CFS supplement list . What works and what doesn’t.

[Hip]

But it is not about ONE medication. Any intervention can affect multiple genes, multiple pathways.take Take B6, for example, is it the methylation effects, the heme effects, or the sphingolipid effects, or the dreaming?

No doctor, functional or otherwise, is capable of calculating all the interacting effects that multiple supplements and medications may have on multiple metabolic pathways, as it is all far, far too complex, and any doctor who pretends he can is, well,... just pretending.

 

[Hip]

In the UK, functional medicine first appeared in around the late 1970s, and focused on allergy and environmental factors that impinge on health, as well as nutritional factors.

This new movement was called allergy, environmental and nutritional medicine, though these days is often called ecological medicine. Here is a brief history of the British Society for Allergy and Environmental Medicine. Ecological medicine is pretty much the same as functional medicine.

I got interested in it during the late 1980s, and thereby I improved my health considerably by discovering that I was gluten intolerant. At that time, almost no one in the general public knew about such things as gluten intolerance.



So the principles of ecological/functional medicine I think are useful and they can be helpful; but let's not pretend that ecological doctors are calculating all the interacting effects that multiple supplements and medications have on the body. They are not. They are at best just using educated guesses.

 

[pamojja]

@pamojja ;

I'm only writing this out of concern for what's going on here.

Firstly, I hope you are finding a way to manage this iron overload, of course it isn't all about copper.

Thanks for your concerns. In my case the higher iron markers could just as well be a sign of anemia, where I also found no way to manage yet. However, beside the major remission of a walking-disability in '15, it was possible to avoid any PEM since 1 year. Therefore I have to assume at least some things I'm doing right. Too many things going on for doing everything right.

 

[Crux]

@Learner1 ;

Don't you ask the most challenging questions !

Regarding MRI to detect brain iron , I haven't seen that QSM is experimental, it's been around sometime, and is considered to be a more accurate method of imaging.

I don't understand these imaging techniques, it's what I've come across when reading about brain iron overload.
Since the brain has high amounts of metals naturally, it's difficult to discern what's excessive.

This article suggests that gadolinium is used because it doesn't have metals.

https://link.springer.com/article/10.1007/s11604-016-0532-8

"However, compared with gadolinium, the pattern of iron enhancement is heterogeneous and variable, so iron-based contrast agents cannot be used instead of gadolinium-based contrast agents (GBCAs) [80, 81] "

I had an MRI , more than 10 years ago to detect masses or lesions in pituitary, nothing of that nature was detected, so the endo pronounced me "stone cold normal". umhumm ( I didn't pursue a neurologist because I had no faith .)

I don't have the wherewithal to get a more sensitive brain MRI, so I've just assumed that there's some excess iron clanking around in there because of my neurological symptoms. (better now, not gone)

I was forced to try to find a way to deal with the pain and unsteady gait that was so debilitating. Body parts going numb, falling, losing cognition....doctors were failing. Thank goodness for researchers and their brilliant papers !

With copper, there is so much bias against it, even in the science world, that I just choose the pro copper papers. I mean yes copper can be toxic just like every other metal, and every vitamin. Yes copper can be angiogenic, just like every metal or vitamin, even our B's.

Copper needs to be managed, but it's still difficult to understand what it's doing. One interesting fact about it is that when a UTI is occurring, copper is mobilized to the urinary tract to fight it. Copper is an excellent antimicrobial, but not infallible. E.coli has its ways...

Some people believe that if copper is normal to high in serum , but ceruloplasmin is low, then that indicates unbound copper. Copper is also bound to albumin, etc., so I doubt that low or normal ceruloplasmin indicates unbound copper. So much is still unknown.
https://www.j-alz.com/content/alzheimers-disease-and-copper-biochemistry

Zinc can be low because there are microbes that utilize it for growth. The body may be sequestering it for that reason. Also, iron can compete with zinc for absorption in the intestines. Iron usually wins because we mammals haven't evolved to manage this extreme exposure to it from food fortification, air pollution, so on.

 

[andyguitar]

Branched Chain Amino Acids (BCAA) have been said to be helpful by quite a few people on this site and elsewhere. Unlikely to clash with the other things you are taking. To begin with- first week- try half the dose it advises on the pack as the full dose can be a bit of a shock to your system to start with. If all goes well then try the full dose. Not a good idea to take them in the evening as they can keep you awake.

 

[Crux]

@pamojja ;

Well I don't know much, but will look it up.

I'll just write first that I don't think you have iron deficiency anemia. The iron panel shows that.

RBCs are low, as hemoglobin and hematocrit, so there is a mild anemia, but the other measures don't fit with syndromes such as Myelodysplastic syndrome or Aplastic anemia, which is good. You don't have low white blood cells that these conditions present with. They do present with low RBC and low platelets.

Of course, check with your doctor about this, you probably have already.

ESR high, nonspecific, but inflammation is high.

MCV, MCH are high . Even though they may indicate low folate, B12, they may indicate liver trouble. ( I've had this, definitely liver trouble .)

I'll keep looking around....

 

[Crux]

@Learner and everyone;

I can't resist posting this link about copper deficiency, it just turns me on.

https://openheart.bmj.com/content/5/2/e000784

Here's a case study about an unfortunate fellow who wound up with copper deficiency from taking too much zinc.
https://www.cureus.com/articles/138...dary-to-copper-deficiency-in-an-adult-patient

OK that's enough.

 

[pamojja]

@pamojja ;

Well I don't know much, but will look it up.

But only if you want complete confusion, I could PM you a link to all my labs.. Of course, the most likely anemia in my case is of course the one of chronic diseases (PAD, COPD, T2D).

The most confusing to me is: whenever I made the most health improvement, I always before had to smolder about worst lab results. Or worst for some, and best for others areas in labs. Just now had my best LDL (down 63% from worst) and HDL (up 108% from worst)!

ESR high, nonspecific, but inflammation is high.

Go to South-India now for 7 years each winter during vacation, and blood tested there almost always showed much higher inflammation, in exchange liver and kidney markers always better there. Except CRP at 8.4 mg/L late last year (almost as high as with chronic bronchitis in 2012!), now after India down to 2.3 again.

Here's a case study about an unfortunate fellow who wound up with copper deficiency from taking too much zinc.

Don't think that is a good example. This patient had so much more serious problems possibly contributing much more then zinc itself, for which they omitted to mention the daily dose or any blood levels. If these would have been remarkable, they would have been mentioned to support their conclusion. Pure speculation.

This is the case of a 27-year-old male with a history of traumatic brain injury and quadriplegia, with chronic respiratory failure on home ventilator support, suffering from zinc toxicity induced hypocupremia with resultant anemia. Micronutrient deficiency is a potential cause of anemia, especially in risk population and must be considered, as it is often easily correctible.

Also gross estimations of copper intake in general populations might not apply to anyone here. For example the last 10 years got about 4.2 mg/d from diet (daily nuts, dark chocolate and cocoa powder) and 1 mg from supplements/mineral water in average. The conclusions of the fist linked study therefore simply does't apply to me:

In the EU and in the UK, half of the adult population consumes less than the recommended amount of copper, and in the USA and Canada, at least a quarter of the population consumes less than the estimated average requirement. And other studies have found that over 80% of the population may get less than the RDA (0.9 mg/day) for copper from food. Around one-third of diets contain less than 1 mg of copper daily and 61% contain less than 1.5 mg with only 18% of diets exceeding 2 mg/day. Thus, marginal copper deficiency may be quite common.

Neither does this generalization:

Since the average American consumes around 100 pounds of sugar annually, this may contribute to copper deficiency.

 

[Crux]

. Of course, the most likely anemia in my case is of course the one of chronic diseases (PAD, COPD, T2D).

Anemia of chronic disease does not present with elevated serum iron. Usually, ferritin is elevated, but not always.

https://www.merckmanuals.com/profes...ient-erythropoiesis/anemia-of-chronic-disease

There are plenty of cases regarding zinc induced copper deficiency neuropathy.

I mean, zinc is great, and I take it, but people are encouraged to take huge amounts of it, even by doctors. It can cause some issues if dosages are too high and prolonged.

Even though denture creams have stopped adding toxic amounts of zinc to their products, now docs are recommending huge amounts of zinc for age related macular degeneration. (AMD) My MIL and FIL are taking it. (He's a retired doc). My neighbors were taking it, but stopped because they were having fatigue. ( I informed them)

I would recommend that either you start a thread, or bring up one that pertains to some of these blood tests. I would participate. Even though not many people respond, I believe some would benefit from this information.

 

[pamojja]

I would recommend that either you start a thread, or bring up one that pertains to some of these blood tests.

I don't have any symptoms of zinc induced copper-deficiency neuropathy, but many indications of low zinc (despite taking in avg 48 mg/d as supplement, and having 13 mg/d from diet during the last 10 years) correlating with labs. Also my improvements during the last year have been phenomenal to me: No more PEM since about a year!

While you say it turns you on, this is simply not my topic, sorry. Mine is the years-long standing antagonism of high normal copper, against bringing zinc up again to more healthy levels. I'm slowly getting there. And contrary to your dis-advise, it took longstanding high dose zinc supplementation.

We're all different due to bio-chemical individuality, different medical history, lifestyle-factors, metamolism and genetics.

 

[Crux]

@pamojja

I didn't even direct that post to you. You've long been dissing copper.
Good luck with your improvements.

 

[pamojja]

I didn't even direct that post to you. You've long been dissing copper.

Then please make that clear somehow, by quoting me I always feel addressed.

By taking in average 5.2 mg/d of copper from diet and supplements for 10 years, I certainly never dissed copper. But always sought to find the right balance.

Be more careful with the wording you use, especially with non-english speakers, they might look it up for the exact meaning:

dis
or diss (dĭs)
tr.v. dissed, diss·ing, diss·es Informal
To show disrespect to, often by insult or criticism:

Which to me seems too much loaded, pointing to a rather out of balance view with you.

 

[Mary]

T2D controlled with diet, and since 1 year I'm free from PEM (before almost constant).

@pamojja - what is T2D? And to what do you credit being free from PEM?

 

[Mary]

@Snowx997 - as someone else pointed out (I don't remember who right now, sorry!), branched chain amino acids might help you. They've cut my PEM recovery time in half. I take 4000 - 5000 mg. a day in divided doses, on an empty stomach - half at least half an hour before breakfast and half at least half an hour before lunch. @ljimbo423 has had very good results taking around 16000 mg (!) but that's way too high for me. I tried 10000 mg. and got bad insomnia so am sticking with my dose. They can also help with energy.

Also, how much of each of the B vitamins are you taking? e.g., a few years ago I found that I had to take two 5000 mcg. doses of liquid methylcobalamin sublingually a day, to notice any effect. Now I get by with one dose, but had to take two doses for quite awhile. My blood levels were always high but that was meaningless. It had nothing to do with how much was being utilized in the cells. On hair analysis, my cobalamin was always just about undetectable despite doing injections (self-administered 3 x a week for a few years). The liquid form is the best for me.

I've taken a good B complex for years, but found through experimentation that I needed extra B1. Taking 100 mg. gave me a good boost in energy and gradually worked up to 200 mg. So when you say you take B1, how much are you taking?

Nutreval testing showed a severe B6 deficiency and I had to work up to 150 mg. of that a day, in the form of P-5-P and that helped my energy.

And metafolin, or methylfolate made a big difference in my energy, and I'm now taking 2000 mcg. of that a day.

I would also urge you to look into a possible potassium deficiency, and perhaps even phosphorous. When I first started taking methylfolate, it gave me a nice boost in energy followed by severe fatigue. It caused my potassium levels to tank, and I had to titrate up to 1000 mg. of potassium gluconate a day in divided doses to alleviate the fatigue. Freddd writes about this. And this was DESPITE normal potassium levels on blood work. Richvank wrote about how persons with ME/CFS often have low intracellular potassium despite normal blood work here.

Any easy way to find out if you need more potassium is to drink some low-sodium V8 - high in potassium - I'd recommend maybe 3 glasses or so and see if it helps with your fatigue. So I've been taking 1000 - 1200 mg. potassium gluconate in divided doses (including middle of the night) since 2010 when I started the methylfolate and almost never have symptoms of low potassium. Interestingly, when I developed the low potassium after starting the methylfolate, I realized it was very familiar - I'd had those symptoms off and on even before starting the methylfolate, but never knew what was causing this awful fatigue which was different than PEM. And my blood work was always normal.

B1 - thiamine - also boosted my energy markedly the first time I took it, which was followed the next or the day after that by severe fatigue. The first time this happened I quit it - I couldn't handle the fatigue. A few years later I tried it again - same reaction - only this time I was familiar with refeeding syndrome (which is what happened with my potassium and methylfolate). But it felt different than when my potassium tanked, and potassium didn't help with this fatigue either. So after doing some reading I speculated that the B1 might have caused my phosphorous to tank - hypophosphatemia is the hallmark of refeeding syndrome. I looked up sources of phosphorous, found that dairy products were high in it, drank several glasses of kefir, and sure enough after many hours the fatigue abated and I was able to keep taking the B1, which I badly wanted to do. I found that I needed to either drink a lot of kefir or take a phosphorous supplement a couple of times a week to keep my phosphorous levels up.

Ideally I'd have a doctor to work with on all of this, but I don't. So I read a lot and carefully experiment and it's working out. Everything I try, my motto is start low and go slow.

 

[pamojja]

@pamojja - what is T2D? And to what do you credit being free from PEM?

Typ 2 diabetes.

My PEM was constantly caused by 1 of 2 part-time jobs, where I had no control over the amount of working-hours, or their time. Therefore finally quit 2 years ago. And having been able to do perfect pacing for this long is certainly the main reason.

Additionally a little more than 1 year ago finally found a GP who agreed to give me inexpensive Mg-sulfate IVs against my longstanding and intractable Mg-deficiency (substantially contributing to every of my conditions). Also had my only root-canal pulled at the same time.

Due to being able to pace so perfectly to my limitations, I only recognized on 2 occasions something is giving way: Last summer our company had a 2-days long meeting. Usually already with 5 hours interactions symptoms of exhaustion, pains and concentration difficulties set in. But not on that occasion.

Inspired by this success, I dared in autumn what I couldn't have done the last 10 years due to my absolute 10 hrs/d sleeping need, and did a 10-day Vipassana meditation course. Though afterwards I immediately returned to my 10 hrs sleep schedule, during that 10 days it hasn't been an issue at all. Only had to meditate for the first time in chairs due to some pain.

And of course, being also font of starting low and going slow, my supplement-intake changed further too. Especially some B-vitamins at relatively low doses compared to others, have increased intake the last 2 years (B1, B2, B6).

Despite having been able to work only 4 regular hours a day with no social life left the remaining time due to PEM, my ME/CFS compared to others would have to be classified as mild to begin with.


PS: One thing that I was still able to, though taking the risk to experience PEM for at least a week, was to fly to a South-Indian beach for at least 6 weeks each of the last 7 winter for vacations. That really helped on many fronts, like having at least once a year some real social interaction I could choose, overwhelming my fight and flight-response with pure rest, being in nature 24/7 instead of a small city-flat, vitamin D and whatever else available from sun radiation, access to traditional Ayurvedic preparations in amounts at home I couldn't afford. And being able to leisurely swim in the open ocean (at home very limited due to cold water temperatures), being able to build up to 40 min at a stretch each time.

The first time I did this, it finally healed an for a whole year intractable chronic bronchitis. This year, already haven given up on any further improvement in this respect, it was possible to swim 70 min at a time the last 2 weeks. And also for the first time no PEM after the long distance flights.

 

[Mary]

@pamojja - thanks for the detailed reply - I'm really glad for all the progress you've made!

 

[ljimbo423]

@ljimbo423 has had very good results taking around 16000 mg (!) but that's way too high for me.

I actually got up to 20 grams a day for about a week. I felt great!! I had tons of energy to point where almost felt like i was vibrating! I couldn't stay at that dose though because it interfered with my sleep.

I'm now only taking 12.5 grams a day. 8 in the morning and 4.5 in the early afternoon. Even at this dose though, it makes a big difference in my energy and lowers my PEM to some degree.

Nutreval testing showed a severe B6 deficiency and I had to work up to 150 mg. of that a day, in the form of P-5-P and that helped my energy.

P5P gives me a big boost in energy, even at only 20 mg a day! I stopped it a couple of weeks ago and felt much more tired. So I started it again and felt almost an immediate increase in energy.

 

[BeADocToGoTo1]

@Snowx997 -

...Any easy way to find out if you need more potassium is to drink some low-sodium V8 - high in potassium - I'd recommend maybe 3 glasses or so and see if it helps with your fatigue...

Potassium and B1 as Mary mentioned were a big help in my case as well. Another thing that I learned was that B2 is needed for B6 and B9 activation, so I also added B2.

One note of caution on drinking juices and V8. V8 can be hard on the stomach as it is quite acidic. But more importantly, it has added ingredients like sodium, flavoring, and preservatives, it is non-organic and some are in BPA lined containers. V8 is high in sodium, which will impact potassium levels negatively. Low potassium and low magnesium levels often go together. You are better off finding a clean electrolyte or potassium supplement, or make your own vegetable blend, but with the whole organic vegetable. Also, do not forget about the considerable sugar hit without any fiber, fat or much protein to help with the glucose/insulin spike you might get from it.

 

[Mary]

@BeADocToGoTo1 - the main reason I recommend low-sodium V8 is because it is low-sodium, and also is high in potassium, higher than regular V8. Many people are reluctant to take a potassium supplement because everything you read screams "don't take potassium! It's dangerous, etc." when the truth is low potassium is very common and low potassium can cause cardiac issues. And it's almost impossible to get too much potassium in food or taken orally. The RDA for potassium, as I'm sure you know, is around 4500 mg. so the extra 1000 - 1200 mg I take a day is roughly 1/4 of the daily RDA.

Having said this, you're right, organic juice is better and if one is able to make their own juice, that would be great. But many lack the ability to even do that. Though you can find organic vegetable juice blends, which are pricey.

low-sodium V8 is cheap and readily available, and if a person has low potassium but is reluctant to take a supplement, then drinking several glasses of V8 should give them an idea if their problem is low potassium, because they generally will start to feel better within a couple of hours. Then they can make a decision about whether or not to take a supplement or find an alternative source.

And many people at this point might go to their doctors, get their levels checked, the doctor will say you're fine, when in reality they may not be, because of the propensity for people with ME/CFS to have low intracellular potassium despite normal blood levels, as I did, as explained in the link in my above post.

By the way, I did try B2 and reacted badly to it. There was a major thread about B2 a few years ago and people raved about it, but I did not do well with it. I do take a good B complex so maybe I get enough B2 that way. But I do know a lot of people do well with B2. We are all so different!