DR1-DQ5 neurological symptoms

[Murilo P]

@Wheatwacked,

You are right, 250 mcg is 10.000 UI and I should have said ng/ml instead of mcg/dl. Sorry for my mistakes.

I think your 90 ng/ml level is good, but in case you were still taking it daily before the blood exam, it is hard to know how much you actually have at intracellular level.

12 hours ago, Wheatwacked said:

While I'm at it, Wheat has an omega six to omega three ratio of 22:1.  Highly inflammatory.

With "I'm at it", do you mean you are still consuming wheat, despite having celiac disease?

[Wheatwacked]

"While I'm at it" divulging random information.

The last time I took D was May 10, 2024.  Fasting blood tests tomorrow morning.

Until now if I went any length of time  my first noticible symptom is that I would withdraw, resent the phone ringing, not read email for weeks and horizontal surfaces become cluttered.

Unexpectedly since I increased my daily iodine to 1625 mcg a day my mood has been even more stable. US Safe Upper Limit 1100 mcg.  Japan safe upper limit 3000 mcg.  Feeling more like I did at 25.  Still need to rebuild the atrophy in my legs and butt after 18 years of sedentary life.

I was hard core alchololic from 1985 until 2014.  I did not want to drink, but could not resist.  After only three days of GFD my alcohol addiction cravings went away.  Not a coincedence.  Your anguish in a way gives me insight to what I put my wife through.  It was another 8 years after she passed from Ovarian Cancer that I started GFD, and I do blame gluten for her death after 18 years of research.

Without gluten the respiratory aspects, blamed by all on smoking, have cleared up, despite still smoking upward of a pack a day.  Sleep apnea, mouth breathing, bending over to tie shoes, shortness of breath.  I've quit smoking so many times but nothing except GFD made a difference.

 

 

 

[Murilo P]

On 7/15/2024 at 11:03 AM, KathleenMK said:

Murilo, my heart goes out to you and your wife. It sounds like you are doing everything you can. praying you find the right mix of nutrition, psychology and divine intervention. I get the drama of trying to get a spouse to take supplements when they crave those forbidden baked goods. Yes, they are addictive.

Thanks. Yes, I have tried many things, such as hypnotherapy. Though I don't believe in divine intervention; I think it is all up to us to solve our own problems, if possible.

Recently it has been a bit easier and I bet it is because I have fully removed all kinds of sugar from our home. We were consuming large quantities of a Brazilian berry-like fruit that is very popular here, called açaí. The problem with that is that this is prepared with "guarana syrup" to make it sweet, so it has loads of sugar. She usually bought it from a lady who is our neighbor but she always asked for added ingredients, which had gluten in their composition. Even when she asked to add no ingredients, the lady still added some artificial syrupy liquid over the interior walls of the cup, as she always does, but that thing certainly contained gluten. I realized the lady does not know what is gluten. Then, once my wife got the cup I noticed the issue but it was too late. She became so protective of it, like a dog protecting its bone.

This weekend we managed to do some "schemes" to get to a restaurant. We kept telling the attendants that she would not eat gluten, but they didn't seem to know what is that either. One attendant responded by offering many sweet flavors of pizza, continuously, and he insisted. Another attendant, when asked if the appetizer had gluten, responded that it was made of cheese and ham, but clearly, the cheese and ham were over a piece of bread or pasta (I think it was a "crostini").

Then I realized the problem here is that Brazilians are too misinformed about it, and that turns into a good excuse for her, as she can easily get gluten-consumption encouragement/validation from them. For instance, her mother, who is a nutritionist, and her closest friend, who is a restaurant cooker, both don't quite understand the need to remove gluten and sugar from her diet and how that can promote inflammation and affect her moods.

Well, anyway, I have renewed my agreement with her. We signed a contract in which I have 3 asks for her and she has 3 asks for me. She is now complying because she is not getting what she most wants from me. She has agreed to be gluten-free and sugar-free, and I already see the positive effects of that.

She asked that I always sleep with her, not on the couch, that we have a special dinner once every two weeks, and that I periodically post a picture of us so everyone sees we are together. I asked her to be G and S free, along with two more intimate asks that I should counteract her feelings of anger with actions that require closeness.

She is still cursing daily, but less intensively. Yesterday I had a conversation that ended with me asking her what should I do for her to treat me better. A couple of hours later she was crying a bit and she said I didn't deserve that treatment. It is hard for me to understand why is it so hard for her to control her impulses, but this kind of self-evaluation is a good sign.

[Scott Adams]

Long-term relationships are never easy, but the fact that both of you seem to be trying to make sacrifices and work things out to stay together is a good sign. As you've probably already discovered, gut microbiome imbalance is being linked in research to more and more health issues, and scientific research on this is still in its infancy. Although we published this article 20 years ago, it seems very relevant to this discussion:

  

[Wheatwacked]

Thanks for reprinting this Scott.  I found this intriguing:

Quote

When these gluten peptide antigens are bound to HLA-DQ2 or -DQ8 molecules and presented to CD4+ T cells, the T cells simultaneously receive all the signals telling them that the gluten peptide is an antigen from a pathogenic bacteria. The result is that the immune system responds to the presence of gluten as though pathogenic bacteria were present. Such gluten-ingesting bacteria may be the missing link in the pathogenesis of Celiac Disease.

Murilo, 

         While I agree wholly about eliminating "sugary foods", eliminating sucrose is a mistake.  I've spent the last nine months working with my doctor to lower my blood sugar, much of it as a zombie or recovering from the medications.  It seems I am one of those people who don't process complex carbs to glucose.  As a result most of my adult life I've been fatigued with high cholesteral and triglycerides.  Even on GFD.  When I started a low carb diet in fact my blood glucose started increasing, stabilizing at 180 mg/dl.  The odd thing I noticed though was my glucose response is normal; just that my baseline was 180 instead of the "normal" 80.  So I've gone back to a normal diet except I consume sugar instead of complex carbs, about 800 calories of sugar a day.  Mostly Red Bull because it has the vitamins, minerals, and antioxidents, all essential nutrients to process the glucose, including the essential antioxidant Taurine to neutralize the ROS produced by the Krebbs Cycle. Feeling great.  Normal engergy. Real sugar creates ATP which is the sole source of biological energy that fuels our body.  Perhaps the daily mental and physical energy boost your wife needs to replace her gluten addiction.  While I used to long for the glutenous foods periodically, since increasing my sugar intake, don't miss it at all.

Quote

Of course, if you compared regular table sugar and HFCS 90, which has 90% fructose, regular sugar would be far more desirable, as excessive consumption of fructose can be very harmful.  High-fructose corn syrup vs. regular sugar

Quote

Fructose is transported almost exclusively to the liver, where it is used to produce glycogen, lactate, glucose, and triglycerides. Fructose does not stimulate the release of insulin. Glucose stimulates the release of insulin and is distributed throughout the body, where it is utilized as an energy source via the production of adenosine triphosphate. [ATP]   Sugar

 

Quote

ATP synthesized in mitochondria is the primary energy source for important biological functions, such as muscle contraction, nerve impulse transmission, and protein synthesis. According to Susanna Törnroth-Horsefield and Richard Neutze at the University of Gothenburg (Göteborg, Sweden), “On any given day you turn over your body weight equivalent in ATP, the principal energy currency of the cell.” Adenosine triphosphate

 

Edited July 18 by Wheatwacked

[Murilo P]

Wheatwacked,

When you are not on sugar, do you crave it? When you consume sugar, do you feel bursts of pleasure?

In case you answered any of those questions with yes, do you think those sensations may have influenced your research, creating a confirmation bias?

You know other carbohydrates will also elicit insulin to be digested and produce glucose, and are healthier, right? You know sugar is a super fast carbohydrate that produces an insulin spike followed by an insulin crash, making your moods unstable, right?

For instance, non-gluten noodle is made of rice, and rice digestion produces glucose too, but not as fast as sugar. Do you know that the ketogenic diet can make our brain switch its energy source, moving the glucose-to-ketogen fuel ratio from 9:1 to 4:6, resulting in much more stable moods, right?

Anyway, she does not seem to be low in energy. It looks like she has an excess of it. I am the one who gets worn out by the stress. So those are not the reasons why I was concerned about her sugar consumption. The problem is that sugar does not work on her like it would work on me. From my empiric observation, her consumption seemed to be breaking her mood stability, increasing her irritability, and feeding her food compulsions. Those effects are not happening over the next hours (crash period), but instead happen over the next days, so it is not related to insulin.

I think the removal of sugar has helped with resilience, but some things still happen a lot, such as mild hallucinations. Going into a ketogenic diet would probably be ideal, but that would require a new agreement and big changes in our diet. I don't like the idea of giving away the basic rice and conventional beans, which are the most common and traditional food ingredients in Brazil. It's cheap and highly nutritional, as is part of what allows people here to survive with a minimum wage equivalent to US$ 250 per month.

Probably not even the keto diet would be enough. Probably needs a complete remake of the microbiome from scratch, if that is possible (and I think it is).

Today I just had an interesting idea, I'll buy a good noise reduction headset or year plug, to use when she "gets loud". Something I can keep around my neck for the entire day. Maybe I am overly sensible to "noise". Then I may find it easier to "talk" to her.

[Wheatwacked]

Fair question.  No to both and I don't believe confirmation bias is at issue.  It works for me.  It might work for others, so I share.  Trying it has no irreversible effect and it is cheap.  Without sugar, just no energy.  With sugar have focused energy.  High triglyerides and cholesterol seems to indicate that those systems don't work right in me.  Runs in the family, both sides, by the way.

I am suggesting that real glucose is not the enemy.  It has been clumped in with the 'sugary replacements'.

The low carb diet has unexpectedly driven my baseline blood glucose to 180. Looking back, I see the blood glucose started increasing at the same time.  The hope is by returning to a normal carb diet, GFD without saying, I will stop dumping belly fat (glycogen), almost out of it anyway, and it will return to my normal blood glucose. So I eat sugar for my energy carbs instead of the complex carbs.  The whole point of carbs is to convert them to energy.  The fasting blood results next week.  She took seven vials of blood Tuesday.  

9 hours ago, Murilo P said:

It looks like she has an excess of it.

Classic Description of ADHD.  The response to amphetime is calming focus.  My BP med is Clonidine, marketed originally for ADD adolescents who can't take Ritalin.  Serving a double purpose for me.

 

9 hours ago, Murilo P said:

Do you know that the ketogenic diet can make our brain switch its energy source,

Why would you want to?  

You are what you ate.  Do it.  I started with home made dill pickles. 

I am concerned about the hallucinations.  Perhaps I missed it in an earlier post, what are doctors thinking?  Dr Amen has a unique approach to mental health and diet.

10 hours ago, Murilo P said:

the basic rice and conventional beans, which are the most common and traditional food ingredients in Brazil.

Nothing wrong with that.  Remove 'sugary food' but not sugar.

9 hours ago, Murilo P said:

You know other carbohydrates will also elicit insulin to be digested and produce glucose, and are healthier, right?

Actually, I don't.  My body does not seem to fit the paradigm.  This is where your comfirmation bias is in full effect.  Glucose molecules are our only source of ATP.  We have evolved other pathways there but, in the end, it is only the glucose molecules consumed in the Krebbs Cycle.  Our digestive system, everything, has one ultimate function for life, get glucose to the mitochondria.

[Wheatwacked]

Some quotes from Google Search.  A Question in logic.  ADD are low in dopamine.  Dopamine is good for them.  So why is sugar bad?  Keeping in mind that there is a difference between "sugary foods" and sugar that is basically ignored in the literature and research.

• Specifically, sugar stimulates dopamine in the brain, as well as opioid receptors, which causes cravings for it. For those with ADHD, sugar intake should be monitored closely since it can make ADHD symptoms worse.
• Sugar: Some children become hyperactive after eating candy or other sugary foods. However, no evidence suggests that this is a cause of ADHD. 
• People with ADD/ADHD tend to have low levels of dopamine, so it's a good idea to eat foods that tend to increase dopamine such as beef, poultry, fish, eggs, seeds (pumpkin and sesame), nuts (almonds and walnuts), cheese, protein powders, and green tea.

[Wheatwacked]

Thiamin Deficiency.

Wernicke-Korsakoff syndrome is an unusual type of memory disorder due to a lack of thiamin (vitamin B1) requiring immediate treatment. It most often happens in people with alcohol use disorder and malnutrition. Wernicke-Korsakoff Syndrome

Any reason that vitamin b1 (thiamine) makes my hallucinations go away if I take it regularly at high doses? What else could I be missing?

 

[Murilo P]

Hi @Wheatwacked,

Thanks for the links, but this is not a priority now since her symptoms don't quite match the classical thiamine (B1) deficiency symptoms. For instance, no ataxia or muscle problems. She has been eating well for over one year now and she is not skinny anymore. She is actually about 10% or 20% above her ideal weight (though that's hard to notice since she is very tall). Anyway, the neuroprotective effects of added B1 may be worth it and could perhaps promote improvements.

On 7/19/2024 at 4:11 AM, Wheatwacked said:

I am concerned about the hallucinations.  Perhaps I missed it in an earlier post, what are doctors thinking?  Dr Amen has a unique approach to mental health and diet.

This is not much of a problem, as they are very limited. However, maybe if this was controlled then she would begin to have a better perception of things and then get less angry at me, who knows. I say that because she keeps projecting a lot on me. Such, as her father's behavior, and other traumatic experiences from previous relationships. These projections result in lots of cognitive distortions which end up creating havoc (in my point of view). So my hypothesis is that all of that moodiness could be related to the hallucinations. In such a case, if it is not something like BPD, then it would be easier to treat.

On 7/17/2024 at 9:38 PM, Wheatwacked said:

While I agree wholly about eliminating "sugary foods", eliminating sucrose is a mistake.

At first, I was not sure what you meant by that. If you meant to keep foods that have natural sucrose, then yes, we are keeping them. What we agreed to eliminate is table sugar and foods that are mostly made of sugar, which can be seen as "sugar bombs", such as jar sweets or desserts (or açai with guarana syrup). But she still eats many fruits and vegetables daily.

And yet we eat rice every day:

Quote

Rice is made up mostly of starches, complex carbohydrates composed of long interconnected chains of glucose molecules. When we consume rice, our bodies break down these long chains of glucose molecules into individual glucose units that can be absorbed and used for energy throughout the body.

Source: https://www.sugarnutritionresource.org/news-articles/does-rice-break-down-into-sugar

Btw, this site is all about sugar.

And we can also make ATP from fat (or any food source with keto bodies).

 

[Wheatwacked]

11 hours ago, Murilo P said:

Anyway, the neuroprotective effects of added B1 may be worth it and could perhaps promote improvements.

Since you don't have answers I would not rule out B1 deficiency yet.  Several days of high dose 100 mg or more will answer the question quickly.   Either way a B1 supplement will be beneficial. Can't hurt and inexpensive.  The Japanese came up with Benfothiame a fat soluable thiamine. 

 

Rice is a staple crop for half the world's population, especially in tropical countries in Asia, Africa, and South America. However, rice grains are low in thiamine, also known as vitamin B1, and processing steps like polishing can reduce thiamine levels even further. Fruits and vegetables are not high in thiamine (vitamin B1)

You mentioned the basic rice and conventional beans.  Her swings could be related to variations of B1 depending on the day's menu.  Perhaps a borderline situation. Anyway,  like Celiac Disease, Thiamin Deficiency doen not always follow the rules of symptomology.

 

[Murilo P]

@Wheatwacked,

Yes, although I am focused on other things, I have increased the priority of the B vitamins since I started this thread. Looking at my purchase history, I noticed that even before she got pregnant I had already begun her on a potent B-complex bottle having B1+B2+B3+B5+B6. This is probably one of the reasons why the baby was born super strong, with an impressive glycemic index of 80 mg/dL at birth. Though the 120-cap bottle was not fully consumed and has expired. But I'll buy a new one and add benfotiamine to the mix.

Yes, I only buy the integral type of rice (not polished) and we also include raw vegetables in the diet, but yet it is lame to think that a good diet can cure severe deficiencies. We know that mega-dose vitamins are needed instead. Moreover, I think that seeing the mega-dose vitamin treatment as a cure is also lame. Because sometimes it never ends and no one wants to take mega-dose vitamins for their entire life. Even if they do that, it may not be the full answer either. That's because the root cause of persistent deficiencies is the growth of the pathogenic species that happened during periods of nutritional imbalance, especially inside our gut. So it is not enough to balance the vitamins/minerals in your body if you are not balancing your living biology as well.

If you read the book Nutritional Power and see articles and videos from the author (William Walsh), you'll notice that the vitamin approach for the treatment of psychiatric diseases has a curative perspective when used in young kids, but not so much when used with adults. Adults get better but many tend to stop taking the vitamins after some period of time, especially the ex-felons. Walsh does not explain why it is that way. He only says some ex-felons said they were missing their old aggressive personality. But I think the main difference between adults and kids is that the kids still have their innate immune system more active, so it is easier for them to eliminate those pathogens. It's the same reason why the COVID risk is inversely proportional to the patient's age.

[Wheatwacked]

Here is a link to the results of the spreadsheet I made for myself,  USDA Legacy SR28 database to find out what nutrients I was lacking in my diet.   http://nutrientlog.doodlesnotes.net/  Here is the link to the new Food Data Central. 

It made it obvious, quantatatively, where my deficiencies where and choose what to eat.  Even so, I find it difficult to eat enough, so I supplement my food intake.  The RDA minimum (100% RDA)  is set so that 98% of a healthy population will not get sick.  But our nutritional requirements for any one who is ill is well above that.  Somewhere in the middle between RDA and Safe Tolerable Upper Limit.+

Currently taking:

• On hold for the summer. 10,000 IU vitamin D to control autoimmune.
• 250 mg Thiamine B1- neurologic symptoms
•  
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebbs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
• Iodine 1625 mcg - muscle tone, testosterone, hyper and hypo thyroid, slow healing. 
• DHEA - called the youth hormone.  Researchers say they can predict your age from your blood level.  A seventy year old produces 10% of what a twenty year old does.

 

 

 

[Murilo P]

We rented a wheelchair, to circumvent her "phobia of walking within my field of view". After more than one year without hanging out together, we finally did it, twice. She felt very happy and fulfilled. It was weird but also fun and adventurous. She got chills of adrenaline while I pushed the wheelchair with her and the baby on her lap, through the ramps and irregular terrains of local streets. We laughed about the people who would not understand why that wheelchair woman would lift up and walk normally to the bathroom (while I turned backward).

This feeling of joy and closeness has made her much more cooperative about taking the pills. In regards to the pills I pick for her, I have focused on a 450 mg capsule of full B-complex except B9, plus 50 mg of Zinc. Additionally, I cycle between 200.000 UI of Vitamin D3, some Omega-3 soft gels, magnesium threonate, or iron chelate. Gradually, I have noticed improvements in her moods and resilience. She has been markedly easier to deal and we are much closer to each other. By now, I can't say for sure if it was the pills or just a temporary psychological effect, but time will tell.

I've been thinking about her vitamin D levels. She has broken many bones in her childhood. This could be due to hereditary low levels of vitamin D3 or B12. A couple of months ago she hurt her wrist and it still hurts. If it's not a tendon joint, she may have cracked a bone again. I think it happened when she was trying to hit me in the head with a pillow. I didn't see it coming, so I moved down to get the baby, but because of my forward head motion, she hit my head with her wrist instead of the pillow. My thick skull doesn't feel it, but her wrists are so thin. A plasma calcium check would be good now since this is regulated by vitamin D3. It's hard to get her to do it by herself, but maybe I can take her using the wheelchair.

Interestingly, the baby had also been displaying bouts of irritability/crankiness and aggressiveness, which exceed what we could consider normal for the age and resemble the mother's behavior. So I also gave him a bit of extra Zinc and D3 a couple of times, and B vitamins once, using fraction doses. It seems to work, but we need to observe him for more time before taking definitive conclusions. The link between mother and baby behavior would make sense since the baby is still breastfed and they share genetics. Maybe even they share some bacteria by mouth (due to the shared water bottle and mouth kisses).

Btw, this study is interesting:

LARGE, SINGLE-DOSE, ORAL VITAMIN D SUPPLEMENTATION IN ADULT POPULATIONS: A SYSTEMATIC REVIEW
"Daily vitamin D supplementation is often inadequate in treating vitamin D deficiency due to poor compliance. A single, large dose of vitamin D given at timed intervals may be an alternative strategy." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4128480/

A couple of days ago, she didn't resist and ate a 100g waffle biscuit that was sold by an Uber driver, therefore violating our non-gluten agreement for a moment. But this time I didn't see any reactions such as sinus or mood changes. Maybe the gluten amount was not big enough, but I like to think that the pills have dampened her gluten sensitivity.

A couple of months from now, I should have final conclusions about the pill's effects.

[Wheatwacked]

That is good news about your relationship.

"All studies evaluated report a significant increase in serum/plasma 25(OH)D concentration relative to baseline, which tended to peak between days 7 and 30 (Fig. 2). Mean serum/plasma 25(OH)D concentration surpassed IOM guidelines for vitamin D sufficiency (25[OH]D concentration >20 ng/mL) in all but 1 study."  

Vitamin D needs to be raised to 70-90 ng/ml for long term.  This paper shows that the massive doses only work for a short time, and even then barely raise it above 30 ng/ml.  And it makes some people throw up.  Not good for people already not feeling well and the results only worked for three months.

       I got my blood test results Wednesday, down to 55.  I started 10,000 a day in March 2015.  At 10,000 IU a day in 2019 my blood level was at 47 ng/ml.  Two years later it was up to 80 ng/ml and has stayed there. The first benefits, it broke 30 years of depression, started in only a few days when I increased dose from 8,000 IU to 10,000.  In Dec 23 90 ng/ml and May 24 it was at 93 ng/ml, increased sun exposure + 10,000 IU D3.  There was a UK website that had a list of doses to maintain a specific blood level.  10,000 IU a day for 80 ng/ml, as I remember and my experience validates that.  Unfortunately the site is no longer there.  I suspect it broke some UK ethics ruling about reporting vitamin D supplementing over 4000 IU.  It seemed a reliable source.

     Anyway after my results in May, I stopped taking vitamin D, thinking 3+ hours a week of S Florida full exposure to UV  (10+ on the UV index) would suffice.  Wrong. In just 3 months it plummetted 38 ng/ml down to 55 ng/ml.  Once before I took two weeks of before blood test and it dropped about 10.  So the pattern repeats.

Surge of information on benefits of vitamin D, but no interventional trial data exist yet to ensure safety

1. "Researchers at the University of Melbourne, Australia, assessed whether a single, annual dose of 500,000 IU cholecalciferol administered orally to women aged 70 years and older would improve adherence and reduce the risk for falls and fracture over 3 to 5 years. Women in the vitamin D group had 171 fractures compared with 135 in the placebo group, and 837 women in the vitamin D group fell 2,892 times compared with 769 women in the placebo group who fell 2,512 times...The levels fell sharply after 3 months in the first year to a lower value, and in the second year, the 25(OH)D levels fell to the approximate value the women had before start of the study.... “It is also possible that the large dose of vitamin D improved physical performance resulting in more active patients with a greater chance to fall. Another theory is that the high-dose vitamin D may have decreased the rate of wintertime infections, resulting in more active patients during the winter with increased opportunity for falls and fractures,” he [Joseph Shaker, MD] said."

2. "Dave McCarthy, MD, said medical research on the high prevalence of vitamin D deficiency motivated him to introduce the findings into his family practice, and his patients have had a substantial reduction in influenza and infections.

   “When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy, whose family practice is affiliated with The Memorial Hospital of Belleville, Ill.

   There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. Elevations in blood pressure now require many fewer medications,” he said.

   McCarthy has been employing these methods since February 2007, and patient acceptance has been high. He said he checks each patient’s 25(OH)D level and supplements to reach a target of 80 ng/mL in adults and children. Of the first 1,500 patients McCarthy tested, 40% began with vitamin D levels less than 20 ng/mL and 70% less than 35 ng/mL. Only 1% initially had values within his target range.
   • According to McCarthy, his target range is based upon several factors:
   • A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
   • Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
   • Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
   • More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;
   • When a patient misses dosing, an attained level of 80 ng/mL gives the patient an additional month of good levels off of vitamin D."

Quote

6 hours ago, Murilo P said:

he baby had also been displaying bouts of irritability/crankiness and aggressiveness,

 

Cholecalciferol (vitamin D3) is used as a dietary supplement when the amount of vitamin D in the diet is not enough. People most at risk for vitamin D deficiency are older adults, breastfed infants, people with dark skin, obese people, and those with limited sun exposure, or gastrointestinal disease (GI; affecting the stomach or intestines) such as Crohn's disease or celiac disease. Cholecalciferol Vitamin D3

Quote

 

Cleveland Clinic: Calcium; Vitamin D Tablets

Side effects that usually do not require medical attention (report to your care team if they continue or are bothersome):

• Constipation
• Loss of appetite
• Nausea
• Upset stomach
• Vomiting

 

•  

[Murilo P]

It's working - the gluten-free, candy-free, supplemented diet. Her moods have markedly improved, as long as her resilience, and memory. Cohabitation is still pretty bad, but I understand that behavioral changes take time and they only start after the mood fix has taken place, so I'm trying to be patient. Nasty things still happen, but it takes less time for her to cool off and sometimes I can point out something she should not have said and actually get her to excuse herself.

Another good thing is that we are doing a daily outdoor exposure exercise to overcome her walking phobia. The exercise consists of her standing and walking at a far distance from me, and then she repeats it at closer distances. We start around 40 meters. The minimum distance she can reach is around 20 meters. I haven't seen a clear improvement in her phobias yet, but this is the kind of training used by specialists in their practice. I have been asking her to comply with this exercise for over one year, but only now she is trying, so it is a huge step.

In regards to the high oral vitamin D3 dosages from the studies, we need to note that those studies only used 1 dose per year. If you divide its potency by 365 days, it is a small dosage anyway. Therefore I think it makes sense to not reach high levels of the active D3 form. But I have given many 200.000 UI to her (and myself), so I had to stop until we have our blood checked for the active form of D3. She had nightly digestive symptoms for 3 days, which made me worried about a possible excess.

I checked her active D3 levels in previous blood exams, which measured 24 ng/mL in 2023 and 35 ng/mL in January 2024. Not too bad, but she was supplementing here and there, so maybe more was expected. Maybe the active D3 is being consumed by the body in large amounts. I see it can take over one year for our body to recover from many years of being low in D3.

[RMJ]

I’m glad you’re seeing improvement!  I hope she gets better and better.

[Wheatwacked]

That is terrific news.  👯‍♀️

I did the math.  200,000 IU once a year works out to 547 IU a day, almost enough if all you are concerned about is Rickets and Osteoporosis.  Also, in at least one of the studies you referenced, the effects of the high dose effects were gone in three months.

On 8/6/2024 at 1:09 PM, Murilo P said:

24 ng/mL in 2023 and 35 ng/mL

Barely above.

Quote

The findings of this study concur with the Institute of Medicine and Endocrine Society recommendations in that two to three times the daily requirement of vitamin D is required to improve serum vitamin D levels in individuals who are overweight or obese.  25(OH)D status: Effect of D3 supplement

Celiac Disease because of its malabsorption of ingested forms of D takes even more.

I started 10,000 IU in Spring of 2015.  By the time I got tested in 2019 my 25(OH)D status: was at 47 mg/ml.  Another two years to reach 80 ng/ml where it has been since.

In May my 25(OH)D status was 93 ng/ml and I was getting a lot of sun, so I decided to discontinue it and see what happens at my next scheduled test in July.  My test blood drawn on July 16, 2024 came back as 25(OH)D 54.9 ng/ml.  That is a 25(OH)D drop of almost 20 ng/ml more than I was getting from the sun.   Needless to say I started it again and feel better for it. 

Issues Ment Health Nurs. 2010 Jun; Vitamin D and Depression: Where is all the Sunshine?

[Murilo P]

On 8/7/2024 at 3:23 PM, Wheatwacked said:

In May my 25(OH)D status was 93 ng/ml and I was getting a lot of sun, so I decided to discontinue it and see what happens at my next scheduled test in July.  My test blood drawn on July 16, 2024 came back as 25(OH)D 54.9 ng/ml.  That is a 25(OH)D drop of almost 20 ng/ml more than I was getting from the sun.   Needless to say I started it again and feel better for it. 

Since D3 is liposoluble, it stores in your fat for a long period of time and gradually gets converted by the liver and then the kidneys to the active forms. https://www.nature.com/articles/s41598-019-40851-9/figures/1

We can ingest a large quantity because our body can do this process gradually, which should result in increased levels sustaining over a long period (such as the entire winter). However, some people have particular diseases that result in an accelerated conversion, which instead results in a sudden rise into excessive levels. Therefore, now knowing if any of these specific diseases are present, the daily dosage is preferred (safer).

On 8/7/2024 at 3:23 PM, Wheatwacked said:

I did the math.  200,000 IU once a year works out to 547 IU a day

Yes, but as I counted the caps, I realized she took 10-15 of those over the last months. If we recalculate that per year, it would be at least 5k-8k UI per day, which is still not too much, but it peaks between 7 and 30 days, so there is some risk that it could be peaking now above the safe level of 100 ng/ml.

This night, she got a fever, which may be the new COVID variant that has been around, and still, I haven't given her any more D3 yet, because I'm guessing that she doesn't need any more. But I have other stuff that led her to a very quick recovery. The baby also got the virus, which is expected, and luckily we already gave him a fraction of D3 with a smashed banana last week, but his fever is still high.

 

[Wheatwacked]

7 hours ago, Murilo P said:

because I'm guessing that she doesn't need any more.

A blood test for vitamin D and PTH would answer that question.

The best situation would be a consistant intake, preferably in the morning to simulate the daytime UVB to stabilize seritonin and melatonin production.  For me, it is 10,000 IU a day.

Since 2004 I have used zinc glyconate lozenges for colds.  The lozenge coats the oral mucus membrane with the antiviral zinc, protecting the cell from the virus.  Haven't had a cold, flu or covid since.  Did you notice how a frequent symptom of Covid is loss of taste and smell and a symptom of zinc deficiency is loss of taste and smell?

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The most common symptoms of COVID-19 are impaired smell and taste, fever, cough, sore throat, general weakness, pain as aching limbs, runny nose, and in some cases diarrhea. In the subsequent chapters, we will associate most of those symptoms with altered zinc homeostasis and explain how zinc might prevent or attenuate those symptoms, 

In most cases, prophylactic zinc supplementation was more effective than therapeutic proceedings. Up to 30% of the everyday respiratory infections, briefly named “common cold,” are due to infections with coronaviruses. Studies showed reduced symptom severity, reduced frequency, and duration of the common cold after zinc administration depending on dosage, zinc compound and the start time after initial symptoms. Most importantly, zinc supplementation of children revealed significant benefits in various studies    The Potential Impact of Zinc Supplementation on COVID-19 Pathogenesis

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That is, sufficient serum 25(OH)D is likely needed to ensure adequate local 1,25(OH)2D production which promotes TPH2 activation in the brain that is needed to produce serotonin which has a wide range of benefits for mood and cognitive functioning during the waking episode. Moreover, TPH1 activation in the evening due to decreasing serum 25(OH)D and local 1,25(OH)2D production may promote serotonin production in the pineal gland which is then transformed into melatonin to facilitate sleep. Good sleep may, in turn, also benefit mood during the waking episode   Effects of vitamin D on mood and sleep in the healthy population: Interpretations from the serotonergic pathway

 

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Laboratory findings (other than hypercalcemia) inpatients with symptomatic exogenous VDT related to overdosing of vitamin D or 25(OH)D show suppressed PTH (intact), 25(OH)D concentration>150 ng/ml (>375 nmol/l), and normal or increased values of 1,25(OH)2D concentration.

Exogenous VDT, as an adverse result of therapy with use of active vitamin D metabolite [both 1,25(OH)2D and 1α-OHD], is characterized by laboratory findings of suppressed PTH (intact), elevated 1,25(OH)2D concentration, and decreased or normal 25(OH)D concentration values.

Endogenous active metabolite intoxication due to coexisting granulomatous diseases or lymphoma may be characterized by suppressed PTH (intact), decreased or normal 25(OH)D concentration, and elevated 1,25(OH)2D.   Vitamin D Toxicity–A Clinical Perspective