Something's making me feel better

Gingergrrl

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@optimist Thank you for what you said and I wish I could triple like your post! You are right, this illness does mess with our conscience when there is no real reason and then the emotions drain us even more. I feel incredible guilt each time a new treatment doesn't work for me as if I have failed and let everyone down.

Especially when my family and friends (and myself) get so hopeful each time that I found the right thing this time that is going to make me better. I need to just stay realistic and if I have a good or better day, it is true for that moment but at least for now, it is not something that I am able to sustain.
 

Hip

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Is selenium still helping you?
Yes, it's still working for me. Unfortunately though, a lot of other people who tried the 400 mcg dose found that it overstimulated them mentally, so they had to stop. I myself do not find any stimulating effect from selenium, just an noticeable improvement in fatigue and brain fog, that appears after around 10 days taking selenium at this dose level.
 

drob31

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@Gondwanaland Thank you and you are very kind and I always feel that sense of support here that only other PWC's can understand...

Yeah, don't worry about posting things in my thread. That's what this place is for; for people to share their experiences and help each other get well. It would make me very happy if I was able to help someone else as well.
 

drob31

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Here's my plan so far:

Pyluria support:

30 mg zinc
50 mg p5p

Mitochondria support:

15 grams D-ribose
8 mg ab12 (also part of methylation support)
1.2 grams of Magnesium glycinate (also part of general support)
PQQ:
NADH: 20 mg
L-Carnitine (free form) 1 gram
CoQ-10: 400 mg
Creatine: 5 grams

Methylation Support:

800 mcg Methylfolate
Methyl B12 (1 gram)
8 mg ab12
2 grams Hydroxy B-12
L-Carnitine Fumarate (855 mcg)

Gut support:

Autoimmune diet
Prescript-Assist
*Add Mutaflor if I can ever find it


HPA-axis Support (for high cortisol):

Rhodiola: 500 mg
Aswanganda KSM 66: 500 mg
Phosphatidyl Serine (not taking, but may re-add)

Thyroid Support (may not need):

Cytomel: 5 mcg (3x a day)
SRT (slow release t3): 20 mcg 1x/day

Testosterone Support (normal but high SHBG)

Sting Nettle Root (Lower SHBG): 2 grams
D Aspartic Acid (Raises LH): 4 grams


Bad Bacteria Support:

ABX Keflex: (already took for 4 weeks)

Bad Fungus Support (Candida):

Diflucan: (already took for 4 weeks)

Water Retention Support (if caused by aldosterone/renin-angiostenin system dysfunction)

Linisopril: (ace inhibitor): currently experimenting with 10 mg.

Water Retention Support (if caused by histamine):

Diphenhydramine: (also for sleep aid)
*Need to add something else that's non drowsy
DAO

Immune Support

TNF-a inhibitors???
Possibly add Equillibrant

General Support:

Vitamin C: -2 Grams buffered
Multiple B: (active forms)
Biotin: 5000 mg
Taurine: (1 gram)
Fish Oil: 3 grams



That's only like 50-60 pills a day. WOOOOOOOOOOOO!
 
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Gingergrrl

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Yeah, don't worry about posting things in my thread. That's what this place is for; for people to share their experiences and help each other get well. It would make me very happy if I was able to help someone else as well.
@drob31 Thank you and I just wanted to be sure. I always hope that something in one of my threads will help someone else down the line, too.

Your protocol is interesting and I was wondering how you came up with it all (or just a lot of trial and error?) Do you work with a naturopath? Also, do you have EBV or other viruses as the trigger of your illness? I apologize if you already explained all this!

I was not able to tolerate the methylation supplements or carnitine in the past. I tried D-Ribose for a year and tolerated it fine but never noticed any benefit.

What do you notice from the PQQ? I have a sample vial of bullet proof version of PQQ (sent to me by a very nice friend!) but have not tried it yet as I am trying several other new things and need to try one at a time.

The newest stuff I have added is the magnesium by nebulizer, selenium, and calcium. But I am always gathering data of new stuff that I can try. I take a lot of supplements per day, too, and always trying to improve and stream-line my regime.
 

drob31

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@drob31 Thank you and I just wanted to be sure. I always hope that something in one of my threads will help someone else down the line, too.

Your protocol is interesting and I was wondering how you came up with it all (or just a lot of trial and error?) Do you work with a naturopath? Also, do you have EBV or other viruses as the trigger of your illness? I apologize if you already explained all this!

I was not able to tolerate the methylation supplements or carnitine in the past. I tried D-Ribose for a year and tolerated it fine but never noticed any benefit.

What do you notice from the PQQ? I have a sample vial of bullet proof version of PQQ (sent to me by a very nice friend!) but have not tried it yet as I am trying several other new things and need to try one at a time.

The newest stuff I have added is the magnesium by nebulizer, selenium, and calcium. But I am always gathering data of new stuff that I can try. I take a lot of supplements per day, too, and always trying to improve and stream-line my regime.
I started d-ribose a week ago, so I'm not sure if it's having an effect yet. My doc thinks my increase in energy is coming from mitochondria firing back up again, and maybe they just needed time to get their act together. Personally, I thought it was the magnesium or nettle root, but maybe the magnesium IS helping the mitochondria. Have you tried going higher with magnesium? I know people should be careful, but my doc was saying how it's very hard to raise your magnesium with oral supplementation, which is why he's not afraid that I increased the dose.

I have no idea what's wrong with me. The only thing I can prove is HPA-axis dysfunction. Why it persists, I have no idea. It seems like it's "adrenal fatigue," but I know that doesn't exist. I haven't been tested for EBV although I know 90% of adults test positive, at least for an inactive infection.

I haven't started the PQQ yet, but it's on the way. I'm reading some really interesting things about it. My mitochondria supplements are more of the "kitchen sink" approach. It's basically treating everything empiracally, throw things against the wall and see if they stick.

Nebulized magnesium is really interesting. How do you dose that? I also have transdermal magnesium but I don't think it can absorb properly.
 

drob31

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One thing I did not consider was that ACE inhibitors can have a vasodilating effect.

Why does this matter?

Because my hypothesis about it being related to histamines was related to vasodilatory edema. So if ace inhibitors cause sodium loss and increase potassium, then somehow they can also paradoxically cause water retention through vasodilation. Although I haven't had it happen yet. More investigating to be done.
 

drob31

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Ok, so just to update this thread. I was trying to taper off t3, and it didn't work out to well. On my 3rd day of "tapering" I starting feel really hypo, which to me is my brain feels like it's turning off. So I decided to jump start myself with cytomel again. This helped but I still feel way off keel.

I decided to try 4x doses of cytomel today instead of slow release t3, and I'm still a little off. I'm pretty sure I messed with my thyroid and adrenal balance.
 

drob31

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I crashed yesterday. This was the day after I switched to cytomel, I tried to switch back to slow release t3.

At some point my cortisol went way up, and I began having nasea, fatigue, and expedited trips to the bathroom. Pseudo flu-like symptoms. This way yesterday, and today I'm not really better. I still have the nasea. Maybe I just caught something?
 

drob31

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I feel a little better today now that I'm off the slow release T3. I think I'm finally figuring out how to modulate my cortisol levels. By using a powdered magnesium formula and glycine, as well as seriphos, I can really lower it quite a bit.
 

drob31

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I'm off all thyroid hormones now. I have more steady energy, although something is still "missing."

I'm pretty sure thyroid hormones, t3/SRT3, were increasing cortisol levels even more.
 
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Water Retention Support (if caused by aldosterone/renin-angiostenin system dysfunction)

Linisopril: (ace inhibitor): currently experimenting with 10 mg.
Hey @drob31 ! I was reading your thread with interest. Curious if your hypothesis about Linisopril proved true? Did you get rid of any of the water retention?
 

drob31

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Hey @drob31 ! I was reading your thread with interest. Curious if your hypothesis about Linisopril proved true? Did you get rid of any of the water retention?

My hypothesis was predicated on the fact that aldosterone was causing water retention. I did a 24 hour urine aldosertone test and the levels were normal, not even high normal. However there is another possibility. Cortisol can masquerade as aldosertone in the kidneys and binds to aldosterone receptors, activating them. So high cortisol could theoretically cause this interstitial edema.

Another possiblity is that I'm having some kidney issues. My eGFR is in normal range, but my creatinine urine levels are high, creatine kinase is high, and there is trace levels of protein in urine. If I have proteinuria, then ironically an ACE inhibitor would be called for to battle the edema. So in a round about way I would have been correct.
 
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@drob31
I'd put my bets on stinging nettle root. As you know, nettle can increase levels of free testosterone (ref: here) by binding to SHBG, and low levels of testosterone are known to cause fatigue.

The herb Tribulus terrestris can also increase testosterone levels (or at least studies show that it does in rats). Body builders use this herb for this purpose. Tribulus terrestris increases the overall production of testosterone, whereas nettle increases free testosterone.


I found selenium to significantly reduce fatigue and brain fog, but the effects of selenium only appear after around 10 days of supplementation at 400 mcg daily (on an empty stomach). See this thread:

High Dose Selenium Significantly Improves My Fatigue and Brain Fog

The people on that thread who seem to benefit from selenium are those diagnosed with enterovirus-associated ME/CFS (which makes sense, because selenium is antiviral for enteroviruses).
Some aromatase inhibitor shows they lower the TRP/KN ratio. (letrozole)
https://www.ncbi.nlm.nih.gov/pubmed/30382056

Some guy got full remission through aromatase inhibitor. (anastrozole)
https://www.prohealth.com/library/how-i-recovered-from-me-cfs-33753#0

Do you think it is possible that stinging nettle root make you feel good because it is a natural aromatase inhibitor?
Have u ever tried grape seed extract? thanks in advance.