Building a supplement regime for early onset cfs

[YippeeKi YOW !!]

In the usual supplemental form of methyl-selenocysteine,

That's not the usual form, it's just a very good form.

I used, and still use, selenomethionine, as do a lot of others, with good results. And some just use plan old selenium.

The natural form of vitamin B6 is pyridoxal (P-5-P). The natural form does not cause small fiber neuropathy,

It was P5P that really did me in, whether it was small fiber beuropathy or not, who knows. I was beynd any ability to google, or, if I had, to understand and absorb that I'd just googled. Gargled. Whatever.

We're all different, and we're all gong to have idiosyncratic reactions to things that others have no issues with.

Which is why I can't think of ONE thing that works across the board with equally beneficial effect on all of us. Possibly magnesium or Vit D, but no, come to think of it, not even that ....

It's a fun, fun, funked up ME world ....

 

[Wishful]

Which is why I can't think of ONE thing that works across the board with equally beneficial effect on all of us. Possibly magnesium or Vit D, but no, come to think of it, not even that ....

Yes, I think if you did a poll on either of those, there would be plenty of responses for "no effect". I certainly can't think of anything that works for all of us.

 

[Wishful]

This is incredibly irresponsible advice, @Wishful. You might want to reconsider your post ....

Reconsidering...and not changing it. Starting with the full recommended dosage of drugs has worked well for me, and so has testing reasonable amounts of herbs, spice, and supplements. I hadn't experienced any negative experiences to convince me to go low and slow. If someone is prone to lengthy crashes, or has high sensitivity to various drugs and chemicals, then it's more risky, and low and slow is wise. If someone is feeling suicidal because they haven't found anything to help so far, then faster methods might be wiser.

I won;t even go into how much time and money testing out 150 separate ingredients would entail. I'm assuming you're just playing devil's advocate ....

No, if there was something in 150 ingredients that made a big improvement, then it would be worth trying to figure out which one. I'd start with the most likely candidates, and the cheapest or more convenient ones; chances are good that I'd find it well before the 150th. To save time, I'd take several at once. If, for some reason, I had all 150 separate candidates on hand, I could test half at once, then half of the ones in the set including the functional one; I think eight trials would identify the correct one.

For identifying the effective mineral, I started with what I had on hand. I had tincture of iodine, and I put some copper wire in vinegar to get some copper salt. Luck was with me, and one of those worked, so I only had to try both of those separately, and didn't even need to try the second one (copper) again. So, 20 or so possible minerals, and it took less than a day, and no extra expense to find the right one.

the cheaper brands often have inactives that could play hell with your system and cause considerable distress.

Again, my experience is that I've never had a problem with inactives. Someone with a history of sensitivity to such things should of course follow their own experience and shop appropriately. Someone for whom inactives have never "played hell or caused considerable distress" and who is experiencing financial distress (probably not uncommon with ME) might be better off trying 10 different inexpensive products, rather than a one or two expensive versions. It's not as though we know that any products have a good chance of working for ME; it's more like very low probability of working, so the more products you can try, the more likely you'll eventually find something that does work.

I'm certainly not encouraging everyone to take large doses of cheap products. We all have different sensitivities and different cost/benefit profiles. Both methods are valid, for the appropriate people.

 

[Tammy]

I would include zinc sulfate

 

[YippeeKi YOW !!]

Starting with the full recommended dosage of drugs has worked well for me,

Your comment that prompted my "reconsider" came after a discussion of supplements, not drugs, so your comment, above, feels a bit like a back-pedal to me.

 

[Wishful]

Well, I generally start with the full dosage for supplements too, and if that doesn't have a noticeable effect in a day or two, I'll probably double the dose. For herbal remedies, I usually don't know what amount would be recommended, so I take a reasonable amount.

 

[Mary]

How can supplements that are good for the very thing most are lacking make you worse?

Here's an example: Thiamine boosted my energy markedly - a LOT - for a day, and then hit me with severe fatigue. It turned out that it depleted phosphorous, I believe due to refeeding syndrome. If I had been taking several new things at once, I never would have been able to figure out what was going on. It took me two tries (a year or 2 apart) to figure this out about thiamine and phosphorous, but am very glad I did. Thiamine is very good for me, and now I've added in a phosphate supplement - without it I would not be able to take the thiamine.

Methylfolate did the same thing - really nice boost in energy (I'd already been taking methylB12 for years), followed by severe fatigue a day or two later, which was caused by my potassium tanking. Methylfolate caused my cells to divide more rapidly and start doing what they were supposed to do, which increased my need for potassium, which induced a functional potassium deficiency. Blood work does not always tell the full story on potassium either - people with ME/CFS can have normal potassium levels on blood work but low intracellular potassium. (see this post)

I believe this is what happened with me. My blood work was always in low-normal range. Anyways, because I had been reading Freddd's posts about methylation, I was aware of the potential low potassium issue (so grateful I was aware of this!) and was able to deal with it by titrating up to 1000 mg potassium in divided doses.

 

[Mary]

Creatine .... bit me on the @ss hard, haven't tried adding it back in yet.

Again, start low (1gram) and slowly increase your dose. Creatine can improve the speed of digestion and improve muscle strength. But it may aggravate digestive problems, so go slow if you have digestive issues.

There are two forums of creatine: creatine monohydrate and creatine hydrochloride. Creatine monohydrate is known for causing digestive problems (see this post and a little googling will give you more info - here's one article: https://www.gnc.com/brand/jym/fitness-articles/jym-creatine-hcl-vs-creative-monohydrate.html )

I think creatine hydrochloride is easier on the body so it might have been creatine monohydrate which was so rough on you @YippeeKi YOW !! - I'm just guessing here. I had been taking a relatively small dose of creatine hydrochloride with no problem for quite awhile, 750 mg. a day. I quit some weeks ago thinking I didn't need it any more. I also quit d-ribose around the same time I think. Anyways, recently I've been getting more and more fatigued, and puzzled, because certain things (like Cellfood) had been boosting my energy, and today a lightbulb went on, and I took 2250 mg. creatine HCL + 15 grams d-ribose and by mid-afternoon I had energy I have not had in a few weeks. I was so glad to get some energy back, and dismayed at the same time realizing how dependent I am on my supplements for functioning! I won't keep up the 2250 mg. a day of the creatine HCl, hopefully will cut back to 750 mg, but will see how it goes. And I can't say if it was the combo of the creatine HCL and the d-ribose which boosted my energy or just one of them, but for now I'm sticking with both of them until I feel like experimenting again!

 

[Mary]

• START LOW AND GO SLOW. Take the smallest possible dose an increase it gradually and by small increments. If you react to it at some point, you wont have a whole load of it in your system to weigh you down for God knows how long ...
• The 2nd Law of ME is: Never start more than one new thing at a time, and try to avoid taking those gazillion ingredient cure-alls, cause if something goes wrong, you'll have no idea which of the 150 ingredients caused the issues for you, so nothing will be learned.

@Ronagrenade2020 - I think this is essentially very good advice. I do tend to start new supplements at a bit higher than the smallest dose possible, but definitely not at a high dose. And I think starting one new thing at a time is essential. Otherwise you won't know what is doing what to you. I gave examples in an earlier post of very good and very bad reactions almost immediately to methylfolate and thiamine, caused by different refeeding syndrome reactions.

Here's what's helping me the most with energy etc. But as noted several times, we are all different. If you can get Nutreval testing done, that can be helpful. It pinpointed a severe B6 deficiency I had.

Thiamine (helps with energy, depletes phosphorous so have to take monosodium phosphate as well)
P-5-P (deficiency shown on Nutreval, helped with energy)
Methylfolate (helps with energy, depletes potassium so I take potassium gluconate as well in divided doses)
Methylcobalamin
d-ribose
creatine hydrochloride - supposed to be easier on the stomach than creatine monohydrate - I've never had a problem with creatine hydrochloride and it has helped with energy
CoQ10
Drenamin (Standard Process)- adrenal glandular - my chiropractor who does muscle testing found my adrenal problem. And adrenal glandulars have been very helpful to me over the years, right now I'm on a very small dose. When I first got sick I had to take a lot more.

Be careful with pantothenic acid. I took that for several years. It initially helped my adrenals which were quite weak. However, I later learned that it also depleted taurine and taurine was necessary to deal with msg-induced excitotoxicity. I ended up with a severe msg sensitivity. Once I learned about pantothenic acid and taurine connection, I stopped the pantothenic acid and started taking taurine, and eventually was able to have a meal with soy sauce without being wide awake until 3:00 a.m.

A lot of people swear by B2, but I don't do well with supplemental B2. I don't know why. I do take a good B complex - Jarrow B Right and think I get enough B2 with that.

I forgot a couple more!

BCAAS (branched chain amino acids) - cut my PEM recovery time in half - I won't be without these
Vitamin D3 (I get blood work done to check my levels)

I've also been taking selenium for a long time so I don't notice anything from it but assume it's good for me

Also have been taking ALA and NAC forever - I assume they're good for me

At one time l-carnitine (2000 mg.) markedly boosted my energy for 10 days and then stopped. It helps some people but I finally gave up on it.

ETA: Cellfood has also been helping me the last couple of months, but apparently I still need most everything else as well, though it has enabled me to cut my thyroid med in half.

 

[YippeeKi YOW !!]

I think creatine hydrochloride is easier on the body so it might have been creatine monohydrate which was so rough on you @YippeeKi YOW !! - I'm just guessing here.

It's been awhile since I stopped the creatine, and it's embarrassing to admit, but I cant remember what type (drooling 'duh' emoji) ...

I have, however, made a note of creatine hydrochloride for future trialing, once I get up the courage ...

Thank you for this, Mary, much appreciated !!!

 

[Wishful]

@Mary , one possibility is that both Cellfood and the creatine HCL are benefiting you from both being acidic. I'm not sure what mechanism would be involved, but it's something to think about. Have you tried a stomach acid supplement before, or noticed an effect from vinegar or any other acid?

 

[Mary]

@Mary , one possibility is that both Cellfood and the creatine HCL are benefiting you from both being acidic. I'm not sure what mechanism would be involved, but it's something to think about. Have you tried a stomach acid supplement before, or noticed an effect from vinegar or any other acid?

@Wishful - re creatine, there's tons of information on-line about how creatine helps increase energy. Here's one article: https://www.healthline.com/nutrition/creatine-for-muscle-and-strength It's also mentioned in Hip's PEM busters thread: https://forums.phoenixrising.me/thr...or-prevent-pem-post-exertional-malaise.48438/ I don't think the benefit of creatine HCL is from the HCL part of it. Though I do think the HCL part of it is what makes it easier for my stomach to tolerate. https://www.gnc.com/brand/jym/fitness-articles/jym-creatine-hcl-vs-creative-monohydrate.html

I've been taking betaine HCL with pepsin for many years for my digestion. It has helped my digestion a lot. Many people with ME/CFS have low stomach acid. It seems to go along with our many strange and varied problems.

About Cellfood - my oldest sister had a major stroke about 6 months ago. She's been mostly bedridden since, could only talk in a whisper, her right hand was basically useless. 3 or 4 weeks ago I brought her some Cellfood. 3 days after starting it, she asked to be gotten out of bed and wanted to play cards. Before she could only tolerate being up for 10 minutes at the most, at a time. She stayed up and watched a 1-1/2 hour cooking show with her daughter-in-law, making comments. Her voice has gotten noticeably stronger - she's no longer just whispering but is actually talking. And she was using her right hand to pick up pills and using the salt shaker with it the other day. This all started after the Cellfood. It could all be a coincidence, but we don't want to test right now! See this article about oxygen helping stroke and brain injury patients: https://www.sciencedaily.com/releases/2013/01/130123144218.htm

 

[Wishful]

I'm not arguing that increasing blood oxygen couldn't have beneficial effects. I just don't see any reason why Cellfood would increase oxygen. From Consumerlabs.com:

"CELLFOOD® (NuScience Corporation) is marketed as an "oxygen+nutrient supplement" for body detoxification, providing bioavailable oxygen to the body. However, the concept of ingesting oxygen is nonsense."

I couldn't find any evidence that Cellfood increases blood oxygen (or cellular oxygen). It seems to be a baseless claim. That's why I wondered if maybe it's acidity had some effect. If you haven't noticed the same effect with betain HCL, it's probably not that, and why Cellfood works for you remains a mystery.

 

[pogoman]

Be very, very careful with collagen and gelatins in general. In some of us, they produce a distinctly unpleasant effect.

They're produced by hydrolyziing a whole protein, like milk, and breaking the bonds between the amino acids, which creates some real Devil's Deals, like free glutamic acid, which can cause an imbalance in your GABA/Glutamate neurotransmitters. These are neurotransmitters that calm or agitate you, respectively, and both play an important role in your CNS and brain. But when they're out of balance, bad things can happen, ranging from mild anxiety to extreme, crippling panic attacks, heart palpitations, chest and head pressure, worsened ability to sleep, and a host of other unpleasant manifestations.

It's hard to explain why this happens, since your digestion will break a whole protein into component amino acids when you eat meat or cheese or any other protein source, but I've lived it, and it's a deep, deep, sticky, gluey pool of misery I dont want to every revisit, havning been trapped there for several years without understanding what was going on, or what was wrong.

I was using a highly regarded form of whey protein to round out my already diminishing diet, and it was just merry effing hell.

If you do want to try a form of gelatin-bsed protein, I'd stay away from collagen, which is even more highly processed than gelatin, which itself is already pretty processed. The more processed, the more potential for reactions, tho not in all of us. Gelatin contains the same aminos in pretty much the same proportions, and I've never found the statements regarding how much more easily assimilated the collagen form is to be accurate, at least not for me.

I think we've discussed collagen before?
I mentioned collagen over amino acids as I've seen improvements with the former.
I like the Great Lakes brand, tried a couple other brands but with Great Lakes I see improvements.
Whether its gelatin collegen or collegen only I don't know, I do remember there are different types of collegen depending on the source so that may be why it has differing effects on people.

I tried a gaba supplement once and yeah it was not pleasant.

FWIW early in my self treatment my muscle issues a combo of emulsified MCD oil and protein powder really did help me from getting sore and PEM.
My endo had me stop due to my lipid issues, I've retried it since then but as that brand of MCD oil is no longer around the regular stuff doesn't help.

 

[pogoman]

Here's an example: Thiamine boosted my energy markedly - a LOT - for a day, and then hit me with severe fatigue.

For me thiamine is something I have to be careful of due to its sulfur content.
MSM and DMSO the same, within a day or two tiredness, sleepiness and postnasal drip.
Which is strange, have had temporary improvement on thiamine before.

 

[YippeeKi YOW !!]

I like the Great Lakes brand, tried a couple other brands but with Great Lakes I see improvements.

I used Great Lakes too, and like you, have found it to be the best answer. I used the gelatin form as opposed to the collagen form for the reasons I stated above.

I had to stop using it when I started having multiple crappy reactions and didnt know what was causing them, so had to cut out pretty much everything, leaving me with a seriously restricted diet. Have ben slowly adding stuff back in, and next on my list is the gelati which I found helped joint and even muscle pain a lot.

I tried a gaba supplement once and yeah it was not pleasant.

Same here. The reaction ranged from none, to pretty unpleasant the second and third times I tried it. I stay away now ....

For me thiamine is something I have to be careful of due to its sulfur content.

We seem to have similar metabolisms. For a long time, I had to avoid anything even remotely related to sulfur, including selenium, thiamine and multiple other supps, and MSM and DMSO, which I used on a painful knee followng a slip-and-tumble on the stairs here. It did close to nothing for the pain, and launched me into a world of exhaustion, anxiety, and multiple other bad responses.

MSM and DMSO the same, within a day or two tiredness, sleepiness and postnasal drip.

It hits me within about 3-4 hours.

The mysteries of why which does what still elude me, but I've become much better at noticing reactions and pretty much knowing what to cut out to test what's causing them.

 

[Mary]

For me thiamine is something I have to be careful of due to its sulfur content.
MSM and DMSO the same, within a day or two tiredness, sleepiness and postnasal drip.
Which is strange, have had temporary improvement on thiamine before.

@pogoman - the fatigue I got 2 days after starting the thiamine was from phosphorous depletion caused by the thiamine, due to refeeding syndrome. The thiamine definitely boosted my energy, but it increased my need for phosphorous, thereby inducing a functional phosphorous deficiency. Once I increased my phosphorous (initially with kefir and then later with a monosodium phosphate supplement), that horrible fatigue went away, and I was able to keep taking the thiamine, which i've been taking now for 3 or 4 years, and I still need to supplement with phosphorous.

 

[Mary]

I'm not arguing that increasing blood oxygen couldn't have beneficial effects. I just don't see any reason why Cellfood would increase oxygen. From Consumerlabs.com:

"CELLFOOD® (NuScience Corporation) is marketed as an "oxygen+nutrient supplement" for body detoxification, providing bioavailable oxygen to the body. However, the concept of ingesting oxygen is nonsense."

I couldn't find any evidence that Cellfood increases blood oxygen (or cellular oxygen). It seems to be a baseless claim. That's why I wondered if maybe it's acidity had some effect. If you haven't noticed the same effect with betain HCL, it's probably not that, and why Cellfood works for you remains a mystery.

@Wishful , I know. You've said this many times. I think you're wrong, but there's no point arguing about it.,

(btw, if you had tagged me, or replied to my post, I would have seen your response sooner.)

 

[YippeeKi YOW !!]

@Wishful , I know. You've said this many times. I think you're wrong, but there's no point arguing about it.,

Bottom line: If it works, it works. The rest is just persiflage .....

(btw, if you had tagged me, or replied to my post, I would have seen your response sooner.)

Oh wow !!! This drives me nuts, too. Especially when I have to stumble across a challenge to something I've posted two weeks before ....

 

[Mary]

persiflage

Great word! I've seen it before but don't think I've ever used it, and plan to add it to my active vocabulary!