Supplements do not have any real effect on symptoms

[Misfit Toy]

@leokitten -I understood what you are saying. You are at a place where you don't have to stop working. Your body is allowing you to be able to do so and there's where it's at. I was like that for years. And then, one fine day that all ended.

And, I am not even sure pacing does me any good. I can feel just as awful when I do nothing as when I push, so for me, if I have a good day....I am out the door!

If you are well enough to work, then do it. No need for scorn here. I didn't want to give up my job, school, etc because there was no guarantee that I would get better. Sometimes, for me, doing nothing makes me feel worse and sometimes I have no choice but to do nothing because I am that ill. I wasn't like that for years.

As far as supplements. I have had some work, but not always and sometimes I wonder if it's just a placebo affect.

I agree with Adreno, it's about fine tuning. When I went to an orthomolecular doc, he tested me thoroughly and put me on 30 pills a day of supplements, vitamins, you name it. I felt a major difference, but the problem was, it wasn't necessarily for the better...I had more energy except for a few things:

The supplements and vitamins were pushing me and changing my personality.
I was hormonally revved up from P choline and NADH. I also gained 25 pounds...
I didn't feel like me anymore.

That is not everyone and he had me on a concoction that clearly was not agreeing with me, but it got me through college and even working until I went off of them. So basically, they were a bandaid.

I am sure vitamins, etc work for people. But trying to figure out what to take on our own, you basically have to be a doctor to do so and I am not into biochemistry. I hate it. It's too much work and our bodies are ever changing.

I also feel (sometimes) that people say something is working because they have to have that hope. Or, maybe it's helping momentarily and at some point it stops. I see this all of the time in real life and somewhat on PR.

Our bodies with ME are so freakish that what worked for a while can just stop or make us sick.

Vitamin D does nothing for me and fish oil makes my pain go nuts. Go figure.

 

[leokitten]

@SOC I had read your other post in this thread and I guess you deleted it. Sorry to have upset you I didn't mean to.

I know you said people like me with ME/CFS of 6-7 activity level or higher have choices but honestly we are also stuck in a different type of prison when it comes to choices compared to people with more severe versions of the disease. When you can still work full-time even though it is a major struggle and you don't have any family or anyone to fall back on if you make the drastic decision to stop working for your health then you are stuck without choice. A person needs medical insurance and needs food and a roof over their head and therefore we have no choice but to continue to work full time there is nothing we can do about it.

Also about the aggressive resting/pacing when you have a milder form of the disease your body just doesn't let you rest as much as is needed, again there isn't any choice. It's not because it was "too much" to me, my body couldn't keep resting the amount that I needed to get better. When you have a milder form of the disease I find that without drowning yourself in sleeping pills constantly your body just doesn't allow you to rest as much as you should you just can't do it if you aren't sick enough that you are forced to. I hope you can understand that.

Everyone on the other thread I started about working full time including yourself said you continued to work until you collapsed and were forced to stop. If you really had a choice why did you continue until it made you so disabled that you were sicker than ever? It's because sometimes we don't have a choice, you have to continue to work until you become so disabled that you cannot.

I understand this completely but as I've stated in other posts it is just not realistically possible for many of us so I'm trying to find other solutions. There is no more pacing I can do without ending my career and/or potentially driving my partner out of my life.

Imagine with any other major disease if you were to tell a person "well the only way you are going to get better is to drop your career, stop working, completely stop your life to focus totally on your illness and managing it for the next X years and maybe it will improve". It's just not realistic at all. Even people with severely life threatening diseases don't do this, e.g. cancer patients come back to work and continue with their lives.

I think my text here might have been a bit misunderstood and I'm very sorry about that. I should have rewrote it, that it's not always possible for a person with ME/CFS who can still work full time, i.e. PR activity level 6-7 or more, and in certain life situations to be able to make such drastic life changes.

Again I don't have any real family to support me financially or otherwise if I am forced because of declining health or make the decision to preemptively to stop working or work part time. I wasn't married to my partner for years before getting ME/CFS and therefore I didn't already have a strong, well-established relationship long before this disease hit, this make a big difference in terms of strength of the relationship to be able to deal with the mess that the disease brings with it and the drastic life changes that you have prescribed.

My partner and I met one month after I got ME/CFS and at the time I was completely at a loss as to what was happening to me and was hiding it until I couldn't hide it anymore. But my partner never knew me before I got ill, we've only been in a relationship for just over 2 years, and when you have a mild to moderate form of ME/CFS people tend to understand less because on top of not seeing any hugely obvious physical changes the other changes are not as severe all the time as people with more severe versions of ME/CFS. Or maybe just some people, if they weren't with you for years before and saw how healthy you were and see how grossly the disease has changed you then they have more trouble understanding why they need to make the very drastic life changes that are needed when being with a person with ME/CFS.

I'm sorry if I was not understanding as well how supplements can effect people with more severe ME/CFS. I understand now from this thread that maybe they might have less of an effect the milder you are.

Finally I just want to say that we all have to remember that PR is not representative of the ME/CFS population. There are approx 13000 members, and of that approx only 1000-2000 or so are really active contributing users. Of the minimum 1 million people who have ME/CFS in just the U.S. and the millions who have this disease across the globe this basically equates to PR representing very little of the ME/CFS population. From what I gather PR is predominantly people with moderate to severe ME/CFS and this tends to dominate the environment. People like myself with mild ME/CFS (levels 6 or above) are grossly underrepresented, I think in my thread on working full-time almost everyone who posted there worked in the beginning full-time but not anymore, there were only like 2-3 people who posted there that currently work full-time.

 

[deleder2k]

@leokitten, I have the exact feeling as you. Thank you for bringing this up.

One want to believe that the new supplement one is trying is working. I've tried so much crap. I've also in contact with tens of PWME locally. They all try something new whether it is magnesium, Q10, LDN ++. They are so positive about it for a few months or maybe a year until they stop taking it to test whether it really works. Then they realise that they don't feel different at all without it.


We need real drugs to combat this disease. The ones I think that can really make a difference is immunosuppressive drugs like MTX, RTX, Cyclo. IVIG could be worth trying. Seems to work for a subgroup. Isosorbide mononitrate and Riociguat (Soluble Guanylate Cyclase stimulator) is also very interesting.
I also do believe high doses of cortisone (prednisolone) (> 500mg) would be beneficial for some.

The only supplement I believe in is L-arginine/L-citrullane in very high doses because it increases production of NO.

Supplements may work for some, but I am skeptical...

 

[Misfit Toy]

Yes, exactly. There is a small group on here and basically many of the same people are on here. Many do work and have to (off of PR.) Some have no choice but to stop working. That is true, but many of those people can move in with someone, have family, a husband, long term disability with SSDI, etc.

I totally understand this where you are.

Many, it takes years to win SSDI. So, for many...this is not an option. Some don't have savings to fall on.

I have known many over the years that have CFS but still work. They are just not as sick...yet, or may never get that sick. I hope that is your story.

Sometimes it's hard to say what you mean on here, or it comes across as misunderstood. I understood what you meant. Honestly, I worked until I had to go through surgery and then I had to move in with my mom for 2 years after the surgery. If I hadn't of had that, I don't know what I would have done. I had her to fall on. Not everyone has that option and I feel lucky for that, but it came with some problems. I got better and went back to work eventually, but part time.

Hang in there...

ps) meds are the same as supplements. Meds may work for awhile and then they stop or you reject them. That's been my experience. My body doesn't allow anything for the long haul, except for sleeping pills, benzos and allergy meds, that's it!

 

[geraldt52]

I've been at this for 30 years +, and this would be my advice to relative newcomers regarding supplements, and most medications/treatments. Save your money, and hope that some of the recent and serious research goes somewhere, so that you know what you're "treating".

If I had all the money that my wife and I have poured down a rat hole over the years, all on the advice of "CFS specialists" we would now have enough money to hire a gardener for the yard, hire a housekeeper for the house, and even hire a someone to cook for us somewhat regularly. Those things would be a tremendous help in our quality of life...the treatments and supplements we spent the money on have mostly done nothing, and more than occasionally caused harm that took many months to unravel.

Having said that, I have found Lysine to be invaluable in controlling herpes, and antibiotics, antifungals, and antivirals have occasionally been necessary evils, though offered nothing over the long haul.

 

[halcyon]

A person needs medical insurance and needs food and a roof over their head and therefore we have no choice but to continue to work full time there is nothing we can do about it.

Just be careful because the lack of a choice is an illusion. The thing is that it's not a choice that you get to make, it's a choice that the disease makes for you. You probably already know this, but be working on a backup plan in case things go south and you lose functional capacity. I hope this doesn't happen.

 

[SOC]

@SOC I had read your other post in this thread and I guess you deleted it.

No, I didn't.

I'm out of this discussion. I'm wasting mental energy I can't afford to lose. Talk to me again 12-18 months from now about what choices you have about working and activity management. I suspect it may be an entirely different conversation.

 

[Kati]

If the supplements are not helping, save your money. For me I take just a few, nothing out of left field either. My best ones are Complex B and D, calcium/magnesium and I have added melatonin last year. all bought at the grocery store, not from an online store. When I stop them I get some symptoms back.

Many on this forum have been at it dor years now, working on protocols that are supposed to work.

Like @deleder2k I believe that what will make a difference is evidence-based science and medicine. If everybody spent the money they spent on supplement to their favorite research team, we'd already be better off.

 

[leokitten]

If everybody spent the money they spent on supplement to their favorite research team, we'd already be better off.

This is one of the most profound statements I've ever read on PR, ever!

It's funny that something seemingly so obvious isn't thought of or mentioned by any of us until you thought of it. And it's so true, for all the money we spend on supplements and for many of us they don't do much it would be better if we gave those $1000s of dollars a year to research.

 

[heapsreal]

This is one of the most profound statements I've ever read on PR, ever! It's funny that something seemingly so obvious isn't thought of or mentioned by any of us until you thought of it. And it's so true, for all the money we spend on supplements and for many of us they don't do much it would be better if we gave those $1000s of dollars a year to research.

We've given plenty of money to iherb but no cure yet?

 

[Mij]

Supplements that have noticeably helped me:

Fish oils (because I was deficient in Omega 3) ---> improved brain function
Magnesium IM (because I was severely deficient) ---> I can't even begin to say how much this helped!
B12 (because I was deficient) ---> lack of energy (not the usual kind)
Ubiquinol ---> helps with post exertional recovery
Digestive Enzymes ---> absorbing iron? feeling better on them in general
Pepzin GI ---> may be why my iron has increased? I was treated for h.pylori yrs ago and may not have been completely eradicated. May be healing my gut since this all happened when I started taking it last year.

I had the profile of being malnourished years ago despite eating a healthy diet- this takes years to develop. My functional doctor told me that inflammatory responses can have a profound effect on gastro ingestive behaviour.

There are certain minerals etc that become deficient with chronic illnesses because of malabsorption and perhaps a higher demand for them

I'm not taking exotic supplements.

 

[daisybell]

Magnesium definitely helps me with the muscle cramps. I'm not so sure about CoQ10 making a difference. I don't bother with any other supplements as I don't see any value in them for me. Melatonin helped for a while but I don't have problems falling asleep now!

 

[Misfit Toy]

I have to agree with what someone else said – magnesium and taurine shots given to me intramuscularly have helped me profoundly with pain.

 

[JaimeS]

What someone else said earlier (sorry, I can't remember who) was that chemicals are chemicals, and I wholeheartedly agree.

It's really hard for me to buy "this contains hormone-like chemicals, but because it's from plant matter, I don't believe in its effect on the human body". There's this idea that a plant can't be 'real' medicine because it doesn't come from the hallowed hands of an expert. So far as I'm concerned, a chemical is a chemical, and a receptor is a receptor. As far as vitamins and minerals not affecting the body, we define essential vitamins and minerals as that which we must take into our bodies in order to remain healthy. If the pill contains what it says it does, and in a bioavailable form, and it's something you're deficient in, or have increased need for, then...

Hahah, when I listed all that I realized how many caveats I was going to have to include!

Here is what I take and what it does for me.

Not in that post is the fact that I really upped the CoQ-10 recently. I hear all the time that this one does nothing, but I went off and on it numerous times, only to find that I felt an increase in well-being on it, and a slight increase in awfulness off of it. It took several times to be sure, because it seemed to take a dose or two before sinking in, and I had to miss a few doses to feel worse. Then I was PEMing, crashing hard and, based off some advice from (I think?) @SOC , took three 200-mg pills at once. PEM symptoms were gone in 15 minutes... a record for me. No chance it was placebo. I took it easy the rest of the evening, but I was up and moving around in that amount of time. I could scarcely believe it.

It's expensive, but I'm happily on a higher daily dose, now.

-J

 

[rosie26]

Fish oils have been helpful for my head. D ribose was a Godsend at a crucial time during a very dreadful relapse in 2012, ribose helped move me up a level. I have decided to quit taking ribose due to concerns about glycation but I have no hesitation about taking ribose temporarily if I ever go back down to worse levels again. Also, I take melatonin, I find it quite reliable in getting me off to sleep within a hour, keeping in mind that I am now at moderate level and only having sleepless nights when in bad relapses.

 

[Valentijn]

When you can still work full-time even though it is a major struggle and you don't have any family or anyone to fall back on if you make the drastic decision to stop working for your health then you are stuck without choice. A person needs medical insurance and needs food and a roof over their head and therefore we have no choice but to continue to work full time there is nothing we can do about it.

I understand where you are coming from, but your claim of this complete lack of choice is just obviously wrong. Do we all drop dead when we get too sick to work? Obviously not ... yet you seem to think we can never choose to stop working.

Admittedly, it's a very unpleasant path. It means going on disability and having a severely reduced income. It might mean selling a house and downsizing to something smaller in a much cheaper location. It might mean reliance on medicare instead of the insurance from your job. And it probably means a fight to get all of those benefits. But a lot of patients have done all of that, because they lost the choice to continue working.

To some extent I think you're looking at our situation from the wrong perspective. With ME, it's not work which is normal and necessary and unavoidable, and leaving work which is the rare and unusual choice. Leaving work is an inevitability for many, and it is remaining at work which is the choice that some are able to make when in a milder stage of the illness. Remaining at work is also the choice which might have permanent physical consequences.

And while it can be difficult and financially unpleasant to stop working, I think it's worth it to have something of a life again. What's the point in making money if you are constantly suffering? I'd rather have a lot less money, but less pain and better quality of life in the process.

 

[lansbergen]

Just be careful because the lack of a choice is an illusion. The thing is that it's not a choice that you get to make, it's a choice that the disease makes for you.

True.

 

[GhostGum]

I have been one of those over the years who has made threads in different forums, including this one spruiking this or that supplement as being helpful or even significant but the dust always tended to settled and the years dragged on, that said my progress has always been steady. In hindsight I believe it is simply a case of where there is any sign of a positive affect, whether real or placebo, given our situation we cling onto it as much as we can; of course none of it rarely is significant enough to mean much given the severity of the condition.

After 10 years or so of dabbling there is clearly a small group of supplements which are worth while and crop up in discussions time and time again, like a high quality fish or cod liver oil (buy the good stuff and not the cheap crappy capsules), vitamin D, B12, electrolytes/magnesium. To this day, when the winter season rolls around taking a larger dose of vitamin D it is obvious almost straight away how helpful this is. It is likely though at this point my situation relates to genetic predisposition to methylation complications, so some supplements for me where always going to actually be important, B12 is wonderful.

I think if you can afford it sticking with some things in the long term could pay off, I do believe there is benefit in some supplements, regardless if you are healthy or have health complications. But yes for people who have different complications and in a serious state it is unlikely there will be much benefit from most supplements, so many are simply short lived anyway.

 

[Antares in NYC]

I hope this is not going to be a controversial thread and I apologize ahead of time if it upsets people, I really don't mean to you will see below what I'm trying to understand.

With all the testimonials I constantly read on PR about supplement X completely improving symptom Y, or e.g. combination of supplement A,B,C totally improving symptom D, I tend to feel that gosh even though I have ICC/CCC ME/CFS that something is different with my disease than others?

In the almost 2.5 years I've had this disease I've been taking all sorts of different supplements and combinations based on what research I read and testimonials here on PR, which I do appreciate so much because we are all helping each other with our experiences.

But no supplement or herb, absolutely nothing has ever changed any symptoms of my disease, or if it does affect some symptom it takes so many months to years to do this that there is no way I could attest it had any causation.

Are other people in the same boat as me?

I think I'm in the same boat. I have tried just about every supplement and protocol that seems to have worked for other folks, but nothing to date has made a dent. Not a single supplement has helped improve any of my symptoms, zero effect. I was also wondering if I was an exception. Nothing I've tried seems to make a difference.

 

[Wayne]

I tend to feel that gosh even though I have ICC/CCC ME/CFS that something is different with my disease than others? ......... you would think that with all those testimonials and improvements to different symptoms that they would be significantly better now, but then you read more recent posts by the same user and they are in terrible shape.

Hi @leokitten,

I can certainly understand some of your frustrations, which actually mirror the frustrations many of us have. We experience some kind of benefit from some kind of a supplement or therapy, only to have those benefits dissipate over time. Which tells me that the elusive core reason(s) for anybody's particular health issues have not yet been identified and effectively treated. -- And I do believe those core reasons vary considerably with each person on this forum.

One way I look at this dynamic is to consider that most chronic debilitating health conditions such as ME/CFS get progressively worse. When I can find things that help my overall health situation that slows down that deterioration, stops it, or helps me improve somewhat (even if temporarily), it's time to celebrate my little victory. I've long realized that as bad as things are and have been, they can always get worse. -- Just a bit of my own philosophy that helps me with some of my own frustrations.

Best, Wayne