Help - I've overdone something re methylation and I don't know what

[hb8847]

I hesitate to post on this subject as I'm biology challenged unlike a lot of folks here but thought I would mention something that has helped me recently. First let me say that folate heavy food causes serious sweating, insomnia, and inflammation in me. I have not taken a methylated form of a B vitamin since 2015. I would like to be able to eat salads again but am about ready to give up on that. Taking niacin and electrolytes helps with overmethylation but not a total solution for me. I still overmethylate and wish Dr. Lynch would quit saying, "Just take a little niacin, and everything will calm down." Sheesh.

While working with Bob Miller, the naturopath, with Tree of Life, he said to me that folate drives MTOR and can cause inflammation and excitotoxicity. Hmmm......

So after eating anything green I try and take some things that inhibit MTOR. Some things I might take - curcumin, valerian, olive leaf, magnolia bark, eldeberry, etc. I'm not saying it's magic but this has definitely helped me, and maybe this info can help someone else. Joe at Selfhacked.com has a great article about MTOR so I'm posting in case it's helpful. https://content.selfdecode.com/mtor-natural-mtor-inhibitors/

I'm also still in the process of figuring this all out so dont take my word as gospel, but for a long time last summer I was having very similar reactions to you to any foods containing folate.

For months I assumed it was overmethylation and tried in vain to calm things down with different forms of Niacin.

Eventually I figured out that it wasn't overmethylation but inflammation, and that it was caused because I was missing some essential cofactors that folate needs to work.

Specifically for me it was the other, non-methylated B-vitamins, so B1, B2, etc. These are just as essential for B12 and Folate (B9) to work and if you're missing any of these it can cause very intense reactions (see Ben Lynch's site for details, also some of the B12 guides on this site stress it).

Anyway I was not aware of this at the time and had been prescribed a supplement high in B12 and Folate by a nutritionist but which lacked all the other essential B vitamins.

As soon as I started a supplement with all the remaining B-vitamins I began to get considerably better. This might be something worth bearing in mind for you - if you try it make sure to take it with food.

There are other cofactors too, such as potassium and magnesium, that you might be missing. And deficiency in any cofactor will prevent your body properly methylating and will likely cause inflammation.

In fact this is what I'm trying now - adding different cofactors to see if it calms down my reaction - and in the past couple of days I've begun to have some moderate success. Specifically for me I've added a multimineral, Vitamins D, A, and a small amount of methyl-B12 and Folate.

The fact that the latter two don't seem to have worsened my symptoms would appear to suggest it's not overmethylation I'm dealing with after all. Perhaps something similar is going on with you.

Best of luck with how you get on.

 

[Carnation4000]

I'm also still in the process of figuring this all out so dont take my word as gospel, but for a long time last summer I was having very similar reactions to you to any foods containing folate.

For months I assumed it was overmethylation and tried in vain to calm things down with different forms of Niacin.

Eventually I figured out that it wasn't overmethylation but inflammation, and that it was caused because I was missing some essential cofactors that folate needs to work.

Specifically for me it was the other, non-methylated B-vitamins, so B1, B2, etc. These are just as essential for B12 and Folate (B9) to work and if you're missing any of these it can cause very intense reactions (see Ben Lynch's site for details, also some of the B12 guides on this site stress it).

Anyway I was not aware of this at the time and had been prescribed a supplement high in B12 and Folate by a nutritionist but which lacked all the other essential B vitamins.

As soon as I started a supplement with all the remaining B-vitamins I began to get considerably better. This might be something worth bearing in mind for you - if you try it make sure to take it with food.

There are other cofactors too, such as potassium and magnesium, that you might be missing. And deficiency in any cofactor will prevent your body properly methylating and will likely cause inflammation.

In fact this is what I'm trying now - adding different cofactors to see if it calms down my reaction - and in the past couple of days I've begun to have some moderate success. Specifically for me I've added a multimineral, Vitamins D, A, and a small amount of methyl-B12 and Folate.

The fact that the latter two don't seem to have worsened my symptoms would appear to suggest it's not overmethylation I'm dealing with after all. Perhaps something similar is going on with you.

Best of luck with how you get on.

Thanks so much for your information. I didn't go into very much detail as it would take all night - ha ha. I don't take a multivitamin these days and take EVERYTHING separately. My little corner of the house looks like a pharmacy. I am always very carefully trying to balance every nutrient/vitamin/mineral you mentioned - especially electrolytes and B vitamins.

I like your comment about inflammation and feel it corresponds to what I said. MTOR causes inflammation so maybe is a piece to all this methylation madness. And "maybe it's not overmethylation" Hhmmm..... food for thought! Thanks again.

 

[hb8847]

So, for anyone interested, regarding this issue I seem to have figured out what might have been the problem - or one of them at least.

Basically I tried a bunch of things that are common causes for methylation side effects, as outlined on Ben Lynch's site I mentioned earlier in the thread.

This included electrolytes, methly-B12 and methylfolate, all the other B vitamins, SOD, glutathione, eating more/less protein (ie methionine), creatine, other vitamins (e.g. vits D, A), multimineral.

Most of these did little to help. Specifically with the insomnia and nerve tingling (I would tend to wake up stark after a few hours sleep with this odd nerve sensation like pins & needles through my body and wouldnt be able to sleep again for 4 or 5 hours).

I also felt incredibly fatigued and achey the following day, more than usual, and "depression" would worsen (not sadness but the clinical term, as in things like my communication and motivation would suffer).

I then decided to try glycine as a supplement instead as I'd noted the significance on the Lynch site of glutathione.

This has helped a bit, importantly in that my "nerve tingling" has gone way down and I'm not getting the horrendous insomnia. My depression has also fallen.

I am however still dealing with a lot of the physical symptoms, like achiness and fatigue. Something else also seems have started happening, in that I've begun feeling incredibly tired after eating, almost to the level of passing out.

I suspect what's happened is I've overdone the glycine and that its working "too well" in clearing my body of what I suspect to have been a surplus of toxins from the methylation. Except now my liver and immune system are being overworked, hence the continued fatigue.

The reaction to food I'm guessing is the glycine combining with the folate or methionine in the food?

This is all educated guesswork so if anyone has thoughts regarding any of this, and as to what might be going on, I'd greatly appreciate it.

Meanwhile I've given the glycine a break and suspect I'll reintroduce it later at a lower amount.

I've read elsewhere that some people choose to get around the glutathione issue by supplementing with NAC - does anyone have experience of this? I worry that cysteine might contribute to what I suspect might be excessive homocysteine levels, perhaps this is unwarranted.

 

[BeADocToGoTo1]

It is super difficult to balance when there are so many interlinked switches and your body is trying hard to (over)compensate with each change.

The achiness you mentioned reminds me. Have you tried staying off Vitamin D pills for a while? That causes achiness and pain for me. I can handle some cod liver oil (for A,D,K), but not in processed vitamin pill format.

 

[hb8847]

It is super difficult to balance when there are so many interlinked switches and your body is trying hard to (over)compensate with each change.

Tell me about it. I've no doubt all this methylation stuff is massively helping but the only times I've actually felt genuinely good since doing it have been just before I've started undermethylating again. Which says to me I'm not priming my body enough for it all, something is missing and I'm at a loss as to what.

The achiness you mentioned reminds me. Have you tried staying off Vitamin D pills for a while? That causes achiness and pain for me. I can handle some cod liver oil (for A,D,K), but not in processed vitamin pill format.

I haven't, I might give it a go. Although I've gone on & off with this and other vitamins/nutrients without any change so I suspect it's not that. Thanks though.

Do you know what might be the mechanism for your vitamin D reaction?

 

[BeADocToGoTo1]

Tell me about it. I've no doubt all this methylation stuff is massively helping but the only times I've actually felt genuinely good since doing it have been just before I've started undermethylating again. Which says to me I'm not priming my body enough for it all, something is missing and I'm at a loss as to what.

I haven't, I might give it a go. Although I've gone on & off with this and other vitamins/nutrients without any change so I suspect it's not that. Thanks though.

Do you know what might be the mechanism for your vitamin D reaction?

My suspicion is that it has to do with the functioning of the parathyroid which helps regulate calcium, vitamin D, and phosphorus levels in the body. My guess is that calcium levels increase enough to be felt. But, it could be the processing used in manufacturing, as if my body realizes it is not the real thing, or years of taking 5000IU was just too much. My blood levels of vit D were never even close to being too high. It did take me a while to figure it out as I was blaming other supplements first not ever thinking that something as innocent sounding as a vitamin D supplement could cause that much pain and discomfort.

 

[hb8847]

My suspicion is that it has to do with the functioning of the parathyroid which helps regulate calcium, vitamin D, and phosphorus levels in the body. My guess is that calcium levels increase enough to be felt. But, it could be the processing used in manufacturing, as if my body realizes it is not the real thing, or years of taking 5000IU was just too much. My blood levels of vit D were never even close to being too high. It did take me a while to figure it out as I was blaming other supplements first not ever thinking that something as innocent sounding as a vitamin D supplement could cause that much pain and discomfort.

Interesting. Well I've given it a go anyway and am just taking the 'oil capsule' vitamin D for now.

 

[hb8847]

So, for anyone interested, regarding this issue I seem to have figured out what might have been the problem - or one of them at least.

Basically I tried a bunch of things that are common causes for methylation side effects, as outlined on Ben Lynch's site I mentioned earlier in the thread.

This included electrolytes, methly-B12 and methylfolate, all the other B vitamins, SOD, glutathione, eating more/less protein (ie methionine), creatine, other vitamins (e.g. vits D, A), multimineral.

Most of these did little to help. Specifically with the insomnia and nerve tingling (I would tend to wake up stark after a few hours sleep with this odd nerve sensation like pins & needles through my body and wouldnt be able to sleep again for 4 or 5 hours).

I also felt incredibly fatigued and achey the following day, more than usual, and "depression" would worsen (not sadness but the clinical term, as in things like my communication and motivation would suffer).

I then decided to try glycine as a supplement instead as I'd noted the significance on the Lynch site of glutathione.

This has helped a bit, importantly in that my "nerve tingling" has gone way down and I'm not getting the horrendous insomnia. My depression has also fallen.

I am however still dealing with a lot of the physical symptoms, like achiness and fatigue. Something else also seems have started happening, in that I've begun feeling incredibly tired after eating, almost to the level of passing out.

I suspect what's happened is I've overdone the glycine and that its working "too well" in clearing my body of what I suspect to have been a surplus of toxins from the methylation. Except now my liver and immune system are being overworked, hence the continued fatigue.

The reaction to food I'm guessing is the glycine combining with the folate or methionine in the food?

This is all educated guesswork so if anyone has thoughts regarding any of this, and as to what might be going on, I'd greatly appreciate it.

Meanwhile I've given the glycine a break and suspect I'll reintroduce it later at a lower amount.

I've read elsewhere that some people choose to get around the glutathione issue by supplementing with NAC - does anyone have experience of this? I worry that cysteine might contribute to what I suspect might be excessive homocysteine levels, perhaps this is unwarranted.

Well back to the drawing board. This turned out not to be the solution. I seemed to get a bit better for a few days in that I was reacting less to food but the nerve tingling persisted and I still wasn't great. Once the effects of the glycine wore off it all came back full force.

I had a look over my genetic profile and I'm COMT ++ (for both genes) as well as MTHFR homozygous. I'm wondering if that's contributing to this whole methylation mess, as none of the standard treatments seem to be working at this stage.

As such I think I'll be giving the protein a break for a while and see if that calms down my symptoms, as I've read that excessive protein can hinder COMT and I do eat a fair amount of it. I've also tried B6 on its own the last couple of days and it seems to have helped my sleep somewhat.

Ultimately though I feel like I'm gonna need more tests done and will probably have to set up another doctors appointment. Depressing as there are so many angles to this thing. Sometimes I feel a bit overwhelmed by the idea that the solution is out there and is probably really quite simple but permanently out of reach, meanwhile time is ticking by, life ticking by.

 

[EddieB]

Hb8847,
Thank you so much for going through the trouble to post all your efforts. I’m suffering many of the same, but have little to no knowledge of what to try to do about it. No help from doctors. I tested negative for SIBO, but have so many of the symptoms. Stuck on PPI’s due to reflux, feeding the cycle.. I have the MTHFR gene, seem to have under-methylation.
Curious, do you know what your iron levels are? Mine are pretty screwy, wonder if that factors in...

 

[hb8847]

Hi Eddie,

Sorry to hear about your predicament.

Hb8847,
I tested negative for SIBO, but have so many of the symptoms. Stuck on PPI’s due to reflux, feeding the cycle.. I have the MTHFR gene, seem to have under-methylation.

Which test did you take for SIBO? To be honest if you have the symptoms that's likely confirmation enough. Most people if they've ever gone through rounds of antibiotics and eating unhealthily are gonna have SIBO to some degree. I know for a fact I have it and my direct symptoms are that whenever I eat FODMAP foods I get incredibly bloated and gassy and sometimes get diarrhoea, and I never get any of that from non-FODMAPs. If you experience the same I'd probably assume you have SIBO to some degree. And if it's not specifically SIBO there could well be Candida or other gut issues going on.

You can then get a bunch of other problems following on from the SIBO, which amongst other things can flare your immune system (leading to autoimmune problems, depression) and impair your ability to absorb certain essential nutrients, a key one being B12 which is why SIBO so often correlates with undermethylation, irrespective of whether you have the MTHFR gene, although that probably doesn't help. Low B12 can also lead to poor stomach acid levels which then cause SIBO to worsen in a vicious cycle. You can also get histamine issues from many of the above, and leaky gut.

If you can't get in front of a doctor the first thing I recommend you do if you haven't already is completely overhaul your dietary lifestyle, to the point where you're eating and drinking is completely healthy. No sugar, alcohol, caffeine, drugs, nothing processed, no bread, fast food, gluten, dairy. Cut it down to vegetables, grains, nuts, meat/fish, and fruit and see if your situation improves. Go heavy on the veg. Drink nothing but water and make sure you're getting enough salt. Regarding the SIBO I'd also recommend you maybe get rid of all the FODMAPs and then try introducing them one by one and seeing what happens. Treat your body as an experiment as my experience is that to get better from something like this takes serious vigilance and experimentation to figure out what works and what doesn't. If removing FODMAPs doesn't help try getting rid of grains - the problem could be autoimmunity and grains are a big flare. Then try getting rid of foods high in histamine - several people with gut or methylation problems suffer from considerable issues with histamine. Find out which foods help you and which make you worse. Does doing a 48hour food fast make you feel better? Food could be triggering general inflammation for some reason. I do a big fast whenever I feel particularly bad and it helps considerably.

Even if all this doesn't get you better eating a very healthy diet should help, and you'll be learning more about yourself and your condition which at the bare minimum will help a doctor when you mention it to them. The more information you have the better,

Then maybe try adding in some essential vitamins and minerals one by one and see if that improves matters (vits A, D, E, K, multimineral, fish oil, electrolytes). If you're concerned methylation is an issue I'd recommend following the Ben Lynch MTHFR Protocol which has helped me a great deal. Pay attention to the fact he recommends priming your body with these essential vits and all the non-methylating B Vitamins before attacking the B12 and Folate. The latter two completely send me through the roof so go easy on all of it. Alternatively you can follow other methylation plans like the one on this site although that didn't help me nearly as much and I find the info is quite convoluted and misleading at points.

As for healing the gut, eliminating FODMAPs and the unhealthy diet outlined above is key because it's just feeding the bad bacteria. Once you're doing that you can start attacking the bacteria. My doctor is very good and a gut specialist and has me on a five point plan. It goes roughly as follows:

- Take stomach acid droplets with every meal. Many people with gut issues have low stomach acid and this causes problems because it means you cant digest your food properly plus acid kills SIBO. If I take too many stomach acid droplets in one go I suffer the effects of the dying bacteria (a Herx reaction). So go slow with it and work up, but according to the doc it's absolutely essential to prime the stomach acid first as otherwise other antibacterial medications mightn't work and the SIBO could come back. Note that you might not have low stomach acid; you can easily test for this by performing a belching test with some bicarbonate of soda, look up some of the tests online.

- Take comprehensive digestive enzymes with each meal. If you've gut problems it's likely you aren't producing the right enzymes needed to break down food which can worsen any absorption issues.

- This step I'd recommend you properly determine you have SIBO before you undertake it as otherwise it could be pointless and potentially harmful. It involves taking a combination of antibiotics specialised to stay in the gut (rifaximin and neomycin). My doctor actually said this was optional to me as it carries the risk of killing healthy bacteria lower down in the colon where you want bacteria, but as my SIBO is so bad and symptoms have been so intense for so long I will be doing it (I'm personally still only on stage one building up the acid droplets - this kills SIBO itself anyway). Again if you go down this route I'd suggest you do so in the knowledge you do have SIBO, so if you can get a comprehensive stool test and/or a breath test. Alternatively you could have fungal issues in which case you could take antifungals like Nystatin which is highly effective. But you don't want to be taking antibiotics if there's no need to and lots of people manage to get better with dietary adjustments alone if the condition isn't too severe.

- Next on my list is natural antimicrobials. These also kill SIBO yet contain natural ingredients such as oregano extract so don't need a prescription. Microbinate is the one recommended to me and presumably would be fine to take even if you haven't had SIBO confirmed, but I'd double check just to be sure.

- Once this is done to then take probiotics to repopulate the gut with healthy bacteria. The specific ones recommended to me are:

"i) Aller Aid L92 x 60 Capsules. Take 1 capsule with each meal
ii) Russian Choice Immune. PRODUCT CODE: 75300. Take 3 capsules daily.
iii) Saccharomyces boulardii 120's. Product code AR-77230-NL (F). Take 3 capsules daily.
iv) Immuno-gG x 100 Capsules. Take Two (2) capsules three (3) times each day as a food supplement."

Also mentioned are eating healthy prebiotics (ie fibres which bypass the small intestine and feed the good bacteria in the colon), and to keep on avoiding FODMAPs and unhealthy foods for a while as SIBO is very prone to coming back.

Best of luck with any of this and be careful with it. If you can, try to do this with help of a specialised doctor and remember I am just some guy on the internet with advice that has been specifically tailored to my situation and may not be applicable to you. That said, many of these stuff is common sense and the risks of harming yourself with a healthy diet and some vitamin supplements and stomach acid droplets is incredibly low. And it can do absolute wonders to one's health.

Hugo

PS. no I dont know my iron levels unfortunately, though I know they are something to do with methylation. Again probably something you should try bringing up with a doctor, or a gut specialist if you can get in front of one.

 

[BeADocToGoTo1]

...
If you can't get in front of a doctor the first thing I recommend you do if you haven't already is completely overhaul your dietary lifestyle, to the point where you're eating and drinking is completely healthy. No sugar, alcohol, caffeine, drugs, nothing processed, no bread, fast food, gluten, dairy. Cut it down to vegetables, grains, nuts, meat/fish, and fruit and see if your situation improves. Go heavy on the veg. Drink nothing but water and make sure you're getting enough salt..

Great post. If you are trying to work on SIBO, Candida, acid reflux I would also seriously cut down on grains (certainly all gluten containing ones) and fruit (especially citrus and melon for example) as well. There are quite a few food additional elements that should be cut out when tackling reflux. If it is Candida overgrowth there are yet again a number of items (e.g. anything with yeast, peanuts, mushrooms) that should be left off.

Hb8847,
I tested negative for SIBO, but have so many of the symptoms. Stuck on PPI’s due to reflux, feeding the cycle.. I have the MTHFR gene, seem to have under-methylation...

Your PPIs are likely a big cause of issues, depending on how long you have been taking them. These should only be used for a very short period (2-3 weeks max) to try to calm down the pepsins (powerful digestion enzymes) that have come up in the esophagus and are, simply put, digesting your esophagus. PPIs and any antacids should be taken only in combination with temporary very strict food and drink adherence. It needs to be tackled from the top-down (i.e. anything coming into the mouth) and bottom-up (i.e. from stomach coming up). Pepsins that have come into the esophagus need to be 'starved' so that healing can occur and they stop 'digesting' your esophagus. Another simple but very effective action is to elevate the head of your bed by 20-25 cm, that helped me stop the flow of acid up into my throat at night. These sleep hours are when you want to heal, not add more pepsin into your esophagus. Keep the overall bed flat though, so put blocks of wood or a stack of books underneath just the two bed posts at the head of the bed. I dedicated a chapter on SIBO, Candida and acid reflux rebalancing actions that helped me resolve all 3. Chris Kresser also has some good info on his website.

Due to the PPIs your stomach acid will be too low (pH too high), which will cause issues with digesting and absorbing food properly and thus nutrient imbalances and dysbsiosis. Acid reflux is your body telling you something is likely quite wrong with your food and beverage intake, as well signaling dysbiosis in your stomach and intestines. Of course there might be other medical issues at play that can cause acid or silent reflux, including mechanical ones, so discuss it with your doctor. For example, hiatal hernia or H. Pylori bacteria issues are things to rule out.

 

[Mick]

I don't have insurance - am based in the UK. I see a private doctor but pay for it all myself.

A few thoughts, perhaps not particularly fitting your current situation because you have so many symptoms that it's hard to grasp them all...

I've been dealing with a similar situation many times over, ie. I took something and it worked for some time but then it didn't and gave me side effects. Or something strange happened. And I didn't know what to do. Now, however I am quite good at finding out what to do, how to counteract the side effects. Not only did I get to know supplement functions better but simply I got to know my body better and how it reacts.

However, I'd be delighted if I could find a normal doctor.
Basically doctors here do not deal with CFS or anything like that (may only refer you to a shrink - that's what they do) so I have to go privately. But privately... they use the same patterns of handling patients as they do when seeing patients paid by healthcare system.
So I'd even be interested to see a neurologist in GB specializing in muscular diseases (myotonia, etc.) and I wonder how much that would cost. Could you please PM me with prices or some referrals if you know any such doctor? I probably wouldn't be able to afford it anyway or I should rather say I'd be able to afford it but barely and with a lot of struggling and I think I can spend this money much better because my problem is not only about muscles but also about SIBO and other things. So I don't even particularly look for a doctor in GB but it would be good to have some referrals handy.

So in many respects I have something similar to what you experience.
Now, back to your original problem.
You think that you are overmethylated after taking Optimal Start or Choline or Folate.
Almost for sure it's not about overmethylation. It's not that easy. It's not like everything leads to over- or under- methylation. You may simply experience side effects from one or rather a couple of components that Optimal Start contains. The doses in Optimal Start are quite huge. Maybe there are larger doses available on the market but it's still megadosing. And with megadosing you have to take very special precautions, ie. suspect that any of the megadosed components may actually cause you an overdose. Usually, after some time, it *will* cause you an overdose. It may be only one component - but it will render the whole Optimal Start useless for you. That's why I never take megadoses together, all at once. You simply never know which one is to blame. Many many years ago I took a good multivitamin. It made me weird and crazy. It was because of vitamin B2, folate as folic acid, ginseng that made me crazy/wired (BTW: Optimal Start contains quite a high dose of ginseng) and vitamin D which caused hypercalcemia in the long run. And my multivitamin also contained calcium... so it made this hypercalcemia even worse.

So I can take these only in minute amounts (like RDA times 2 at most) - and it's quite enough for me.
I found that these are necessary in minute amounts only after a lot of experimentation and I feel fine with lower doses. On the other hand I can take lots and lots of vit. B1 without any problems, like 200 mg, so even more than in Optimal Start.
If I stop taking these vitamins in this way... I get a lot worse.
But in your situation I'd also try some other supplements... there are many... L-carnitine (for example)... You'll find a lot of advice here...

About SIBO... that is another problem with so many solutions that are supposed to work but don't. So, I won't dwell on that. There is however one very good way of getting rid of SIBO: fasting. Surely, it can't be used forever but fasting for a few (2-3) days can at least help you see if the symptoms subside. If they do, you're on the right track. My sibo gets a lot better after fasting for 3 days. However most of the time I use intermittent fasting, ie. I don't eat breakfasts. Thus I can reduce the frequency of "real" 2-3 day fasts to only 1 per month.

Unfortunately, all of this still doesn't make me completely healthy, so that I could return to a normal life but it's a progress - from less than an hour daily (and unable to drive a car for example) to like 2-3 hours daily of light work (and able to drive a car for 4 hours straight - my personal record of yesterday).

EDIT: I didn't notice that there is another page of posts to be read. This damn brain fog. Now I can see that you don't take a multivitamin these days and take EVERYTHING separately. And good for you - that's exactly what I was trying to say. Now, it will probably take you some time to figure out what to take and in what doses. There are many caveats...

 

[hb8847]

Thanks Mick for all your advice.

As for your question regarding the neurologist I'm not sure sorry I have no contacts. Maybe try googling, it's how I found my current doctor, although I had to go through a few different doctors to get to the relevant one. Initially my problem was with food sensitivities so I tried contacting allergists. Following a consultation with one they confirmed my problem wasn't allergy related who pointed me in the direction of my current doctor who is an immunologist & gut specialist. His name is Dr Lulsegged and is based in London, and an initial consultation costs around £250 I think (which is the same as what the allergist cost so perhaps that's the standard here in the UK, or at least in London?)

Best of luck.

 

[hb8847]

Also yes fasting does help me significantly. I tend to do a 2 day fast once every fortnight or so, and day long fasts if my symptoms aren't too bad. I don't find that it necessarily gets rid of the SIBO though, I feel like it just alleviates the inflammation from SIBO toxins or that food will be causing on account of SIBO-induced leaky gut? I've just written a post in the General Discussion about my SIBO issues and I get very intense Herx reactions from stomach acid droplets let alone antibiotics, so I feel like my SIBO load must be extremely high.

 

[Rufous McKinney]

I apply chinese traditional concepts to my diet...and they are very helpful when I follow them.

When I don't, things get- harder...and i have many more digestive problems and issues and more severe IBS-d in my case.

I can recall- oh 3 occassions in my adult life where I took an antibiotic. (bronchitis, the tick bite in 1992, one tooth thing 40 years ago).

I buy organic food almost entirely and don't eat out much. Don't own an aluminum pan.

Never stopped eating an egg. didn't buy into the margerine story.

Probiotics can be dangerous, so I typically very rarely take them.

Raw food is very difficult for me to digest and generally massively avoided, with occassional exception. A little fruit is ok...because of the sugar i don't eat large amounts of fruit..

Probiotics are obtained from the food item- and so a little bit of saurcrauts and pickleded cucumbers are outstanding while some pill is NOT. I've had several VERY bad outcomes directly after taking- a Probiotic...really expensive and good ones. Keep in mind that the probiotic creature out in the wild- is taken up by the roots of plants..and is inside their tissues. But I"m not eating salad much...because of these digestion issues.

I am having issues with some of the Food Map items-...cruciferae especially...and currently I'm back on cooked root vegetables which seem to be extremely...good for my intestines and their function.

so if that makes the body happier- well then eat that and not the other stuff everybody else is swearing is so great ...but may not always be helpful ...

 

[Rufous McKinney]

I don't find that it necessarily gets rid of the SIBO though, I feel like it just alleviates the inflammation from SIBO toxins or that food will be causing on account of SIBO-induced leaky gut?

digesting food requires and uses energy.

If one can fast, some additional energy units may be available to do something else.

Exercisng intensely requires energy to deal with all the cellular waste products that got generated- because you ran a marathon or what have you.

My 40 year old friend who- started running marathons- ended up so sick...and she was fine before. She ran herself into the ground and ended up with all kinds of problems, inflammatory.

 

[hb8847]

digesting food requires and uses energy.

If one can fast, some additional energy units may be available to do something else.

Exercisng intensely requires energy to deal with all the cellular waste products that got generated- because you ran a marathon or what have you.

My 40 year old friend who- started running marathons- ended up so sick...and she was fine before. She ran herself into the ground and ended up with all kinds of problems, inflammatory.

Thanks Rufous. And yes I understand the rationale here - any energy not saved on digestion can be used attacking the SIBO. I just question how far I've managed to get from successive fasts and with little improvement in health beyond a temporary easing of symptoms. One summer symptoms got so bad I ended up cycling '3 days off foods followed by 2 days on' for about 3 months, and didn't see any long term improvements to my bacterial load (the food I was eating was also exclusively meat and low FODMAP veggies).

Hugo

 

[Rufous McKinney]

Mostly I have to nibble every two hours...so fasting is just not happening here...erratic blood sugar...

I'm very low carb and sugar and don't drink any beverage with a calorie. It still happens.

 

[Mick]

Maybe try googling, it's how I found my current doctor

I have a big problem with doctors - because most of them don't get anything. So I have to google doctors before I set any appointment - eg. I try to find papers that they wrote. Unfortunately, that still doesn't work most of the time. Referrals from fellow sufferers ensure a much higher success rate.
For now I kind of mostly needed the cost of a visit.

I understand the rationale here - any energy not saved on digestion can be used attacking the SIBO. I just question how far I've managed to get from successive fasts and with little improvement in health beyond a temporary easing of symptoms. One summer symptoms got so bad I ended up cycling '3 days off foods followed by 2 days on' for about 3 months

Let me comment on that even though I may not cover all of what I have to say. First thing: I feel the same way, many times fasting only alleviates the inflammation.
What is my conclusion - after years of experimentation? Simple. You need longer fasts. One paper said (don't remember the title of course, maybe I will look that up later) that the benefits can only be seen after 5 days of fasting. Of course, shorter periods bring some of the benefits but longer bring some special benefits of their own. But you have to get used to longer fasts by doing shorter fasts and you have to be thoroughly prepared = your other deficiencies (mineral, vitamin, protein) have to be taken care of. Otherwise, it's simply a torment.

With any kind of fasting you may try boosters: glutamine (helps heal gut faster - and that is one of the things you expect when fasting), HMB or BCAA (decreases muscle catabolism = increases fat catabolism and also makes fasting more bearable without affecting its effectivness too much, at least in my case), EGCG (green tea, boosts fat catabolism), carnitine (boosts fat catabolism).

Summarizing, it's possible that you'd be better off doing '7 days off foods followed by 14 days on' than '3 days off foods followed by 2 days on'. But yes, it's quite difficult and I managed to do more than 7 days off foods only 2 times.

digesting food requires and uses energy.

It's a nice catch-phrase but when you take a closer look it doesn't exactly look that way. What is actually energy in the case of digestion? More or less it is energy spent to make digesting enzymes and stomach acid. So we're talking actually about saving digesting enzymes and stomach acid.

But there's much much more to fasting than saving energy (or enzymes actually). When enzymes are not attacking your gut walls these can heal (incl. junctions, ulcers). The immune system is not attacking antigenes (bacteria, allergens) so there is no inflammation. And that lowering of inflammation happens in the whole body. Visceral, pro-inflammatory fat is burnt -> less inflammation. But the most important thing is that fasting causes a physiological switch in the immune system to a mode that can be described as: don't fight pathogens, don't continue with endless inflammation, start healing the body because now the body doesn't receive any energy from food which means that there is a physical injury which requires healing and not inflammation. Unfortunately, it takes like 5 days to flip that switch.

If you see that it's not about some elusive energy conservation but rather a very concrete mechanical repair of your gut walls - this may help you refine your treatment.

I don't find that it necessarily gets rid of the SIBO though, I feel like it just alleviates the inflammation from SIBO toxins or that food will be causing on account of SIBO-induced leaky gut? I've just written a post in the General Discussion about my SIBO issues and I get very intense Herx reactions from stomach acid droplets let alone antibiotics, so I feel like my SIBO load must be extremely high.

Consider that these so-called herx reactions may be actually inflammatory reactions of the sensitive and inflamed gut to an irritant. That's like always my case when I suspect the so-called herx reaction (I used to have for long time gastritis confirmed endoscopically, so...).
Think about it this way:
is it possible that the acid droplets are irritating your stomach walls?
is it possible that the antibiotics are chemically iritating your gut?
I can feel that they do because my pain and inflammation is completely different from usual.

Last thing: when it comes to probiotics try Culturelle without inulin. I tried many and Culturelle is much much better than any other probiotic. But I've also seen people complaining about it so you never know...

 

[hb8847]

Consider that these so-called herx reactions may be actually inflammatory reactions of the sensitive and inflamed gut to an irritant. That's like always my case when I suspect the so-called herx reaction (I used to have for long time gastritis confirmed endoscopically, so...).
Think about it this way:
is it possible that the acid droplets are irritating your stomach walls?
is it possible that the antibiotics are chemically iritating your gut?
I can feel that they do because my pain and inflammation is completely different from usual.

This is an interesting idea and honestly not something I'd considered. I brought up the reactions I was getting with my doctor and he was the one who told me is was a Herx and I'd taken that as gospel.

The reason I sway more towards it possibly being Herx is because my symptoms are just an exacerbation of my usual ones, and you'd specifically mentioned the paid is very different from usual when using antibiotics.

For me there isn't any specific gut pain or gut irritation at all, but first a general malaise/despondency that comes on a few hours after ingesting the acid droplets and lasts for a few hours. Then the next day I am considerably achey in my back and more fatigued (both of which I deal with normally anyway). This is just those normal symptoms exacerbated, which makes me feel it's likely I'm getting a certain amount of gut toxins in my system as it is and the stomach acid and antibiotics have just multiplied it?

I wonder if there's any way to know for sure whether it is a Herx or gut irritation because that would really help me out. I did a two day fast last week which hopefully would have induced some healing in the gut and then began on the stomach acid straight after and immediately got a reaction, which might suggest a Herx. Who knows.

I appreciate the suggestion and it has given me some pause for thought. It would probably really help if it was because I'd likely be able to address this SIBO issue more forcefully.