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puddleduck’s progress (CFS symptoms)

@sarabeth-matilsky Hey it was so good to hear about your kid recovering from his/her eating disorder. ❤️ A belated “THANK YOU SO MUCH!!” for sharing that with me. 😁 That is honestly an amazing result (as anyone with an ED would appreciate), and I feel so happy that hopefully this is an indication your kid will be spared the years of emotional turmoil and physical damage that EDs can do (especially in the teen years, when it can take hold and get so much worse). I hope your kid is still thriving! ❤️🧡💛💚💙💜

If it is true that vitamin A toxicity and thiamin deficiency are major reasons why appetite is such a struggle for those with EDs, then it would make recovery more understandable and EDs more treatable in general.

I do have a bit in my update about the CFS/ME/POTS side of things, which unfortunately worsened quite a bit for me this year. But yeah, it certainly is a fascinating and exhausting adventure! 🙂 I am grateful to be on it, despite the setbacks, because I still hope I am right in believing Grant is onto something huge with this whole idea. 

I can’t remember if I sent you a DM about this or not, but basically the paper I read indicated that being underweight with low muscle mass can make the brain more vulnerable to toxicity. That, along with thiamin-destroying glyphosate exposure from industrial agricultural (I grew up on a farm), is the best explanation I have for why I developed CFS/ME so young.

So long-term, I’m thinking increasing my muscle mass through exercise and good nutrition is going to be protective, but unfortunately until I recover from CFS/ME, exercise will make whole situation significantly worse... So yeah. Gotta wait for more improvement before I get to that point!

In the short term, I’m using thiamin supplementation. I wish I had known about it a decade ago... 

Anyway, I do hope we are on the right track here with CFS/ME! I think Jerrod Younger’s work showing inflammation in the brains of CFS/ME patients is a clue that vitamin A could be part of the picture. 

🌻 🌻 🌻 🌻 🌻

Before getting into the update, I want to say THANK YOU SO MUCH 🌻💛 to everyone on this board for sharing their ideas, enthusiasm, kindness, stories, resources, opinions, observations, and discoveries so generously over the past year! 

It’s been a tough few months for me (in my last update maybe you can tell I was a bit discouraged 😝), but the determination and grit you guys display in looking for solutions and more knowledge inspires me to keep trying, too. Thank you for giving me new ideas to try! 🌈☀️ You are all awesome.

Also, it’s been so exciting to see several new faces pop in to post success stories over the past several months! 😁 🥳 Thank you. ❤️ It’s wonderful to hear of your improvements.

My 1.5 Year Update:

When I started this experiment, I told myself I’d quit at 9 months if I wasn’t seeing any improvement in my CFS symptoms, but since vitamin A depletion from a toxic state likely takes closer to 2 years than 9 months (especially as I kept consuming vitamin A for over a decade after I reached the point of toxicity) I decided it was worth continuing the experiment for that reason alone. 

Now that I’ve come this far, I’m determined to continue this for another year at least.

Here’s why: 

5 Reasons I’m Not Quitting the Low Vitamin A Diet Yet

1. I Was Wrong About My Digestion Being “Good” 

💩 TMI Alert: Frank discussions of poop and gross stuff ahead.

Earlier in this thread I described my digestion as “very good.” By that, I really meant it didn’t much bother me compared to the people in my life who experience significant gastrointestinal pain and frequent diarrhea due to IBS or Celiac Disease.

Nevertheless, for my entire life I’ve always been excessively bloated/gassy. Before I stopped eating vitamin A, I would have mucus in my stool a few times a month, and struggled with moderate to severe constipation.

Since going low-VA, my digestion has become normal (consistently Type 4 on the Bristol Stool Chart), except for a raw sienna colored pigment that comes off of it in the water (I am guessing this is beta carotene, but I don’t have proof of that). I still have more tummy gurgles and bloating than is normal, though it has lessened.

The bowl irritation (a burning feeling) I experienced for the first couple months of low-VA can still be triggered by by an increase in “detox” (there was a reoccurrence when I introduced peeled apples and Apple Pectin, when I started thiamin, and when I started eating more legumes). 

I’ve also had days where that my gut feels “soothed” and “calm” to a degree that I haven’t experienced more than once or twice in my entire life prior. 👍 

2. High Vitamin A Foods Make My Gut Unhappy

I’ve only done a few food tests, but they haven’t gone well... 😬 

🍕 = Pepperoni pizza (a full meal of it) resulted in constipation, severe bloating, mucus in stool (for the ONLY time since starting the detox), moodiness, and unusually foul flatulence

🍅 = Tomato sauce (a spaghetti meal) gave me constipation, a horrible stomach ache, unusually foul flatulence, and malaise

🌶 = Dairy-free, authentic Mexican beef barbacoa (contains several types of very spicy peppers) resulted in severe constipation (no bowel movements until the third day after eating it), and digestive pain that took something like a week to return to normal.

Since I can eat white potatoes and potato chips no problem, I doubt this is due a nightshade sensitivity alone.

🧀 = Fancy cheeses resulted in constipation, digestive discomfort, hands turning red, a dramatic reoccurrence of seasonal allergy symptoms, and somewhat lowered mood (I have tried this on two separate occasions with the same result).

🧈 = I had the idea to see if butter might improve detox for some reason, so I introduced it into my diet (1 tablespoon per day).  It was SO delicious at first, but after only three days I didn’t want and could barely finish the bread I had spread with it. Since then I haven’t had an appetite for it.

🍖 = I tried to introduce pork (beef is expensive in my country), but after a short time I became completely repulsed by it and cannot stomach it. It is a good source of thiamin, though, so people doing carnivore may have a different experience. I’m not sure why I can’t stand it!

🥭+🍑 = Vegan mango and peach ice cream resulted in constipation, bloating, and malaise.

🐟 = Pink salmon with mayo resulted in constipation, a bad stomach ache from gas, postnasal drip, runny nose, and somewhat lowered mood.

3. My Size Has Shifted

I already touched on this in my last update, but here are the details.

Please note that I view weight as protective (my weight gain healed my mental illness after all), and I do not believe that weight loss is an inherently healthy thing. 

Nor am I entirely comfortable with being this much thinner, because anorexia wasn’t a fun time and it makes me a bit scared to have less “margin” to protect me. 😝 

However, I do believe this is a sign that my body has gotten rid of some excess vitamin A so far, and I want to record this detail for that reason.

From when I first heard of the Vitamin A detox in August 2018 (I slightly lowered my VA intake then, but didn’t commit until December 2018), I have lost 70 pounds total.

Please note that:

— My physical activity (or rather, the lack thereof) remained the same

— I continued to consume sugar, refined flour, french fries, and potato/corn chips

— If anything, my appetite INCREASED for the first several months, and so I ate more

I did not weigh myself weekly, but based on the numbers I recorded it seems like the shift happened slowly and steadily (about 3 to 5 pounds per month), which makes me think my body was possibly moving the vitamin A out of adipose tissue storage as it was able.

There have been a couple of weeks here and there where my appetite was reduced (this happened before the detox more regularly), but I didn’t notice an increase in weight loss during those weeks (either before or after the detox), and actually will get some water retention after I resume normal eating.

I do not support caloric restriction, and do my best to eat to appetite. 

4. My Hormones Are Balancing

🍫TMI Alert: Frank discussion of mensuration ahead. 

My PCOS symptoms have started to shift towards PMS symptoms. This signifies something supercalifradgilisticexpialidocious: I am ovulating again!

Before this diet (and the inositol, which I have been taking ever since John told me about it), I never knew when to expect my periods. They’d be anywhere from 4.5 to 6.5 weeks apart, sometimes longer... Since September 2019, I have been able to count on getting it between days 26 and 29. 🥳

5. Other Little Improvements

Looking back at my list of symptoms in my first post, I can see there are several small things that have improved without my noticing! Here they are:

  • 🤧 Allergic rhinitis + post nasal drip — Since starting apple pectin and thiamin (and now the bean protocol, which is enhances the effect dramatically), my ever-present congestion has lessened in severity! I can breathe more easily and deeply, my lungs feel like they are breathing crisp fresh air even when I am inside, and my voice is lighter and clearer.
  • 💃🏼 My back — I can now twist easily to both sides. My range of motion is no longer restricted!
  • 👏 My hands — Except for when I ate cheese, my hands have been tolerating the cold much better than last winter. They’re smoother, not as dry or as red, and haven’t flaked at all.
  • 👁 Hemangioma — In 2017 I noticed a dark growth in my inner waterline of one eye. In 2018 it was diagnosed as hemangioma . The ophthalmologist told me hemangioma cells are with you from birth, but are usually only activated by hormonal changes. He said it was rare to have them grow and shrink, but this is what happened to me (it grew, then shrunk, then grew again). It entirely disappeared this winter, and now has puffed up a bit again, but is the same color as my skin. It’s a bit odd, and proof of hormonal change I guess! (I posted a photo of this in the Facebook group.)

The Trouble Spots

Since starting college in September, my CFS/POTS type symptoms have gotten progressively worse. I think there may be a few reasons for this:

1) Iron Deficiency - My ferritin is 9 ug/L (reference range: 13-150 ug/L). I have seen some research* indicating that women may need to reach ferritin levels of 70 ug/L to 100 ug/L before they see improvement in fatigue and other related symptoms, however this is a controversial viewpoint as some people believe it is dangerous to give iron infusions, injections, or supplements to individuals with normal hemoglobin levels.

As I did deal with heavy menstrual bleeding during the several years I had PCOS symptoms, that might be what lead to this problem. (My periods aren’t as heavy now, fortunately.)

My MD is conservative about iron supplementation, so right now I’m only taking blackstrap molasses as an iron supplement. 

*Reference:

- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/pdf/CCR3-6-1082.pdf

2) Difficulty Implementing Pacing at College - Anyone who has CFS/ME knows that compounding post-exertion fatigue leads to “crashes.” I wonder if this is because there is still excess vitamin A in my brain, causing the brain inflammation Jerrod Younger observed in CFS patients?

If so, I hope it can be removed!

3) Under Eating - I started to have more difficulty with appetite in November 2019, when I became less interested in sweets and refined flour products (affordable sources of calories). 

Since then, I’ve had a couple more periods of under eating that I believe have slowed the detox (there are studies showing that lab rats store more vitamin A in their livers when their caloric intake is restricted than the rats allowed to eat an unlimited amount of chow). 

10 New Things I’m Trying in 2020

1. Dr. Antonio Costantini’s High Dose Thiamin Therapy

Sadly, Dr. Costantini passed away of COVID-19 just over a week ago now. 💔 Though he had been forced to retire due to ill health, he had been hoping to guide his colleagues in running more studies on his HDT therapy. He was a compassionate person, who would correspond with people around the world who wrote him about HDT therapy.

One of the people he helped via email is Simon, who runs the “Fibromyalgia thiamin HCL” Facebook group, and whose wife has seen improvement through HDT therapy:

https://www.myrandomtips.com/health/how-to-help-fibromyalgia-pain-naturally/

CFS/ME isn’t mentioned on Dr. Costantini’s official website, however I do recall seeing an interview in which he stated that he uses HDT therapy for his CFS/ME patients as well. POTS is another condition which can respond well to it.

Here is his official website explaining the therapy:

https://highdosethiamine.org/

I am currently taking 3 grams of thiamin hcl powder (I worked up slowly, and that was the dose at which I started to notice positive changes).

So far, the thiamin has increased my stamina and caused profound “soothing” sensation in my head (which before felt hot, tingly, pressure, like it was in a sauna for too long), and in my gut and airways as well. 

It also improves the warmth in the rest of my body, while it is cooling my brain (my extremities were always FREEZING before this 🥶).

My sleep has gotten more consistently deeper since taking it, too, and I have actually had days where I wake up without the “hungover-and-runover-by-a-truck” feeling in the morning. Instead, I have dream recall almost every night, which I guess shows I am having REM sleep.

I still haven’t been at this dose consistently for three consecutive months yet, which is the amount of time Dr. Costantini suggests it takes patients to recover as much as they’re able.

We’ll see how it goes, but so far I have responded really well. 😊 Thank you, Dr. Costantini! ❤️🌈

2. Working with Dr. Smith

I am excited to get the results of my bloodwork and hair mineral analysis testing (what will my VA level be I wonder? 😮), and to implement Dr. Smith’s recommendations regarding mineral dosing!  

3. Vitamin and Mineral Supplements

Thanks to Bludicka, Orion, Rachel, John, Tim and others for for providing me with information about this! I ordered a bunch of supplements (riboflavin, niacin, biotin, selenium, and molybdenum) and started taking them. 

4. The Bean Protocol

Most of you know about nutritionist and biochemist Karen Hurd’s “bean protocol.” As pulses can lower the bioavailability and absorption of vitamin A, it looks like this is something I will want to continue for the rest of my life:

https://pubmed.ncbi.nlm.nih.gov/30920145-the-presence-of-pulses-within-a-meal-can-alter-fat-soluble-vitamin-bioavailability/

Here are some of Karen’s interviews for reference:

This is making a HUGE difference for me, however it is also increasing the gastrointestinal detox symptoms, and making it harder to eat well, which is a bummer!

So if you’re new to it, start slowly and work your way up! Soluble fiber is surprisingly potent medicine.

5. Near Infrared Light Therapy

My parents gave me a little BIOMAX light for Christmas, but I’ve been hesitant to use it much so far in case it is an agitator since my body has been pretty stressed by the bean protocol.

But I will start to use it more soon, for 15 minutes front, 15 minutes back maximum per day.

6. Sunning for Vitamin D

Bella told me about this app, which can be used to track your vitamin D production from sunlight, and I have started to use it: http://dminder.ontometrics.com/

My current 25-OH Vitamin D level is 16 nmol/L, and the reference range suggests that a level greater than 75 nmol/L is preferable.

7. Castor Oil Packs

My Mom is saw an online presentation about this not long ago, and got really into it, so she sewed everyone washable waterproof “packs” to wear over night.

So far, the evidence is mostly anecdotal, but there are reports of people using it on painful joints and edema. Since it seems harmless, I’ll try it!

8. Activated Charcoal Supplements

I’ve taken these sporadically since the beginning (usually only if I ate vitamin A or was having really bad gas or something), but I would like to see if it makes a difference to take them more often. I hesitate to take them every day... But am considering trying them every other night.

9. Lowering Oxalate Intake

Since I experienced some kidney pain on and off during the detox so far, I looked into this. According to the food list the TLO (Trying Low Oxalate) Facebook Group Susan Owens runs, these are lower-oxalate legumes:

  • lentils
  • lima beans
  • black eyed peas
  • chickpeas 

So I have focused more on those legumes while doing the bean protocol, however I do still eat black peans and pintos as part of my regular meals.

I find I don’t care much for chocolate or almonds (both high oxalate foods) anymore, so I eat them only rarely in small quantities.

10. Somatic Experiencing

Still learning about this, but some kind people told me about this and suggested it as an addition to therapy/self-therapy for healing trauma. Since starting the thiamin, I’ve noticed my emotions are more accessible somehow, which I’m taking as a sign to do more inner work. 

🌻 🌻 🌻 🌻 🌻

Phew! That was a long update. 😝

TLDR: I am making consistent progress, although there have been a few setbacks along the way (rest and adequate caloric intake are ESSENTIAL to healing). Looking forward to getting my vitamin A test results and working with Dr. Smith. 🙂

Thanks for being awesome, you guys. ❤️🌈🔆

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

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.

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puddleduck

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.  🙂

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puddleduck

@puddleduck Btw heavy menstrual bleeding is probably due to low progesterone(zinc) and high estrogen(copper). Eating good amount of beef or turkey thighs for zinc should help you a lot. Also main symptoms of copper toxicity is chronic/adrenal fatigue, back pain, etc.. There is a good info about copper issues. https://coppertoxic.com/ It is web of a guy who had wife that committed suicide and he believes that she did it due to copper toxicity... Dr.Smith should also help you with this as he can help with hair tissue mineral analysis and balancing the body.. At least I would do blood test for estradiol, progesterone, ceruloplasmin, copper and TSH with free T3 if your thyroid is ok. High TSH is another sign of copper issues.. Copper toxicity is issue mainly for female, because estrogen will accumulate copper in the body.. I had that issue due to taking testosterone without antiestrogens.. I had symptoms like some girl.. Spider veins, cold hands and feet, chocolate cravings, night sweats, tender breasts, chronic fatigue, water retention, edema in legs etc.. All symptoms of high estrogen/copper... Fixing adrenal fatigue when you have copper toxicity is really hard, because copper is very strong stimulant. So your body can't relax and start healing... Most female fix this by lowering estrogen, increasing progesterone. Eating a lot of meat high in zinc and lowering copper intake. So no chocolate, nuts, seeds etc.. Ideally it should be something like 20mg of zinc a day and under 2mg of copper a day.. 10:1 zinc:copper ratio..  

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puddleduckPaular

Thank you for your detailed log. I have gotten a lot from reading it and relating to your experiences 🙂

I'm wondering, what form of inositol are you taking, and how much? Do you think the inositol was vital to your hormones balancing? I am realizing that my period is kind of irregular... 

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puddleduck

The bowl irritation (a burning feeling) I experienced for the first couple months of low-VA can still be triggered by by an increase in “detox” (there was a reoccurrence when I introduced peeled apples and Apple Pectin, when I started thiamin, and when I started eating more legumes).

@puddleduck

Nice write up. Bowl irritation with a burning feeling normally just means you need to let it cool down before you pick it up. I can't relate because I have cold cereal in my bowl in the morning so the problem never pops up... or did you mean bowel? 😉 Ah ok got you, yeah I sometimes get a burning sensation in my gut, it feels like "dry air" against my gut wall if that makes sense. Is that the feeling you get? Fortunately I hardly get it anymore.

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puddleduck

I think I get that when I eat challenging legumes.  Like chunky peanut butter.

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puddleduck

@puddleduck

Only now reading your update from a few months ago. Congratulations on your progress and thanks for all the useful information. 

I recommend you read the book by Heckenlively and Mikoits, Plague: One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases. There are some interesting insights about CFS that I had not heard before. Maybe they are common knowledge among those who suffer from the disease. She doesn't say anything about vitamin A, but does offer some interesting ideas about the causes of CFS. I am still reading the book and haven't had time to think how to tie it into vitamin A. 

About vitamin D levels. The mainstream approach to vitamin D is as messed up as the mainstream approach to vitamin A. The 25D level is not very meaningful. What you want is the 1,25D level. Here is a document that discusses some of the misconception around vitamin D:

https://docs.google.com/file/d/0BweFjwhHC9atek9IV3ZzQk1Wamc/edit?pli=1&fbclid=IwAR2OXkTuYZ68JZrey1q0ER41P2U6t4wmFf_R73gXXw6-dZxNJ8YMfRHr-Rk

 

Also recommend joining the FB group 'secosteroid hormone D':

https://www.facebook.com/groups/517807781731760/

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puddleduck

@puddleduck

I’ve just re read your update again. I ‘liked’ it at the time but just wanted to say how interesting & useful it was so thank you for taking the time to write it up. 

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puddleduck

@puddleduck after reading your thorough updates with great interest, and not having heard an update for a while, I hope this is due to blissful living with no time to spend on long updates! After many on this forum have talked about vitamin B1, I started taking 100mg thiamin hcl a day about a week ago. I hope this will help my rhinitis symptoms like it did with you.
Anyway, I hope you are doing good, and thank you for mentioning the rhinitis, small gems of information like that might turn out to be invaluable for me - and hopefully others as well. Much love!

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Orionpuddleducklil chick