Possible CFS success story. Got much better after 4-5 years. Here's what has helped.

[MeSci]

Now that I thought about it, the only values that were out of the norm on the blood test were: a little below normal haemoglobin, slightly elevated creatinine and sligthly above normal cholesterol (don't remember which). I attribute creatinine and cholesterol to me being on a paleo diet back then.

Also found this:
View attachment 14305

Have you seen this forum about genetic SNPs and ME/CFS? You may find it interesting. I only dipped my toe in it and felt a bit overwhelmed, not to mention confused!

 

[arty0mk]

Have you seen this forum about genetic SNPs and ME/CFS? You may find it interesting. I only dipped my toe in it and felt a bit overwhelmed, not to mention confused!

Yes, thank you. I've spent quite a bit of time on phoenixrising actually. DNA stuff didn't help me much to be honest.

 

[JPV]

Yes, thank you. I've spent quite a bit of time on phoenixrising actually. DNA stuff didn't help me much to be honest.

It was a dead end for me too as was experimenting with methylation protocols.

Modifying my diet and using probiotics has given me the most relief so far.

 

[Sidereal]

I only dipped my toe in it and felt a bit overwhelmed, not to mention confused!

Messing around with that SNP stuff wasted six months of my life and money on methylation supplements which made me sicker.

 

[ErdemX]

Again, the evidence you believe you are seeing is an indication of perceptual biases, not the amazing ability of nutrition, exercise, and an SSRI to cure complex disease.

Sorry if I have understood incorrectly but when you say an SSRI, are you referring to St. John's Wort?

If so, it is not an SSRI.

 

[Vitalic]

Yes, because science is so trustworthy...

Please log out of this forum, turn off your computer, disable your internet connection, and I hope you don't ever fly in a plane or drive a car. It's always amusing to see people denigrating science while using the tools it has produced to do it.

Think about it for a second, does anything strike you as unique or unusual about the text you quoted?

The editor in chief of Lancet, Richard Horton, wrote last month:

Oh, is that the editor of one of the major science publications criticising science? Can you imagine "head of homeopathic society criticises homeopathic practitioners as being a bunch of woomeisters that want to charge you for sugar pills". Unlike in unscientific, faith-based approaches to medicine, in science the criticism is being done by scientists themselves, it is a self-correcting enterprise. That is the difference, and to the extent there is bad science done the answer is not less science but more, better science.

You may attack science by holding up examples of corruption or bad science all you want, but while individual scientists may be bad and deserving of criticism, as those with ME/CFS well know, you do not even have the beginnings of an argument when it comes to the scientific method, which remains the best tool ever devised for working out what is true about the world and for making advancements in human knowledge, be it in technology or medicine. In effect you are making a straw man argument, because Valentijn is very clearly talking about the scientific method and how it allows us to account for bias. Not that it does not have its weaknesses of course, and some of those weaknesses may be exploited by unscrupulous/malicious groups and individuals (usually pharmaceutical companies), but nevertheless, it works, we wouldn't be having this conversation if it didn't.

 

[JPV]

Yeah, science and medicine has done so much to investigate the root cause of our condition in order to develop a viable treatment. It's not like we've been abandoned by them and left to fend for ourselves...

 

[roller]

considering, that we are not talking about anything new - its the same old culprits we are failing to treat... one must say medicine couldnt be further behind.

the whole backwards thinking of "its in our mind", has damaged the whole developments of anything helpful for decades.
only slowly its accepted, that psychiatric diseases may be caused by pathogens.
even though, the evidence that it indeed is has been out there for ages, decades.

if any other profession had f**@#^ up their job that much, im wondering what would have happened.

medicine will go untainted - in their white frocks.

i would like to see a study, what sort of people choose to study medicine.
cowardness to speak up and a 100% fail in independent thinking may be clearly major traits.
narcissim may lead quite a few.

 

[roller]

of course, everyone is hoping by the day, they will find something...
and finally help.

but if WE GO BY SCIENTIFIC evidence... its unlikely that anything comes up.

though, it should - by statistical chance... from time to time...

 

[roller]

where else is so much money spend on - by private people, companies (paying health insurances) and by countries/governments?

they get every shit bought and built.
they can make all day brainscans of people, loaded with pathogens.

its scandalous.

 

[mariovitali]

Experiences of other people should not be disregarded completely either. Many people got better by trying out what has worked for others. Studies and anecdotal evidence are two sides of a whole and both have their place. Anecdotal evidence is the basis for future research and discoveries. The scientific method is not some enigma, it just means experimentation. Make a hypothesis, carry out an experiment, observe the result, repeat; make a conclusion, modify the hypothesis as needed, repeat the experiment; compare with experiments carried out by others etc. This is how anecdotal evidence has it's place in the scientific method. Disregarding it completely is a mistake. All the well documented theories of today were born by some keen mind trying out something that was not widely accepted, often relying on anecdotes.

Thank you for this message. This is exactly what i was talking about regarding other member forums that are unable to understand this simple aspect of Hypothesis-> Experimentation->Conclusion.

 

[Undisclosed]

This thread is now closed for moderation purposes.

 

[Undisclosed]

This thread was closed for a short time due the presence of multiple rule breaches. It has now been cleaned up and re-opened.

It is not a rule breach to ask a member a question related to their diagnosis unless it falls under a personal attack. Just to clear up something, the thread was initially titled "CFS success story. Got much better after 4-5 years. Here's what has helped."

A question arose from the title re: asking the member about their diagnosis. This shouldn't have been a problem. We asked the OP to change the title of the post to better reflect his success story.

The initial objections to the thread title were not unfair, nor a rule breach.

Success story threads are difficult. Some want to hear every small detail of a success story because it might lead to helping in some small way. Others, who have been ill for ages and tried everything do get upset when a new member comes along and states that they have been cured via supplements/diet etc. As a member already mentioned on this thread, it is a legitimate question to ask if it is ME/CFS they have been diagnosed with. It's a delicate question that should be posted in a manner that is not a personal attack, nor insulting.

It's also true that at times we do get people with 'fatigue' from a poor lifestyle that come here conflating that with ME/CFS and usually it turns out they are either selling something or they have no idea what ME/CFS is. We do need to ask questions to clarify if the diagnosis is not clear.

It's also a really difficult situation for many of us who have to deal with the disbelief of those around us. You say 'I have ME/CFS'. They say "Well, I just read on the internet if you take X supplement, you will be cured". Some don't take ME/CFS seriously because of some of the 'success' stories out there. It is indeed a very difficult situation.

The point here, is many success story threads turn in to flaming and arguments when they don't have to. What was removed from this thread were comments that chastised other members for their behaviour on the thread which falls under a personal attack. From the Forum Guidelines:

Please do not chastise other members for rule breaches or make personal negative comments about their behavior in the middle of a thread. Use the 'Report' button

​

We also removed some other personal attacks and other instances of rudeness. Some comments were removed because they were referring to deleted comments so were no longer applicable. Name-calling is not acceptable and it doesn't make Phoenix Rising a very safe place when you post something and get called names and/or admonished for merely having an opinion. If a member has said something that you feel is a rule breach, then report the post rather than take the thread off-topic with comments about the member or having a discussion that is best left up to the moderation team to sort out.

Best things to remember:

• Please remember that members are offering their personal opinions in posts. Everybody has unique beliefs so please don't try to invalidate another member's beliefs simply because you disagree with them. Opinions are debatable as long as the debate remains constructive.

• When you post, be open to being challenged. Your ideas may challenge others and this can facilitate growth but do not personally attack others for not sharing your opinions. Always respect the views of other members even if you don't agree with them.

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If any body has any questions about why your post was moderated, then please contact me and ask me.

Any further rule breaches will result in a ban from this thread.

Thank you.

Kina

 

[grapes]

Here's my story of finding out I have a mitochondrial problem that appears to have gotten much worse during and after copper detoxing...and what I'm doing about it. I used the OAT testing to find out how bad it was!! I've done a massive amount of research of which is not mentioned in my article below, but I think the article still covers a lot.

http://www.stopthethyroidmadness.com/how-the-organic-acids-test-might-help-me-turn-things-around/

And by the way, I loved the above that stated this: Hypothesis-> Experimentation->Conclusion. I feel like I'm definitely having to experiment, but based on so much that I've read, especially with "amounts" of this nutrient or that nutrient.

 

[arty0mk]

Thank you for your message!

What protocol were you using for the copper detox and what method to detect copper excess? I had an off the charts copper on my hair mineral analysis test, by the way.

Since I can't find a date on your article, how long has it been since you have written it? What supplements ended up working for you? How much has this protocol improved the way you feel? What does your supplement regimen look like now?

 

[grapes]

What protocol were you using for the copper detox and what method to detect copper excess? I had an off the charts copper on my hair mineral analysis test, by the way.

Since I can't find a date on your article, how long has it been since you have written it? What supplements ended up working for you? How much has this protocol improved the way you feel? What does your supplement regimen look like now?

I just wrote it a few days ago, so this is all new as a supplement protocol (though I had been on l-carnitine, B-vitamins and CoQ10 for a few months now--and clearly, they weren't enough to stop what happened to me about ten days ago). I simply upped the CoQ10 a great deal now, and added more supplements based on my research. Thus so far, I'm not improved, as I think it's too soon to see much.

I think the OAT test has been CRITICAL for me in understanding what is going on and how how to treat it. The problem with the OAT is that it's a lot of information to work with and understand, but VERY worth it if you delve into it. I wrote this as a way to help others based on the research I did (which is far more than I put in the article---just didn't want the article to overwhelm).

As far as the Copper, I started detoxing in late April 2015. And information about how to do it is pretty dodgy out there. There is a forum, but it's full of "strong opinion" more than experiences or solid research information. So I had to weigh each thing said in there and do my own research. Based on the latter, I first got off all high copper foods like chocolate, avocado, nuts, shrimp, most wheat...you name it. I got on Molybdenum (to stop any more absorption of copper) and Manganese (known to help reduce copper). I used only small amounts of zinc, as too much caused miserable dumping symptoms in me. And more than halfway through the six months it took, I finally realized I should have been supporting my detoxing organs!!! i.e. kidneys and liver. Stupid me. I did start supporting them finally. I did infrared sauna (set up my own lights in a room in my house), but like zinc, it eventually made the detoxing horrible for me. It also became clear to me that anyone with the MTHFR mutation should make sure they are correctly treating that. I don't have a serious MTHFR mutation.

I was DEEPLY exhausted for five of those six months of detoxing. I have no doubt it was due to my mito problem now, but also suspect I was further damaging it. But who know.

When I was done detoxing, I certainly started to be far less fatigued. it wasn't long after I found myself with SIBO. That took about six weeks to treat, and I probably over did it, because I then moved into a raging yeast infection in December.

I'm getting ready to add this to my list of supplements: ATP CoFactors by Optimox...which is just B2 and B3, 100 mg and 500 mg--both mentioned all over the net to work with mitochrondria. And my OAT recommendations focus on Vitamin B2 three times in the Intervention Options!! Duh on me for not focusing on that sooner. When I compared those amounts of the B2 and B3 to two high-dose B-vitamins I had been taking, the B2 and B3 in the latter was paltry in comparison.

 

[Mij]

I had an OAT test done 15yrs ago and was given a customized supplement regime based on my test results. It did absolutely nothing for me. A complete waste of money.

 

[grapes]

I agree. I think the amounts they recommend are paltry. But I did notice that what they were recommending was right according to everything I've researched! I just had to find what I could on what people were taking of those supplements, and it's a LOT more than OAT recommends. So I'm going to take a lot more of the recommended supplements!!

And what is brilliant about the OAT is that you see all related things that could be contributing to a mitochrondrial problem. For me, I have a Carbohydrate Metabolism issue. That affects your Mito. I also have a Fatty Acid Metabolism disorder--that affects the mito!! It's imperative to treat everything related to repair the mito, and only the OAT gave me critical information like that.

And in just my mito area, which the OAT calls the Energy Production Markers, I could see what was not being utilized well based on what was SO high, vs what wasn't high. It's the latter that I'm supplementing with. I can't see supplementing with those that are seriously high, like Cis-Aconitate, Succinate and Malate (and Citrate and Hydroxymethlgluatate are getting close to being high). It seems to me that I need to be focusing more on what is "causing" the mito issue.

 

[grapes]

An example of OAT's paltry recommendations:

B2--15 mg (No, I'm going to take 100mg)
B3--25 mg (No, I'm going to take 500 mg)
Carnitine--800 mg (No, I'm taking 2400 mg)
CoQ10--60 mg (No, I'm taking 500 mg and may go higher)
Arginine--500 mg (No, I'm at 1000 mg plus whatever is in two other things I'm taking)

I'm taking higher amounts because these were the areas most repeatedly recommended to me on the OAT...and I see references on the net to taking these higher amounts. I saw research study where on gal did so much better on 500 mg, coQ10, then 1000 mg, and she had the same CoQ10 mutations I have.

 

[Mij]

I found increasing to 300mg of ubiquinol helpful. I continue to take digestive enzymes because I have problems with absorption.