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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.

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Yes. Along with salt cravings, low BP, dysautonomia, and POTS symptoms.

I also have huge salt cravings and use A LOT of sea salt on all my food every day. That extra salt helps me to hold water but not for very long. My BP is normal but I think I have mild POTS.

I started taking 15mg DHEA several days ago, sublingually, and notice a small increase in energy and a mild sense of well being within a few minutes.

I also started taking adrenal extract sublingually first thing in the morning. That helps significantly with waking up and getting moving. Sublingual adrenal extract tastes like dried liver though!:eek::)

Thanks for posting that diagram of the Pregnenolone steal pathway! It's very informative. I look forward to hearing how you do with the preg. dhea and 7-keto supps.

Jim
 

JasonUT

Senior Member
Messages
303
Cholesterol and Hormones:
HDL: 92 (41 - 75 mg/dL)
LDL: 127 (80 - 130 mg/dL)

I have sufficient cholestral, but low-ish levels of DHEA, Testosterone, Cortisol, and Aldosterone:
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)
LH : 3.7 (1.2 - 8.6 IU/L)

So what's happening?

steroidogenesis-sexhormone.png
 

JasonUT

Senior Member
Messages
303
Dou you take enough Zinc + B5?
High HDL + low testosterone = low zinc

I believe so. I have had 3 tests for zinc: Serum, intercellular, and SpectraCell and all showed good status of both zinc and copper. SpectraCell shows very high intercellular B5. This article about copper and thiamine is interersting to me.
 

Gondwanaland

Senior Member
Messages
5,092
This article about copper and thiamine is interersting to me.
Interestingly I had hyperglycemia events from MSM.

I am finding better results from B1 with the addition of Folinic Acid. However, I read the B1 can increase DHT (and therefore reduce testosterone).
 
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JasonUT

Senior Member
Messages
303
Dysautonomia and Hormone Updates:

  1. Confirmed POTS with Tilt Table Test - HR changed from 60 to 100 after 10 minutes and up to 125 after 20 minutes. I felt like my chest was going to explode at the end.
  2. Hormones continue to act up. I hadn't started DHEA, 7-Keto, or Pregnenolone supplements yet. Ran a second hormone panel. My hormone levels seem to be a moving target. Another complex issue associated with dysautonomia? I don't know what to make of it all.
10/10:
Pregnenolone 168 (Range 27 - 203 ng/dl)
DHEA-S 193 (Ref Range 103 - 446 ug/dl)
Testosterone 389 (Ref Range 300 - 1080 ng/dl)
SHBG 61.3 (16.5 - 55.9 nmol/l)
Free Testosterone 5.2 (4.8-25.7 NG/DL)
Adolsterone 4 (Ref Range 4.0 - 31.0 ng/dl)

10/30:
Pregnenolone 94 (Range 27 - 203 ng/dl)
DHEA-S 186 (Ref Range 103 - 446 ug/dl)
Testosterone 527 (Ref Range 300 - 1080 ng/dl)
SHBG 69.4 (16.5 - 55.9 nmol/l)
Free Testosterone 6.6 (4.8-25.7 NG/DL)
Adolsterone 10.9 (Ref Range 4.0 - 31.0 ng/dl)​
 
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ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
My hormone levels seem to be a moving target. Another complex issue associated with dysautonomia? I don't know what to make of it all.

There are some really big differences in some of those hormones. It does seem odd that there would be such a big change in such a short period of time. However, we are talking about CFS.:confused: I have tried taking very small doses of pregnenolone in the past but had major anxiety from 5mg or less.

So there's a really good chance my hormones are messed up as well. It's great that you can get this testing done, even if you don't want to treat it because it's such a moving target. I'm convinced that my core problem causing my CFS is dysbiosis and leaky gut.

It's taking a long time to treat though, because of all the die off from the gram negative bacteria and lipopolysaccharides. I have made good progress in 7 months even with the die off slowing things down.

Jim
 

JasonUT

Senior Member
Messages
303
Nutritionist Appointment 11/6 Notes:
  1. Recumbent Bike: 30 to 40 minutes 3x daily. Perceived exertion should not exceed breathing through nose. Should be able to carry a normal conversation while pedaling.
  2. Liquid Protein with Insulin Induction: 20 to 25 mg with small amount of sugar to induce insulin spike. Drink 0 to 10 minutes after workout to ensure insulin goes to muscles and not brain.
  3. Post Exercise - "Real" Salt loading. Not table salt.
  4. Feed mito pre-workout with 5 grams d-ribose and 100 - 200 mg CoQ10.
  5. Stop hormones until after complete Endo work-up
 
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JasonUT

Senior Member
Messages
303
SpectraCell Micro Nutrient Update

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

Round 2 - 7/10/2017:
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
Observations:
  1. Vitamin B5 used to be extremely high, but has dropped. Is it now being used more?
  2. B12 was extremely high. Now it has reduced a little, but still high. Is it now being used more?
  3. Serine has improved significantly. Taking Lecithen
  4. Gluatmine has improved a little so that it is no longer borderline. Taking collagen powder
  5. Carnitine levels have improved, but I am not taking extra supplements.
  6. Vitamin A is a new deficiency in 10/23/2017
  7. Vitamin K2 used to be extremely high, but has dropped. Is it now being used more?
  8. Minerals have been flat.
  9. Glucose-Insulin interaction score has dropped.
  10. Fructose sensitivity is healthy and no longer functionally deficient
  11. Glutathione has barely ticked up out of borderline state.
  12. Vitamin C used to be very high, but has dropped some.
  13. Total Antioxidant Function is now considered healthy.
Summary of my approach to B1 and B3:
  1. Thiamine HCl and thiamine mononitrate was useless to replenish B1. I switched to Lipothiamine at 400 mg and it worked based on 10/23/2017 test results.
  2. Nicotinic Acid at 35 mg and Nicotinamide at 115 mg was not enough to replenish B3. I added 100 mg Niacin TID + 500 mg Nicotinamide. Total B3 equals 950 mg which moved the needle, but still isn't enough. I had this hunch that I was still low in B3, because I could "feel" the B3 when I took extra or forgot to take it.
  3. I was taking 21.4 mg of Folate per day and still deficient. Therefore, we switched focus to B1 and B3 in hopes that lifting B1 and B3 would help lift B9. B1 and B3 are critical for digestion. It appeared to work, because I lowered my B9 to 6.4 mg yet my B9 deficiency resolved. Lonsdale also speculated that B1 can help B9 utilization.
My brainstorming:
  1. Overall, I have been more functional. Increase from ~60% to ~80%. Biggest gains have been in cognitive function.
  2. Should I take an extra Jarrow B-Right with multi at breakfast? This will add 125 mg B3, 125 mg B5, 300 mcg Biotin, and 50 mg inositol. Covers 4 of the 7 deficiencies.
  3. Or should I add an extra multi at lunch? This will add 25 mg B3, 25 mg B5, 150mcg Biotin, 5 mg Inositol, 500 IU Vit A, and 200 mcg Chromium. Covers 6 of the 7 deficiencies.
  4. I stopped taking Niacin 100 mg TID on 10/24 due to the vasodilating effects and I was diagnosed with POTS on 11/1. I believe vasodilation may be the enemy of POTS. I replaced Niacin with 250 mg of Niagen.
  5. CoQ10 has been in my supplement cabinet for some time. It looks like it is time to experiment.
  6. The biggest decline is B5 and Chromium. The other borderline deficiencies are very marginal. Jarrow B-Right has a large B5 dosage and also has a large B3 dosage.
  7. Maintain high B1 TTFD dosage. I think I will switch to 200 mg Lipothiamine and 200 mg Alithiamine in divided doses. This should help with cost.
  8. Consider adding Niagen B3, Extra Multi, CoQ10, and/or extra Jarrow B-Right.
  9. Consider cutting back on the following: 5 mg mFolate, 8 mg Zinc-L-Carnosine, and 48 mg Mg L-Threonate. I have always had very healthy Zinc and Mg levels.
 
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JasonUT

Senior Member
Messages
303
BUN/Creatinine Ratio Revisited:
In post #14 I discussed this weird trend with my lab results for my BUN/Creatinine ratio. It appears that BUN/Creatinine can be a sign of dehydration. POTS, which I was diagnosed with on 11/1, is associated with fluid retention, blood volume, HR, and BP issues. All of which can relate to hydration level. Coincidentally, CoQ10 was deficient in my latest SpectraCell results. Upon further investigation there appears to be some evidence that CoQ10 supports improved Kidney function. The kidneys play a large roll in fluid retention via the RAAS system.

This article discusses CoQ10's relation to the kidneys, BUN, and Creatinine.
In the new study, 97 people (average age, 48 years) with chronic renal failure were randomly assigned to receive a placebo or 60 mg of CoQ10 by mouth three times per day for 12 weeks. Among the 45 participants who were already receiving dialysis, supplementation with CoQ10 resulted in an improvement in various measures of kidney function, including serum creatinine (29% improvement) and blood urea nitrogen (9% improvement). In contrast, kidney function tended to worsen in the placebo group, and the differences between CoQ10 and placebo were statistically significant. CoQ10 also produced significant improvements relative to placebo among the participants who were not receiving dialysis. By the end of the study, the number of people requiring dialysis had decreased from 21 to 12 in the CoQ10 group, but remained unchanged at 24 in the placebo group.

Appears to be more ammo to justify experimenting with CoQ10.

700px-Renin-angiotensin-aldosterone_system.png
 
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JasonUT

Senior Member
Messages
303
B2 and B5 Brainstorming:
In post 67, 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. 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?

I want to apply this same theory to B5. B5 is extremely high in my old SpectraCell, but very low in my OAT. Perhaps it wasn't being used because B1 and B3 were deficient. See graphic below.
Link to Nootropics comprehensive website on B5.

Now let's fast forward a bit in time. I have successfully replenished B1 with Lipothiamine 400 mg and have improved my B3 status from "functionally" deficient" to "borderline" deficient with 950 mg of mixed forms.

Did improving B1 and B3 improve Carbs to Acetyl CoA (B1, B2, B3, B5) pathway and Keto Acids to Acetyl CoA (B1, B2, B3, B5) pathway? Did I release the log jam and suddenly demand for B2 and B5 was created which didn't exist before due to B1 and B3 deficiency?

Based on my 10/27 SpectraCell test results, the answer appears to be Yes. It appears I have unclogged the log jam allowing B2 and B5 to be used. A follow-up OAT might be the definitive test to see if B2 and B5 metabolites are showing up in my urine.

It appears that OAT and SpectraCell together might be a very powerful combo test. You can see what's in the cells via SpectraCell and you can see the waste products of the cells via OAT.

An analogy might be a factory. Is the correct raw material inside the factory (SpectraCell)? Is the factory running efficiently producing appropriate waste products (OAT)?

3/28/2017 SpectraCell Labs:
B1 - 75 (Ref Range >78) - Functionally Deficient
B2 - 70 (Ref Range >53) - High Levels in Cells
B3 - 77 (Ref Range >80) - Functionally Deficient
B5 - 20 (Ref Range >7) - High Levels in Cells

10/27/2017 SpectraCell Labs:
B1 - 86 (Ref Range >78) - Normal-ish Levels in Cells
B2 - 59 (Ref Range >53) - Normal-ish Levels in Cells
B3 - 85 (Ref Range >80) - Borderline Deficient
B5 - 10 (Ref Range >7) - Borderline Deficient

ZI-0ISW-2006-JAN00-LASON-56-1
 
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JasonUT

Senior Member
Messages
303
Which lab does an intracellular zinc test? tnx
RBC Zinc and Copper at Clinical Pathology Labs - Zinc is order code 5632; Copper is order code 5696.

My functional medicine docs prefer OAT. My nutritionist prefers SpectraCell. I think the two tests together is what was key to decode part of what is going on with me. The results don't appear to match.... For me, I think the key may be understanding why the test results don't seem to match.
 
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