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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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First try at Active Protocol and have questions.

JasonUT

Senior Member
Messages
303
Nutritionist Appointment 6/19 Notes:

Treatment adjustments:
1. Increasing NAC too fast possibly causing too much detox. Reduce from 600 mg TID to 600 mg BID. Hold for now.
2a. Nebulized Glutathione once per day if possible.
2b. Nebulized Mucomyst on non-nebulized glutathione days
3. Complete follow-up SpectraCell Micronutrient test
4. Complete Genova Oxidative Stress Blood Test during next crash
5. Likes Kirkman brand Glutathione cream

Comments/Concerns:
1. Low anti-oxidant status causing too much oxidative stress. Causing mito dysfunction.
2. Likes Oral NAC, Nebulized NAC, and Nebulized glutathione as a package due to different modes of action in the body
3. SOD and Glutathione Redox SNP's are a concern
4. Concerned about pre and post challenge marginal lead (Pb) levels. Lead (Pb) seems to disrupt SOD and Gluathione Redox enzymes which ties back to previous concerns #1 and #3.
5. Nutritionist had his own personal issues with low trans-sulfuration. He agrees with high sulfur loading to lift/fill the trans-sulfuration pathway. He very slowly worked up to 15 grams of MSM per day to help solve his own issues.
 
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JasonUT

Senior Member
Messages
303
I really like this Citric Acid Cycle graphic so I wanted to post it before I forgot it. It helps to link Nutrient deficiencies to OAT results. I am deficient in B1, B2, B3, B6, B9, Cysteine, Glutamine, Taurine, Glutathione, Serine, and Oliec Acid per SpectraCell, MPP, and OAT. I am very curious to see the results of my new SpectraCell test. My first SpectraCell test was used to create a baseline protocol. Now we will get to see if my baseline protocol was even close to the target or if we created new co-factor deficiencies.

Based on previous test deficiencies, I likely have a block in the following paths:
  1. Carbs to Acetyl CoA (B1, B2, B3)
  2. Keto Acids to Acetyl CoA (B1, B2, B3)
  3. cis-Aconitate to Isocitrate (Cysteine)
  4. Isocitrate to alpha-ketoglutarate (B3)
  5. alpha-ketoglutarate to Succinate (B1, B2, B3)
  6. Succinate to Fumarate (B2)
  7. Malate to Oxaloacetate (B3)

ZI-0ISW-2006-JAN00-LASON-56-1
 

JasonUT

Senior Member
Messages
303
Hypothesis: I tested low in taurine per MPP Extended test. Low Taurine is leading to borderline bile production which is contributing to poor digestion, stress on the liver, poor toxin elimination, and can be extended to explain some of my other non-specific symptoms.

Summary of Key Points:
  1. Its function is to aid in the digestion of fats in the duodenum. Bile is composed of bile acids and salts, phospholipids, cholesterol, pigments, water, and electrolyte chemicals that keep the total solution slightly alkaline (with a pH of about 7 to 8). [Source] Glycine, taurine & phosphatidylcholine are required to create healthy bile flow and function. [Source]
  2. Bile also contains the conjugated toxins from the 2 phases of liver detoxification. These toxins may include carcinogens, xenobiotic chemicals, pharmaceuticals and heavy metals like mercury, aluminum and lead. [Source]
  3. The liver cycles such that bile production occurs approximately between 3AM and 3PM. The liver shifts to synthesizing chemical and toxins from around 3PM to 3AM. [Source] This is interesting to me, because my symptoms seem to track this cycle. I start to feel terrible around 3-4 AM in the morning and my symptoms start to slowly lift after 3 PM when the liver shifts to processing toxins.
  4. Benefits of Taurine
    • Increase bile production and decreases bile saturation. [Source]
    • Comprises 50% of the amino acids in the heart. It is important for maintaining proper blood pressure and rhythm. [Source]
    • important for brain development and neurotransmission. [Source]
    • Taurine is important in the eye's retina. [Source]
    • modulates insulin activity and the metabolism of fat and glucose. [Source]
    • Taurine also shows activity as an antioxidant [Source]
    • Scavenges hypochlorite [Source], fluoride [Source] and chlorine.
    • binds to xenobiotics [Source]
  5. Taurine may be considered a conditionally essential amino acid, because under stress production may slow. [Source] I wounder if this relates to the slow down of the CBS enzyme under stress in the trans-sulfuration pathway? My labs show slow trans-sulfuration leading to deficiencies in Cysteine and end products glutathione and taurine.
  6. This study suggests that Taurine can reduce sympathetic nervous response thus helping CBP and Pelvic Pain. I have been diagnosed with Pelvic Floor Dysfunction and my PT is big on reducing sympathetic nervous response. Taurine is a precursor to GABA which helps stress and anxiety response. [Source]
  7. Taurine seems to also have an anti-oxidant affect [Source]. It seems that Taurine has some affects on glutathione peroxidase, glutathione reductase and reduced glutathione [Source]. I wonder if supplementing taurine may relieve some of the burden on the trans-sulfuraiton pathway thus enabling a shift of cysteine from Taurine to Glutathione production.
  8. Taurine also seems to help move magnesium, potassium, and sodium [Source]. This can help relieve muscle pain and cramps [Source].
  9. Taurine deficiency triggers cell death, as shown by an increase in the percentage of apoptotic cells. [Source]
  10. Taurine reduced PAC's by 50% and PVC's by 100% [Source]. I have a long history of PVC's.
  11. Cysteine, methionine and Vitamin E is needed to synthesize Taurine [Source]. I think p5p b6 is also needed.
  12. Taurine is part of phase 2 liver detox [Source]
Other interesting things:
  1. This article talks about increasing bile acid and it's affects on thyroid hormones. This customer review on Amazon discusses her positive thyroid response to taurine. I wonder if this relates to point 4 above in relation to chlorine and fluoride detox.
  2. This research discusses some relationships between bile and gut microbiome.
  3. This article seems to have a comprehensive analysis of Taurine plus it's relationship to Glutathione and the trans-sulfuration pathway.
  4. This article has good information on Taurine in relation to liver protection and toxins.
  5. Nutrahacker recommends Taurine for me due to SNP's: DAOA, GAD1.
 
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JasonUT

Senior Member
Messages
303
SpectraCell Round 2 - 6/20/2017 Results: Baffling to say the least. Overall, very little changed. Post #33 discusses my first SpectraCell Test.

Functional Deficiencies:
B1, B3, Fructose Sensitivity

Borderline Deficiencies:
B6, Glutamine, Oleic Acid, Glutathione

What's Changed since the first test on 3/28/2017?
No longer deficient in B9 and Serine.

What did we change previously?
  1. Oral B-Right 1 per day changed to Source Naturals Sublingual B-Complex TID. Our hope was that this would bypass digestion thus eliminating that variable from the equation.
  2. I also started a subcutaneous B-injection three times per week. See post #44.
  3. Increased mFolate from 15 mg to 20 mg per day.
  4. Added B1 and B2 sublingual at Breakfast and Lunch
What does B1, B3, and B6 have in common? Why are these consistently deficient in SpectraCell and OAT's? Does demand exceed supply? Maybe transport issues into the cells? But why only these three B-vitamins? Maybe a dysfunctional pathway? Which pathway?

SpectraCell lab comment states: "Deficiencies of thiamin, riboflavin, and pyridoxine commonly accompany (or can cause) niacinamide deficiency." This seems to be exactly what's happening to me. Why is this and how to fix it?
 
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JasonUT

Senior Member
Messages
303
Methylation/Mito Doc Notes 7/14:
  1. Simplify protocol based on SpectraCell results. The approach we were taking didn't move the needle very much. I am still deficient in B1, B3, B6, Glutathione, Glutamine, and Oleic Acid. He speculated I might be having expensive poop so he wanted to start clean and refocus.
  2. Try PatchMD B-complex instead of Source Naturals B-complex sublingual.
  3. Replace Sublingual B1 with Allithiamine. We have received some direct input from Dr. Derrick Lonsdale and hope this helps.
  4. Discontinue Oral NAC and Glutathione Lotion for now. These seem to be taxing my body too much. We may revisit this later.
  5. Add in some adrenal support, rest, deep breathing, etc, etc.
  6. Add in a gentle herbal liver tonic.
  7. Make changes at a much slower pace. The body is slow to adapt.
I'll try to document my new protocol here.

Concerns:
  1. My biggest deficiencies are B1 and B3. Hopefully, the Allithiamine helps with the B1. I was hitting the Green Tea hard and apparently this is counterproductive for B1 replenishment.
  2. Uncertain on B3 replenishment strategy. Maybe the PatchMD B-Complex is enough?
thiamine.jpg
 
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JasonUT

Senior Member
Messages
303
New Spin on an Old Theme: I have been racking my brain trying to understand my lab results and think I finally came up with a new theory. I wanted to document it before I forgot it.

I have said that I have several nutrient deficiencies which we are trying to fix. This same pattern seems to have existed since I first become ill. Unfortunately, it has taken a long time to take this seriously.

SpectraCell Micronutrient: Functional - B1, B3; Borderline - B6, Glutamine, Oleic Acid, Glutathione
OAT: High Oxalates, Borderline B6, Low B2, Borderline B9
MPP: Borderline B9, Low Cysteine, Gluathione, and Taurine

I struggled with B2 specifically. I couldn't reconcile the idea that SpectraCell shows high B2, but OAT shows low B2. Then it dawned on me that B vitamins work as a team. This thought caused me to think about SpectraCell and OAT tests from a functional stand point. SpectraCell measures the concentrations in the cell and OAT shows the metabolites or waste products of the metabolic processes. Therefore, B2 exists in the cell per SpectraCell, but isn't being used per OAT. Why?

Maybe because it's teammates are out of the game injured. I have read that B1, B2, and B3 work as a team. I am functionally deficient in B1 and B3; therefore, is it possible that B2 can't be metabolized (i.e. metabolites don't show up in urine)? Could this explain why it is showing up high on SpectraCell, but low on OAT? Perhaps balancing B1 and B3 will help balance the other B's?

We are going to start the Lonsdale protocol for B1 repletion by titrating Lipothimaine in conjunction with Magnesium and B-complex. Lonsdale has many articles and research papers on Thiamine. Here is one and another on the Vitamin Paradox.

So I feel relieved that we have a game plan for B1 and an expert coaching us along the way. However, B3 is also functionally deficient. What do I do about B3 repletion?

I have tried so many things. This B1 repletion journey sounds like it could be a long journey. I pray that it helps.

On a similar note, Ben Lynch suggests that a reaction to Glutathione could be due to a deficiency in B1 or Molybdenum [Source]. I continually react poorly to Glutathione supplementation in any form. It appears that thiamine is needed in the pentose phosphate pathway for NADPH production which is then needed in glutathione reductase [Source]. Maybe glutathione supplementation was placing higher demands on glutathione reductase, NADPH and thus B1?
 
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JasonUT

Senior Member
Messages
303
Nutritionist Appointment 8/8/2017 Notes:
  1. Lipothiamine may be working. Initial reaction, while weird, may be a good sign. The reaction may be the "paradox" that Dr. Derrick Lonsdale speaks of in this article.
  2. Increased B1 may be causing overmethylation and lowering demand for B12/Folate. Experiment with lower dosages of mFolate and increased dosages of Calcium Folinate. Start by removing late day dosages of mFolate and note sleep quality.
  3. Experiment with low dosage B3 Nicotinic Acid and note reaction.
 
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physicsstudent13

Senior Member
Messages
611
Location
US
how do you nebulize glutathione for maximal absorption is bulk powder supplements a good kind? what teaspoon dose of powder do I go with?

can you supply that with NAC powder and whey protein? NAC in mouse studies destroys or thickens the walls of the lungs and heart

my doctor is killing me with high glutathione prices. he administers it with a butterfly IV?
 
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Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
thiamine.jpg
[/QUOTE]
I feel concern with one point in this chart. On the right side (thiamin interference factors) I see that thiamin absorption would be disturbed by thiaminase from polyphenols like resveratrol.
As I have been taking lyme herbs like Japanese Knotweed for 2 years now (after ABX b1 antagonist like amoxicillin and azythromycin), I am afraid that my vitamin b1 status is poorer than ever.
Please do you have the source of this document @JasonUT ?
 

JasonUT

Senior Member
Messages
303
Mito/Methyl Doc Notes 8/30/2017:
1. He agrees that the weird symptoms are consistent with paradox or healing crisis. He actually feels good that I have had increased flu-like symptoms with increased sinus congestion. He thinks it is possible my body is gaining strength and "dumping" bad stuff.
2. He commented that it takes a long time for the body to recalibrate. He likes to see small continual improvement over weeks and months.
3. He is on board with rotating in benfotiamine as an experiment.
4. He wants me to continue with current protocol and follow-up in 6-8 weeks.
 

JasonUT

Senior Member
Messages
303
I thought I'd post a quick update on my experiences so far with B1. I started Lipothiamine at 50 mg on July 24. I worked up to 400 mg of lipothiamine as of Sept 3. I take 100 mg at breakfast, lunch, dinner, and bedtime.

Pros:
1. Cognitive and Physical energy has increased. Shopping trips and yard work are now feasible in moderation. I walk 2-3 miles per day around the neighborhood.
2. Headaches and brain fog have decreased significantly. I am able to focus on work and TV shows much easier. I am even playing some fast paced video games in moderation.
3. Sleep has improved. I no longer take over the counter sleep aids except 1 mg melatonin. Dreaming is extremely frequent. Sometimes it feels like my dreams are too much and too intense. However, I have been waking up with enough energy to do a couple choirs in the morning.
4. Perhaps the biggest improvement is around POTS and orthostatic intolerance. Standing, cooking, choirs, walking are all much easier. Heart rate is much more stable. Usually jumping up to 85 bpm when standing and working down to 75 bpm within a few minutes. It's very hard to describe, but it also feels like my heart beat is stronger.

Cons:
1. Sleep is improved, but still odd. It's not possible for me to sleep in late. I do wake up with energy early around 5-6 AM. Many times I want to just relax and go back to sleep, but can't.
2. I have these odd spells randomly in a day were I have an anxious/depressive episode and then it will be followed rapidly with a sudden deep sleepiness. This seesaw feeling seems to happen rapidly over a 1-2 hour time frame. I find that I will take 20-30 minutes naps during these episodes. The naps do feel good.
3. Increased body aches, joint pain, muscle pain that reminds me of being sore and stiff after playing soccer or basketball.
4. Increased sinus congestion and sore throat. Arm pits and groin area seem to ache. Lymph nodes maybe?
5. PEM still seems to be an issue to some degree which I don't yet understand. It's too early to tell, but my envelop maybe increasing and the duration of a PEM episode maybe decreasing. Still too early to tell for sure what is happening.
6. Increased pins and needles in face and scalp.

Next Steps:
1. Continue to experiment with B3.
2. Start experimenting with Benfotiamine
3. Follow-up SpectraCell around the end of October.
 
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JasonUT

Senior Member
Messages
303
Nutritionist Appointment 9/2/2017:

  1. Continue B1 Lipothiamine protocol. He is okay with experimenting with Benfotiamine.
  2. We reviewed latest labs and compared to old labs. There seems to be some wildly inconsistent hormone levels: LH, FSH, TSH, ACTH, Testosterone, Prolactin. He suspects some kind of signaling problem within the Endocrine or ANS. Something may be broke in the feedback loop, but he isn't sure where.
  3. Proposed Clomid as a method to "jump start" my testosterone level so that it is more consistent.
 

JasonUT

Senior Member
Messages
303
Neurologist/Dysautonomia Doc Notes 10/4/2017:

I saw a neurologist today that specializes in dysautonomia. Here are my notes from the appointment:
  1. Tilt Test scheduled. Reduce salt consumption in the days leading up to the test.
  2. He did a pin prick test which was interesting. I felt little to no sensation in my hands and feet. However, the pin prick became far more noticeable as he moved up my arms and legs. He stated that this suggests some level of nerve damage. This Mayo article discusses peripheral neuropathy. The article specifically mentions B-vitamin deficiency as one of many possible root causes. Specifically:
    B vitamins — including B-1, B-6 and B-12 — vitamin E and niacin are crucial to nerve health.
    The same article also describes autonomic nerve damage symptoms:
    If autonomic nerves are affected, signs and symptoms might include: Heat intolerance and altered sweating, Bowel, bladder or digestive problems, Changes in blood pressure, causing dizziness or lightheadedness
    Post 66 above mentions peripheral neuropathy.
I am starting to sound like a broken record... I am functionally deficient in B1 (Thiamine) and B3 (Niacin). Borderline deficient in B6.

If B1, B3, and B6 are the root-cause of my illness then the questions in my mind are:
  1. What do I need to do to replenish these nutrients efficiently and effectively?
  2. Will the nerves regenerate and repair with time? If so, how long will it take?
  3. Will regenerating nerves help balance my endocrine system, glands, and hormones?
 
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JasonUT

Senior Member
Messages
303
Integrative Doc Notes 10/17/2017:

My DHEA, Testosterone, and Adolsterone are on the low side of normal. As a result, we are going to experiment with DHEA, Pregnenolone, and 7-Keto DHEA. Originally we discussed starting at 50 mg DHEA, 100 mg Pregnenolone, and 100 mg 7-Keto. However, I prefer to start low and work up. As a result, we are going to start at 25 mg DHEA, 25 mg Pregnenolone, and 50 mg 7-Keto. We will adjust in 25 mg increments and monitor with labs.

DHEA-S 193 ug/dl (Ref Range 103 - 446 ug/dl)
Testosterone varies from 129 - 441 ng/dl (Ref Range 300 - 1080 ng/dl)
Adolsterone 4.0 ng/dl (Ref Range 4.0 - 31.0 ng/dl)

Hormone therapy seems like such a wacky science to me. I am trying to wrap my head around it, but it is very complicated.

Post-The-Endocrine-Journey-1.jpg
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Adolsterone 4.0 ng/dl (Ref Range 4.0 - 31.0 ng/dl)

Hi Jason-
I noticed that your Aldosterone level is just barely in the low end of the ref. range. Do you have trouble holding water?

I often drink about 8 ounces of water but then loose about twice that amount in the next few hours. I think it might be from low Aldosterone.

Jim