Cutting back on methylation supplements for a treatment?

[Katy131]

Hi all

What do you do if you have to cut back or stop methylation supplementation to prepare for a medical treatment?

I am having periodic immunotherapy treatment for allergies and MCS in general and for these shots I need to cut right back on all my supplements leading up to the shot and nothing at all for 3 days around the shot itself. Now that I'm working on methylation I am constantly having to titrate my potassium intake or I wake in the night with alarming palpitations and sweating which is only fixed with a potassium citrate tab. It doesn't want to settle down to a reliable daily dose and I worry about what I would do if I wake in the night during my abstinence time over the shot and can't take any potassium? What do you do?

 

[almost]

I feel for you. I think you have to weigh the benefits and risks of both stopping and not stopping. I'm sure your docs have reasons why they want all things stopped (eliminates variables, interactions, and I'm sure other things). Ask them to be specific so you can understand to cost/benefit. You already know the costs/benefits of not stopping. Then you just have to choose.

Earlier this year I took a NutrEval test. It was both the best and worst thing I have done all year. Before that, I was actually doing better than I had in years but I had been waiting for months for the appointment at the Functional Med doc and I wanted to see it through and get whatever benefit I could get. That test also wanted you to go cold turkey on all supplements. I was taking several that seemed to be helping. What's the harm of stopping for a few days? I ended up having to reschedule the blood draw after I had already stopped supplements, so it actually ended up being six days if I remember correctly. I could tell after the first day that I was affected by the lack of supplementation, and again, wanted to see it through. I have never regained that state of health, even though I went back on the exact same supplements on the exact same schedule.

I say that to mention something you already know. There is a risk to stopping too. You just have to weigh both sides. Not easy. Best of luck to you; I wish you well.

 

[drmullin30]

Hi all

What do you do if you have to cut back or stop methylation supplementation to prepare for a medical treatment?

I am having periodic immunotherapy treatment for allergies and MCS in general and for these shots I need to cut right back on all my supplements leading up to the shot and nothing at all for 3 days around the shot itself. Now that I'm working on methylation I am constantly having to titrate my potassium intake or I wake in the night with alarming palpitations and sweating which is only fixed with a potassium citrate tab. It doesn't want to settle down to a reliable daily dose and I worry about what I would do if I wake in the night during my abstinence time over the shot and can't take any potassium? What do you do?

Hi Katy, not exactly on topic but since you mention the sweating and heart palpitations, I have to ask how much B6 are you taking? Those two symptoms were the early signs of small fiber neuropathy within my autonomic nervous system caused by pyridoxine toxicity from high dose P5P. If you are taking anything more than a few milligrams a day of B6 or P5P I would cut that out immediately to see if your symptoms improve.

On the topic at hand, why do you need to stop the supplements for allergy treatments? Methylation improvement should only help with allergies etc. Is there any risk with continuing the supplements while undergoing treatment?

 

[Katy131]

Hi Katy, not exactly on topic but since you mention the sweating and heart palpitations, I have to ask how much B6 are you taking? Those two symptoms were the early signs of small fiber neuropathy within my autonomic nervous system caused by pyridoxine toxicity from high dose P5P. If you are taking anything more than a few milligrams a day of B6 or P5P I would cut that out immediately to see if your symptoms improve.

On the topic at hand, why do you need to stop the supplements for allergy treatments? Methylation improvement should only help with allergies etc. Is there any risk with continuing the supplements while undergoing treatment?

Hi - thanks for your reply.

I'm intending to follow Dr Myhill's Methylation protocol - but really right at the beginning atm. I have only added in the Biocare P5P she recommends from that list and have been taking only one a day for several months. My serum B6 P5P was deficient earlier this year and since I started the P5P it has come into the normal range. Other members on the forum here have guided me to titrate Potassium to ameliorate symptoms - the sweating and palpitations are in the expected low potassium list - and it has worked well. Here's Dr Myhill's Methylation page and the Biocare P5P she recommends -

https://www.drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle
https://www.salesatdrmyhill.co.uk/p...h-co-factors-by-biocare-60-capsules-177-p.asp

I don't know if you think that's too much?

The immunotherapy allergy treatments I have make you very sensitive for the few days around the shot so my doctor says to stop all supplements for three days to avoid becoming sensitised to them. This has happened to me in the past, including developing an allergy to corn by having a supplement derived from corn too close to the shot. Our supplements have to be made from something after all.

 

[drmullin30]

Hi - thanks for your reply.

I'm intending to follow Dr Myhill's Methylation protocol - but really right at the beginning atm. I have only added in the Biocare P5P she recommends from that list and have been taking only one a day for several months. My serum B6 P5P was deficient earlier this year and since I started the P5P it has come into the normal range. Other members on the forum here have guided me to titrate Potassium to ameliorate symptoms - the sweating and palpitations are in the expected low potassium list - and it has worked well. Here's Dr Myhill's Methylation page and the Biocare P5P she recommends -

https://www.drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle
https://www.salesatdrmyhill.co.uk/p...h-co-factors-by-biocare-60-capsules-177-p.asp

I don't know if you think that's too much?

The immunotherapy allergy treatments I have make you very sensitive for the few days around the shot so my doctor says to stop all supplements for three days to avoid becoming sensitised to them. This has happened to me in the past, including developing an allergy to corn by having a supplement derived from corn too close to the shot. Our supplements have to be made from something after all.

Hi Katy, if you're having your blood levels of B6 checked you're doing the right thing and are probably fine. Keep an eye on it and if you get into higher than the normal range and have any small fiber peripheral neuropathy symptoms be aware as 50 mg per day is a very high dose.

In your case, the potassium deficiency is probably good news as it likely means your healing on some levels.

As for stopping the supplements, I would try and up your nutrition game as far in advance as possible. E.G. limit or avoid alcohol, gluten, sugar, seed oils like canola, oxalates, salicylates, histamines etc. and avoid all processed foods. I have found that my diet is the most important part of my treatment and I avoid or severely limit the things listed above and don't consume dairy or any grains or any processed foods whatsoever and it has been the best thing I've ever done for my health. I can't eat food for pleasure so it's a bit depressing but I've gotten used to it and don't even think about it now.

Wishing you good luck and good health.

 

[Mary]

Now that I'm working on methylation I am constantly having to titrate my potassium intake or I wake in the night with alarming palpitations and sweating which is only fixed with a potassium citrate tab. It doesn't want to settle down to a reliable daily dose and I worry about what I would do if I wake in the night during my abstinence time over the shot and can't take any potassium? What do you do?

@Katy131 - you can try low-sodium V-8 - it's higher in potassium than regular V-8. It works pretty quickly. Tomato juice is also high in potassium though I think low-sodium is higher. The low-sodium V-8 has about 900 mg. potassium per 8 oz. glass and if need be you can drink a couple of glasses. It works pretty quickly.

I've often had to take potassium in the middle of the night because of low potassium symptoms, which for me are primarily foot/ankle/lower calf muscle spasms and twitches. And low-sodium V-8 works just as well.

I'm unfortunately very sensitive to MSG in all its forms (https://www.truthinlabeling.org/names.html) and drinking V-8 in the middle of the night kept me awake the rest of the night because of "natural flavors" (MSG) - argghhh!!! But most people don't react like me.

And if you are ultra sensitive to MSG, you can try coconut water and also there are vegetable juices which don't have "natural flavors" added.

Have you asked your doctor if they would object to a potassium tablet as it's so easy to get in food?

 

[Katy131]

In your case, the potassium deficiency is probably good news as it likely means your healing on some levels.

Do you know why potassium deficiency means you are healing?

 

[Katy131]

you can try coconut water and also there are vegetable juices which don't have "natural flavors" added.

Have you asked your doctor if they would object to a potassium tablet as it's so easy to get in food?

Thanks @Mary ! Yes the juices seem the way to go - I can have a glass during the night ready. I know for certain that my Doctor wants all supplements stopped for about 48 hrs around the shot, but a juice should be fine as long as it's carefully on the 3-day rotation diet.

 

[almost]

Thanks for the labeling link, @Mary . Appreciated.

 

[drmullin30]

Do you know why potassium deficiency means you are healing?

My limited understanding is that potassium is needed for cell proliferation and maintenance and when healing starts more cells are being made and replaced so the metabolic potassium demand rises.

https://www.ncbi.nlm.nih.gov/pmc/ar... most abundant,that could be life threatening.

"Potassium is the most abundant cation in the intracellular fluid and it plays a vital role in the maintenance of normal cell functions. Thus, potassium homeostasis across the cell membrane, is very critical

 

[Katy131]

potassium is needed for cell proliferation and maintenance and when healing starts more cells are being made and replaced so the metabolic potassium demand rises.

Thank you for the link. Do we need to titrate Potassium continually throughout the methylation healing process or does there come a point where healing is done and Potassium is no longer needed to supplement?

 

[drmullin30]

Thank you for the link. Do we need to titrate Potassium continually throughout the methylation healing process or does there come a point where healing is done and Potassium is no longer needed to supplement?

At some point theoretically you will be able to get enough potassium from food alone. I hit this point but didn't realize it because I was having electrolyte imbalance problems due to B6 toxicity. Once I stopped the B6 the folate b12 and the rest of the methylation protocol no longer caused potassium or electrolyte problems. The only things I was deficient in was sodium, copper and manganese all due to long term B6 overdose. I have since stopped copper and I am slowly reducing sodium and manganese.

The other issue for me was oxalates which were also causing electrolyte imbalances but since I've reduced my oxalate intake dramatically again my electrolytes are much better now. The low oxalate approach also allowed me to drastically reduce my dosages of b12 and folate.

All this to say is I don't know how long you will need to supplement potassium or if it's all due strictly to methylation. There are so many things that can effect our electrolyte balance.

 

[Katy131]

Once I stopped the B6 the folate b12 and the rest of the methylation protocol no longer caused potassium or electrolyte problems.

It sounds like you have balanced your methylation, since you were able to stop the methylation protocol.

How long did it take for the protocol to work for you? How did you realise what was going on and start to reduce the protocol - did you find you were "overmethylating"? Perhaps symptoms changed in some significant way which alerted you?

 

[drmullin30]

It sounds like you have balanced your methylation, since you were able to stop the methylation protocol.

How long did it take for the protocol to work for you? How did you realise what was going on and start to reduce the protocol - did you find you were "overmethylating"? Perhaps symptoms changed in some significant way which alerted you?

My apologies for this long winded post: tldr; my diet is the most important part of my protocol. My philosophy now is the less supplements the better and I hope one day to be able to stop all supplementation. My experience with B6 toxicity and neuropathy was terrifying. My journey to health has taken well over ten years.

Implementation of the protocol was sort of gradually implemented for me in fits and starts as I initially tried several things. My initial protocol after several years on SSRIs for depression, ocd, autistic type symptoms, panic and anxiety which didn't work well at all for me was a haphazard attempt at taking supplements based on books like the mood cure and online information etc. which was not very effective but did help somewhat. Getting off of SSRIs was an absolute nightmare and took several years of titrating the dose down.

I also tried several naturopaths and orthomolecular doctors which eventually led me to a gluten free and dairy free diet. I was also still using various supplements based on what I thought or felt was helping but I didn't really know what I was doing with supplements so it was mixed results. I was supplementing for copper toxicity and pyroluria which I seemed to have all the symptoms of.

The gluten free, dairy free diet was a huge improvement but I continued to have issues. I then got my genetics done with 23andMe and attempted to implement nutrigenomics per Yasko and others as well as high dose iodine for my thyroid. I have a lot of MTHFR (including homozygous 1298) and MTR, MTRR, CBS SNPS and many many others. I have a lot of genetic issues so this was another stepped improvement. Of course there seemed to be lots of detox reactions etc.

I'm in Canada so there are no good doctors here that specialize in MTHFR or nutrigenomics as the medical associations here don't permit doctors to prescribe vitamins or supplements for health conditions. This results in their licenses being revoked. So I wasn't getting tested and was on my own basically going by SNPs and symptoms. I used tools like Livewello and Nutrahacker. Acu-cell is a good reference that I use often: https://acu-cell.com/

When I went to the full methylation protocol per Fredd and Richard it caused more noticeable improvements in mental health, energy, and improved thinking, motivation etc. but there were still problems that weren't being solved such as heart palpitations, joint issues, digestion issues continued anxiety, depression etc. I thought it might be detox etc. but I was taking huge doses of B12 and folate and was concerned about whether I was doing the right thing.

At some point after a couple of years on the full methylation protocol I implemented a low oxalate diet and had another big improvement and I was feeling better than any point in my life. I have SNPs around oxalate processing and I started having oxalate detox periods interspersed with feeling really great.

Then I implemented lithium. Fredd and others said they saw huge improvement and I had SNPS that indicated I might benefit from lithium. TCNII etc. so I was hoping I would be able to reduce my b12 and folate doses as it was getting very expensive.

Not long after that all hell broke loose and I was forced to stop everything as I was literally worried I was going to die. I thought I had done damage with the Lithium Orotate but I was taking only small doses. I was waking in the middle of the night in a full blown panic sweating, palpitations, tachycardia dizziness tingling etc. with a heart rate of well over 150 sometimes almost 200. I was having neuropathy and Lhermite's sign and was losing weight. I thought I was hyperthyroid and had that tested and an ultrasound but it all came back normal. I needed huge doses of copper (20 mg/day), potassium, sodium and magnesium and calcium just to stay sane and slow down my system. I had no idea what was happening because there is very little information out there about B6 toxicity. Then I realized based on this group https://understandingb6toxicity.com/ that I had become extremely b6 toxic.

I realize now that once I had gone low oxalate my digestion had improved and my absorption of nutrients and supplements improved dramatically. Without the oxalate in my diet, my B6 dosage was way too high at 150 -200 mg of P5P per day and I had induced B6 toxicity which is Small Fiber Peripheral Neuropathy which had damaged my autonomic and sensory nerves. The high dose folate, magnesium, lithium, B2, molybdenum, zinc and high dose B6 had caused cellular level dehydration, copper and sodium deficiency which all contributed to the neuropathy. Now that I have stopped B6 and reduced all of my other supplements I am almost healed from the B6 toxicity. I don't take lithium anymore because I am able to absorb enough from food. I only supplement with iodine occasionally.

I'm at 13 months off of B6 supplement and most of my B6 toxicity symptoms are gone or minimal. I still need to supplement sodium due to blood volume issues but was able to re-start my b12, folate and carnitine and I am now doing quite well again. I have recently greatly reduced copper supplementation (huge relief!) and no longer need high dose magnesium or calcium.

I should stress though that most important piece of the puzzle for me is an incredibly strict ketogenic/paleo diet that is low oxalate, totally grain free, sugar free, alcohol free and basically zero processed foods of any kind. I avoid all chemicals and additives in food and I haven't touched any pharmaceutical product in almost a decade, not even aspirin. Obviously, vaccines are something I avoid like the plague.

I now only eat unprocessed meat, eggs, fresh vegetables and fruit and occasionally some low oxalate seeds like pumpkin or sunflower. I use beef tallow and olive oil for fats and keep my carbs low and my fat high. I try to eat as organically as possible. I also use daily coffee enemas for detoxification. Thanks to this diet I only need minimal supplementation and continue to experience improvements and I'm in the best health of my life. I am in better shape at 48 than most 25 year olds. I run 20-30 km per week, play hockey twice a week and lift weights several times per week. I haven't been sick in years. When my vaccinated family caught covid all I had with it was a mild headache for a few days. My diet is considered insane by most people but it is the cornerstone of my health protocol.

 

[Katy131]

My apologies for this long winded post:

No apologies required for this! Your story is both interesting and inspiring. How far you've come! - and mostly without the help of professionals from the sound of it. It's good to have someone here on the forum who has healed themselves to this kind of level. It gives us all hope.

I'm in Canada so there are no good doctors here that specialize in MTHFR or nutrigenomics as the medical associations here don't permit doctors to prescribe vitamins or supplements for health conditions. This results in their licenses being revoked. So I wasn't getting tested and was on my own basically going by SNPs and symptoms

I'm stunned by this - IMHO healing should start with putting in what the body lacks in vitamins, minerals, amino acids etc if necessary before throwing drugs to cover the problem at the patient. And not getting tested must have been really like working in the almost total darkness. I'm lucky that I am financially supported by my husband and that we can afford for me to go to private functional medicine doctors, but it is very expensive and I have doled out thousands to the various doctors I see over the last 18 years.

I should stress though that most important piece of the puzzle for me is an incredibly strict ketogenic/paleo diet that is low oxalate, totally grain free, sugar free, alcohol free and basically zero processed foods of any kind. I avoid all chemicals and additives in food and I haven't touched any pharmaceutical product in almost a decade, not even aspirin. Obviously, vaccines are something I avoid like the plague.

I follow Dr Sarah Myhill's protocol for CFS/ME, MCS and methylation for the most part and she is adamant that diet (PK) is the cornerstone of recovery. I have found it impossible to follow although I have tried several times over the past 20 years to do so. I do fairly well eating a 95% unprocessed Mediterranean diet and cooking from scratch every day. My weight, blood pressure and cholesterol levels have all returned to normal over the past 8 years so I think I'm doing something right. As for vaccines, I knew they might make me worse but didn't seem to in the beginning. I caught Covid a year ago but had it fairly mildly. The vaccines and the infection together however seem to have made me much more sensitive and my food allergies have ballooned in the last 2 years, undoing a lot of the work I have done with allergen immunotherapy over the past 7 1/2 years. Ho hum.

I am in better shape at 48 than most 25 year olds. I run 20-30 km per week, play hockey twice a week and lift weights several times per week. I haven't been sick in years. When my vaccinated family caught covid all I had with it was a mild headache for a few days. My diet is considered insane by most people but it is the cornerstone of my health protocol.

That's amazing! I'm so happy to see this. As I said before, it gives us all hope that we can cure ourselves ... with time and the support of others. Thank you for posting!

 

[almost]

Once I stopped the B6 the folate b12 and the rest of the methylation protocol no longer caused potassium or electrolyte problems.

@drmullin30 , I'm not clear on what you mean here. Did you stop just the B6, which meant the b12 et. al. no longer caused problems, or did you stop B6, folate, B12, and the rest of the methylation, which then no longer caused problems. I didn't catch how you were organizing that.

I ask, and I started a new thread for this, because I got my lab result back today for B6, and it was ridiculously high, as in probably 6-8 sigma, I would guess. What was your level, if I may ask?

I was stunned it was this high -- I was taking less than many, at 75mg per day, obviously too much. So now I get to go cold turkey but wondering about what you did with the other things you mentioned.

If you wouldn't mind, I'd like to know how the folate and B12 interact with the B6 toxicity. Any info appreciated. Thanks in advance.

---

Edit: I will add that I have only used the above B6 level for the last few months, and B6 at all only this year. Before, I used a multi that probably had some in. This is important, because the symptoms, weakness in legs, ataxia, began several years ago, and were originally assigned to B12 deficiency. So the recent b6 levels, while not helping, don't seem to be the cause. So, I wonder how much of my toxicity is due to inability to utilize, and the toxicity has been a slow boil.

 

[drmullin30]

I'm not clear on what you mean here. Did you stop just the B6, which meant the b12 et. al. no longer caused problems, or did you stop B6, folate, B12, and the rest of the methylation, which then no longer caused problems. I didn't catch how you were organizing that.

Hi Almost, so initially when I realized I was B6 toxic I stopped ALL b-vitamin supplements. The reason for this is that the b12 and the folate as well as B2 can cause dehydration and issues with sodium deficiency and other electrolyte problems which aren't good for people with B6 induced neuropathy which causes low blood volume and autonomic blood pressure dysfunction.

I stayed off b-vitamins for several months but eventually I re-started with very low dose folate, b12, b2 and b1 and titrated up to a comfortable level. I have read that supplement with the other b-vitamins can help with b6 toxicity but there's no literature on this. I will likely never supplement with b6 again. You should be able to get plenty from foods like chicken, bananas, beef etc.

I never got my levels checked but I was taking 4 times what you are taking and had all of the classic symptoms of small fiber neuropathy and after cessation I went into classic recoil (medical literature calls it coasting) within a few days so I know for a fact I was toxic.

Muscle weakness and ataxia are definitely symptoms that were common in the b6 toxicity group. Some people in the group became toxic with just food.

 

[Kadar]

@drmullin30 so that story with Lithium happened because Lithium raised your b6 levels to toxicity (as we know lithium raise levels of b vitamins in cells), not because lithium depleted boron? Didn't boron help then? Please share your experience. I thought you just needed more boron to manage "huge doses of copper (20 mg/day), potassium, sodium and magnesium and calcium". Because as I understand lithium raise magnesium levels and magnesium depletes boron according to one info list I found in the internet. B6 probably raised magnesium more. If you don't connect this with boron drop, shouldn't situation be temporary since B vitamins doesnt get stored in huge amounts in comparison to fat-soluble vitamins..

 

[drmullin30]

@drmullin30 so that story with Lithium happened because Lithium raised your b6 levels to toxicity (as we know lithium raise levels of b vitamins in cells), not because lithium depleted boron? Didn't boron help then? Please share your experience. I thought you just needed more boron to manage "huge doses of copper (20 mg/day), potassium, sodium and magnesium and calcium". Because as I understand lithium raise magnesium levels and magnesium depletes boron according to one info list I found in the internet. B6 probably raised magnesium more. If you don't connect this with boron drop, shouldn't situation be temporary since B vitamins doesnt get stored in huge amounts in comparison to fat-soluble vitamins..

Hi @Kadar it's been a long time! I'm not sure the lithium had anything much to do with it at all.

It may have hastened the onset of B6 toxicity by a few weeks but I was taking very small doses and I had only been taking it for a few months. I believe that the years and years of high dose B6 (p5p) just eventually caught up with me. With respect to Boron I think it provided some relief because it's a B6 antagonist and will lower b6. I don't need any Boron now.

I'm doing much better now and taking much lower doses of everything. As I said once I eliminated oxalates my digestion improved and I was able to absorb much more of the B6 and so I was overdosing in the extreme. I haven't gone back to try lithium again yet because I seem to be getting plenty of everything from food except for small doses of folate, b12 riboflavin. I still take about 2-4 mg of copper per day and 2 mg of Boron per day. I no longer need calcium or potassium and I only take a 300mg per day of magnesium and 30mg per day of zinc.

The oxalates and high dose B6 were what was causing all of my need for high dose supplements. Once I eliminated oxalates and then B6 everything got much better with much lower dosage needs.

So, all this to say I believe most of my problems for the last few years were caused by oxalates and then B6 toxicity. It's why I came back to Phoenix Rising. To warn people that B6 toxicity is way more common than people think and that most people here are more than likely overdosing on it. If you need 10-100x the RDI for any b-vitamin than you may have an absorption issue caused by celiac or oxalates or dysbiosis etc. and should focus on that instead of throwing hundreds of dollars down the drain overdosing on b-vitamins. B12 is obviously an exception as there are so many innate genetic issues that can cause problems with it and it still seems to be mostly safe for anyone. I still take 2-4 mg per day of b12 which is considered a high dose but I find my mind and energy are just much better with it than without and my genetics (SNPS) mean I will probably always need some methyl folate to maintain good health but I don't take either of those every day now. I can take breaks without any degeneration.

 

[Katy131]

Here's an update on my situation for those who are following. Perhaps it will help others too.

Over the last three months, I slowly reduced and came off my methylation supplements (mostly P5P complex). I had tried adding in methyl folate once or twice and it was not successful and I came to realise it was the B vitamins in general giving me bad symptoms, and yet underneath I felt oddly strong. I put this down to my system methylating better on its own, having been kick started by my supplementation over the previous 6 months or so. Certainly my potassium supplementation needs implied that I was healing.

With the help and advice of my functional medicine doctor, I stopped the P5P, Phosphatidyl Serine and then also my multivitamin, which contained active B vits and also seemed to still give me symptoms. I reduced my Potassium right down to approx 500 mg a day plus 3 glasses of high potassium juice. However I was unable to reduce any further without the night time palpitations and exhaustion returning, and luckily my immunotherapy doctor has agreed I can continue to take my potassium during my allergy treatments which are starting again at the end of January.

However, here's a question: I had flu 2 1/2 weeks ago (not Covid), was in bed with a fever for 4 days, very fatigued afterwards - hardly able to stand or even sit up properly - and it took me a week or so to realise that my body was needing more potassium again. I'm now back up to 900 mg per day plus 3 high potassium juices and this is only just covering my need. Does anybody else find that an infection and/or fever means their need for potassium increases for a while?