My Recovery and Neuro-Biological Disorder

Therapeutic Efforts
#23

That’s a valid question. Primarily, I’m now deeply mistrustful of the FDA and US healthcare system and would prefer not to be dependent on any form of Rx. Secondly and happily, most substances that are non-specific GABA(a) receptor up-regulators are either supplements or foreign drugs that are not marketed as Rx’s in the US (such as fasoracetam). The only line of drugs that might really have aided in improvement are certain epilepsy drugs and gabapentin. I tried gabapentin to OK effect but it seems that its catalysis of the GAD 65/67 enzyme along with its upregulatory effects on δ subunit-containing GABAA receptors is transient and dose-dependent.

As for the doctor treatments, one of my main problems with the US healthcare system is the disjoint between providers in different systems so a uniform plan was really impossible. I travelled to some of the best health systems in the US and got vastly different levels of care/attention and guidance. My two main neurologists at home, one of home codified my diagnosis w/ chronic and pathological ALLO tolerance are entirely on-board w/ my treatment route. Frankly–and this is going to sound supercilious–I think these doctors are intimidated by me and think that I know far more about it than they do. So they tended to acquiesce to whatever test, procedure, or drug I wanted. Unfortunately for us, no doctor is going to be a panacea for our problems. We need to be our own advocates and take our futures into our own hands.

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#24

Every day. I’m fairly terrified of ever feeling like I did at the zenith of my problems so I’m just going to do it prophylactically for years.

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#25

Yes, I’m still taking Bacopa. I would do an extensive review of its properties and see if it would be beneficial in your case: https://examine.com/supplements/bacopa-monnieri/

My presentiment is that, in part, many people are suffering from the same pathological ALLO tolerance as me. And while bacopa is a non-specific GABA(a) receptor upregulator and is not necessarily a cure-all, many people will find benefit from its use.

#26

Hello, thanks for the extremely interesting post, and best wishes for your recovery. I wanted to ask you, in your case it was possible to dose the gaba receptors from the CSF? How have they been analyzed? by flaking cells or is there a soluble form of the receptor?

#27

I’ve seen this idea floated a few times. I’m not necessarily attempting to proselytize about Bacopa, but all controlled studies have not reported any diminution in libido nor testosterone concentration from its use. From the Examine page:

“A study on male mice with 250mg/kg bodyweight Bacopa noted that it was able to transiently suppress fertility when it was being taken over 28 and 56 days (two times points of testing), sperm parameters appeared to be unanimously depressed.[85] When measured in the cauda epididymidis, reductions were seen in sperm motility (56% of control), spermatozoa count (54% of control), and viability (58% of control); the number of histologically abnormal spermatozoa increased significantly by 2.6 fold.[85] Interestingly, Libido was unaffected and testosterone was not adversely affected either, and although all effects were seen at the first measurement period at 28 days, all parameters normalized 56 days after treatment (only tested period).[85] These effects on sperm are similar to what is seen with Curcuma Longa (source of Curcumin) at 600mg/kg, suggesting the two may be complementary in being anti-fertility agents.”

The upshot is: Possible anti-fertility effects via hindering sperm function and count, but does not influence testosterone or libido.

I would be skeptical of any anecdotal reports are those are subject to such protean individual differences, but this substance may or may not come in useful for you. In my case, my neurological symptoms were so bad that I would have freely given up any operational penis in exchange for an operable mind.

#28

Good question, and I’m not exactly sure but I can get you the answer. I believe they actually looked at mRNA transcription factor expression for δ subunit-containing GABAA/GABAC-rho receptors, but I’ll look into it for you.

#29

Hello-- you’re asking quite a bit here. To begin, I fully acknowledge that many of the supplement effects are speculative, and I’m just including my rough notes for reference. However, I primarily use examine.com to review all drugs/substances, and they have extensive resources regarding all known studies in vivo/vitro and in humans for the ones I included.

I don’t mean to be snarky, but I was able to determine that Curcumin aided as an analgesic because my brain stopped hurting when I used it–more so than with common NSAIDS or acetaminophen. And yes I experienced clinically appreciable neuro-inflammation as my CSF reflection sharply elevated levels for all inflammatory markers such as TNF-alpha and various other cytokines.

#31

Thank you, very kind of you, and above all it is very important that you came back to tell us about your experience. It is very important, because if I understood correctly, there would be a marker (in this case the alteration of the receptor) that makes the difference because it is an objective proof of the presence of some form of alteration.
Even if it is not common to all or is only responsible for part of the symptoms, it is still essential to get out of “it’s all in your head” attitude towards us.

#32

You’re absolutely right. This test was the linchpin in providing credible evidence of a pathological alteration. When I could provide the nexus between this exact type of α4βδ subunit composed down regulation in ALLO tolerance cases as well as in post finasteride syndrome animal models, it effectively proved this was my problem.

#33

Please note, OP has no sexual symptoms. Only mental guys.

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#34

First, thank you so much for not disappearing. I am sure it means a lot to me many of us here. I completely understand where you are coming from in terms of how some people communicate when they disagree and also about the negativity that you can encounter, and I also take breaks from the forum for that reason. But one of the biggest frustrations for me is how many people report recoveries and then abandon the support network they have relied on and contributed to for years. I am not saying you should be logged on all day, but if you can drop in from time to time, I am sure there will continue to be questions about what you have reported, just like there are many unanswered questions sitting on other recovery threads from over the years.

Regarding Gaba supplementation, you say it is likely of limited benefit, but would it be detrimental in the way you are saying taurine could be? Because I have been using it and seeing some benefits, so I would at least want to finish off the bottle I have. Having initially seen major benefits over the first couple of days, they wore off somewhat, so I am now taking it every other, or every three days (I haven´t settled on my supplementation regime yet). Though if I am taking any sort of risks with that, I would like to take that into consideration.

I have also seen major benefits from fasting, though I tend to do 72 hour fasts once per month (having built it up over time from an initial 24 hours).

Based on what you know about Bacopa, should adverse effects reverse upon discontinuation? I realise that you are not an authority on it, and also that I and many others got here believing the reversibility of potential side effects, but I am still keen to know what your research of it tells you.

Also, in what form did you take the curcumin? Where I am, it is freely available in root form that I could add to my cooking, but I don´t know if an extract would be preferable.

Could you post the doses, forms (extract, tablet, whatever) and regime you used for those supps you list as “essential”? Would be very much appreciated.

#35

That would be great, because reading all of this is one thing, seeing it is another. It would be great to have these results documented on here.

I’ve said it elsewhere, it’s going to be like the boy who cried wolf if anyone (even on a patient level) really does start to figure some things out.
Its funny though even after all the testing and money spent, it still falls back on crap shooting supplements (maybe with a little better sense of direction at least in this case).

btw do you recommend Mayo? is that where you got most of these results?
I’m not far from Rochester, but i’ve been reluctant to spend the time and money.

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#36

I don’t think GABA is detrimental to you, no, as it likely does not cross the BBB in high enough concentrations and is only a partial agonist of the receptors that mediation GABA inhibitory tone. It may be bringing you some positive peripheral effects, and at the very least the placebo effect is one of the most efficacious “pills” in medicine.

Per this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3306740/, Bacopa normalized all down regulated GABA(a) receptor densities over the course of 12 weeks (at least in male epileptic rats) even upon discontinuation.

As for Curcumin, you’ll want to take 1500mg/day over 3 separate 500 mg doses of Turmeric standardized to 95% Curcuminoids. You’ll also want to take 20 mg of bioperine (a black pepper extract) with each 500 mg dose to aid in absorption. I buy most of my supplements/drugs from nootropic depot as they 3rd party test standardized extract by HPLC and their powders tend to be cheap and reliable. The downside is you need your own mg scale for these supplements.

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#37

I don’t think Mayo brought me any hyper-specialized knowledge or care (the doctor did mentioned my thalamicocortical related issues but said there was nothing he could do and just prescribed me a TCA), but it’s a reasonable avenue to pursue. I actually went to Mayo in Phoenix as the neurology department there is purportedly better.

I also wouldn’t characterize what I’ve said as a crap-shoot; I’ve seen appreciable and drastic improvements in my condition because of the strategy I’ve pursued, and this is bolstered by both my test results and the relevant published literature. In a way it’s been a deus ex machina.

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#38

What was the dose and frequency for the bacopa?

#39

Thank you for the info. I just ordered in some Bacopa, let´s see how it goes. I will probably start adding some curcumin root into food, just to see if I think I am getting anything out of it, but may also add the supplementation. Trying not to throw too much at myself at any one time, so I can judge how beneficial things are.

#40

I take Bacopa according to the Examine.com dosage recommendations:

The standard dose for Bacopa monnieri is 300mg, assuming that the total bacoside content (the active compound) is 55% of the extract, by weight.

Bacopa monnieri can also be supplemented in a leaf or powder form. To achieve the ideal 10-20% of bacoside content requires a dose of 750-1,500mg of the leaf or powder.

Historically, Bacopa monnieri was consumed with ghee, a clarified butter that originated in India. Since Bacopa monnieri is fat soluble and requires a lipoid transporter to be absorbed, it should be supplemented alongside a meal.

I take two doses in this amount per day.

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#41

What was your bloodwork like post pfs? Is there an allo blood test? My levels are all whacky. High prolactin high pregnenolone high cortisol

#42

I am happy for your recover, but…
Although it is clear you have an hipotesys, and you explaneid quite well your process, i was fibally thinking you found a new way to beat this. However…we are using the same weapons (fasting, supplements…).
Did you repeat the same tests after your recovery, so it is clear something was wring and now is fixed?
Thanks.

#43

Are you able to share which brands you take ofbacopa and curcumin? time of day. That would be pleaseantly helpful.
Have you experienced any side effects from either that don’t outweigh the benefits so you continue to take.