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puddleduck’s progress (CFS symptoms)
Quote from puddleduck on March 25, 2022, 12:26 pmHave started to brew kombucha, and am looking into getting water kefir. My stomach has been SO bloated this year... Maybe with all the fiber some of these beneficial microorganisms will stick around!
or maybe you have too much fiber in your diet. if you want the butyrate you could try a tributyrin supplement instead.
Hello Puddleduck, I have been reading your log and finding it very interesting. I have a lot of symptoms in common with you.
I admire your ability to relate your experiences; anyone with CFS knows it can be overwhelming because of the amount of symptoms, the amount of trial and failures, and the fatigue that makes writing such long posts very difficult. I also admire that you, like so many here, aren't giving up.
I just wanted to mention that you might want to try pantothenic acid for a number of reasons. It helps with acetylcholine formation which can help POTS or orthostatic hypotension. (Niacin lowers blood pressure, and although there are a lot of good reasons for taking it, it doesn't work for everyone.) There are several places where it is mentioned that pantothenic acid helps with gluten sensitivity, although I haven't seen an explanation, and it has helped me greatly in that area. Another reason is that when taking thiamine and the metabolism starts to kick in, one can run low on pantothenic acid, sort of like you burn through it. Doctor Gominak has some online videos about pantothenic acid (and Vitamin D) that are very interesting.
Take care,
Betsy
Quote from Patrick on April 2, 2022, 6:29 pmSo, L-citrulline apparently is a really good treatment for Brain fog as well? I'm having brain fog for a long time now and nothing that i tried yet seems to help it.
Unfortunately, there isn't solid scientific evidence of that, no.
I couldn't find any studies examining the impact of L-citrulline supplementation on brain fog or CFS. The idea is that CFS patients may tend to have low nitric oxide levels, and L-citrulline may raise them.* The consequences of attempting to do so aren't known, especially over the long-term.
Researchers are still seeking to better understand how nitric oxide affects the human brain, but here's a summary of what they've found out so far:
Why is nitric oxide important for our brain? - PMC (nih.gov)
When I took L-citrulline for about a week in April, I didn't noticeably respond to it. Will continue to experiment with it, but it may simply not do much in my case... The anecdotal reports I posted earlier are interesting, though!
I am sorry to hear you're dealing with brain fog. Did you end up deciding to try the L-Citrulline? If so, how'd it go?
Have you ever tried Magnesium L-Threonate? There seems to be more evidence supporting the beneficial effect on the brain from supplementation of that; for example:
Enhancement of Learning and Memory by Elevating Brain Magnesium: Neuron (cell.com)
And I'm finding it quite helpful in that regard, myself.
Thanks for stopping by my log, Patrick. I hope all your efforts to find something that will improve the brain fog you're dealing with will pay off someday (preferably sooner than later, eh?). All the best! 😊
Quote from Elizabeth on May 30, 2022, 12:01 pmHello Puddleduck, I have been reading your log and finding it very interesting. I have a lot of symptoms in common with you.
I admire your ability to relate your experiences; anyone with CFS knows it can be overwhelming because of the amount of symptoms, the amount of trial and failures, and the fatigue that makes writing such long posts very difficult. I also admire that you, like so many here, aren't giving up.
I just wanted to mention that you might want to try pantothenic acid for a number of reasons. It helps with acetylcholine formation which can help POTS or orthostatic hypotension. (Niacin lowers blood pressure, and although there are a lot of good reasons for taking it, it doesn't work for everyone.) There are several places where it is mentioned that pantothenic acid helps with gluten sensitivity, although I haven't seen an explanation, and it has helped me greatly in that area. Another reason is that when taking thiamine and the metabolism starts to kick in, one can run low on pantothenic acid, sort of like you burn through it. Doctor Gominak has some online videos about pantothenic acid (and Vitamin D) that are very interesting.
Take care,
Betsy
Thank you so much for your thoughtful and encouraging message, Betsy. 😊 And welcome to the forum! 😀 Though I'm always sorry to hear when anyone else has CFS/ME, it is exciting you've decided to test out this hypothesis, too. I hope very much we'll be able to figure out if hypervitaminosis A might be a contributing factor to this particular syndrome or not.
I haven't yet looked up Dr. Gominak on YouTube, but what you've written makes sense and sounds intriguing. I appreciate your taking the time to share the resource with me, and I will watch the videos soon! I've been wanting to start a daily multi B vitamin supplement, so I will be sure to look for one that has pantothenic acid.
All the best to you during this detox process! I look forward to following your journey through your log. 🙂
January 13th, 2023
Happy New Year, everyone! 😊🌟💛✨ I hope this year brings you continued healing, and everything your soul needs to thrive in the present besides.
Catching up on a few of the threads here over the past few weeks, I feel such love and gratitude towards every one of you. Thank you for continuing to seek solutions to the problems we run into as we test this hypothesis, and for refusing to be satisfied by any sort of rigid dogma. Your curiosity, kindness, honesty, and vulnerability are a healing force! 🌻☀️🐝🌈
If you are discouraged or struggling right now, I hope 2023 brings you new ideas to try and that some of those little changes you make will lead to little breakthroughs, building in momentum and leading you towards the health improvements you’ve been waiting so long to see!
Patience is a virtue I’ve been forced to develop to a saintly degree, but sometimes I do get stuck in an “oh well, this just takes time” mindset, which can keep me from seeking different perspectives or choosing to act upon a new idea that feels right... A bit of new knowledge, and a simple action sometimes ends up making all the difference! 🙂🙏 (With failures along the way, of course.)
Four Year Update
December 21st, 2022
Since my last post here, I am happy to report I’ve made significant progress in my CFS/POTS recovery! I can’t say I’m “all better” yet, but I have been able to enjoy periods of almost “normal” function—or at least “normal” for me as a neurodivergant woman—with far less severe PEM crashes afterwards than I’d normally expect to endure. 😁
In July and August of this year (2022) I worked 12-hour-days for a temporary job which lasted around two weeks (with no weekend breaks). Additionally, I went swimming and hiking to “relax” after the job ended.
This is something I haven’t been able to do since...well...now that I think about it, not since I first got CFS/POTS sixteen years ago! 🤯 (My two semesters at college weren’t nearly so physically intense.)
Throughout August, even though I rested lots to recover, I was able to continue going on walks every week (sometimes even multiple walks), and I finished reading a book (another activity that has been a huge challenge for me—and rarely completed—since getting CFS/POTS)!
So...did I make any tweaks to what I was doing before this breakthrough? Yes, I did. And they weren’t the things I particularly expected to make a big difference, either...
My Failed Liver Flushes + Malic Acid
I decided to try liver flushing for the first time right before the intense job started. Took cherry juice and malic acid for however many days Andreas Moritz says to do so, avoided eating fatty foods for the day before the flush, then drank the olive oil and fresh grapefruit juice (it was easy to get down)...
...and nothing happened.
The problem might’ve been that I didn’t take as much magnesium citrate as he stipulated, so I tried it again a couple months later with double the amount of olive oil and grapefruit juice he suggests, as well as double the amount of magnesium citrate I had taken the first time (still less than his recommendation, however).
Yet my digestion remained perfectly normal. And there was no queasiness from the oil, or anything.
At some point I might try it again with epsom salts, taking the full amount Andreas Moritz says to use, but seeing as I can digest huge amounts of fats easily I kinda figure my gallbladder is working just fine. 😂
But back to the weeks I was working: I continued taking the malic acid.
Apparently this stuff may improve fibromyalgia in some patients. [1] This is perhaps partly because it aids the absorption of calcium and magnesium, and also because it assists the body in producing ATP. [2]
Right now, I’m taking 800 mg twice daily, accompanied by magnesium citrate and magnesium l-threonate in the morning, and by coral calcium at night.
Diatomaceous Earth
In July, I started taking a tablespoon of this sea dust stuff in water daily. This was not long before I took my summer job.
Yes, I did skim Kerri Rivera’s e-book, and while I decided against experimenting with Dr. Smith’s “secret supplement,” Rivera did inspire me to do a web search for “diatomaceous earth,” which led me to a bunch of anecdotal reports on random—and I mean random—message boards saying it improved a surprising variety of health conditions. [3] [4]
As far as I could tell, I didn’t experience any parasite cleansing effect. (Didn’t think that was an issue in the first place.)
There’s a real possibility it’s nonsense, did nothing, and could well be harmful (so please don’t copy my questionable experiments lol), but there’s a chance it contributed to my improvements over the summer for some mysterious reason.
“Energy improvement” was one of the common reports on the message boards, and why I decided to give it a go.
I stopped taking it for the past few months, but I am going to start it up again soon to see what, if any, changes I notice.
Side-note: I’ve been adding activated charcoal and diatomaceous earth to my cat’s kibble, and she is healthier and her fur has gotten waaay silkier!
Pyroluria + Multi-B Vitamins
Near the end of summer, I started taking a high-quality multi-B vitamin from AOR (Advanced B-Complex Ultra) containing an appropriate amount of B6, which I’d not tried since starting the detox.
It caused insomnia right away.
I kept trying it, in smaller and smaller amounts, and each time I’d get insomnia. 😫
Not sure if pyroluria is a factor I’m dealing with, but I used to have many of the symptoms, so I figured it was worth a shot.
Am leaving it alone for now, because I think I’d need to hire a professional to figure out this pyroluria factor further, which is always an option if it seems necessary in the future.
Stopping All Supplements = Sickness + Tooth Infection
In September 2022, I stopped taking most of my supplements in order to add them back in one-at-a-time to see what was truly helping and what wasn’t.
Looking back, it probably would’ve been better to apply the “if it’s working, continue what you’re doing” tactic, but self-sabotage was a learning experience, at least. 😂
Within a week of stopping the thiamine, I was blacking out all the time (a.k.a. “feelin’ potsy”) so I got back on that first.
Then I got sick for a week and developed a bad tooth infection at the same time. Started back on molybdendum and selenium, and took extra iron (15 mg daily) and zinc (300 mg daily) to reverse it.
Once better, I continued to take iron and zinc at higher dosages than I had before, because I seem to feel best at them (10 mg iron + 150 mg zinc daily). Reducing either of these minerals is NOT working for me, and lowers my immunity rapidly.
I regret not supplementing iron sooner, because it has improved my POTS, thusly improving my CFS/ME by keeping my heart rate lower!
My thiamine hcl dose is now only 1/8 of a teaspoon daily (250 mg)! It’s exciting to be able to progressively lower a supplement upon which I have relied so heavily.
Night Sweats are GONE! Even without Inositol, unless...
So I stayed off the inositol all autumn, and even once winter began the severe night sweats I used to get stayed away! (They were always the WORST in winters’ past.)
However, it turns out my diet can still trigger night sweats, and this has been interesting to observe...
...one night, after consuming a large amount of cheese, I had a night sweat so severe it drenched my half of the bed right through the thick mattress protectors. This was the only such night sweat to occur this autumn/winter.
I have also noticed sometimes I’ll get milder sweats if I eat more vitamin A than usual.
I’m curious if this is a hormonal reaction or what precisely causes it...but I figure it means I’m not done detoxing yet, and should probably stop experimenting with the high vitamin A foods!
Speaking of vitamin A foods...
My Vitamin A Tolerance Has Increased!
I am now able to consume a meal containing vitamin A without digestive distress of any kind! (With the exception of hot peppers—those still mess with my gut bigtime. 😅)
Strangely enough, however, there are clear negative neurological effects if I ingest too much...particularly if I do so for multiple days in a row, or I neglect to take my charcoal/psyllium/clay mixture in water before bed and in the morning.
Symptoms can include:
- sudden shifts in mood (low-key hypomania, mild anxiety, and mild depression) which I do not otherwise experience, typically lasting 24-hours following ingestion
- severely lowered appetite, lasting 48 to 72 hours following ingestion
- a short “PEM crash” (major brain-fog, and a “hungover” unrested feeling in the morning)
- severe insomnia that night, and sometimes milder insomnia the following night
- “burning brain” (inflammation sensation headache the following day)
- acne (particularly if the source of vitamin A was dairy)
- night sweats (as explained in the previous section)
These symptoms are more or less severe depending upon the quantity of vitamin A consumed.
My suspicion mental illness may be the result of poisoning in a state of nutrient deficiency has been strengthened by observing and recording my reactions to vitamin A this autumn/winter over and over again.
Until August 2022, I had stayed under 3% of the RDA of vitamin A practically every single day of the detox. Now, I seem to be able to handle 10% of the RDA without issue (if I’m taking my charcoal and psyllium, that is). So a clementine (4% of the RDA) or half a cup of tomato sauce (4% of the RDA) in addition to my otherwise low-va diet doesn’t affect my gut or brain noticeably, which is great!
Going up to 15% or 20% seems to be all right when going out for a special occasion meal or something like that, which is a major improvement for me! (And one I don’t want to abuse.)
Once in a blue moon, I’ll try to go higher. I made cheesy scrambled eggs one evening (three eggs, goat cheese, and heavy cream = 60%+ of the RDA for vitamin A) and that was too much.
For whatever reason, dairy protein and spicy peppers seem to cause the most problems of all vitamin A sources, so I think it’s best to continue to avoid them as much as possible, but I’ve wanted to be able to tolerate an egg or two a day or a pat of butter here or there since starting this detox process. And I do seem to be getting closer to that goal. 🥚🧈🍳
I am currently using eggs (but not butter) when baking muffins and pancakes and such (they do make gluten-free baking much easier 😂), but am only eating a whole egg once a week and observing my reaction each time (at 11% of the RDA of vitamin A per egg, I try not to eat other vitamin A sources that day).
Dental Health 🦷
My teeth seemed to be doing all right, until this autumn, when a new hole developed in one tooth...Could it be because I started consuming more vitamin A, or was it because I stopped taking zinc temporarily? 😟
When I started reading about oxalates, I wondered if this was a factor contributing to this symptom, especially as avoiding dairy means my calcium intake is considered inadequate...
Ultimately, celiac disease—if that is what I’ve had—negatively affects mineral absorption, too, and increasing mineral levels seems to be a major struggle for my body.
This symptom prompted me to begin the calcium supplement, which I take with malic acid. And I also began an oral probiotic.
Oxalate Dumping
I finally felt like I had the energy and financial stability to dig deeper into the chronic oxalate-toxicity hypothesis this winter. [5]
Lowering my oxalate intake to 50 mg daily triggered noticeable “dumping” symptoms, so I figured this was the next dietary change to tackle.
Fortunately my favorite and best tolerated fruits and vegetables (apples and cabbage) are low-oxalate, but I wasn’t thrilled about lowering my brown rice and bean intake (I wish I weren’t gluten-free so I could have delightfully delicious and low-oxalate barley, but alas 😩).
So far, this change has impressed upon me the importance of meat and fat! From the start of my low-va journey, I relied heavily on whole grains and beans because they were affordable protein sources, but I feel stronger and clearer eating more meats every day. 🥩💪
Having read about the issues oxalate can cause when it comes to mineral balance in the body, I am now wondering if this might be part of the reason I have struggled so much to raise my zinc and iron levels over the years?
I will say that “dumping” isn’t fun (lower back pain in the kidney area comes and goes), and for me it requires plenty of rest.
Thyroid + Iodine
I’ve started taking natural iodine drops to support my thyroid as it hopefully starts to detoxify any oxalate that may be affecting it for the worse.
I’d like my TSH to be lower next time I get bloodwork done.
But there have been positive signs! Back when I started this low-vitamin A experiment, my hair would keep falling out... But that doesn’t happen anymore, and I’ve noticed even my eyelashes and eyebrows have lengthened and filled-in since.
Exercise + POTS
My daily schedule now includes a short functional strength training exercise and stretch routine! It’s quite exciting for me, as this isn’t something I would’ve been able to do a year ago without triggering a “PEM crash.”
My POTS still affects my heart rate, but it’s less out-of-control than it was. Walking used to push my heart rate to the max. And standing still or doing dishes would feel like running.
But even though I still experience a 30 bpm difference between lying down and standing still upright, it doesn’t go as runaway crazy anymore when I move around, and my CFS doesn’t freak out as much if I push beyond my “heart-rate envelope.” 😅❤️✉️
Seeing improvements here at last feels soooo good! 😊
Organizing My Brain and Life
Throughout last summer and autumn, my brain decided to do take me on a cleanse of its own, so to speak... I realized I was hoarding boxes due to some personal trauma (and the stress of the, ahem, “worldwide situation”), and that I needed to clear the fear—which manifested as a readiness to pack boxes and run away—out of both my home and my mind, too.
I de-cluttered my entire apartment, and decided to “settle in” properly by decorating and organizing my little space into a cosy and functional home.
Polyvagal Theory + Social Media/News Media Break
In September 2022, I started learning polyvagal theory from a life coach, and for the rest of autumn I took a break from all sources of stressful “news-related” content available online.
Instead, I watched chill art vlogs, listened to cosy mysteries on audiobook, and took an expressive arts class. I practiced emotional awareness and breathing exercises.
I also implemented a morning routine, which means I’ve been consistently utilizing my near infrared light and vitamin D lamp this winter. Another positive factor!
Working with a coach—now that I have the energy to handle it—has helped me, so I am going to continue working with her in the New Year as I figure out the best way to pursue goals I couldn’t physically accomplish prior to this summer, whilst learning my new limits!
Thanks Again to Each of You 🦋
I’m so grateful for Grant, every single poster here (y’all are so smart), and for Dr. Smith and the lovely and kind folks in his private network (if you’re a member there whom I owe a DM response, I’m sorry for the delay, but please know I am rooting for each of you in my heart) for sharing your observations, stories—both low points as well as high—knowledge, and humor. 💛
This experiment has not been without it’s difficult moments, but thanks to all of you I haven’t felt alone once. 😊🌻☀️ I feel like a lucky duck. 🍀🦆 So again, thank you guys.
References:
[1] https://cfsremission.com/2012/11/18/magnesium-and-malic-acid/
[2] https://ammes.org/treatment/malic-acid/
[3] https://longhaircareforum.com/threads/diatomaceous-earth-reviews-please.424078/
[4] https://www.therawtarian.com/community/f/discussion/10415/diatomaceous-earth
[5] https://youtube.com/playlist?list=PLZPlb2-Xf5Tx0sbelKFIXmtNTfnB3ljRy
The Eggsperiment 🥚🥚🥚🥚
I’m still only partway through reading the long “Eggs as part of Vitamin A reduction” thread, but I decided to join Andrew’s great “eggsperiment!” 😂
What Andrew said about people with gluten issues having a greater need for choline applies in my situation, and makes total sense.
This September when I got sick and had the tooth infection, I felt so fragile. It was somewhat disheartening how much zinc and iron and selenium and molybdenum I seemed to need in order to keep my immune system functioning properly. And littler things seemed to trigger insomnia more quickly than they did prior...
I figured oxalate and oxalate dumping explained this difficulty, but it now makes sense this “leaky cells” concept (thanks Jessica! 😎) could be part of it, too... [1]
I was raised on an egg-free, low-fat, on-and-off-vegan diet during the first ten years of my life (though we did have “soya lecithin” bread spread, a product no longer on the market, which I craved as a child) so it is possible some of my neurological development challenges were exacerbated by a choline deficiency.
I tentatively attempted the two-eggs-per-day eggsperiment, which went well, so I’ve already upped it to four-eggs-per-day.
Well, I haven’t managed four eggs every single day last week, but was close!
Surprisingly, there haven’t been any night sweets or mood swings yet! There haven’t even been any acne breakouts, which I totally expected to happen considering my reaction to dairy and tomatoes.
Also: my digestion has improved even more?! Meaning: the speed of detox has increased!?!? And even so, I’m dreaming more and sleeping even better, too. (Only one nightmare. 😬 Lol.) This is SO encouraging. 😃 🙌
And I feel more resilient. I decided to try a supplement break on weekends to see if I can “feel it” and I learned I was ALREADY able to cut my supplemental molybdenum, selenium, and zinc dosage in half!!!
And it has been like...two weeks? (I started January 23rd.)
Guys, I am SO PUMPED about this.
I don’t think I mentioned this in my four-year-update post, but since lowering oxalate, I started craving eggs. So my body knew what it needed, I suppose...
Will give this four-eggsperiment a good six months, and will post an update then.
Also, I want to say here how relieved and happy I was to read Jenny has seen so many improvements after addressing her choline deficiency (especially after the strokes). I hope this continues for you, Jenny! 🌸🌼💛 And I know it has been such a long road for Rachel and Audrey, too, so you two are in my thoughts as well and I wish you the very best in this eggsperiment. ☀️🌻💛
Healing vibes, all!
P.S. One final symptom to record: we’ve had a severe cold snap in my part of Canada coinciding with my start of the eggsperiment, so the weather may be the main factor, but my hands have gotten quite dry and wrinkly again. Not bleeding. Not bright red (they used to look like they were dip-dyed). But still uncomfortable.
Quote from puddleduck on February 6, 2023, 8:34 amP.S. One final symptom to record: we’ve had a severe cold snap in my part of Canada coinciding with my start of the eggsperiment, so the weather may be the main factor, but my hands have gotten quite dry and wrinkly again. Not bleeding. Not bright red (they used to look like they were dip-dyed). But still uncomfortable.
What an awesome update @puddleduck, thanks for taking the time to share with us. I wish you continued success on your journey. My hands also look like crap since doing the eggs. I think it will just take more patience 🙂
@puddleduck that’s great news. So pleased to hear you are doing well. That is so good about needing less supplements already. Thank you for your kind words. I had two seizures and the evidence is building up that damaged cell membrane health is probably at the root of my novel seizure susceptibility. Still a theory but looking more likely as I gather evidence. The ultimate proof will be no more seizures (fingers crossed) and the normalising of my various abnormal test results.
Really happy to hear of your progress @puddleduck and thanks for all your encouraging words. It's been a long time coming and your perseverence is paying off. 🙂