Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

First try at Active Protocol and have questions.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by JasonUT, Mar 3, 2017.

  1. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    I am heterozygous 677T. 1298C is fine. I was also suspicious of MTHFR in the beginning. MTHFR seems all the craze. My functional B12 levels have always been okay. My Folate levels have been borderline low despite large dosing. My Glutathione levels were low per SpectraCell and MPP. I tried lifting my Glutathione levels via various Methylation protocols and had no luck. Instead I switched gears to improving glutathione recycling by supporting Glutathione Reductase via B1, B2, and B3. It appears that high dose B1 TTFD may have been 1 of the missing components in my health. We have one data point that supports the use of TTFD for me which resulted in increased Glutathione. We'll do another nutrient test in Feb 2018.

    I am now switching to why is this happening. What might be causing this excessive oxidative stress and need for increased recycling capacity?
    [​IMG]
     
    Last edited: Dec 20, 2017
    Asklipia likes this.
  2. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    Inborn Errors of Metabolism and Urea Cycle Disorders:

    This continues to be an interesting topic. I am glad my nutritionist brought up this concern. Now we are trying to find a doctor who knows how to complete proper testing.

    We are suspicious of Late Adult Onset Partial Urea Cycle Deficiency for the following reasons:
    1. ER visit due to high protein SIBO prep and dehydration
    2. Symptoms seems to track my BUN levels
    3. my complaints match Urea cycle disorder symptoms
    4. My illness started with trying a high protein, low carb paleo elimination diet in feb 2014
    5. My symptoms spike 1-2 hours after a meal
    6. I can't tolerate glutamine supplementation
    7. Protein powder always makes my symptoms worse.
    8. IEM's: Urea Cycle defects, homocysteine remethylation, or porphyrias disorders can cause Dysautonomia [Source]
    9. OTC is X-linked meaning it comes from my Mother's side. I have several cousins on my Mother's side who have similar health issues. It is also the most common Urea Cycle disorder and mostly occurs in males. 1 in 30,000
    This article seems to be a good summary of Urea Cycle Disorder.

    Here is a flow chart for Urea Cycle diagnoses.
     
    Last edited: Dec 20, 2017
    pattismith and Asklipia like this.
  3. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    Endo Notes:
    I had three recent tests done and all came back normal.
    1. Morning testosterone was 616. Highest value since testing started 3 years ago.
    2. My Cortisol Stim test tripled from 9.2 - 23.2 - 27.3. Doctor described my cortisol response as "robust".
    3. My overnight water deprivation test came back normal. I was able to sufficiently concentrate my urine. So diabetes insipidus seems unlikely.
    I have a follow-up appointment with him on Feb 21 to figure out next steps.
     
    pattismith likes this.
  4. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    HLA-DQB1 0602/0603 Notes:
    I had my HLA gene testing for Celiacs. It came back negative for Celiacs. However, I have HLA-DQB1 0602/0603. Apparently these two can be associated with Lupus, Sjogren's, Hodgkin's and Narcolepsy.

    So we are going to try rheumatology and neurology again. Get a second opinion for the sake of being thorough.

    Sjogren's HLA studies:
    Link - In primary Sjögren's syndrome, HLA class II is associated exclusively with autoantibody production and spreading of the autoimmune response.
    Link - HLA markers and clinical characteristics in Caucasians with primary Sjögren's syndrome.
     
    Last edited: Jan 26, 2018
    pattismith likes this.
  5. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    Home Experiment Notes - Started 12/14/2017: I am taking large amounts of vitamins and minerals. Specifically, B1, B3, and B5. Rather than increasing Vitamins and Minerals more, we are going to concentrate more on improving digestion. We are trying to get more micro and macro nutrients from food. I'll likely do a 4th SpectraCell Micronutrient test some time in late February or early March.
    1. Digestive Enzymes: Improve digestion. Reduce possible GI Microbe protein ammonia fermentation
    2. Colostrum: Improve GI micro flora balance, reduce GI toxins
    3. Decrease Protein, Increase Fiber: Improve micro flora balance, reduce GI toxins
    4. Probiotics: Ammonia reducing strains due to suspicion of Urea Cycle issues.
    5. Eat what I crave now and as a kid. Trying to focus on the whole food cravings.
    6. Compression Socks for POTS
    Results so far:
    1. Good: Improved bowels, Reduced “Toxic” poops, Improved sleep, Reduction in excessive thirst
    2. Bad: Increased headaches
     
    Last edited: Jan 26, 2018
    pattismith likes this.
  6. sb4

    sb4 Senior Member

    Messages:
    546
    Likes:
    589
    United Kingdom
    @JasonUT Pehaps you could do something like the potato diet. I have been considering it but heistant due to deuterium. Basically just eat potatoes. They contain almost all the minerals and vits we need plus they should be real easy to digest (waxy ones should be best, something to do with lower amylopectin). They also contain resistant starch to feed gut flora and even some mud which could be good depending on pesticides.

    If not, maybe eat most of your diet in coconut oil, its what I'm doing now. The MCT are meant to absorb without need for digestion. C oil + Potatoes + protein powder + nutritional yeast = easy on gut???

    You say you are at 80-90% now, what where you before and what have you done to get this far. Is it just messing around with B-vitamins and the like?
     
  7. ljimbo423

    ljimbo423 Senior Member

    Messages:
    944
    Likes:
    1,702
    United States, New Hampshire
    I use to eat just a pork chop for breakfast and would get the sibo gurgling and rumbling that is common with fermenting carbs in sibo.

    I didn't realize that protein could be fermented by bacteria at the time. So when bacteria ferment protein, one of the by products is ammonia?
     
  8. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    Yes, all things fiber. My nutrioniest likes colorful salads. The greater the vegetable diversity the better. Waxy potatoes, new potatoes, have been a staple for me. My nutritionist likes Olive Oil and Safflower Oil for MCT. I've also been experimenting with collagen powder. This is essentially a low glutamic acid/glutamine, high glycine protein powder. It seems more relaxing for me than other protein powders.

    I was probably functioning around 30-40% health. I essentially spent about 20 hours a day in bed and couldn't work. Time out of bed was limited to hygiene and eating. I feel 80-90%, but I still have a ways to go. There are still some health issues that are perplexing that we haven't figured out yet.

    Currently, I contribute my personal improvements to 3 things:
    1. Balancing Micronutrients - Mostly B-Vitamins
    2. Being Diagnosed with POTS - This has helped me understand what my body is doing; however, it doesn't explain why. A POTS diagnosis forced me to put greater emphasis on salt, hydration, smaller meals, compression socks, paying attention to my early symptoms before I crash - dry nose, dry mouth, dizziness, protruding veins in my arms, tingling in my scalp. These symptoms mean (1) pound 16 oz of salt water or (2) lay down or (3) both
    3. Trying to figure out the macronutrient digestion (protein, carbs, fats, fiber) has been interesting and is the latest area that we are trying to understand. We haven't figured it out, but it appears that my body responds to changes in ratios and types.
     
    Last edited: Jan 27, 2018
    sb4 likes this.
  9. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    Yes, Ammonia is a by product of protein digestion. Mostly the amino acid glutamine. The attached file provides a good summary. I have been sleeping much better since reducing my protein and increasing my fiber via cooked and raw vegetables, and adding a digestive enzymes with each meal.
     

    Attached Files:

    Last edited: Jan 26, 2018
    ljimbo423 likes this.
  10. ljimbo423

    ljimbo423 Senior Member

    Messages:
    944
    Likes:
    1,702
    United States, New Hampshire
    Thanks for the response and the PDF. Very good info in it for anybody interested in ammonia metabolism!

    Jim
     
  11. lior

    lior Senior Member

    Messages:
    473
    Likes:
    1,633
    London
    Hi, thanks @JasonUT and @Chocolove from your posts in November.

    I considered adrenal fatigue before but the symptom list didn't seem to fit me.

    I am drinking a lot of water every day. I'm not tracking it carefully but I think it's 12-15 pints per day. It's more of a case of being thirsty and then peeing, rather than peeing then being thirsty. I'm dehydrated sometimes when I wake up, to the point that if I have a blood test in the morning, I'm too dehydrated to get enough blood out of me.

    I've been thirsty for as long as I'm had CFS.

    They did tests and my liver function is a little off, so they plan to repeat the test in a month to see if it's getting worse.

    The doctor at that time said to carry on drinking as much as I need. Today I went to the nurse about something else, and she said I ought to try cutting down on drinking water, little by little. She said that drinking too much water is habitual, and if I cut down slowly then I shouldn't get headaches from drinking less. She said tea and soft drinks don't count.

    I don't drink soft drinks. I drink 1 juice, 1 decaf coffee, and sometimes 1 herbal tea a day. And then lots of water, because I'm thirsty. And maybe 3 alcoholic drinks a month.

    I'm reading about electrolytes - is it literally as simple as putting sea salt in my water? I always thought that would make me more thirsty. Does the water taste salty?
    What else could I put in the water? I heard cucumber might work.
    Would it work if I just ate more olives? :)
    Should I switch some water for herbal teas? :S
    I like liquorice as in the Panda stuff - https://www.amazon.co.uk/Panda-Natural-Soft-Licorice-Bars/dp/B008RJZ2PE
    Would eating more of that help? :)
    I'm going to try liquorice tea, thanks for the suggestion @Chocolove

    How are you doing with your thirst now @JasonUT ? Has something helped you in particular?
     
  12. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    Hello,

    I am still in the experimental phase; however, I believe the following may be helping:
    1. Digestive Enzymes: Improve digestion. Support gastric secretions. Reduce possible GI Microbe protein ammonia fermentation
    2. Decrease Protein, Increase Fiber: Improve micro flora balance, reduce GI toxins. I also think the added fiber might be slowing down my motility which may be improving fluid reabsorption from stool. I have noticed bulkier and firmer stool.
    3. Increase Salt - I add 1/8 tsp to every 16 oz glass of water I drink and salt my foods to an extreme. I am guessing my total supplemental salt intake is around 10 grams per day.
    [​IMG]
     
    lior likes this.
  13. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    Careful, it depends what your diagnosis is. This may back fire if you suffer from hypotension or POTS.
    Source1, Source2, Source3, Source4, Source5

    Yes, it tastes salty. I crave salt. 1/8 tsp salt added to 16 oz water tastes good to me.
    Source1, Source2

    I crave vegetable juice. It is naturally high in sodium and other electrolytes.

    Sure, I snack on olives regularly. They are very high in Sodium.
    Source1

    I like Licorice Root and Sleepytime. Supposedly, Licorice Root is vasoconstricting which helps increase blood pressure.
    Source1, Source2, Source3
     
    Last edited: Feb 26, 2018
    lior likes this.
  14. lior

    lior Senior Member

    Messages:
    473
    Likes:
    1,633
    London
    Thanks so much @JasonUT , you're a font of knowledge. I'm going to buy some liquorice tea today, and olives.

    I'm not sure if I have POTS. I'm going to do that 'poor man tilt table test' in one of your sources.
     
  15. lior

    lior Senior Member

    Messages:
    473
    Likes:
    1,633
    London
    Did the test, don't think I have POTS. Might repeat it later just to make sure.
    I have got my olives and licorice tea now!! Hope it's going to make the difference. Thanks for your advice :)
     
  16. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    I did the poor man's test in the morning and evening. My morning results are usually worse. I think it may be because I am less hydrated.

    Poor Man's Tilt Table Test:
    Morning: 60 bpm to 110 bpm
    Evening: 60 bpm to 85 bpm
     
  17. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    Dr. Google has become a good friend.
     
  18. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    It's been a month since my last post. Here is a summary:
    1. Endocrinologist - Ran some more labs, but nothing popped up.
    2. Rheumatologist - Ran Labs and X-Rays of major joints. Results do not seem to suggest any type of autoimmune problem. However, discovered high Albumin in 24 hour Urine test plus excess urine output of 4500 mL in 24 hours.This seems to suggest something strange with my Kidneys. Mayo article on causes of high protein in Urine. It's interesting to me that Mayo lists "Orthostatic proteinuria (urine protein level rises when in an upright position)" as one possible cause. I was diagnosed with POTS on Nov 1, 2017. I wounder if there is a relation. Also, I have brought up my concerns with elevated BUN in posts #14, #92, #109, #122 which also suggests a possible Kidney issue.
    3. Neurologist - Trial 0.1 mg Florinef. I have started slowly with 1/4 tablet (0.025 mg) increasing every 7 to 10 days. I am now at 0.05 mg, but I can't tell yet if it is helping. I have been monitoring my blood pressure more closely through the trial. I do notice that I am more symptomatic the longer my diastolic pressure is below 70 mmHg.
    Next Steps:
    1. Still trying to get into Metabolic Genetic Clinic for IEM.
    2. Nephrologist for complete Kidney eval.
    3. Endocrinologist for parathyroid disease - Link
     
    Last edited: Mar 27, 2018
  19. Eastman

    Eastman Senior Member

    Messages:
    433
    Likes:
    390
    Have you seen these papers?

    High-dose thiamine therapy for patients with type 2 diabetes and microalbuminuria: a randomised, double-blind placebo-controlled pilot study

    Effect of high dose thiamine on the levels of urinary protein biomarkers in diabetes mellitus type 2
     
    sb4 likes this.
  20. JasonUT

    JasonUT Senior Member

    Messages:
    222
    Likes:
    241
    New SpectraCell Micronutrient Update

    Round 1 - 3/28/2017:
    Functional deficiency: B1, B3, Fructose
    Borderline deficiency: B6, Folate, Serine, Glutamine, Oliec Acid, Glutathione

    Round 2 - 6/10/2017:
    Functional deficiency: B1, B3, Fructose
    Borderline deficiency: B6, Glutamine, Oliec Acid, Glutathione

    Round 3 - 10/23/2017:
    Functional deficiency: None!
    Borderline deficiency: B3, Pantothenate (B5), Biotin, Inositol, A, Chromium, CoQ10

    Round 4 - 4/9/2018:

    Functional deficiency: None!
    Borderline deficiency: Pantothenate (B5), B12, Choline, Vitamin K2

    Pantothenate (B5) Historical Results - Ref Range >7%:
    (1) 20%;(2) 19%; (3) 10%; (4) 10%
    Comments: I started supplementing with 500 mg BID based on Round 3 results. See post #97 for additional thoughts on B2 and B5.

    B12 Historical Results - Ref Range >14%:

    (1) 25%;(2) 24%; (3) 22%; (4) 18%
    Comments: I reduced by B12 from 2000 mcg to 1000 mcg once per day. Maybe this was a bad move. I guess I need to go back to 2000 mcg. I also started lowering animal protein and shifting towards higher plant based diet. I believe animal protein is the only source of B12 in the diet.

    Choline Historical Results - Ref Range >20%:
    (1) 28%;(2) 27%; (3) 27%; (4) 22%
    Comments: I currently supplement with 10 grams of Lecithin per day which is supposed to be a good source of Choline.

    Vitamin K2 Historical Results - Ref Range >30%:

    (1) 52%;(2) 50%; (3) 46%; (4) 36%
    Comments: My Vitamin K2 levels have been historically high. Is it possible that I have opened the flood gate for Vitamin K2 consumption by fixing other deficiencies? I made a similar argument about B2 and B5 in post 97.

    Observations:
    1. Vitamin B5 is implicated in POTS, OI, and Hypotension. Specifically, its relation to RAAS and aldosterone. [Source1, Souce2, Source3] I have started a trail of Florinef which is supposed to be a synthetic steroid which helps retain salt and fluid. It acts much like aldosterone. My initial response to Florinef has been good. [Source1, Source2]
    2. Choline has also been implicated in POTS, OI, and Hypotension. Specifically its relation to the acetylcholine which is the primary neurotransmitter of the autonomic nervous system. [Source1, Source2, Source3, Source4]
    Brainstorming Next Steps:
    1. Increase B5 supplementation. Dr. James L. Wilson likes 500 mg TID.
    2. Increase Lecithen or find alternative Choline source.
    3. Go back to 2000 mcg B12 per day.
    4. Research Vitamin K2. How does it fit into this mess?
     
    Last edited: May 1, 2018
    sb4 likes this.

See more popular forum discussions.

Share This Page