Supplements do not have any real effect on symptoms

[ahmo]

@ahmo, that's amazing -- I'm glad to hear of your success. How did you figure out that you were taking the wrong types of supplements, enabling you to correct the problem & get the intended benefit?

I didn't know they were wrong until I stumbled upon recommendations for the better forms. Eg., I took the online questionnaire for pyroluria. The first time, I didn't rate. But as I kept seeing references to it in my GAPS forum, I retook it, answering for symptoms I had in the past but no longer. My score was still not very high, but enough for me to order the supps. That was how I began P5P. Freddd's Protocol gave me the whole group of Deadlock Quartet supps; reading posts by ppodhojaski linking MAO-A with FMN prompted me to try it. These are the instances when the new things really worked. Of course, there have also been the things that were useless, or worse, especially the sulfur-containing things I didn't know were a problem. I worked with my GP and compounding chemist over 2 years trying to get thyroid right. In the end, I followed the outlier suggestions of John Lowe and got it right.

 

[Tammy]

If the stability of the state comes from its own internal reinforcement you might nudge it into a new permanent stable state. However if there is an external driving force then it will slowly drift back into something resembling the old state.

This sounds quite interesting despite the fact that I cannot completely comprehend it. Is there anyway to give an example..........I do better with examples.....................like what would be an external driving force? When you mention internal reinforcement.......does this mean like our natural feedback loops?

 

[alex3619]

@Tammy, I will think about it. Feel free to send me a private message if I think about it too long ... I've probably forgotten in that case. I will give an answer a go, but I don't have any simple answers at hand.

I no longer do the kind of math necessary to explain this kind of thing. That part of my brain just doesn't work well. In any case you don't want esoteric math.

This is about what are often called homeostatic mechanisms in biological systems. Take temperature, a simple one. In a home thermostat you have a device that senses the temperature. When it gets too low it can kick in and start a heating device. When it gets too high it can kick in and start some AC or other cooling options.

Biological heat regulation is much more complicated. Its also not something I have investigated much, so I could be getting some of this wrong. It starts in the nerves. You have both heat and cold sensing nerves all over the outside of the body. I am sure you do on the inside too but I do not know where they all are.

The body, spinal ganglia and especially the brain interpret these signals, and induce lots of changes. It might make things unpleasant so you change behaviour. You might start to sweat or shiver. You might get hungry, or sleepy, or your metabolic rate can change.

These mechanisms act to bring you back to the ideal temperature your body thinks it likes. Peripheral neuropathy, or failures in temperature regulating mechanisms such as controlling peripheral blood flow, can damage these options.

Many mechanisms in the body work like this. If you have too much inflammation, driven by an inflammatory stimulus, then antiinflammatory mechanisms can begin. This can include migration of antiinflammatory immune cells to the area. They can help prevent damage from inflammation, and even start to heal it.

Biochemical systems also have feedback loops, although in a way a biological system is just a big gloop of biochemical systems. As one substance goes up too much, a signal goes back and lowers it. As it drops too low, a signal goes back and raises it. The problem is the biochemistry is thousands of such signals, all being constantly adjusted, all at the same time. Vitamins and minerals assist many of these processes. So if you alter the vitamin or mineral content of the tissue you can impact these processes.

I will try to find a simple explanation. Diagrams will help. If anyone knows of a good example maybe you could post it here.

 

[alex3619]

This is probably too esoteric -

http://www.quora.com/What-are-the-feedback-loops-in-biochemistry

Wikipedia has several discussions, but again no simple explanations.

 

[alex3619]

http://www.diabetesinc.net/regulation-of-blood-glucose-concentration/

This might be more interesting. To understand what I am proposing though, you need to understand that most of these processes and arrows involve enzymes. Enzymes create a lot of the changes in biological systems, for reasons I don't want to go into as it gets even more complicated. Enzymes often require vitamins and minerals to work. Or in other words, a vitamin is an enzyme helper (though not always, doh, its a confused term). So when you alter the vitamin concentrations you can alter the enzyme activity. However as soon as you do that you get into all the dynamic feedback and feedforward loops.

 

[Tammy]

Alex...............thank you for taking the time and effort in trying to explain. You are a true soldier. When you stop to ponder .....the whole biological network.....with all its complexities........is pretty damn miraculous.

 

[JaimeS]

Hey, guys, I would love to hear what you think of my hypothetical fat-soluble and water-soluble vitamin blend discussed here, unless your answer is that no one should waste their money on supplements.

-J

 

[leokitten]

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.

This advice doesn't apply universally. As the saying goes the devil is in the details, and everyone needs to carefully weigh which life path would make things worse. Yes in life for those who aren't forced by the illness or other circumstances there is still a "choice", but when that other choice is so much worse and fraught with it's own dangers and uncertainties then it doesn't become a choice at all.

For example I currently live in the U.S., not the Netherlands or other western European countries where there is very decent social welfare. Social welfare in the U.S. is abysmal you would live in total poverty and if I'm not mistaken it would be near impossible to get if you can actually still work. Also in the U.S. you cannot apply for disability if you can still work full time, so that means no disability money.

Saying hypothetically one could get welfare or choose to work in a low paying part-time job I'll lay out the "choice" I would have which is similar to the choice others with milder ME/CFS would have that do not have any family or anyone to help them:

Option A:

• Work full-time
• Continue with career
  
• Daily life is a struggle, no appreciable life outside of work
• Constant PEM and managing symptoms, hard to pace, but illness has been stable because of aggressive treatment, higher likelihood illness might get worse but not guaranteed
  
• Nice comfortable apartment with convenience and a car
• No financial issues and plenty of money to save
  
• Top-notch medical insurance with employer subsidies
• Any medication, lab test, procedure my doctor prescribes is fully covered
  
• Can afford to visit any out-of network or specialty doctor, including ones which don't participate with insurance (as many ME/CFS top doctors do)
• Can afford any supplements and most specialty treatments not covered by insurance
• Can afford the best foods (e.g. organic, gluten-free, etc.) and can easily maintain a very healthy diet

Option B:

• Quit working or work only part-time in a low paying job outside of my career (because you cannot work part-time in many careers in U.S., including my own)
• Lose career
  
• Daily life less of a struggle, possibly some social life but very little money to do most things
• Less PEM, easier to manage symptoms and control pacing, although no guarantee that illness will get better and might get worse (especially since it's likely won't be able to afford same medications and treatment)
  
• Have to move to a shared house and live in a room, probably cannot afford a car or if I can then it would severely take away from money for treatment/doctors
  
• Major financial issues since I have little income (makes life a struggle in a different way)
  
• Obamacare likely "bronze" level low-end medical insurance because that's all I can afford
• Many expensive medications likely not covered (e.g. Valcyte) or if covered cost is way too expensive, many lab tests and procedures not covered
• Cannot afford to visit any doctor, only in-network approved doctors, so cannot visit most ME/CFS doctors
  
• Cannot afford most supplements or specialty treatments
• Cannot afford any organic or specialty foods, diet likely poorer

I'm not so sure Option B would always be a good decision for ME/CFS patients who do have this choice and it might make things far, far worse.

In the other thread I started about working full-time there were many people's stories and no one on that thread preemptively stopped working when they still had the choice, even those who, if they stopped working or severely cut back, would have full financial support and insurance from their partners or families.

 

[Gingergrrl]

other thread I started about working full-time there were many people's stories and no one on that thread preemptively stopped working when they still had the choice, even those who, if they stopped working or severely cut back, would have full financial support and insurance from their partners or families.

You are making a lot of assumptions and I stopped working pre-premptively for 2-3 months of FMLA with the belief system you appear to hold now. I then went back to work b/c I was determined as all hell not to lose the career that I loved and built for 16 yrs. I lasted three more months until my body gave out and I could no longer breath, walk, drive a car and HR was going into the 160's every single day.

My husband and daughter were on my insurance and I was the one with the stable job and salary. All three of us lost health insurance b/c of me and the guilt was overwhelming. If I had the physical ability to make the choice to continue working, I would have done it. I wish you could grasp that sometimes the illness makes the choice for you.

 

[leokitten]

You are making a lot of assumptions and I stopped working pre-premptively for 2-3 months of FMLA with the belief system you appear to hold now. I then went back to work b/c I was determined as all hell not to lose the career that I loved and built for 16 yrs. I lasted three more months until my body gave out and I could no longer breath, walk, drive a car and HR was going into the 160's every single day.

My husband and daughter were on my insurance and I was the one with the stable job and salary. All three of us lost health insurance b/c of me and the guilt was overwhelming. If I had the physical ability to make the choice to continue working, I would have done it. I wish you could grasp that sometimes the illness makes the choice for you.

I don't understand why people keep misunderstanding and misreading this thread, I've written so clearly that this is not about when the illness has gotten so bad that it has forced you to stop working.

When you are in a position that you can continue to work and don't have any support if you were to stop then you must continue working, it is a far worse choice to preemptively stop working for many of us, sorry but it's true.

Phoenix Rising is not just for people with ME/CFS who are too ill to work and it's not just for people with moderate to severe ME, it's for all of us and we are all equally important. I'm constantly getting these negative posts from certain users because I try to discuss issues and problems for people with milder ME/CFS.

Yes I understand you've gone through a lot of terrible things because of ME and for many it's destroyed your lives, but please don't take it out on or project your anger on me I had nothing to do with it.

 

[Gingergrrl]

Not taking anything out on you and was just trying to correct some misconceptions in which you said that no one tried to pre-emptively stop work during mild CFS or reduce to part time hours and I tried both routes multiple times.

You also said the people who stopped working had wealthy partners or families who provided health insurance and I also did not have this and I was supporting my husband while he tried for 3-4 yrs to start up a business. We now have an Obama care plan out of necessity that we pay for on our own.

I was you two years ago, I was literally you in my belief that I HAD to continue working and there was no choice. You may stay at mild CFS forever and God forbid never become me. I was just trying to share my perspective. And of course this board is open to everyone with all levels of CFS or with no CFS.

 

[Kati]

I don't understand why people keep misunderstanding and misreading this thread, I've written so clearly that this is not about when the illness has gotten so bad that it has forced you to stop working.

When you are in a position that you can continue to work and don't have any support if you were to stop then you must continue working, it is a far worse choice to preemptively stop working for many of us, sorry but it's true.

Phoenix Rising is not just for people with ME/CFS who are too ill to work and it's not just for people with moderate to severe ME, it's for all of us and we are all equally important. I'm constantly getting these negative posts from certain users because I try to discuss issues and problems for people with milder ME/CFS.

Yes I understand you've gone through a lot of terrible things because of ME and for many it's destroyed your lives, but please don't take it out on or project your anger on me I had nothing to do with it.

Hi @leokitten I can relate to you saying this thread is about the fact that supplements do not necessarily improve function or symptoms. i get it because it is what I am experiencing.

i understand that others feel differently as well in the fact that they feel supplement has helped them. However I don't think that changing my diet and taking a handful of supplements will help my condition. i just know so.

About the work situation, everybody has a particular situation. Some are sicker, some are less, the nature of the job may make things easier or tougher. Your employer may be more or less understanding. i don't think you should feel judged for remaining at work. And I don't think people judge you either.

We are all over here for a unique reason, and for common reasons as well, one of which is that we have this disease that so few understand and respect. We are diverse as a community, from the severity perspective, but also we know that what we call chronic fatigue syndrome is fairly heterogenous.

Welcome to the club. You are not alone.

 

[redaxe]

Well my experience

I found an amazing response to Hydroxy-B12 injections. After about 15 minutes from my first injection I felt like lightning was coursing through my veins and all of a sudden I had the energy to interact and talk and laugh again. It almost felt like a veil was being lifted from me.
After I noticed the effect seemed to wane over a few days I started having more of them but eventually the 'stimulant' effect seemed to wear off and now I feel nothing from them - although I never relapsed as bad as I did before (mainly on the cognitive side).

So it may be the case that some supplements may give you something you need if you're deficient. But I think the reason why they vary so much from person to person is probably down to subsets in this illness and that there may be some degree of autoimmunity. So supplements that regulate or strengthen the immune system may have adverse effects.

Nonetheless it's hard to not notice the pessemistic tone throughout this thread - that the current treatments we have don't work all that well or at all. That's understandable but there is some good news on the horizon and I think we should remember this.

Firstly we have the Open Medicine Foundation which has brought together a team of some of the best scientists in the world. This has not happened for ME/CFS before and some of these scientists have completely revolutionized medicine and biology.
We have Jose Montoya leading a research team into ME/CFS at a prestigious university. In fact I believe it was Dr Montoya who has been drumming up a lot of interesting in this illness by saying that it really is the final frontier for disease (once this one is cracked that is basically it - every major disease will have been more or less discovered).

Secondly there are new drugs coming out that may be very effective for our condition. Yes it's true that we don't have drugs being developed specifically for us but the Rituximab trials are showing promise.
Then there is Brincidofovir that is expected to be released in the next 12-24 months I think. Brincidofovir is a much stronger antiviral than Valcyte without the side-effects and toxic risks. Once this is available many people here will switch to Brincidofovir and we will finally know if antiviral drugs are truly effective. Whereas the problem with the current antivirals is they are not broad spectrum and not that effective against viruses like HV6 so trials have to identify patient subsets and run for a very long time which makes it harder to find positive results.

Than there is DRACO which a targeted drug that kills viral infected cells. This one may truly revolutionize medicine as we know it.

 

[ahmo]

@leokitten I've been really feeling to reach out and

. I grew up as an American, became ill as an Australian. Which means universal health care and disability pension. My

feels for you. It is a wicked system.

Yes I understand you've gone through a lot of terrible things because of ME and for many it's destroyed your lives, but please don't take it out on or project your anger on me I had nothing to do with it.

It's true. Every issue that comes up, we see it through our own eyes. And sometimes it feels really charged, and we come from our own place of pain. Adjusting to any level of chronic illness is a truly harrowing experience. And for me, it's never done, this adjusting, acommodating, surrendering to it without giving up. And it's true, the working well and the really unwell may be as different as those with ME and the rest of the world.

I really appreciate your organized response to Valentijin. You've really exposed yourself in your questions and responses. Please accept the comments as heartfelt attempts to warn you away from the abyss.

None of us would have known there would be a last-straw moment when life would be irrevocably changed.

And, as Kati said,

Welcome to the club. You are not alone.

 

[leokitten]

You are making a lot of assumptions and I stopped working pre-premptively for 2-3 months of FMLA with the belief system you appear to hold now. I then went back to work b/c I was determined as all hell not to lose the career that I loved and built for 16 yrs. I lasted three more months until my body gave out and I could no longer breath, walk, drive a car and HR was going into the 160's every single day.

Apologies but this is a misunderstanding and/or mischaracterization of my posts and a jumbling up of different things that were stated. This is not an example of preemptively stopping work before things get bad in order to get better and not coming back to work until you are much, much better.

You got ill and then at some time got an FMLA which gives you up to 3 months per year of unpaid leave which you then took. When the FMLA was up you either had to come back to work or quit, you came back to work. You didn't preemptively stop working indefinitely in order to get better.

The other huge thing that is different between me and every story I read is that I've been on a ton of aggressive treatment, everyone else who was working full time did not go on any treatment at all before the disease took away their ability to work.

You also said the people who stopped working had wealthy partners or families who provided health insurance and I also did not have this and I was supporting my husband while he tried for 3-4 yrs to start up a business.

What you said I wrote is not what I wrote. I said "no one on that thread preemptively stopped working when they still had the choice, even those who, if they stopped working or severely cut back, would have full financial support and insurance from their partners or families." Again a complete mischaracterization or misunderstanding of what I wrote. The text I wrote says that some of the people who shared their story didn't stop working preemptively even though they would have complete financial support from partner or others, not that all people would.

 

[leokitten]

About the work situation, everybody has a particular situation. Some are sicker, some are less, the nature of the job may make things easier or tougher. Your employer may be more or less understanding. i don't think you should feel judged for remaining at work. And I don't think people judge you either.

@Kati I very much appreciate what you wrote, but I honestly do think people are being judgmental in their posts. They are being very negative in their choice of words and saying that I have a lack of understanding, when in reality they are failing to understand that everyone's situation is different, everyone's illness is different, that what happened to them might not happen to others, and that some people's life situation mean that certain choices could actually be far worse.

People with milder ME/CFS are really underrepresented on PR and it's dominated by people with more severe forms that didn't go on aggressive treatment early in their illness when they were still working. So they really don't know what it is like for people like me.

 

[jimells]

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.

This is exactly what happened to my father 35 years ago. He had heart disease. He also worked for a highly-profitable arms company (Raytheon) with a generous union contract. Since he wasn't well enough to go back to work full time, he took a very early retirement, worked part time as a driver for a funeral home, and was still able to survive financially.

He didn't have to fight for years to get disability - all he had to do was be the patient and concentrate on getting well. And he didn't have to be some overpaid idiotic manager either - he was definitely blue-collar all the way.

So conditions for working people have drastically changed in the past few decades. I suspect few folks understand just how much...

 

[Gingergrrl]

@leokitten I am going to back out of this thread and all your threads to avoid further misunderstandings and stress for both of us. You only know bits and pieces of my story and vice versa.

My goal was to try to help you from never reaching the point that I am at now. My workplace held my job for me for over one year hoping I would come back and I tried aggressive treatments and everything I could think of yet my illness progressed nonetheless.

I was hoping to avoid you this pain and suffering on the off chance that working could worsen the progression of your illness. I am not a judgmental person and wish you no harm. You will not hear from me again on this topic. Best wishes and peace to you on this journey.

 

[Kati]

@Kati I very much appreciate what you wrote, but I honestly do think people are being judgmental in their posts. They are being very negative in their choice of words and saying that I have a lack of understanding, when in reality they are failing to understand that everyone's situation is different, everyone's illness is different, that what happened to them might not happen to others, and that some people's life situation mean that certain choices could actually be far worse.

People with milder ME/CFS are really underrepresented on PR and it's dominated by people with more severe forms that didn't go on aggressive treatment early in their illness when they were still working. So they really don't know what it is like for people like me.

Fair enough @leokitten thank you for speaking up. I think the issues you are bringing are important.

There is quite a bit of stigma carried against the milder form of the disease. i agree. Many are speaking language of 'you don't have what I have', when in fact we don't know exactly what we have. 'Some' biomarkers are used, NK ell function being one but seemingly Dr Peterson has the most comprehensive list of biomarkers he uses and very few have access to his expertise.

i hope you hang around here @leokitten because I feel your voice is important.

Best, Kati

 

[Kathevans]

@leokitten I'm the poster girl for supplements--both for good and ill. I've been left wondering about this a lot lately as I'm just trying to get off a two-month long roller-coaster ride on and off a B-Complex.

At nineteen when my mother told me I'd had DES exposure in-utero, my gyn told me to take 800 mcg of folate/ day and I dutifully did. I've taken a B-Complex for decades and only last year, after reading some of @Freddd 's posts, did I begin to think I might have been over-doing them a bit. My pain symptoms had grown much worse (not to say that some of this wasn't oxalates--there's a point where parsing this is near impossible).

This April I stopped the particular B-Complex I'd been taking for at least a decade. Btw, I'd learned that last year, around the time of my worsening pain, they'd changed their formula to include Quatrefolic, one of the two activated forms of folate. Within a week of stopping I began to experience irregular heartbeats--pvcs, other irregularities--as well as worsening sleep, and one day, total depression, exhaustion and weak muscles to the extent that I told my husband I felt as if I couldn't hold myself up; I felt as if I had a knife in my back. Out of desperation I took one of the B-Complex tablets (Before stopping I'd been taking 2 a day as the bottle suggested....), went upstairs for a nap and about an hour later, woke tired but happy, without pain--my back feeling just fine, and went on to have a reasonable day. Over the next six weeks, I struggled with and without the B-Complex, and finally, after an emergency room visit with Afib (off the Bs), decided I needed this more than I didn't.

My heart rate is largely under control again after adjusting the Bs to roughly 3/4 of a Complex each day in two divided doses. And a bit of added B2 as FMN that seems to be an extra leveling/smoothing component. My oxalate issues are less extreme.

I'm thrilled to be able to lie down at night without having my heart go into some wild rhythms, though I still wonder if the folate I've taken since such a young age hasn't added to my pain issues--particularly since what I seem to have is a functional B-12 deficiency.

O' Life.