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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Fixing deficiencies and working on root cause

Messages
66
Hi all!

Starting my investigation into more deeper rooted causes for my health.

I have read the forum and the protocols but I. Still a little confused as to what tests I should order.

I am in the UK and want to invest in the testing for the below.

What bloods/urine /saliva ect tests should I get for the following
1. Vitamin and mineral analysis (what exactly am I deficoent or high in)
2. Methylation, cofactor and enzymes that affect energy
3. Mitochondria function (would like as many tests as possible here)
4. Levels of toxins or toxic substances in my body
5. Detoxification pathway issues /blockages
6. Sibo /yeast/gut/mold issues
7.heavy metals
8. Any particular blood work that may help me understand why my immune system is not great and has allows for reactivation?

I'm desperate and I want to throw my money at the right tests.

Each time I self treat I get
1.oppisite reaction to vitamins, ones that are supposed to provide energy make me notably more fatigued.. These include certain b vitamins, q10, nac, selenium to me a few .. All of these make me feel like I have been run over pretty instantly... Things like niacin or Nadhakee feel jittery, flushed, anxious but even more burnt out despite the stimulating symptoms

2. I take antifungals like caprylic acid, pau d'arco and oregano or anti heavy metal detoxers like spirulina,charcoal ect the die off and toxins are so bad my body can't handle it and i get the worst healing crisus which has been so bad its crashed me and put me in bed for nearly 6 weeks ony last crash and I still haven't fully recovered energy.

I plan to focus on detox and focus on a tailored nutrition and cofactor plan before doing anymore antifungal or bacterial or heavy metal stuff..

I want to be able to take the right vitamins to improve my energy and cellular function and understand and avoid these weird reactions... Im sure its explainable but I need to see evidence of what's wrong so that I can at least attempt to support myself nutritionally instead of launching money at supplements that I may not need and at worse may be bad for me.

I'm aware I have gone about this the wrong way but when you are desperate you do stupid things in hope for a miracle... I'm currently really bad following my recent experiments but my usual baseline is about a 2 or 3.
 

Wishful

Senior Member
Messages
5,808
Location
Alberta
I want to be able to take the right vitamins to improve my energy and cellular function and understand and avoid these weird reactions...

My take on it is that that approach won't work. We don't know what is involved with ME, so we don't have any supported theories about what will help and what will hurt. We all seem to have individual responses to nutrients, treatments, etc. What works well for one does nothing for another PWME, and makes yet another PWME much worse, and we don't know why and can't predict what the reaction will be.

It's possible that the right test will show a deficiency or excess of something, which might lead to a treatment. It might also indicate that the 'nonstandard' reading is simply the optimum level for your health at this point and that trying to force it otherwise will make you feel worse. If you're susceptible to the placebo effect, you could spend a lot of resources on testing and theoretical treatments, and convince yourself that they make you feel better without actually changing anything significantly.

My approach is to try different things (foods, herbs, etc) that are cheap and convenient to try, and pay attention to whether they seem to make a significant difference. If one works a bit, I might try some more expensive or less convenient things that I feel might have a similar effect. If it's something with many different chemicals, I might try other things that have a different subset of those chemicals, to try to identify which one(s) are responsible for the effect. I did that with cumin, and am pretty sure it was the cuminaldehyde, but I still don't have a proper theory for why it had such a beneficial effect on me, and I'm convinced that no amount of testing would have pointed me at cumin as a treatment. I doubt that exhausting testing would have led to a prescription for T2 or iodine either, yet those had a major benefit for me.

It might be worth trying vitamins and minerals separately, to identify the ones that make you feel worse, so that you can avoid them. I avoid foods that are high in niacin, since that makes me feel suicidal. Other vitamins (and foods) have made me feel worse during different periods of my ME, but then stopped being a problem. Others made me feel a bit better the first few times, but then stopped having an effect. It's useful to re-test things once in a while.

In short, it's possible that there's a test that would lead to a treatment that would provide some improvement, but there's no way to know in advance what that test might be.
 

Judee

Psalm 46:1-3
Messages
4,535
Location
Great Lakes
This may just be me but I would be tested for infections first. You may well be deficient in nutrients but it maybe the infections are feeding off of those nutrients and if you start addressing the deficiencies first before getting the others under control, my thought is that you will just be fortifying the infections even more and they will get stronger instead of you.

I think the antifungals are good as many of them serve multiple purposes of working as antivirals and antibiotics too. The detoxing as well might be okay. You might get rid of some of the bad things that way so your body can fight the invaders better. Selenium is also a chelator and per Hip slows the proliferation of some of the viruses.

Keep in mind as you are detoxing you will feel worse before you feel better. I also think it's better to start very slowly. Take pinches of things and not the full dose to see how your body will react. No reason to make yourself completely miserable.

I agree with Wishful. Try things in your home like herbs from your cupboard and make teas from them. Many herbs have antibacterial properties. Thyme tea is my favorite. I use organic when I can though.

This is a page from one of our members who has gone into remission several times. He has done an informal survey on different herbs, antibiotics and probiotics to show what seems to work best for some of us: https://cfsremission.com/2018/05/12/user-surveys-updates/

Here's a better breakdown of the herbals. I got to this page by clicking on the herbs link at the bottom of that first page I linked. You can also review the others in the same way. This chart is older but a bit more easy to read. https://cfsremission.com/2016/07/16/first-survey-results-on-herbs/
 
Messages
66
Thanks this is really sound advice.

I know something is wrong withy detox pathways and I can tell whatever is invading me is really kicking up a load of toxic crap inside me.

I have tested my viruses and I have reactivation of EBV but I'm trying to think bigger picture and not focus on that as root cause.

My hypothesis is if I can get the liver working optimally then start to slowly attack gut infections and support the body with good nutrition I can allowy immune system to build up to be able to once again get the viruses in check.

My onset was a nasty virus (likely covid or ebv) about 5 weeks after having surgery, I suspect the surgery weakensy immune system which is why everything is taking the opportunity to overthrow my immune system... I was fine for the last decade even with minor candida /gut issues but the surgery must have buried my immune system and that's why I'm in a state.

I have to believe I can come back from this, I'm determined to figure this out as I do think, certainly in my case the cause is pathogen driven in a compromised immune state..
 

Wishful

Senior Member
Messages
5,808
Location
Alberta
I'm not sure whether surgery weakens the immune system, but antibiotics could have damaged your protective microbiome, allowing invaders to take hold. Also, I expect that surgery activates the immune system (to clean up damaged cells) and any immune activation can add to ME symptom severity and possibly add with other assaults to trigger ME.
 

Sophiedw

Senior Member
Messages
384
Hello there,

I actually think that's a really great approach to take. Especially centering on deficiencies.

There are a lot of differing opinions but I think micronutrient deficiencies are most liekly a defining pathophysiology of CFS.

The absolute best tools you have at your disposal are the tests and observation. I think spectracell is the most comprehensive , failing that nutraeval and organic acid tests perhaps along with a hair test for metals (accuracy is debated but better than nothing). These can give you a bench mark to see how things change over time but they are expensive.

The most important thing I've found in my recovery is observation though. Also the other most important thing for me was open-focus attentional training. It seemed to remove some weird block in my mind that had developed perhaps as a protective mechanism for being so low on nutrients (now that sounds super quaky but it happened haha so I'm in no way saying that features in everyone ME but might as well try it coz it's free! And could just be relaxing even if it's not a central issue for you like it was for me I'll get the link in a second).

So every time a supplement makes me feel worse that's just not the right one. For me I have to take everything. Anything missing is where my energy is going to cease to be made as I heal from years of slow starvation. Take notes!

I think as you become deficient in one thing your body compensates slowly wasting all the other stuff, so you are really deficient in all nutrients. And then the final insult of virus or surgery tips you over the edge to a point where your body can not balance the thread bare amount of vitamins you have. Unfortunately in my case I can not re find this thread bare balance and have to be fully replete in everything and then I will feel healthy. This has taken several years and I'm still not there yet but am so much better and on the right track. I still go deficient in something random all the time and have to find out what it is through trial and error and increase the amount I am taking or decrease some other supplement.

Sorry to say it may take years but it's important to remain positive that you are recovering and not give up on the nutrients. I take everything on Freddd's protocol plus a few extras so:

Vitamin ACDE
sometimes a little vitamin K (MK4 but not essential)
B1B2B3B5B6
B9B12
Adenosyl b12 and methylb12
Biotin (again not essential for me)
Choline/inositol
Iron
Zinc
Selenium
Molybdenum
Manganese
Vanadium
Chromium
Manganese
Boron
Coq10
Magnesium/Calcium
Methionine (occasionally)
Carnitine
BCAAs (mega important for me but seemingly less so for others)
Lithium
EAAs (essential amino acids)
Iodine
Lecithin
Phosphate (very occasionally)
Fish oil
ALA

Freddd also says d ribose/same/tmg never been a huge issue for me but seem to help some people.

Get all of them individually and try cutting them all mega small, like a dot on the end of a toothpick maybe and taking all of them one by one see which ones make you feel better. Keep doing that slowly increasing the dosage. But the most important thing for me was observation. I learnt very very slowly. I'm still not there. But this is my method.

If that sounds daunting and expensive I'm really sorry just thought I'd share what has helped me.

I'm still pretty foggy at the moment and bad at writing long coherent posts haha.

But basically my method was first finding the open-focus attentional training which seemed to allow my body to take on nutrients (weird I know and possibly unique to my illness). And then chasing the symptoms. Seeing what a supplement does then trying to understand from this forum and the wider internet why it might be doing that, what else I might need. Taking a million pills every day until I'm sick Nd tired of it. But crucially taking everything. Any thing missing and I feel back to square 1 with some other weird symptom but I know in my heart of hearts I am much further healed than a year ago and then the year before that I could hardly walk. Slowly slowly getting all the supps up to relevant doses. Don't rush and take anything close to the size of the dose recommended on the tin until your sure it's not going to cause some horrible reaction.

Keep the doses of everything completely tiny but take all of them! Tiny crumb of everything build it all up. Observe your progress. A bad reaction to something is informative. Take it easy. Be patient. Maybe try some of the anti inflammatory protocols to ease your symptoms like some antidepressants or LDN I've read about recently on here but don't really know much about.

You'll find something that helps you eventually. Good luck.

X
 
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Sophiedw

Senior Member
Messages
384
I fully think in a year or less I'll be back to good energy and health if I continue at this rate of healing :) I also think the large doses in Freddd's protocol of b12 are completely unique to him as he has weird b12 handling issues and there is no correct dosage of b12. I myself do not need those massive b12 doses they just deplete me of everything else immediately.

B12 and folate essentially drive metabolism. So if you're very low in everything else just cause crash. Other b's maybe the level underneath that. Also driving energetic processes you may not have the correct co factors for.
 

Wishful

Senior Member
Messages
5,808
Location
Alberta
There are a lot of differing opinions but I think micronutrient deficiencies are most liekly a defining pathophysiology of CFS.

I think you'll find quite a few of us here who show no response to nutrient intake. I've tried various supplements, and my dietary regimes have ranged from very nutritious to extremely nutrient-poor, with no significant difference in my symptom severity. Most of my bad reactions are to too much of a food component, such as tryptophan, niacin, peroxynitrite scavengers, and goitrogens. I'm pretty convinced that micronutrient deficiencies are not a factor in my ME. Also, I don't think I've encountered any reliable stories of PWME who have made a huge reduction in symptoms by adding more of a micronutrient to their diet. It's possible for someone to have an unusual comorbid condition that makes their ME worse if they have the wrong level of a micronutrient, but it seems really unlikely that we're all going to see a huge improvement by taking thulium supplements or some such thing.
 

percyval577

nucleus caudatus et al
Messages
1,305
Location
Ik waak up
You can combine all the minerals in a multi mineral but I find it useful to have them a separately when I'm trying to work out what I've gone deficient in this time. Erg!
In my experiences combinations are limited, at best.

Generally speaking, it might not be as simple as that there is this or that deficiency. Instead there might be a pronounced need or not a need to a certain time.

Therefore, it might be important not only to be aware of what to take, but also of when to take it, ie which one after which one, or which one in combination with which one.

This is in conclusion my experience indeed, but it is - of course - pretty pretty complex, and it takes long time to figure out how what works.
 

Sophiedw

Senior Member
Messages
384
I think you'll find quite a few of us here who show no response to nutrient intake. I've tried various supplements, and my dietary regimes have ranged from very nutritious to extremely nutrient-poor, with no significant difference in my symptom severity. Most of my bad reactions are to too much of a food component, such as tryptophan, niacin, peroxynitrite scavengers, and goitrogens. I'm pretty convinced that micronutrient deficiencies are not a factor in my ME. Also, I don't think I've encountered any reliable stories of PWME who have made a huge reduction in symptoms by adding more of a micronutrient to their diet. It's possible for someone to have an unusual comorbid condition that makes their ME worse if they have the wrong level of a micronutrient, but it seems really unlikely that we're all going to see a huge improvement by taking thulium supplements or some such thing.

Hey Wishful,

I totally get that no nutrients help some people or at least I can see it on the forums. I guess what people lump as CFS is actually a bunch of different syndromes with similar expression of symptoms. Coz people like freddd and myself seem to be helped by correcting the micronutrient deficiencies and other people sadly are left looking for something else to help.

Just thought I'd list what had helped me in this very confusing illness. At the end of the day it's so unique and personal.

Can u take any amount of all of those supps listed? No good or bad effect? That's so weird.

Take care anyway
 

Wishful

Senior Member
Messages
5,808
Location
Alberta
I guess what people lump as CFS is actually a bunch of different syndromes with similar expression of symptoms.

I see ME as a core dysfunction with a lot of possible individual downstream effects and upstream sensitivities. Furthermore, assuming that ME involves altered neural function, the areas of the brain affected could vary with the individual, so affecting one part of the brain could cause muscle weakness while affecting a different part could cause gut issues. Since we don't have a marker for ME, there are probably lots of misdiagnoses of other problems too, which mess up any studies of ME.

Can u take any amount of all of those supps listed? No good or bad effect? That's so weird.

It's definitely a weird disease. We each have our own unique "ME", and are surprised when someone else has different symptoms or sensitivities. I haven't tried everything on your list, but most of them have no effect on my ME. A few had a noticeable effect the first time or two I tried them, but then stopped having an effect. B1 seemed to help the first time, but not after. Iodine gave me temporary remission the first time I tried it, but not after, but later I found that taking one dose every 21 days would prevent worsening of symptoms. Other things, such as the various trace metals, never had a noticeable effect, even at several times the recommended daily dose.

When I noticed a big benefit from a multivitamin/mineral tablet, I tried the vitamins separately, and found no effect. Then I started on the minerals, and found that it was the iodine that was responsible. Despite what the supplement industry wants us to believe, I've found that I'm remarkably insensitive to most nutrients. Missing the RDA of some nutrient does not make me keel over in poor health. Taking a tablet does not make me jump for joy with a big smile on my face, as the ads mostly imply. When I was on my nutrient-poor diet, I kept waiting for deficiency symptoms to show up, and except for sensitive gums when I avoided VitC for too long, no symptoms showed up.

In previous threads about supplements, there are usually a few responses along the lines of "I've tried them all, and none of them had any effect."
 
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