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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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then used that information to do a methylation protocol (which did not do anything for either of us)
Yeah it's this methylation stuff that's got me interested in 23andme. The reason I ask is I want to find out if it helped anyone (for anything really, because I don't fit regular ME criteria, I just have GI problems and lots of neurological symptoms like dizziness, anxiety, brain fog, etc) before I fork out $300 to get it done.
Did you find out you were under or over methylators? and what was the treatment? I mean couldn't I just take some SAMe and see my reaction and decide which I may be?
start out with the various vitamins and supplements (in the smallest doses possible) and see how you do
I've been taking Natural Factor's High Potency B for a couple of months once a day.
Has 50 mg of B1, B2, B3, B6, 50 mcg B12 and 1 mg of Folate. I'm no better no worse.
It helped me understand why I react to certain supplements etc, including coffee;
I'm not sure methylation is my problem to tell you the truth. My relapse has happened lately because of sleep disruption caused by my 2 year old, but I'm trying to look into the root cause, because my problems started 20 yrs ago with gut issues that accompanied neuropsychiatric/neurological problems. Intestinal permeability/inflammation and possible mitochondrial damage due to resulting cytokines.
Wow, your like the top expert i've ever met in this.It sounds like it would make sense to focus on improving your quality of sleep (if possible with a 2 year old!) and healing your GI system and supporting gut flora. I'm copying+pasting something I posted on another thread, and I would highly suggest taking some time to read through some of the many helpful probiotics threads on this site. Also, check out the article that I linked below from Scientific American; it discusses the brain/gut connection and seems especially relevant to the issues you mentioned.
Treating the gut biome may not solve all your health issues, but it may have a positive effect on some areas that would surprise you.
My husband had a pretty long period of time where his IBS-D was out of control. It was so bad that almost everything he ate triggered it. He couldn't leave the house for months, it was pretty serious. In the beginning, he was obviously reacting to histamine containing and producing foods/drinks, so we thought it was a histamine problem. When he took Histame pills with a histamine food, he could tolerate it. But at some point he started reacting to things that had no histamine connection, even things like white rice. (Yogurt and Kombucha were some of the worst triggers)
He tried an SIBO protocol, took the antibiotics, and he he got worse. Eventually, over time, it kind of went into remission, but he continued to have a super sensitive GI system that could spontaneously erupt with a D attack with the slightest provocation, so he always had to be super careful and on alert for anything that could bother him, and had to be pretty restrictive with food. A little while later, he developed these awful "panic" attacks, he'd wake up in the middle of the night with severe adrenaline bursts, at times so bad that he couldn't breath and we ended up in the emergency room. Doctors couldn't figure it all, he had a million tests done, everything showed him to be the pinnacle of good health (ha!).
Around this time, he started a serious supplementation with Mutaflor (E.Coli Nissile 1917) which is the absolute most interesting probiotic I have ever heard of, and I highly recommend people to research it, because it's fascinating. After starting Mutaflor, his mystery adrenaline attacks completely stopped. His gut also transformed - he no longer reacts to things in general (if he does, it's usually stress-related). His digestive system, while not 100% perfect, is so much better that I almost don't recognize him. Who would have thought his insane adrenaline/panic attacks were gut related? It turns out that not only is the majority of the immune system found in the GI system, but the digestive system has it's own nervous system called the Enteric (or Intrinsic) Nervous System. Even our emotions are largely controlled by the gut! There was a really interesting article about this in Scientific American: https://www.scientificamerican.com/article/gut-second-brain/
The problem with most commercially available probiotics (or even probiotic foods) is that they contain probiotic strains that are transitory and don't colonize the gut. Don't get me wrong, they still have value. But the benefit of strains like E. Coli Nissile 1917, and some others like L. Reuteri or Clostridium Butyricum (Miyarisan) is that they are capable of colonizing the GI system and having a lasting impact (Unfortunately, it seems that Miyarisan is no longer available on Amazon and may be difficult to source outside of Japan). This doesn't mean that once you take a few Mutaflor or Miyarisan you'll have plenty of it in your system forever. You might still need a 'booster' from time to time. But depending on what happens to be going on in your gut, having the right strains in there can make surprisingly positive changes in your overall health.
My husband and I do A LOT of fermenting (at least during our "better" moments when we have the energy) - we lactoferment sauerkraut, kombucha, wild yeast sourdough bread, yogurt, we make our own wine and beer and mead, etc... not just for the probiotics but mainly because fermenting not only makes existing nutrients more bioavailable but the action of the bacteria actually creates vitamins as a by-product.
Recently, I made a batch of sauerkraut that tasted amazing, but my husband said it didn't smell right (he has an amazing sense of taste and smell while I don't). I didn't listen to him because it tasted so good, and I was being obstinate (I hate throwing things out), so I decided to eat it anyway in my usual stubborn style. I got some GI distress as a result, and it turned out there definitely was something off about that batch. Then, I started reacting to other probiotic things (like kombucha) so I was worried that I'd allowed something bad to colonize.
Since I don't have any Mutaflor on hand, I started taking a probiotic from Nature's Way called "Primadophilus Reuteri Pearls" (I ordered it on Amazon and it was fairly cheap. I'm sure there must be other brands, but this is the only one I've use so far.) and within a few days all my GI distress was gone, and I'm not reacting to kombucha anymore. I was initially worried that the Reuteri wouldn't be aggressive enough to unseat the pathogenic invader, but it seems to have worked well. In addition to E. Coli Nissile 1917, Reuteri is my other favorite probiotic. If you read the research on it, it's amazing and probably one of the most important probiotics for just about everything in the body. For anyone who is having trouble getting Mutaflor (I order it from abroad and it's quite expensive), I'd suggest looking into Reuteri.
*Other people use probiotics like PrescriptAssist, which is a collection of soil based probiotics. I also have used a probiotic called Equilibrium, which is 100 different strains that should be in the human gut but have largely disappeared due to antibiotics and Western lifestyle. It may take some trial and error to find the probiotics that are right for you, so don't give up if you try one and it doesn't help.
Since you seem to have some reservations about taking L-glutamine, what about bone broth? There are many protocols for healing gut issues that focus on making/consuming homemade bone broth (which is very easy to make, if you have questions, I'm happy to give you some guidance on how to make it). It contains glutamine naturally, as well as a lot of other 'healing' nutrients like gelatin.
You must be thinking of someone else, i've not mentioned much about my messed up sleep on this forum but since you ask, short version of just the sleep, neurologist says i have non 24 hour circadian rhythm disorder, my body clock moves 8 hours forward a month and cannot be adjusted by full spectrum light/melatonin/blue light blocking glasses.@Alvin2 - you mentioned sleep issues. If you give me some details, I (or others) might be able to offer some suggestions for improvement. For example, do you have trouble falling asleep, staying asleep, waking up too early, not falling into a deep sleep, etc...
You must be thinking of someone else, i've not mentioned much about my messed up sleep on this forum but since you ask, short version of just the sleep, neurologist says i have non 24 hour circadian rhythm disorder, my body clock moves 8 hours forward a month and cannot be adjusted by full spectrum light/melatonin/blue light blocking glasses.
There are no drug treatments for non 24 and its extremely treatment resistant.So sorry, I tagged the wrong person! But I'm very sorry to hear about your sleep issues - that sounds like a really tough one Have you been able to try any medications?
My marriage broke down recently due to this, and the last 10 months I've had 50% custody of a 2 yr old. I've always been a light sleeper due to this disease, but the nights I have him I don't sleep well even though he does, because I'm paranoid he's going to wake and and wake me up and I have to go to work.
I'm using this crisis as an opportunity for get to the root of the problem.
Right now I'm seeing a naturopath who's got me on Bacopa Complex (mediherb), St Francis Black Walnut Parasitic treatment, Ichol Plus digestive formula, Goldenseal (mediherb), and nettle leaf tea, for whatever it's worth. I'm waiting for this treatment to end before I introduce probiotics, but Mutaflot is definitely on my list.