Possible ME/CFS - lingering symptoms for years but now sudden unbearable fatigue - What to do?

[caledonia]

Hi @Replenished, I was thinking about your case a little more last night.

1) What could be the connection between a water fast and your issues? Fasting is hard on the adrenals. What if it set off an adrenal fatigue type situation? If it's not outright Addison's or Cushing's a regular doctor won't be able to find it. Check out this page from Stop The Thyroid Madness on adrenals and aldosterone, which sounds similar to your symptoms: https://stopthethyroidmadness.com/aldosterone/

2) Someone had mentioned Dr. Nigel Speight, an ME specialist. It could be good to go see him or someone similar to try and rule ME/CFS in or out. He should be versed in other diseases which are similar or misdiagnosed as ME/CFS. So he could be helpful either way.

3) This is a list of differential diagnoses from the International Consensus Criteria Physicians Primer:
http://www.investinme.org/Documents...nternational Consensus Primer -2012-11-26.pdf

Differential Diagnosis: When indicated on an individual basis, rule out other diseases that could plausibly simulate the widespread, complex, symptom pathophysiology defining ME. E.g.: Infectious disorders: TB, AIDS, Lyme, chronic hepatitis, endocrine gland infections; Neurological: MS, myasthenia gravis, B12; Autoimmune disorders: polymyositis & polymyalgia rheumatica, rheumatoid arthritis; Endocrine: Addison’s, hypo & hyper thyroidism, Cushing’s Syndrome; cancers; anemias: iron deficiency, B12 [megaloblastic]; diabetes mellitus; poisons

If you have all this stuff ruled out, it probably is time to see an ME specialist.

 

[Replenished]

Testosterone has come back low again from a blood test this week. It's been bordering on low for a while. I have very high DHEA and low testosterone if anyone can make sense of that?

Serum testosterone level 7.6 nmol/L [8.0 - 31.0]

 

[Crux]

Possible early metabolic syndrome. You're not overweight, but have hyperuricemia, relatively low SHBG, glucose is suboptimal, high triglycerides, and low TT. :

https://onlinelibrary.wiley.com/doi/pdf/10.1002/osp4.413

"Results: Participants with hyperuricemia (≥7.0 mg/dL) demonstrated lower adiponectin, cbT, cFT, SHBG, and TT, but a higher MetS prevalence and higher values of various MetS-related parameters than those without hyperuricemia (<7.0 mg/dL).

From a dietary perspective, serum uric acid levels and the prevalence of gout both rise in proportion to the level of consumption of fructose or sucrose.41, 4

Therefore, building upon our previous findings that serum low TT concentration was a predictor for MetS, we provide evidence that low SHBG provides a reliable marker of hyperuricemia and was closely correlated with MetS."

 

[Replenished]

Possible early metabolic syndrome. You're not overweight, but have hyperuricemia, relatively low SHBG, glucose is suboptimal, high triglycerides, and low TT. :

https://onlinelibrary.wiley.com/doi/pdf/10.1002/osp4.413

"Results: Participants with hyperuricemia (≥7.0 mg/dL) demonstrated lower adiponectin, cbT, cFT, SHBG, and TT, but a higher MetS prevalence and higher values of various MetS-related parameters than those without hyperuricemia (<7.0 mg/dL).

From a dietary perspective, serum uric acid levels and the prevalence of gout both rise in proportion to the level of consumption of fructose or sucrose.41, 4

Therefore, building upon our previous findings that serum low TT concentration was a predictor for MetS, we provide evidence that low SHBG provides a reliable marker of hyperuricemia and was closely correlated with MetS."

Thanks. What is my best option to improve this if this is the case?

To me though, I was fit/active/athletic, until developing the dehydration issue and it's all gone down here from there. Metabolic syndrome seems like the last thing I would develop but it does seem to match up from what you've said.

Debating whether to go on Testosterone replacement therapy. But at the same time, I maintain a somewhat athletic build and good muscle mass despite the low Testosterone. It's seems something is suppressing the test levels and my body is maintaining muscle through some other mechanism. When I say maintain muscle, I mean, people assume I bodybuild/weight lift, so it's odd a carry such muscle with low Testosterone. Yet I also feel like crap with no energy.

 

[Crux]

Thanks. What is my best option to improve this if this is the case?

It does seem paradoxical to me too. Some of these papers came up when I searched some of your results. It's a fairly new discovery. surprising

I remember some guys on reddit mentioning that their testosterone had come up after being on the keto diet.
I don't think it's necessary to go that far, but first try a lower carb.

Do you have any genetic tendencies ? Have any family members with diabetes ?

I would avoid fortified foods, though, if you're in the U.S., they toss way too much iron in them.

 

[Crux]

I would add that I've seen hyperuricemia and metabolic syndrome with iron overload in some papers. That's why I brought it up again.

I've lurked on some hemochromatosis sites and remember a post of a man who had a genetic iron loading situation. His bloods were normal, but when he had an mri, iron deposits were found in several organs.

Iron dysregulation can cause terrible fatigue.

 

[Replenished]

It does seem paradoxical to me too. Some of these papers came up when I searched some of your results. It's a fairly new discovery. surprising

I remember some guys on reddit mentioning that their testosterone had come up after being on the keto diet.
I don't think it's necessary to go that far, but first try a lower carb.

Do you have any genetic tendencies ? Have any family members with diabetes ?

I would avoid fortified foods, though, if you're in the U.S., they toss way too much iron in them.

Funnily enough I went keto a couple of months ago as an experiment to see if it might improve my symptoms in anyway. It didn't but my testosterone went from 8, up to 15. I stopped keto because my cholesterol was getting ridiculously high, even if I felt I was eating relatively healthy keto. I also felt even more depleted without any carbs.

Lower carb I think I do need to try though.

No family members with Diabetes, other than my Grandma who developed it in the last few years, but she's 94! Parents, siblings etc all healthy.

 

[Replenished]

I would add that I've seen hyperuricemia and metabolic syndrome with iron overload in some papers. That's why I brought it up again.

I've lurked on some hemochromatosis sites and remember a post of a man who had a genetic iron loading situation. His bloods were normal, but when he had an mri, iron deposits were found in several organs.

Iron dysregulation can cause terrible fatigue.

How do people even get iron down / balance iron? I will look into it and have done briefly but seems it's easy to increase iron but to get it down seems much more of a challenge.

 

[BrightCandle]

I stopped keto because my cholesterol was getting ridiculously high, even if I felt I was eating relatively healthy keto. I also felt even more depleted without any carbs.

That is kind of expected with a keto diet since more of your energy is coming from fat your carriers for fatty energy, cholesterol, are going to increase. Triglycerides usually go up too for the same reason.

Personally I feel depleted without the right amount of glucose intake, its a fine line I have to hit which is what ultimately ended my keto experiments as I found simple carbs often improved how I felt.

 

[Crux]

I stopped keto because my cholesterol was getting ridiculously high, even if I felt I was eating relatively healthy keto. I also felt even more depleted without any carbs.

Yeah, my cholesterol is also ridiculously high, I wasn't able to tolerate fiber and oils and many veg. in the past. I can now, so having avocado and avocado oil. The MUFA fats in them reportedly reduce cholesterol. Unsaturated fats do too, but they can be pro-inflammatory.

MUFA fats , reportedly, are the kind to have.

How do people even get iron down / balance iron? I will look into it and have done briefly but seems it's easy to increase iron but to get it down seems much more of a challenge.

The B vitamins and choline regulate iron. Without them, iron will accumulate. People vary widely in needs.
Copper enzymes regulate iron, both for people with high and low.

If Zinc is low , iron will dominate.
Selenium has a role in iron regulation, I'm beginning to look into it.

Lactoferrin has an interesting role in iron regulation, but that may be something to explore later.

There are supplements that chelate iron, binding and removing, but that may be for later, if these nutritional factors don't work.

 

[Crux]

Fructose is the sugar that is most implicated in metabolic syndrome. It looks like this type of carb. is the
one to watch.

Active vitamin A is another thing that regulates iron. You read that it increases iron uptake, but it is involved in forming ceruloplasmin, a copper containing protein that regulates iron.

 

[Crux]

Good paper about fructose, metabolic syndrome, hyperuricemia, and gout :

https://journals.lww.com/cmj/fullte...and_metabolic_diseases__too_much_to_be.4.aspx

"In fact, the majority of studies support that high fructose intake can lead to hyperuricemia. In a meta-analysis involving 125,299 participants, it is shown that high fructose consumption corresponds with an increased risk of gout.[105] "

 

[Crux]

Another good paper :

https://www.intechopen.com/chapters/75058

" The consumption of excess fructose may promote the development of metabolic disorders directly or indirectly. Dietary fructose intake has been linked with some human diseases, including hypertension, obesity, dyslipidemia, diabetes, non-alcoholic fatty liver syndrome, and certain type of cancers."

These papers discuss hypertension, which you don't have, but neither did I when I was young. Hope I'm not being too alarmist.

 

[Crux]

This paper discusses a pathway that high fructose consumption leads to low ATP. fatigue

https://www.dovepress.com/the-negat...liver-wit-peer-reviewed-fulltext-article-DMSO

Uric acid generation, in particular, has been found to lead to hepatic lipogenesis via several potential pathways. Its activation of NADPH oxidase and oxidative stress was shown to decrease the activity of the mitochondrial enzyme known as aconitase-2, which results in citrate accumulation and activation of ATP citrate lyase that leads to lipogenesis.5 Another possible mechanism is via uric acid’s impairment of fatty acid oxidation through the inhibition of AMP-activated protein kinase (AMPK), which leads to enoyl CoA hydratase inhibition and lipid build-up.5 Depletion of ATP stores in the liver is also a consequence of this process.

 

[Replenished]

This paper discusses a pathway that high fructose consumption leads to low ATP. fatigue

https://www.dovepress.com/the-negat...liver-wit-peer-reviewed-fulltext-article-DMSO

Uric acid generation, in particular, has been found to lead to hepatic lipogenesis via several potential pathways. Its activation of NADPH oxidase and oxidative stress was shown to decrease the activity of the mitochondrial enzyme known as aconitase-2, which results in citrate accumulation and activation of ATP citrate lyase that leads to lipogenesis.5 Another possible mechanism is via uric acid’s impairment of fatty acid oxidation through the inhibition of AMP-activated protein kinase (AMPK), which leads to enoyl CoA hydratase inhibition and lipid build-up.5 Depletion of ATP stores in the liver is also a consequence of this process.

For the past few years I have drank a lot of fruit juice, typically orange juice. It's the only thing that seems to quench the thirst/dry mouth a little and that's the only reason I drink it. Perhaps it's now leading on to other issues though.

Based on a hair sample anylsis test that I had which suggested iron, i'm taking many of the supplements you mentioned. Copper, selenium, Zinc, B vitamines, but also magnesium, manganese, vitamin E. All of which as per usual haven't made a blind bit of difference to my symptoms unfortunately.

I can't do Keto again but I suppose lowish carb and eliminate fructose might be worth a try. Although as I say, I had the dehydration issue first before eating a lot of fruit/juice. The extreme fatigue aspect is definitely something that's come on more recently though.

 

[Replenished]

That is kind of expected with a keto diet since more of your energy is coming from fat your carriers for fatty energy, cholesterol, are going to increase. Triglycerides usually go up too for the same reason.

Personally I feel depleted without the right amount of glucose intake, its a fine line I have to hit which is what ultimately ended my keto experiments as I found simple carbs often improved how I felt.

Thanks. Yes, I appear to be the same as you and need a certain level of glucose to feel anywhere near ok.

 

[Crux]

I can't do Keto again but I suppose lowish carb and eliminate fructose might be worth a try. Although as I say, I had the dehydration issue first before eating a lot of fruit/juice. The extreme fatigue aspect is definitely something that's come on more recently though.

At least we have this !

Do you have any other oral issues ? It's possible that lactoferrin may help with dry mouth. There's also a liposomal colostrum that comes in capsules. I open one in the mouth, tastes pretty good. Sovereign Labs makes it.
Here's an abstract :
https://cdnsciencepub.com/doi/10.1139/bcb-2020-0052

"Depending on, or regardless of its iron-binding ability, Lf exerts bacteriostatic, bactericidal, antibiofilm, antioxidant, antiadhesive, anti-invasive, and anti-inflammatory activities.

Here, we report the protective role of Lf in different oral pathologies, such as xerostomia, halitosis, alveolar or maxillary bone damage, gingivitis, periodontitis, and black stain. "

 

[Crux]

BTW,

xerostomia = dry mouth

 

[Replenished]

At least we have this !

Do you have any other oral issues ? It's possible that lactoferrin may help with dry mouth. There's also a liposomal colostrum that comes in capsules. I open one in the mouth, tastes pretty good. Sovereign Labs makes it.
Here's an abstract :
https://cdnsciencepub.com/doi/10.1139/bcb-2020-0052

"Depending on, or regardless of its iron-binding ability, Lf exerts bacteriostatic, bactericidal, antibiofilm, antioxidant, antiadhesive, anti-invasive, and anti-inflammatory activities.

Here, we report the protective role of Lf in different oral pathologies, such as xerostomia, halitosis, alveolar or maxillary bone damage, gingivitis, periodontitis, and black stain. "

Thanks. Interesting and sounds as though Lactoferrin is likely beneficial to take either way. Do you know of any supplement that would be suitable? From what I see Lactoferrin isn't something that can be bought as a specific supplement.

 

[Crux]

There are plenty of types of Lactoferrin available on line. I have ' Jarrow's' apolactoferrin, the 'Sovereign Labs' colostrum, which has lactoferrin, and 2 lactoferrin nasal sprays.

Lf is a strong antimicrobial and antiviral. It just helped me get rid of a recurrent respiratory virus.