My success story. Tons of biotin.

[BiotinJunkie]

Taking that much of one nutrient doesn't make sense. Eventually, one must run out of cofactors.

Taking that much of one nutrient probably doesn't make sense in your case, but mine is different.

Just to mention. Biotin is a cofactor itself in the reaction where I am very deficient.
If I will stop taking biotin, I will hit metabolic dementia very fast.

 

[Learner1]

What lab work do you have showing the is deficiency?

What pathways are you needing the help with? What are the co factors required?

I agree that we are all different with different needs, And I take some very high doses of certain nutrients, but when I've found such a need, there a usually some good reason for why my body is exhibiting such a need.

 

[BiotinJunkie]

Lab work failed to find it, but my subjective feeling is very strong and I have done a long path of experimentation and
thinking to come here. It feels like I have carboxylase deficiency in the brain.

 

[Learner1]

So, you have a rare genetic condition then?

https://rarediseases.org/rare-diseases/pyruvate-carboxylase-deficiency/

 

[BiotinJunkie]

It feels like that. But full exome sequencing failed to find it. I can say I have some form of polycystic kidney disease (first discovered at age 18, far before strong metabolic symptoms). And a rare hemizygote mutation in the MECP2 gene (as rare as 0.01% of total population freq and 0.01% of asian freq, though I am european) which seems most suspicious in the excel table coming from the genetic lab (ClinVar significance: 0 - Uncertain significance).

 

[Learner1]

Well then, perhaps you could start with that as a basis for your communication with everyone rather than trying to convince everyone that massive biotin supplementation is a cure-all for all of us. Too much of it might be dangerous for some people.

Best wishes in solving your unique problem.

 

[BiotinJunkie]

Learner1, I was not trying to convince everyone that massive biotin supplementation is a cure-all for all of you; the first post in my topic contains the text: "I believe I have some very rare and unknown metabolic genetic disease.". I have expressed it clearly from the beginning.

Reminder: just one biotin capsule (10 mg) taken sublingually is enough to test whether it works for you like for me.

 

[Learner1]

This is a forum for ME/CFS patients.

The title of this thread is "My success story: Tons of biotin."

This leads ME/CFS patients to consider your success story in terms of ME/CFS, which is a problem.

This is an interesting discussion of the widely varying need for biotin. Note there is no mention of ME/CFS, though there are some interesting observations.

http://juvenon.com/biotin-a-taste-of-what-supplements-can-do-911/

And, from satisfied-mind.com:

Who is likely to be biotin deficient?

Certain rare inborn diseases can leave people with depletion of biotin due to the inability to metabolize the vitamin normally. A dietary deficiency of biotin, however, is quite uncommon, even in those consuming a diet low in this B vitamin.

Nonetheless, if someone eats large quantities of raw egg whites, a biotin deficiency can develop, because a protein in the raw egg white inhibits the absorption of biotin. Cooked eggs do not present this problem. Long-term antibiotic use can interfere with biotin production in the intestine and increase the risk of deficiency symptoms, such as dermatitis, depression, hair loss, anemia, and nausea.

Long-term use of anti-seizure medications may also lead to biotin deficiency. Alcoholics, people with inflammatory bowel disease, and those with diseases of the stomach have been reported to show evidence of poor biotin status; however, the usefulness of biotin supplements for these individuals remains unclear. In animals, biotin deficiency can cause birth defects.

 

[Eastman]

Biotin, through pyruvate carboxylase, converts pyruvate to oxaloacetate, a citric acid cycle intermediate. That might potentially allow it to bypass the PDH block supposedly found in ME/CFS. In that sense, this thread may be relevant to members. It is just unfortunate that the PC reaction requires ATP.

In any case, I find oxaloacetate interesting. It appears to have many benefits according to Joseph Cohen. The benefits to the brain in particular are probably what is helping the OP.

1) Oxaloacetate Can Reverse and Prevent Brain Damage Caused By Exposure To Pesticides
2) Oxaloacetate Can Help Protect The Brain After a Traumatic Brain Injury
3) Oxaloacetate Can Help Reduce Neurodegenerative Effects Caused by Strokes
4) Oxaloacetate Can Help Prevent Neurodegenerative Diseases

I, for one, certainly look forward to more updates from BiotinJunkie.

 

[Learner1]

Oxaloacetate does sound interesting. From one of the studies linked to by Joseph Cohen:

"Propyl gallate, 1,8-naphthalenediol, 2,3-naphthalenediol, ascorbic acid, glutathione, and oxaloacetate protected CS from AAPH-mediated inactivation."

So, does one need all of these substances? I know that vitamin C and glutathione can both be helpful, but do we need the others, too?

 

[Asklipia]

I, for one, certainly look forward to more updates from BiotinJunkie.

So do I.
Thank you @BiotinJunkie.

 

[BiotinJunkie]

Looks interesting. For those searching for oxaloacetate, this may be helpful to know another names: 3-carboxy-3-oxopropanoic acid and oxaloacetic acid (I just read).

 

[Eastman]

Oxaloacetate does sound interesting. From one of the studies linked to by Joseph Cohen:

"Propyl gallate, 1,8-naphthalenediol, 2,3-naphthalenediol, ascorbic acid, glutathione, and oxaloacetate protected CS from AAPH-mediated inactivation."

So, does one need all of these substances? I know that vitamin C and glutathione can both be helpful, but do we need the others, too?

Apparently, each is protective. If you haven't seen the full report, the following was taken from the antioxidant results:

...we found that the IC50 values for PG, 1,8-ND, 2,3-ND, ASC, GSH, and OAA were 9, 14, 34, 37, 150, and 160 μM, respectively. PG and 1,8-ND offered the best protection...

 

[Learner1]

Right. But I haven't seen any supplements available for the first 3, have you?

 

[Eastman]

Nope. I've never seen them used as supplements.

 

[Learner1]

https://www.ewg.org/skindeep/ingredient/705311/PROPYL_GALLATE/#.WtYGCZ9lDZ8

2,3-Dihydroxynaphthalene is used in making dyes, pigments, fluorescent whiteners, tanning agents, antioxidants, and antiseptics.

1,8 napthalendiol is used in diazo dye making and proteomics research.

 

[BiotinJunkie]

Before sleep, swallow 1 tablet of "Source Naturals, Coenzymated B-6, 300 mg". Not sure how important it is now. ( https://ru.iherb.com/pr/Source-Naturals-Coenzymated-B-6-300-mg-30-Tablets/12216 ).

Now I can say for sure that this B6 is also important for me.

Yesterday I did forget to take one before sleep and noticed how bad my
sleeping became after 5 hours (there was a light version of the bad feelings in the brain), and a fresh capsule of biotin was unable to solve it fast. Then I did take a sublingual version of "Source Naturals, Coenzymated B-6" ( https://iherb.com/pr/Source-Naturals-Coenzymated-B-6-25-mg-Sublingual-120-Tablets/1038 ) under the tongue, hoping for fast effect, dissolved it, and then biotin under the tongue worked as good as described.

 

[Learner1]

Looks interesting. For those searching for oxaloacetate, this may be helpful to know another names: 3-carboxy-3-oxopropanoic acid and oxaloacetic acid (I just read).

Just found this... apparently oxaloacetate inhibits mitochondria complex II:

https://www.sciencedirect.com/science/article/pii/S0005272816305606

 

[kallogann]

i really need to test biotin cause your symptoms from first post are awfully familiar to me. Emptiness/ pressure /fog /bad sleep and most importantly the way you need to constantly eat to keep energy level is exactly what am experiencing since 18 months now. I need to eat every 2-3 hours to feel kind of normal. I am always hungry and have bad anxiety/brain fog very fast when not eating. I wasn't like that before, it just happened in one night. Luckily i gained only 5 kilos for now but i need to fight my hunger constantly...

 

[BiotinJunkie]

By the way, anxiety was also one my of my symptoms (during and years before strong metabolic symptoms). Now I feel anxiety (and have sweaty hands) far not as often and far not as strong as before. I noticed how social interaction became easier for me.