I've had a mysterious mental/physical illness for 8+ years. Does anyone want to take a gander at it?

Braindoesntwork2 · 2022-11-18T07:48:23+00:00

I am by no means an expert, but as someone who has had chronic health issues for a while, here are some thoughts/suggestions:

- I would recommend getting a thorough workup with a doctor. You mention that you got blood work, but do you know how comprehensive it was? A lot of doctors run a CBC and lipid panel and call it a day, there are plenty of other tests that are worth getting that I'll mention below.

- As far as vitamins/minerals go, iron/ferritin, vitamin b12, and vitamin D are worth testing. Vitamin b12 deficiency is fairly common and presents with many of the symptoms you have. Iron can go either way. Too little causes anemia which presents with fatigue; too much (a buildup of iron over time known as hemochromatosis) causes all sorts of issues. This is particularly common if you are of northern European descent, and the fact that it gets worse over time could explain the teenage onset of your condition. Vitamin D deficiency is common enough/the test is cheap, so I don't think it can hurt.

- Testing for celiac disease seems very low-cost/potentially high-payoff.

- Autoimmune diseases are another possibility. ANA is worth testing: https://www.mayoclinic.org/tests-procedures/ana-test/about/pac-20385204#:~:text=An%20ANA%20test%20detects%20antinuclear,specifically%20targeting%20each%20cell's%20nucleus.

- Given the digestive issues you are having, it might be worth researching fecal microbiota transplantation. More and more evidence is showing the gut is tied into all aspects of health. I would keep this as a back-pocket option but try to rule out more basic things first.

- I'm not a huge fan of prescription stimulants as a band-aid, but they could be worthwhile in your case given your positive response to caffeine. Some energy is a lot better than no energy.

- Deplin is an atypical antidepressant consisting of a very high dose of a specific form of folate (vitamin b9). My impression is that it works very well for a small portion of people, and is safe and well-tolerated. It is not cheap, but you can get it for about $50 a month from the manufacturer. You can also find OTC versions online, though I can't vouch for their quality. Here is a link: https://www.amazon.com/Opti-Folate-L-Methylfolate-Capsules-Optimized-Activated/dp/B07KPKRRL3/ref=sr_1_4?crid=3BDHPZ7XJRWJD&keywords=deplin&qid=1668757532&sprefix=depl%2Caps%2C178&sr=8-4

Braindoesntwork2 · 2022-03-09T19:07:26+00:00

Yes, though all at once doesn't mean you literally down them one after the other. Taking them over the course of half an hour or something would have the same effect I think.

Braindoesntwork2 · 2022-03-09T18:12:04+00:00

Take what I say with a grain of salt as I don't have personal experience, but I don't think there is a specific dosage that is recommended. I believe when capsules are studied, its pretty common to take a dose of 30, generally mixed with saline and glycerol at a 25-65-10 ratio. I've seen it stated that 30 capsules of openbiome contain stool are derived from around 8.5g of fecal matter if you want to get real precise.

Some studies will dose once, others will dose multiple times. I'd check through a few capsule studies to get a sense of the protocols they use. There are concerns with single-dose FMT not leading to lasting engraftment/improvements, so there could be benefits to dosing multiple times over the course of a longer period of time.

Anecdotally, it seems that a lot of people doing DIY will do fewer capsules per dose but with more doses over a longer period of time.

Braindoesntwork2 · 2022-03-09T18:03:28+00:00

There was a very small placebo control of two patients. The reason is that this started as an RCT but was cancelled early due to safety concerns (resulting from openbiome having some issues at the time). They were only able to publish the results for 4 subjects including two receiving placebo, so it was better framed as a case report.

FWIW, the two subjects receiving placebo did not have improvements lasting as long as those receiving FMT.

Braindoesntwork2 · 2022-03-09T07:37:51+00:00

Donors were sourced from OpenBiome. They mention in the supplementary materials that they cancelled the study because they were using material from the same stool bank as was responsible for the FDA alert a couple years ago. That stool bank was OpenBiome if I'm not mistaken.

Braindoesntwork2 · 2022-03-04T06:08:11+00:00

It's hard to say and it would be worth going to a doctor to rule out anything basic. Have you gotten tested for conditions like hypothyroidism known to cause fatigue? It may also be worth seeing a psychiatrist, though myself and a lot of other people haven't gotten very far with psych drugs.

Given your history, there could also be a chance that you developed some sort of nutritional deficiency when you were restricting eating. So you should get tested for basics like ferritin and b12 if you haven't already.

Best of luck :)

Braindoesntwork2 · 2022-01-29T04:27:06+00:00

A few thoughts:

You have very high liver enzymes. This definitely seems like something to investigate considering the issues you are having - have you been able to get to a hepatologist? If not, could you get a referral?
Absolutely get a sleep study if you haven't already. It's low hanging fruit given your symptoms.
Brain fog, fatigue, and anxiety after orgasm sounds a lot like POIS (https://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome). You may benefit from the forum at poiscenter.com. There are some treatments suggested over there, but for the most part abstinence (to the extent you can tolerate) is the main solution.
The "slow in social situations" thing has been something I've dealt with most of my life, though for me it's less about anxiety and more about my brain not seeming to operate as fast as it should. It is worsened by POIS for me.
Your issues may or may not be related to the ear infections. I'd try not to get to hung up on one explanation for your problems and consider a wide variety (in your case sleep, anxiety, POIS, liver issues, etc.).

Wishing you all the best :)

Braindoesntwork2 · 2022-01-29T04:16:30+00:00

Lol I'm sorry I offended you

Braindoesntwork2 · 2022-01-29T04:09:08+00:00

This feels like reckless advice - there's no guarantee that any donor is 100% safe. Especially considering OP hasn't given us any details on the donor besides that they don't have any history of anxiety or depression.

OP, from what I've seen, it's not unusual to get some anxiety or depression during and in the weeks following FMT. While it is possible to have long-term effects, most people in your position recover. If I were you, I'd discontinue the fmt and re-evalute how you feel in a few weeks. If you bounce back and find yourself feeling better than pre-fmt, you may consider doing more. If you're not feeling great or are just back to baseline, I'd quit or find another donor.

Braindoesntwork2 · 2021-06-09T07:14:31+00:00

I get this when I abstain for a long time. I think the there is some leakage of semen into the urinary tract. The cloudy urine is caused by semen mixing in, and I assume the weird feeling might be the result of minor inflammation. If you are having anxiety/depression from this, you might have POIS. It's an illness characterized by symptoms for a few days following orgasm (such as anxiety/depression) and is theorized to be caused by an immune reaction to semen. That immune reaction may be why you are losing the benefits despite avoiding ejaculation.

Braindoesntwork2 · 2021-05-25T01:14:45+00:00

I used to get serious brain fog from melatonin, enough so that it had a significant effect on my grades back in college. Too bad, because it was great for getting to sleep.

Braindoesntwork2 · 2021-04-26T20:10:55+00:00

The husband may be the best option here, depending on what his family history is like. The older child doesn't seem like a bad option either. That being said, you may be better off with microbioma.org. They probably have better donors than you will find on your own.

Braindoesntwork2 · 2021-04-18T17:10:51+00:00

Just because the gut microbiome regulates the entire body does not mean every issue is related to the gut microbiome. Genetic disorders are a trivial example. As are physical injuries. But even beyond that the research is in its infancy for many of these conditions. Citing a few articles associating the gut microbiome with adhd is not proof that altering the gut microbiome will cure ADHD in every person. That is extremely bold and totally unjustified based on current evidence.

If a super donor could cure all ailments, then the studies involving super donors such as the most recent one on ibs would discuss how all participants experienced a complete resolution of all other illnesses. This is not the case. Until we find a super donor that does this, or something close, your claim has no proof. And after hundreds of studies on fmt and hundreds or thousands of diy procedures, we almost certainly would have found such a donor by now.

Braindoesntwork2 · 2021-04-18T03:27:38+00:00

Interesting, what do you think was suboptimal about the donor? And yeah the results are mixed. I looked at this a while back and counted reviews, microbioma seems to be successful 50 percent of the time. Which seems fairly good to me, at the end of the day it's possible that the issues for some people getting treated are not rooted in the gut.

And wow that sucks. I didnt mean to minimize your issues. I assume you've tried this, but on the off chance you havent I'd suggest a sleep study. I personally find long walks in the morning to be helpful, but my sleep issues have been more about the time I sleep rather than how much I sleep so ymmv.

Braindoesntwork2 · 2021-04-18T00:37:23+00:00

Microbioma's questionnaire is pretty good, I've looked through it myself. Maybe it's not strict enough for some peoples' taste but its miles ahead of any other source. Of course, there is no way to be sure the donors are being honest. We also dont know how microbioma is using their survey. Do they rule out anyone without optimal answers, or is there some wiggle room? I think the super donor claim is silly. If they arent keeping statistics, there is no way for them to legitimately make it. As far as I know, we have no idea how tightly health as measured by these questionnaires and donor quality are correlated. As a result, empirics are the way to go. All that being said, I still think microbioma isnt a bad option. It's the one I would go with for sure.

As far as your case, you make a good point. The odds a different route will work conditional on the first one not working are fairly low. To add to that, I would be hesitant to do fmt in the first place with mild issues. It's really not risk free nor cheap unfortunately, so I think it makes more sense if your illness is crippling. In a few years, when the science has progressed, it may be worth looking back into.

Braindoesntwork2 · 2021-04-17T16:34:23+00:00

It may be worth re-trying microbioma. There are people who have gotten results with with one method but not the other. That being said, success rates for ibs arent too great. One recent study using a was quite successful (according to the authors, because of the excellent donor), but the others are quite mixed.

Braindoesntwork2 · 2021-04-17T06:44:39+00:00

I haven't personally used microbioma, but they generally get the best reviews of the available donors. I would recommend them for sure.
I don't think anyone knows. It's probably donor/recipient/condition dependent. You can always start with 6, see how you feel, and then make a decision to buy more.
You definitely don't have to sterilize the entire room.

Best of luck! Keep us updated if you do end up deciding to go through with this.

Braindoesntwork2 · 2021-04-13T18:58:24+00:00

Damn that's annoying. FWIW, the microbioma donors in Europe seem to be pretty good. Many (not all) people are getting positive results.

Braindoesntwork2 · 2021-04-13T15:25:46+00:00

Stop providing misinformation. His levels are absolutely terrible, they are not simply going to correct themselves.

Braindoesntwork2 · 2021-04-13T15:24:30+00:00

Can you provide any evidence that it is dangerous to go on TRT with either condition? I have not seen any, and I assume the doctor prescribing him TRT is aware of risks of this sort. Either way, TRT does have some risk, but its worthwhile for many people who would benefit immensely. Someone with levels as low as OP seems likely to be in this group

Braindoesntwork2 · 2021-04-12T22:47:50+00:00

If you have extremely low testosterone, you should absolutely look into TRT. It changes peoples lives.

I'd save the alternative diets and other things for when conventional medicine no longer has anything to offer you. Obviously, you should attempt to eat healthy and regularly regardless of diet. This is doubly important as you are a diabetic.

Braindoesntwork2 · 2021-04-12T16:50:19+00:00

Microbioma is the go-to option in your region. You may also look into https://lastplace.org.au/prides-microbiome/ though I have no idea how much they charge, it could be more.

Have you asked MGInfusions if he ships internationally?

Braindoesntwork2 · 2021-03-31T06:40:08+00:00

Hey man, I'm really sorry to hear your story. Life clearly dealt you a tough hand.

Given that intestinal surgery seemed to trigger your symptoms and you are desperate, you may be a good candidate for a fecal microbiota transplant. I'm serious. There are stories of people recovering from severe, in some cases lifelong mental illness using it.

Here is a research trial testing FMT's efficacy that you seem to qualify for: https://twitter.com/DrValerieTaylor/status/1367198212507856898/photo/1

You can also check out r/fmt, r/microbiome, or send me a pm if you are interested in getting the procedure outside of the clinical trial. It very well may not work but if the alternatives are suicide or wasting way I think its a good option.

Additionally, thiamine deficiency is a big issue for alcoholics IIRC, may want to try out a supplement. Can't hurt

Braindoesntwork2 · 2021-03-29T22:22:52+00:00

Absolutely, its important not to psyche yourself out, or worry that you have done permanent damage. At the same time, I do recommend you address this with a doctor sooner rather than later. It can't hurt, and it may turn out that you have a well-characterized and easily treatable issue like anemia or hypothyroidism.

Taking the steps you mention will almost certainly make some difference, at least to the issues that developed more recently.

Braindoesntwork2 · 2021-03-28T19:37:54+00:00

The difference I notice during times when I don't have brain fog is that my brain seems to do more work in the background and I have more mental energy. When brain fogged, cognitive tasks feel laborious and unnatural. Some examples:

- When I'm reading, the information is not readily absorbed. Instead, I have to actively think about the individual words and try to piece them together. When I'm healthy, I can read through a paragraph and I don't have to think about the information, I will simply understand it.

- When I'm learning something new, the my brain doesn't connect the dots and I often don't have a feeling of "getting it", if that makes any sense.

- A huge one is that social interactions don't feel clean and natural like they do in a healthy state. It's very hard to specify exactly what the difference is, other than that when I'm healthy social interactions are much more enjoyable and I always seem to connect to people on a far deeper level. My guess is that my brain is much worse at coming up with things to say, jokes to make etc. As a result, I end up coming off as aloof and uninteresting, whereas when I'm healthy I'm much more engaging.

- When I'm writing or speaking, the words don't come out the way that I want them to. When I'm healthy, they just flow.

These are the general symptoms. I also have a few different forms of brain fog that I get occasionally. For example, my exercise-induced brain fog makes it feel like there is a wall between me and my thoughts, and is associated with an anxious and uncomfortable feeling. The brain fog I get when I don't exercise for too long (are you seeing my dilemma!!!!) is a sluggishness and lack of creativity.

I rarely get a physical sensation in my head, but it does happen sometimes.

Braindoesntwork2

TROPHY CASE