the wee hours pretty much nightly), but I still do get mild night sweats a few times a month.

5. “Autoimmune thyroid disease is often accompanied by celiac disease.” [5] Myo-inositol improves autoimmune thyroid problems. [6]

6. Heavy menstrual bleeding can be caused by inadequate thyroid level. [7] When I cut my inositol dose in half, this symptom was still concerning. 😬 And that, of course, makes it even harder to raise my ferritin level.

7. When I was younger, the blood test for Celiac Disease came back negative, but my current doctor told me it’s a fairly unreliable test. 🙃

8. ⚠️ WILD SPECULATION: If we’re encouraging our bodies to dump extra retinoic acid into the gut via the bile...could that potentially cause our cells to freak out and react with the gluten ⁉️ 😰😱

So I’ve been strictly avoiding gluten since mid-January, and the post-nasal drip, constantly itchy throat, mild cough, and scratchy voice that I can’t seem to shake (even though I had temporarily improved it with High Dose Thiamine Therapy and the Bean Protocol) is lifting at last.

I can SING now. 😯🎵 My voice is higher and there’s less strain.

I accidentally ate some gluten last week from restaurant food, and right away my throat got super, duper itchy and my voice tightened. Lasted for a day or so.

It’s encouraging to get confirmation this is the right track, because Celiac Disease is severely damaging. It’s also frustrating, because I wish I’d listened to Grant’s suggestion that gluten might be a negative factor for many of us after his community survey back in 2019...

My Vitamin A Level Is Officially “Deficient” ☀️🌈🌧

Not gonna lie, it was kinda hard to celebrate this milestone seeing as my POTS and CFS hadn’t improved much. Made me worried there might be irreversible damage...

But now that I’ve figured out perhaps Celiac Disease is an overlooked aspect of the damage, there’s still hope of further improvements. 🤞😂

Here’s the number :

🩸 0.6 umol/L (Reference range is 1.1-3.1 umol/L | Blood drawn October 2021)

The day I picked up this lab result, I made a huge lasagne with greek salad (sans lettuce, though, I still hate lettuce too much lol). 🥫🧄 There was a reaction, but it was much milder than last time (recorded in the previous entry), so that’s a small win. 🤣

My brain did feel more inflamed over the following few days, however.

Nap Attacks 😴

I’m going to describe a symptom I’ve had for a really long time, which hasn’t resolved yet on the detox. I don’t know if it’s primarily a CFS or a dysautonomia thing, but what happens is I get irresistibly sleepy to the point where if I try to resist it my brain makes it impossible to read, talk, or move...I feel I’m in slow motion underwater, but my heart is racing. I used to get super cold, too, but my temperature isn’t as affected anymore.

If I try to move as soon as I feel it coming on, sometimes I can go get a supplement or something before I’m forced to sleep. But often I can barely get under a blanket.

It usually happens in the early afternoon, but it can happen in the morning, too. And I’m out for a good 3 to 5 hours. It’s not refreshing sleep. Makes me feel like I was pushed over and hit my head, because when I wake up it’s inflamed, extra-foggy, and irritable.

So I call it a “nap attack.”

Dr. Smith said this was likely caused by low potassium.

But I’ve had it happen right after I’ve taken my sodium/potassium water. Doesn’t seem to make a difference either way.

Still, my hypothesis right now is that he’s right about it being an electrolyte/hydration problem. Since magnesium plays a role in helping sodium and potassium cross cell membranes, maybe I need more of it? [8]

If anyone has another idea, I’d sure appreciate any insight.

Experimenting with Diet Composition and Supplements: Thinking Aloud About Variables? 🍳🍗🥔

I want to get to the bottom of the nap attack...

Do I need to eliminate even more foods to determine if there’s something in particular that triggers this extreme sleep reaction? I could go carnivore, and then slowly add back other foods one at a time?

Or is it time to re-introduce a small amount of vitamin A? One or two eggs and tablespoon of butter or so? I don’t want to get stuck in a rut if I’m missing something that could be improved.

Or should I give the gluten-free diet longer to work before adding more variables? Maybe six months?

Speaking of variables, I did start a bunch of new supplements on my own. Since I gave Dr. Smith’s customized detox supplement protocol a good year-and-a-half, I figure it’s time look at what’s going on from other angles.

I will add another update with all the details regarding supplements once I’ve been trying them longer. 😝

Okay, So Maybe There’s Some Good News 🌻🖤💛🖤💛

Over the past year, I’ve heard from multiple people who have recovered from mental illness after cutting out vitamin A from their diet. That makes me SO excited and hopeful for humanity to keep expanding our awareness, seeking knowledge, regaining harmony with nature, and increaseing our capacity for wellness.

I’m grateful to have found Grant’s hypothesis, as it has given me relief in many areas of my life. 🌼

I hope everyone is doing well! 😊💛 I intend to catch up on your logs over the next few months. Hope you have a beautiful day! ☀️

References:

[1] https://www.ncbi.nlm.nih.gov/books/NBK83492/?report=reader#introduction.s3

[2] https://pubmed.ncbi.nlm.nih.gov/26194613/

[3] https://www.verywellhealth.com/can-you-have-celiac-with-no-diarrhea-563131

[4] https://pubmed.ncbi.nlm.nih.gov/29226189/

[5] https://pubmed.ncbi.nlm.nih.gov/30060266/

[6] https://pubmed.ncbi.nlm.nih.gov/34040582/

[7] https://helloclue.com/articles/cycle-a-z/heavy-periods-consider-your-thyroid

[8] https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6524065/

accidentally posted before done writing will update soon lol

EDIT: Lmao writing takes me sooooo long. 🤣

March 3rd, 2022

Hey guys,

Long time no update. I wish I could say this is because everything has been hunky dory, but no... I’m feeling kinda discouraged right now, because it has been a really rough year-and-a-half in my personal life and physically it feels like I’ve barely made any progress... 😂😭 Kept holding off posting because I was like, “it’s got to get better soon!”

One positive I can report is that much of the progress I did make has held:

PCOS is 100% cured (confirmed by pelvic ultrasound)
Weight has remained stable since Spring 2021 (intentionally gained weight after losing too much in Winter 2020/2021 and it has stuck)
OCD, Mania, and Clinical Depression haven’t returned

And so I continue the experiment! I am loathe to give it up before the 5-year mark.

Thanks for all the awesomely helpful comments, by the way guys! 😊 I wanna take the time to respond to each one individually and will try to do so.

✨ Three Year Update ✨

So I’m going to start with the bad news. Wait, who am I kidding? It’s all bad news. 😂 〽️

Sorry guys, I’m in a bit of a grieving phase right now. I have literally slept an entire decade of my life away... And I’d hoped this decade would take me from horizontal to upright, at least more than 50% of the daylight hours, y’know?

I’m okay, though. Always aiming for that balance of striving and hoping for a brighter future without letting that vision get in the way of acceptance and enjoyment of the moment. 🦋

Mildly Elevated TSH

In October 2021, I got bloodwork done. My Thyroid Stimulating Hormone was slightly above the reference range of 0.28 — 4.20 mIU/L at 4.28 mIU/L.

This is a red flag “because a TSH within the upper end of the usual reference range (2.5 to 4.5 mIU/L) confers some additional risk of progressing to overt hypothyroidism over time...” And therefore some doctors suggest “the threshold for diagnosing subclinical hypothyroidism should be lowered to 2.5 mIU/L.” [1]

Am I Allergic to Gluten? Yeah, Probably 🚫🌾🥖🥨

It’s a hassle navigating the Healthcare System right now (for obvious reasons 😷), so I haven’t tried to get properly tested for it, but there are several “clues” that point in this direction:

1. I had been relying on whole grain sandwiches and pastas for convenient meals, but my appetite started to reject them in favor of potatoes, rice, and gluten-free noodles. 🙃

2. One of my parents suffered greatly for decades due to Celiac Disease before being diagnosed and going gluten-free. I also have a cousin who had been quite sick with it, too.

Apparently there’s a “strong genetic component” to the disease. [2]

And family members often do not share the same symptoms, but rather present subclinically, “meaning even though they had the characteristic intestinal damage found in celiacs known as villous atrophy, they didn't have classic celiac symptoms. Instead, many of them had autoimmune conditions that have been linked to celiac disease, including thyroid disorders and psoriasis. Others, meanwhile, had atypical celiac symptoms such as reflux.” [3]

3. I’ve been working with Dr. Smith since the summer of 2020, but my most recent appointment in autumn of 2021 revealed my deficient mineral levels hadn’t moved up much, despite aggressive supplementation. Might there be a malabsorption issue?

4. Night sweats can be a sign of autoimmune conditions, including celiac disease. [4]

Inositol mostly cleared up the severity and intensity of that symptom (in Winter 2020/2021 I was waking up completely drenched in the wee hours pretty much nightly), but I still do get mild night sweats a few times a month.

5. “Autoimmune thyroid disease is often accompanied by celiac disease.” [5] Myo-inositol improves autoimmune thyroid problems. [6]

6. Heavy menstrual bleeding can be caused by inadequate thyroid level. [7] When I cut my inositol dose in half, this symptom was still concerning. 😬 And that, of course, makes it even harder to raise my ferritin level.

7. When I was younger, the blood test for Celiac Disease came back negative, but my current doctor told me it’s a fairly unreliable test. 🙃

8. ⚠️ WILD SPECULATION: If we’re encouraging our bodies to dump extra retinoic acid into the gut via the bile...could that potentially cause our cells to freak out and react with the gluten ⁉️ 😰😱

So I’ve been strictly avoiding gluten since mid-January, and the post-nasal drip, constantly itchy throat, mild cough, and scratchy voice that I can’t seem to shake (even though I had temporarily improved it with High Dose Thiamine Therapy and the Bean Protocol) is lifting at last.

I can SING now. 😯🎵 My voice is higher and there’s less strain.

I accidentally ate some gluten last week from restaurant food, and right away my throat got super, duper itchy and my voice tightened. Lasted for a day or so.

It’s encouraging to get confirmation this is the right track, because Celiac Disease is severely damaging. It’s also frustrating, because I wish I’d listened to Grant’s suggestion that gluten might be a negative factor for many of us after his community survey back in 2019...

My Vitamin A Level Is Officially “Deficient” ☀️🌈🌧

Not gonna lie, it was kinda hard to celebrate this milestone seeing as my POTS and CFS hadn’t improved much. Made me worried there might be irreversible damage...

But now that I’ve figured out perhaps Celiac Disease is an overlooked aspect of the damage, there’s still hope of further improvements. 🤞😂

Here’s the number :

🩸 0.6 umol/L (Reference range is 1.1-3.1 umol/L | Blood drawn October 2021)

The day I picked up this lab result, I made a huge lasagne with greek salad (sans lettuce, though, I still hate lettuce too much lol). 🥫🧄 There was a reaction, but it was much milder than last time (recorded in the previous entry), so that’s a small win. 🤣

My brain did feel more inflamed over the following few days, however.

Nap Attacks 😴

I’m going to describe a symptom I’ve had for a really long time, which hasn’t resolved yet on the detox. I don’t know if it’s primarily a CFS or a dysautonomia thing, but what happens is I get irresistibly sleepy to the point where if I try to resist it my brain makes it impossible to read, talk, or move...I feel I’m in slow motion underwater, but my heart is racing. I used to get super cold, too, but my temperature isn’t as affected anymore.

If I try to move as soon as I feel it coming on, sometimes I can go get a supplement or something before I’m forced to sleep. But often I can barely get under a blanket.

It usually happens in the early afternoon, but it can happen in the morning, too. And I’m out for a good 3 to 5 hours. It’s not refreshing sleep. Makes me feel like I was pushed over and hit my head, because when I wake up it’s inflamed, extra-foggy, and irritable.

So I call it a “nap attack.”

Dr. Smith said this was likely caused by low potassium.

But I’ve had it happen right after I’ve taken my sodium/potassium water. Doesn’t seem to make a difference either way.

Still, my hypothesis right now is that he’s right about it being an electrolyte/hydration problem. Since magnesium plays a role in helping sodium and potassium cross cell membranes, maybe I need more of it? [8]

If anyone has another idea, I’d sure appreciate any insight.

Experimenting with Diet Composition and Supplements: Thinking Aloud About Variables? 🍳🍗🥔

I want to get to the bottom of the nap attack...

Do I need to eliminate even more foods to determine if there’s something in particular that triggers this extreme sleep reaction? I could go carnivore, and then slowly add back other foods one at a time?

Or is it time to re-introduce a small amount of vitamin A? One or two eggs and tablespoon of butter or so? I don’t want to get stuck in a rut if I’m missing something that could be improved.

Or should I give the gluten-free diet longer to work before adding more variables? Maybe six months?

Speaking of variables, I did start a bunch of new supplements on my own. Since I gave Dr. Smith’s customized detox supplement protocol a good year-and-a-half, I figure it’s time look at what’s going on from other angles.

I will add another update with all the details regarding supplements once I’ve been trying them longer. 😝

Okay, So Maybe There’s Some Good News 🌻🖤💛🖤💛

Over the past year, I’ve heard from multiple people who have recovered from mental illness after cutting out vitamin A from their diet. That makes me SO excited and hopeful for humanity to keep expanding our awareness, seeking knowledge, regaining harmony with nature, and increaseing our capacity for wellness.

I’m grateful to have found Grant’s hypothesis, as it has given me relief in many areas of my life. 🌼

I hope everyone is doing well! 😊💛 I intend to catch up on your logs over the next few months. Hope you have a beautiful day! ☀️

References:

[1] https://www.ncbi.nlm.nih.gov/books/NBK83492/?report=reader#introduction.s3

[2] https://pubmed.ncbi.nlm.nih.gov/26194613/

[3] https://www.verywellhealth.com/can-you-have-celiac-with-no-diarrhea-563131

[4] https://pubmed.ncbi.nlm.nih.gov/29226189/

[5] https://pubmed.ncbi.nlm.nih.gov/30060266/

[6] https://pubmed.ncbi.nlm.nih.gov/34040582/

[7] https://helloclue.com/articles/cycle-a-z/heavy-periods-consider-your-thyroid

[8] https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6524065/

Jenny, Janelle525 and 5 other users have reacted to this post.

#42 · March 3, 2022, 12:30 pm

Quote from puddleduck on March 3, 2022, 12:30 pm

Quote from Ourania on May 19, 2020, 8:38 pm

Thank you very much for putting together this long update. This is very encouraging! I am sorry to hear that Dr Costantini has passed away. I do not think that after three months you do not get more results from the thiamine supplementation. This has not been the case with me.

Maybe this is because I may have some problem with Thiamine utilization or other? Maybe because I am using lipophilic Thiamine? What I did find after more than two years of 200 mg or so a day of TTFD or Sulbutiamine, apart from many of the Vitamin A bonus results (extra hair etc) is that I started to get heavy vitamin A detox signs. At that point I did not know anything about Vitamin A, but this was so unpleasant, and I thought, maybe dangerous, that I stopped the Thiamine. At the same exact time I came upon a post by a lady called April on the TLO group introducing Grant's work. She most probably is here reading this! And I realized I was adding fuel into the fire with my diet, which contained mainly high Vitamin A/beta carotene foods.

I would like to add that all CFS/ME symptoms have disappeared from my life with the extra Thiamine. Some of them are creeping back with vitamin A detox. So both are obviously linked and there is hope.

Thank you for checking in with me this summer, @ourania! Sorry it has taken so very long to respond.

Your comment has been so helpful and encouraging to me, thanks. 😊 I must check out your log to see where you are with the thiamine supplementation now...

I lowered my dose of the Thiamine HCL pretty dramatically when I was having trouble sleeping and I thought maybe that was why. So I’m now only taking 500 mg.

I did get some of the allithiamine, too, but a single 50 mg capsule didn’t seem as helpful as 500 mg thiamine HCL, so I switched back... Perhaps I ought to experiment with increasing the dosages again now that I’ve started a magnesium supplement (that is a cofactor I’d overlooked until this year), or combining the two forms? So many possibilities...

Thanks again, Ourania! I hope you are continuing to see improvements. 🌼💛☀️

Quote from Ourania on May 19, 2020, 8:38 pm

Thank you very much for putting together this long update. This is very encouraging! I am sorry to hear that Dr Costantini has passed away. I do not think that after three months you do not get more results from the thiamine supplementation. This has not been the case with me.

Maybe this is because I may have some problem with Thiamine utilization or other? Maybe because I am using lipophilic Thiamine? What I did find after more than two years of 200 mg or so a day of TTFD or Sulbutiamine, apart from many of the Vitamin A bonus results (extra hair etc) is that I started to get heavy vitamin A detox signs. At that point I did not know anything about Vitamin A, but this was so unpleasant, and I thought, maybe dangerous, that I stopped the Thiamine. At the same exact time I came upon a post by a lady called April on the TLO group introducing Grant's work. She most probably is here reading this! And I realized I was adding fuel into the fire with my diet, which contained mainly high Vitamin A/beta carotene foods.

I would like to add that all CFS/ME symptoms have disappeared from my life with the extra Thiamine. Some of them are creeping back with vitamin A detox. So both are obviously linked and there is hope.

Thank you for checking in with me this summer, @ourania! Sorry it has taken so very long to respond.

Your comment has been so helpful and encouraging to me, thanks. 😊 I must check out your log to see where you are with the thiamine supplementation now...

I lowered my dose of the Thiamine HCL pretty dramatically when I was having trouble sleeping and I thought maybe that was why. So I’m now only taking 500 mg.

I did get some of the allithiamine, too, but a single 50 mg capsule didn’t seem as helpful as 500 mg thiamine HCL, so I switched back... Perhaps I ought to experiment with increasing the dosages again now that I’ve started a magnesium supplement (that is a cofactor I’d overlooked until this year), or combining the two forms? So many possibilities...

Thanks again, Ourania! I hope you are continuing to see improvements. 🌼💛☀️

Jenny, Beata and 4 other users have reacted to this post.

#43 · March 3, 2022, 4:23 pm

Quote from Jenny on March 3, 2022, 4:23 pm
Hi @puddleduck thanks for your update. I’m so sorry to hear you haven’t made the progress you were hoping for, but it sounds very like gluten has been a huge issue for you. My husbands family has coeliac disease in it and he now clearly has issues with it, although he tested negative, agreeing with the strong family predisposition. I hope that removing it will be a really helpful piece of your jigsaw.

We all have to put the pieces together. For me vA toxicity was a big part but not the only part of my health decline. I’ve needed to look elsewhere for answers to certain issues, such as anxiety (pyroluria). I think that vA toxicity knocks many things out of balance and, as you say, could have been a trigger for your genetic gluten sensitivity starting to show. I have no doubt that getting rid of excess vA is a vital element to healing (although the detox itself can be draining on resources). In some people I think vA toxicity happens due to slowed detoxification pathways rather than eating excess. I never really overdid vA but ended up toxic. If this is the case then addressing the reasons why one became susceptible to vA toxicity may be needed. Others just massively overdid vA.

It does sound like you have many positives from your low vA eating but not your core one of CFS and POTS. Hopefully the gluten removal will make all the difference.

I’ve recently been down a rabbit hole that may have relevance to you. I’ve been sent a preprint paper about long covid and NAD deficiency (the ALDH cofactor). It’s all about the upregulation of the ‘troublesome tryptophan’ pathway (the de novo NAD or kynurenine pathway) and includes a section on POTS. I feel that this pathway is important in CFS too (IDO metabolic trap theory) where it may be blocked, so that is slightly different. I don’t know how it all fits together but I have a feeling that perhaps upregulation of this pathway could be a problem for some of us here. It gets upregulated when the body runs short of NAD, which could happen with a prolonged detox. There are also many other reasons it gets upregulated such as inflammation, stress and covid. The problem is that it’s a tricky pathway with nasty toxic metabolites that can accumulate in some people. It’s an interesting paper that I’m still digesting. The POTS connection jumped out at me.

Hi @puddleduck thanks for your update. I’m so sorry to hear you haven’t made the progress you were hoping for, but it sounds very like gluten has been a huge issue for you. My husbands family has coeliac disease in it and he now clearly has issues with it, although he tested negative, agreeing with the strong family predisposition. I hope that removing it will be a really helpful piece of your jigsaw.

We all have to put the pieces together. For me vA toxicity was a big part but not the only part of my health decline. I’ve needed to look elsewhere for answers to certain issues, such as anxiety (pyroluria). I think that vA toxicity knocks many things out of balance and, as you say, could have been a trigger for your genetic gluten sensitivity starting to show. I have no doubt that getting rid of excess vA is a vital element to healing (although the detox itself can be draining on resources). In some people I think vA toxicity happens due to slowed detoxification pathways rather than eating excess. I never really overdid vA but ended up toxic. If this is the case then addressing the reasons why one became susceptible to vA toxicity may be needed. Others just massively overdid vA.

It does sound like you have many positives from your low vA eating but not your core one of CFS and POTS. Hopefully the gluten removal will make all the difference.

I’ve recently been down a rabbit hole that may have relevance to you. I’ve been sent a preprint paper about long covid and NAD deficiency (the ALDH cofactor). It’s all about the upregulation of the ‘troublesome tryptophan’ pathway (the de novo NAD or kynurenine pathway) and includes a section on POTS. I feel that this pathway is important in CFS too (IDO metabolic trap theory) where it may be blocked, so that is slightly different. I don’t know how it all fits together but I have a feeling that perhaps upregulation of this pathway could be a problem for some of us here. It gets upregulated when the body runs short of NAD, which could happen with a prolonged detox. There are also many other reasons it gets upregulated such as inflammation, stress and covid. The problem is that it’s a tricky pathway with nasty toxic metabolites that can accumulate in some people. It’s an interesting paper that I’m still digesting. The POTS connection jumped out at me.

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#44 · March 3, 2022, 7:40 pm

Thank you so much for your thoughtful reply, @jaj! 😊💛

I read your excellent NAD deficiency hypothesis thread last week, but my brain fog and inability to focus (the executive function difficulties are real lol) turned your worlds into mumbo jumbo... I’ve re-read the whole thread again carefully this evening, and this time I could comprehend what you were saying properly. 😂

Wow, Jenny! 😁 Congratulations on making this impressive and exciting connection. 🥳 I’m eager to better understand what you’ve figured out, and try testing possible strategies to see if it applies in my case. 🤞

I’ve just recently started Magnesium L-Threonate, which I noticed was listed in that image of all the different supplements that affect some of the pathways relating to...I haven’t grasped all the lingo yet...the NOX enzyme?

It does make total sense that this process could deplete us in certain areas. And I did have covid in autumn of 2020, which was right before having a pretty awful winter health-wise (insomnia, weight-loss, night sweats).

I’ve craved chicken, peanut butter, avocado, and brown rice often in the past year, all of which are high-niacin foods. Tonight I’ll take a smidge of niacin and see how that goes. I’ve taken it before without noticing any significant changes...but worth trying again to see if it acts differently in the lower vitamin A context, though!

Look forward to following your thread with interest as you add to it! 🙂

Thanks again, Jenny. I hope addressing the pyroluria specifically has helped the anxiety. 💟🌹

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#45 · March 4, 2022, 8:40 am

Thanks for your kind words @puddleduck. The NAD deficiency connection is very interesting and the upregulation of the de novo NAD pathway, with its nasty metabolites, makes a whole lot of sense to me. I think I’ve overdone the research so am having a break, probably used up all my available NAD! One long covid video pointed out that brain rest important too hmmm 🤔 haven’t been doing much of that!!

Adding in the pyroluria supplement, which includes 21 mg of activated B6, has made a MASSIVE difference to my anxiety levels. Had to use the capitals there! B6 needed to turn glutamate into GABA. B6 needed to turn tryptophan into serotonin. B6 also needed for the smooth running of the de novo NAD pathway (recent discovery). Pyroluria depletes B6. Excess aldehydes deplete B6. I’ve well and truly proved to myself that I need supplementary B6 at the moment. I’m trying not to kick myself too hard for allowing myself to believe that supplementing B6 is dangerous. I suffered a lot A LOT because of this. However, I’m trying to work out the minimal effective dose as B6 is an aldehyde and I know I’m not processing them well.

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#46 · March 4, 2022, 10:30 am

Quote from puddleduck on March 4, 2022, 10:30 am
Here are the supplements I am currently taking.

🔆 Most Helpful 🔆

These supplements make a noticeable difference when I do take them, and I suffer when I stop taking them.

🤍 Thiamine HCL - I take 500 mg daily.

🤍 Potassium Chloride + Sodium - I take 1/2 teaspoon salt with 1/8 teaspoon potassium chloride 2 - 3 times per day.

According to my eMoods Graphs (and a CFS/POTS Ability Scale I made from 1-10), the combination of Thiamine HCL and Potassium/Sodium at these doses brings my CFS/POTS down from an 8 (horizontal 8 hours a day with severe symptoms when standing and severe PEM) to about a 6 (gentle walks can happen a couple times a week, so long as I have a full rest day afterwards), which is life changing because it means I can take care of the household tasks if I’m careful to rest more than I expend energy.

🤍 Psyllium (1 tablespoon) + Activated Charcoal (1 teaspoon) - I mix together and let it gel a few minutes before drinking, twice daily upon wakening and before bed.

This specifically improves how I feel when I wake up every morning. If I skip for a few days, that CFS hangover feeling happens.

🤍 Zinc Picolinate - I’m on 50 mg daily, but had been taking 75 mg through most of 2021. It dramatically improves my immune system. The side effects for me are increased anxiety (just a bit) and worsened digestion.

🤍 Myo-Inositol - I take 2,000 mg daily.

It resolved my PCOS and OCD, and generally enables me to sleep through the night without waking up drenched in sweat.

🤍 Magnesium L-Threonate - I’ve only been taking this a few weeks so far, but I have noticed some interesting neurological changes since the start!

What sold me on trying it was the research showing it improves executive function (the ADD symptoms are BAD for me over here lol):

https://pubmed.ncbi.nlm.nih.gov/26519439/

But what I’ve noticed is my long-term memory being activated in flashes. It’s so bizarre. I keep having moments in the day where I vividly remember some location I used to know well in my childhood, and haven’t thought of in years...

I usually have what I call “intermittent aphantasia” (one of my many aspie symptoms)...Sometimes my mind’s eye goes dark for long periods. I’m a trained artist, but I cannot visualize the pictures I want to paint, or imagine the stories I want to tell...

So it’s pretty cool the Magnesium L-Threonate seems to be providing sudden bursts of full-colour imagination! 😍🌈✨

Over the past week, I’m seeing a slow shift in my ability to focus, too... Hoping this positive trend continues.

🔅 Subtle Support 🔅

In this category are the things I’m finding generally beneficial, but which don’t necessarily make a dramatic entrance or departure...

Those with asterisks are new additions I started at the start of February, and so still under review.

✔️ UVB Vitamin D Lamp

✔️ Near-Infrared Light Therapy (the warmth of both this light, and the UVB lamp, are nice in winter and help me start my day off with a gentle “lift” like how going for a brisk walk in the fresh air makes most healthy people feel)

✔️ Castor Oil Packs (it’s messy, so I don’t do it every day, but it seems to improve digestion a little)

✔️ Taurine (somewhat lowers the “toxic”/“hangover” feeling with CFS)

✔️ Molybdenum

✔️ Selenium

✔️ Magnesium Chloride Spray

✔️ Vitamin K Drops

✔️ Lactoferrin (conflicted and confused about this one...will make a post about it specifically at some point)

✔️ Nutritional Yeast (with B12, B6, and pretty much all the rest in small doses—it functions as my B multi)

✔️ Ubiquinol

✔️ D-Ribose*

✔️ Acetyl L Carnitine (ALCAR)*

✔️ “Ferritin Bioavailable Iron” (5 mg capsules 1 x day) by Cardiovascular Research*

〽️ Did Not Work 〽️

(Most of these I no longer take.)

❌ Allithiamine - Have been experimenting with this again the last couple of days.

Within two days of taking 100 mg, I developed bad insomnia with mild negative rumination. 😕 At 50 mg it doesn’t seem to do much, other than make me feel mildly wired?

For whatever reason, this form doesn’t agree with me.

Everyone in my family who takes it reports better focus and less anxiety, though, so I don’t want to discourage anyone else from taking it.

❌ Boron - Noticed nothing.

❌ Riboflavin - Noticed nothing.

❌ Biotin - Noticed nothing.

❌ Niacin [corrected: Inositol Hexanicotinate] - Noticed nothing... But I’m going to test small doses of it again for the next few days to see if it is helpful now, based on Jenny’s hypothesis.

ETA: Correction on the form of B3 I'd tried when working with Dr. Smith. It was NOT niacin, but rather a non-flushing form called Inositol Hexanicotinate. Have now ordered the form of niacin Jenny suggested and will test that out instead.

Here are the supplements I am currently taking.

🔆 Most Helpful 🔆

These supplements make a noticeable difference when I do take them, and I suffer when I stop taking them.

🤍 Thiamine HCL - I take 500 mg daily.

🤍 Potassium Chloride + Sodium - I take 1/2 teaspoon salt with 1/8 teaspoon potassium chloride 2 - 3 times per day.

According to my eMoods Graphs (and a CFS/POTS Ability Scale I made from 1-10), the combination of Thiamine HCL and Potassium/Sodium at these doses brings my CFS/POTS down from an 8 (horizontal 8 hours a day with severe symptoms when standing and severe PEM) to about a 6 (gentle walks can happen a couple times a week, so long as I have a full rest day afterwards), which is life changing because it means I can take care of the household tasks if I’m careful to rest more than I expend energy.

🤍 Psyllium (1 tablespoon) + Activated Charcoal (1 teaspoon) - I mix together and let it gel a few minutes before drinking, twice daily upon wakening and before bed.

This specifically improves how I feel when I wake up every morning. If I skip for a few days, that CFS hangover feeling happens.

🤍 Zinc Picolinate - I’m on 50 mg daily, but had been taking 75 mg through most of 2021. It dramatically improves my immune system. The side effects for me are increased anxiety (just a bit) and worsened digestion.

🤍 Myo-Inositol - I take 2,000 mg daily.

It resolved my PCOS and OCD, and generally enables me to sleep through the night without waking up drenched in sweat.

🤍 Magnesium L-Threonate - I’ve only been taking this a few weeks so far, but I have noticed some interesting neurological changes since the start!

What sold me on trying it was the research showing it improves executive function (the ADD symptoms are BAD for me over here lol):

https://pubmed.ncbi.nlm.nih.gov/26519439/

But what I’ve noticed is my long-term memory being activated in flashes. It’s so bizarre. I keep having moments in the day where I vividly remember some location I used to know well in my childhood, and haven’t thought of in years...

I usually have what I call “intermittent aphantasia” (one of my many aspie symptoms)...Sometimes my mind’s eye goes dark for long periods. I’m a trained artist, but I cannot visualize the pictures I want to paint, or imagine the stories I want to tell...

So it’s pretty cool the Magnesium L-Threonate seems to be providing sudden bursts of full-colour imagination! 😍🌈✨

Over the past week, I’m seeing a slow shift in my ability to focus, too... Hoping this positive trend continues.

🔅 Subtle Support 🔅

In this category are the things I’m finding generally beneficial, but which don’t necessarily make a dramatic entrance or departure...

Those with asterisks are new additions I started at the start of February, and so still under review.

✔️ UVB Vitamin D Lamp

✔️ Near-Infrared Light Therapy (the warmth of both this light, and the UVB lamp, are nice in winter and help me start my day off with a gentle “lift” like how going for a brisk walk in the fresh air makes most healthy people feel)

✔️ Castor Oil Packs (it’s messy, so I don’t do it every day, but it seems to improve digestion a little)

✔️ Taurine (somewhat lowers the “toxic”/“hangover” feeling with CFS)

✔️ Molybdenum

✔️ Selenium

✔️ Magnesium Chloride Spray

✔️ Vitamin K Drops

✔️ Lactoferrin (conflicted and confused about this one...will make a post about it specifically at some point)

✔️ Nutritional Yeast (with B12, B6, and pretty much all the rest in small doses—it functions as my B multi)

✔️ Ubiquinol

✔️ D-Ribose*

✔️ Acetyl L Carnitine (ALCAR)*

✔️ “Ferritin Bioavailable Iron” (5 mg capsules 1 x day) by Cardiovascular Research*

〽️ Did Not Work 〽️

(Most of these I no longer take.)

❌ Allithiamine - Have been experimenting with this again the last couple of days.

Within two days of taking 100 mg, I developed bad insomnia with mild negative rumination. 😕 At 50 mg it doesn’t seem to do much, other than make me feel mildly wired?

For whatever reason, this form doesn’t agree with me.

Everyone in my family who takes it reports better focus and less anxiety, though, so I don’t want to discourage anyone else from taking it.

❌ Boron - Noticed nothing.

❌ Riboflavin - Noticed nothing.

❌ Biotin - Noticed nothing.

❌ Niacin [corrected: Inositol Hexanicotinate] - Noticed nothing... But I’m going to test small doses of it again for the next few days to see if it is helpful now, based on Jenny’s hypothesis.

ETA: Correction on the form of B3 I'd tried when working with Dr. Smith. It was NOT niacin, but rather a non-flushing form called Inositol Hexanicotinate. Have now ordered the form of niacin Jenny suggested and will test that out instead.

Jenny, Orion and 5 other users have reacted to this post.

#47 · March 4, 2022, 10:54 am

Quote from puddleduck on March 4, 2022, 10:54 am

Quote from Jenny on March 4, 2022, 8:40 am

Thanks for your kind words @puddleduck. The NAD deficiency connection is very interesting and the upregulation of the de novo NAD pathway, with its nasty metabolites, makes a whole lot of sense to me. I think I’ve overdone the research so am having a break, probably used up all my available NAD! One long covid video pointed out that brain rest important too hmmm haven’t been doing much of that!!

Adding in the pyroluria supplement, which includes 21 mg of activated B6, has made a MASSIVE difference to my anxiety levels. Had to use the capitals there! B6 needed to turn glutamate into GABA. B6 needed to turn tryptophan into serotonin. B6 also needed for the smooth running of the de novo NAD pathway (recent discovery). Pyroluria depletes B6. Excess aldehydes deplete B6. I’ve well and truly proved to myself that I need supplementary B6 at the moment. I’m trying not to kick myself too hard for allowing myself to believe that supplementing B6 is dangerous. I suffered a lot A LOT because of this. However, I’m trying to work out the minimal effective dose as B6 is an aldehyde and I know I’m not processing them well.

So feel you on the need to rest the brain, @jaj! Interesting that NAD gets used up through mental exertion...As you know I’m sure, people with much more severe CFS than I do suffer terribly with little capacity to process light or sound even, so they rest in a dark, quiet room all the time like someone who has had a concussion. 💔

Ah I’m sorry that B6 paranoia had such a negative impact on you... ☹️ I understand the excessive fear-mongering about supplements is especially stressful when we’ve had bad experiences with some supplements already, and the bad state of anxiety makes that fear SO much worse. Pyroluria sounds like an absolutely awful time when it’s untreated... And it’s so difficult to see the most likely path forward when you are struggling and stretched thin in so many areas physically and emotionally.

But I’m so happy to know you’ve found such a big puzzle piece, and because you have surely it’ll be easier to find the next one. 😊 🧩 It must be SUCH a HUGE relief to be able to reliably bring down that anxiety!! (Capitals for emphasis are the way lol!)

Wishing you restful moments in the near future. ☀️💛

Quote from Jenny on March 4, 2022, 8:40 am

Thanks for your kind words @puddleduck. The NAD deficiency connection is very interesting and the upregulation of the de novo NAD pathway, with its nasty metabolites, makes a whole lot of sense to me. I think I’ve overdone the research so am having a break, probably used up all my available NAD! One long covid video pointed out that brain rest important too hmmm haven’t been doing much of that!!

Adding in the pyroluria supplement, which includes 21 mg of activated B6, has made a MASSIVE difference to my anxiety levels. Had to use the capitals there! B6 needed to turn glutamate into GABA. B6 needed to turn tryptophan into serotonin. B6 also needed for the smooth running of the de novo NAD pathway (recent discovery). Pyroluria depletes B6. Excess aldehydes deplete B6. I’ve well and truly proved to myself that I need supplementary B6 at the moment. I’m trying not to kick myself too hard for allowing myself to believe that supplementing B6 is dangerous. I suffered a lot A LOT because of this. However, I’m trying to work out the minimal effective dose as B6 is an aldehyde and I know I’m not processing them well.

So feel you on the need to rest the brain, @jaj! Interesting that NAD gets used up through mental exertion...As you know I’m sure, people with much more severe CFS than I do suffer terribly with little capacity to process light or sound even, so they rest in a dark, quiet room all the time like someone who has had a concussion. 💔

Ah I’m sorry that B6 paranoia had such a negative impact on you... ☹️ I understand the excessive fear-mongering about supplements is especially stressful when we’ve had bad experiences with some supplements already, and the bad state of anxiety makes that fear SO much worse. Pyroluria sounds like an absolutely awful time when it’s untreated... And it’s so difficult to see the most likely path forward when you are struggling and stretched thin in so many areas physically and emotionally.

But I’m so happy to know you’ve found such a big puzzle piece, and because you have surely it’ll be easier to find the next one. 😊 🧩 It must be SUCH a HUGE relief to be able to reliably bring down that anxiety!! (Capitals for emphasis are the way lol!)

Wishing you restful moments in the near future. ☀️💛

Jenny, kathy55wood and Joe2 have reacted to this post.

#48 · March 4, 2022, 1:05 pm

Quote from puddleduck on March 4, 2022, 1:05 pm

Quote from Rachel on May 20, 2020, 3:00 am

Thanks for that detailed update. Well done in sticking with it. Like you I believe the soluble fibre is a really important addition. I hope you continue to progress and that now you have a good exit route for the VA that you see an increase in improvements.

I'll post this separately on my progress thread soon but I have just had a retinol test done and my levels have actually increased since last time (6 months ago). It has gone from 1.51 umol/L Oct 2019 to 1.88 umol/L last week.

Whilst disappointed not to see a drop, I was kind of prepared for this as I had a gut feeling it might happen. I believe that for the first year of low VA I have basically not been adding to my existing toxicity but have essentially simply been recycling the VA that my body has been attempting to excrete. I believe that with the addition of soluble fibre, I now am able to excrete it causing an increase in my serum levels as the VA is mobilised. I'm hoping that is true anyway. I remember Dr Smith showing case study research where peoples serum levels initially go up as they detox the VA and am hoping that this is a sign of something positive happening.

I hope it goes well with your testing and consult with Dr Smith.

This makes total sense. I think you’re right, @rachel. I’d bet many of us increased our blood retinol when we first started the detox, and probably this continues to happen whenever we trigger a large “dump” of it by ramping up the detox pathways in this way or that at least temporarily, until our elimination system is ticking like clockwork (a difficult feat).

Even though I’ve continued to eat beans almost every day, I had cut back on them quite a bit in favour of doing more whole rye and whole wheat due to some information on gut dysbiosis in Dr. Smith’s Detox Network. So that was counterproductive in my case (due to the gluten situation). 😂

Beans were working, so it was a mistake on my part not to keep up with that. 🙃

The 1/2 cup of bean 3 to 6 times per day as Karen Hurd suggests was helpful, so I’m going back to that and have started tracking my intake to see if I notice any specific changes.

I hope your last 2 years on the detox have been positive for you! 🙂 I noticed your log hasn’t been active for a while, but I see you’re still posting and I’m curious about how your experiments with beans went, and if you’ve seen some positive changes through working with Dr. Smith—I do hope so! ☀️💛 I’ll leave you a message in your log soon. I do hope you’re doing well.

Quote from Rachel on May 20, 2020, 3:00 am

Thanks for that detailed update. Well done in sticking with it. Like you I believe the soluble fibre is a really important addition. I hope you continue to progress and that now you have a good exit route for the VA that you see an increase in improvements.

I'll post this separately on my progress thread soon but I have just had a retinol test done and my levels have actually increased since last time (6 months ago). It has gone from 1.51 umol/L Oct 2019 to 1.88 umol/L last week.

Whilst disappointed not to see a drop, I was kind of prepared for this as I had a gut feeling it might happen. I believe that for the first year of low VA I have basically not been adding to my existing toxicity but have essentially simply been recycling the VA that my body has been attempting to excrete. I believe that with the addition of soluble fibre, I now am able to excrete it causing an increase in my serum levels as the VA is mobilised. I'm hoping that is true anyway. I remember Dr Smith showing case study research where peoples serum levels initially go up as they detox the VA and am hoping that this is a sign of something positive happening.

I hope it goes well with your testing and consult with Dr Smith.

This makes total sense. I think you’re right, @rachel. I’d bet many of us increased our blood retinol when we first started the detox, and probably this continues to happen whenever we trigger a large “dump” of it by ramping up the detox pathways in this way or that at least temporarily, until our elimination system is ticking like clockwork (a difficult feat).

Even though I’ve continued to eat beans almost every day, I had cut back on them quite a bit in favour of doing more whole rye and whole wheat due to some information on gut dysbiosis in Dr. Smith’s Detox Network. So that was counterproductive in my case (due to the gluten situation). 😂

Beans were working, so it was a mistake on my part not to keep up with that. 🙃

The 1/2 cup of bean 3 to 6 times per day as Karen Hurd suggests was helpful, so I’m going back to that and have started tracking my intake to see if I notice any specific changes.

I hope your last 2 years on the detox have been positive for you! 🙂 I noticed your log hasn’t been active for a while, but I see you’re still posting and I’m curious about how your experiments with beans went, and if you’ve seen some positive changes through working with Dr. Smith—I do hope so! ☀️💛 I’ll leave you a message in your log soon. I do hope you’re doing well.

Beata, Ourania and 2 other users have reacted to this post.

#49 · March 9, 2022, 4:07 am

Hi puddleduck,

I always love reading your updates. You are so thoughtful and detailed in your writing.

I get nap attacks too. To me, the sleepiness feels almost painful if I try to resist. They tend to happen to me shortly after eating lunch in the afternoon. I've also tried potassium supplementation and that didn't help me either. I unfortunately don't have a solution to them. But I was honestly glad to read I wasn't alone in this symptom. I really hate it because I feel like I sleep away a good amount of my day. They also tend to happen intensely on some days when I consume dairy...

I am so happy to hear that your PCOS has been completely reversed and that your mental health has improved.

I was wondering, are you still taking cold pressed seed oils? If so, how much and of what kind do you take in a day? I tried them for a while and they helped with my vicious insomnia. I stopped after a while out of fear of PUFAs, but thinking I should give them another try.

Looking forward to your posts 🙂

Jenny, puddleduck and 3 other users have reacted to this post.

#50 · March 14, 2022, 8:00 am

@leap7 Uggg! I am sorry you are dealing with the same thing. 😤😴😫 I know what you mean when you say “painful”... It’s quite a forceful attack!

But it’ll be useful to compare notes! 😊 Since paying attention so far, I have observed a meal of oatmeal seemed to make it worse... And one day I took NeuroMag (Magnesium L-Threonate) as it was coming on, which seemed to keep it from fully taking over! Could’ve been a coincidence, so I will see if the results are repeatable and report back.

Due to the 😷 situation, I haven’t been able to get the Flora Sunflower Oil anymore. 🌻 But I still eat the hulled sunflower seeds and hemp hearts (when I remember 😬), and think they are helpful overall. 🙂 That’s amazing the raw oils seemed to help your insomnia! Wow! 😁 Insomnia is such a terrible affliction. Being able to sleep makes recovery so much easier. It’s so hard to figure out which foods are important to have every day, and which can be a problem...So much conflicting information out there.

Jenny, leap7 and 2 other users have reacted to this post.

puddleduck’s progress (CFS symptoms)

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