21 replies to this topic

[elc202]

I know plenty of people who supplement with Alpha Lipoic Acid. Mostly for MS.

These two studies suggest that it does cause kidney damage.

https://pubmed.ncbi....h.gov/34662650/

https://www.scienced...468024924014918

 

Can someone comment on this?

[pamojja]

When I started to supplement comprehensively against a walking-disability from PAD 15 years ago, my BUN/Creatinine ratio was for the first 3 years consistently above normal, an online calculator predicted CKD stage 1.

 

Since then no more, Just had my lowest BUN ever at 14 mg/dl. In average, I supplemented 400 mg/d ALA. But went up to about 700 mg/d the last 3 years.

[elc202]

When I started to supplement comprehensively against a walking-disability from PAD 15 years ago, my BUN/Creatinine ratio was for the first 3 years consistently above normal, an online calculator predicted CKD stage 1.

 

Since then no more, Just had my lowest BUN ever at 14 mg/dl. In average, I supplemented 400 mg/d ALA. But went up to about 700 mg/d the last 3 years.

 

That's good to hear,

Do you take the regular ALA or Na-RALA? Do you take Biotin or Thiamine with it?

 

Many thanks for your answer,

[hydrus]

Lipoic acid may cause kidney damage by having an affinity for some heavy metals due to being a possible chelating agent. Kidney injury can sometimes be seen during chelation therapy.

 

 

[pamojja]

Do you take the regular ALA or Na-RALA? Do you take Biotin or Thiamine with it?

 

ALA only. I take most plant-extracts, amino-acids, minerals (with the exception of iron and copper), fat- and solubles vitamins and conditionally essential nutrients with it. Story of my supplementation and remissions retold here: https://www.longecit...nal-remissions/

 

 

[hydrus]

ALA only. I take most plant-extracts, amino-acids, minerals (with the exception of iron and copper), fat- and solubles vitamins and conditionally essential nutrients with it. Story of my supplementation and remissions retold here: https://www.longecit...nal-remissions/

 

 

Interesting recovery story. May I ask you in which order symptoms/health issues developed and went away and if you have been able to recover completely?

Edited by hydrus, 01 July 2024 - 05:07 PM.

[pamojja]

Seasonal rhinitis still persists. The order of development of health issues is documented there (where it is clear: I still have no idea when I had a silent stroke), including medical history in the past. PAD's walking disability ceased after 7 years. COPDs symptoms after 1 year, PEMs after 10 years only.

[hydrus]

you mean your symptoms went away after 1,7 and 10 years and only seasonal rhinitis remains? 

[pamojja]

Exactly the debilitating symptoms of my main conditions ceased in 2012, 2016 and 2019.

[hydrus]

did you take anything specifically for your PEMs? How many years did you have them before you started treating them?

[pamojja]

As written in my recover story, there were 3 strongly correlating interventions, before PEMs ceased. However, at that time I also quit 1 of my 2 part-time jobs, which also helped greatly (pacing). Still, after that recovery I never had the 3 hallmarks of PEMs (bodily pains, cognitive and sleep issues) for longer than in 'ordinary' fatigue - longer than the day itself it occurred, anymore. Even though active the following days.

 

Obviously, in the classification of ME/CFS, my version was rather mild, compared to usually much more severe cases. And I certainly can't claim my approach would have any chance to potentially put those into remission too.

 

Before remissions of PAD and COPD I interpreted my PEMs rather as fatigue of chronic disease. Only after those 2 remissions I considered it as PEMs. as in ME/CFS.
 

 

May I ask you in which order symptoms/health issues developed and went away and if you have been able to recover completely?

 

To clarify further, the walking disability, the COPD, diabetes and PEMs altogether were greatly disrupting my life. Before in life I had much worse diseases, However, all of them resolved, didn't had such a chronic worsening prediction, and gave the severe disabilities to our social ministry - to have my total bodily disability first temporarily evaluated at 60% (because the saw a slight change to get the walking disability fixed with risky intervention), and finally with the PEMs remaining only, as permanent bodily disability estimated at 50%. Moreover, from my perspective only these diseases, compared to my former also very serious ones, were only now endangering my ability to live independent and being able to come up on my own for my living.

 

But 2 former diseases were also taking all my patience and put me in the horizontal for 8 months each. Planto-pustolar psoriasis, with both whole feet-soles blistering and festering in 1996 for that many months. And spondilodiscitis in 1999, an infection of the spine and thereby dissolving 2 Vertebrae in my case. However, I and my doctor in Bodhgaya at that time were ignorant, oversaw the sondilodiscitis, and misdiagnosed it as a displaced disc only. Therefore, it was left to heal on its own under worst pains, and where 2 Vertebrae completely calcified and fused.

 

Luckily, as I found out years later with the proper diagnosis of what had happened then. Because usually, spondilodiscitis untreated can lead to death, and is usually treated with antibiotic IVs, along with surgical Vertebrae fusion. I've met only 2 adults treated this way. Both with permanent disability and life-long morphine pain-management. While in my case only ordinary lower back pains after exertion, preventing my to work in construction only as before, but still able to change my profession and continue working.

 

By the way, the worse pain in 1999 I was only able to alleviate with ibuprofen, up to 4500 mg a day. Which explains my CKD stage 1 later.

 

After this excursion back to my PEMs, which always were caused by more than up to 4 hours mental or physical work, or less than 10 hours daily sleep. I'm still unable to work intensely any longer. However now the fatigue doesn't extend any further than the same day. Additionally, no more cognitive and sleep impairments. But precise as a clockwork, lower back pain from the ancient spondilodiscitis.

 

So not comparable to the disabilities from PAD, COPD or PEMs. Just temporary lower back pain, and so in this respect not recovered completely. However, a world of difference to the 3 livelihood endangering chronic conditions.

 

 

 

 

 

 

Edited by pamojja, 02 July 2024 - 10:11 AM.

[pamojja]

Dangerous, Irresponsible x 1

 

Yes, taking up to 4.5 g per day ibuprofen is utterly irresponsible and dangerous. But we probably all were young, unconcerned and ignorant. And I could correct the damage done to the kidneys again, in retrospect.

 

Which wouldn't be possible with the standard of care treatment for spondilodiscitis: Surgical fusion and additional lifelong management with morphine.

 

[hydrus]

sounds like your PEMs were some kind of adrenal fatigue, that would explain why it went last and why they were milder compared to what is seen in full blown CFS

[pamojja]

ME/CFS is a syndrome of well and clearly defined symptoms. Some of them, which by themselves aren't ME, do have biomarkers. But as a whole, there isn't one. ME/CFS is divided into four levels of severity: mild, moderate, severe and very severe. Even mild sufferers have already lost at least 50% of their functionality

 

Adrenal insufficiency has the clear biomarker of deficient steroid hormones. Adrenal fatigue isn't clearly defined by symptoms, has no biomarker, and therefore isn't considered a disease on its own by medical professionals. Nor could it be the milder form of Adrenal insufficiency, otherwise a slight decline in the labaratory results would be obvious.

 

So your statement amounts to something like:

 

sounds like your PEMs were some kind of disease

 

The mildness with 50% disability is already explained by the ME/CFS severity grades.

 

Edited by pamojja, 04 July 2024 - 11:45 AM.

[hydrus]

well no one knows what causes ME/CFS but I believe some sufferers have some kind of adrenal hormone system dysfunction which is the result from long-term illness.

[pamojja]

...adrenal hormone system dysfunction which is the result from long-term illness.

 

Adrenal hormones can be measured, and are corrected by some endocrine docs by hormone replacement in ME/CFS too. If that were a cause - long term illness and adrenal hormones - then we would have a working cure for ME/CFS.

 

But fatigue of chronic disease or Adrenal insufficiency is very different from post-exertional malaise. In that, the later crashes on exertion only. Isn't continuous and alleviated by proper pacing only.
 

[hydrus]

Adrenal hormones can be measured, and are corrected by some endocrine docs by hormone replacement in ME/CFS too. If that were a cause - long term illness and adrenal hormones - then we would have a working cure for ME/CFS.

 

But fatigue of chronic disease or Adrenal insufficiency is very different from post-exertional malaise. In that, the later crashes on exertion only. Isn't continuous and alleviated by proper pacing only.
 

 

I don't agree completely here. Medicine tends to ignore subclinical and atypical hormone disturbances. Being within  a lab range doesn't mean much.

 

People with ME/CFS as a group do have lower than average cortisol levels I believe and some respond very well to adrenal treatment.

 

Crashing with exertion and improving with rest would also be seen with adrenal problems. Many people with ME/CFS are also severely fatigued between crashes/PEMs.

 

 

The problem is that ME/CFS is likely not one single illness so it would not be a cure for everyone just for some individuals where the problems are coming from the adrenal hormone system.

 

Dr Bou-Holaigah and colleagues¹ observed that nearly half of patients treated with fludrocortisone reported complete or nearly complete resolution of CFS symptoms. Although partial, this response represents good success, if we consider that no previously tried therapy, except licorice,^2,3 has been reported to be consistently effective.Fludrocortisone is the typical mineralocorticoid supplementation for Addison's disease,⁴ which also has been treated with licorice.⁵ Both this common therapeutic effectiveness and the recently confirmed hypocortisolism in CFS patients⁶ suggest that the NMH that occurs in CFS is a mere consequence of an underlying atypical adrenal insufficiency.

 

 

https://jamanetwork....abstract/395493

[pamojja]

Medicine tends to ignore subclinical and atypical hormone disturbances. Being within  a lab range doesn't mean much.

 

Exactly, that's why I use much narrower lab ranges, for example from functional medicine practitioner, or shown to be beneficial to longevity, parallel to 'normal' ranges, where there are too many in the 95th percentile already since long diseased.

 

People with ME/CFS as a group do have lower than average cortisol levels I believe and some respond very well to adrenal treatment.

 

Not sure, But it is definitely not defining ME/CFS. Part of its comorbidities, maybe. That's why I said, '...not even slightly decreased'. My dozen cortisol test have and still are slight below the max. range for AM, above max. limit for PM and 24 hour urine collection cortisol. And no change during worsening periods, or remissions.

 

Crashing with exertion and improving with rest would also be seen with adrenal problems. Many people with ME/CFS are also severely fatigued between crashes/PEMs.

 

Chronic fatigue can part of a many diseases, so also ME/CFS. But again, not a defining symptom. Just saw a paper about the prevalence of distribution in chronic fatigue of chronic disease. PEMs are simply not mentioned in that paper. Or a defining symptom in ME/CFS, other than in PEMs.

 

The problem is that ME/CFS is likely not one single illness so it would not be a cure for everyone just for some individuals where the problems are coming from the adrenal hormone system.

 

A good and comprehensive resource by a well-informed insider @hip, long-standing member of PheonixRising forum: https://mecfsroadmap.altervista.org/

 

You will mention too many esoteric conditions, laboratory tests and treatments possibly associated or somewhat helpful with ME/CFS. If searching in it for 'adrenal' one finds 1 short mention only:

 

 

Low-dose hydrocortisone (5 to 20 mg daily) reduces fatigue and improves wellness, though it can suppress adrenal glucocorticoid responsiveness in some patients.1 2 Note that even low-dose corticosteroids such as hydrocortisone can increase the risk of psychiatric disorders.1

 

https://jamanetwork....abstract/395493

 

If you have assess to that full study, do check for the inclusion criteria in that study. Because so often in Chronic fatigue studies, those with severe, moderate or mild ME/CFS (with at least 50% disability) were not even included. So really not a study of real ME/CFS.

 

Edited by pamojja, 05 July 2024 - 01:09 PM.

[hydrus]

Chronic fatigue can part of a many diseases, so also ME/CFS. But again, not a defining symptom. Just saw a paper about the prevalence of distribution in chronic fatigue of chronic disease. PEMs are simply not mentioned in that paper. Or a defining symptom in ME/CFS, other than in PEMs.

 

 

I have PEMs and I improved dramatically with adrenal treatment and I am not the only one.

Edited by hydrus, 05 July 2024 - 06:59 PM.

[pamojja]

Did your PEMs cause loss of at least 50% of your functionality too?

 

 

[hydrus]

 

Did your PEMs cause loss of at least 50% of your functionality too?

 

it's hard to quantify but they are  a serious limiting factor as they greatly limit what I can do. If I avoid them completely which means near zero stressors which is not compatible with any sort of life I am much improved.

[pamojja]

it's hard to quantify..

 

To help you with that, here is the differentiation by HIp
 

 

● Those with mild ME/CFS may be working full or part time, but struggle to do so. Of necessity they may have stopped or curtailed all leisure and social pursuits.

● Those with moderate ME/CFS are generally not able to work, probably don't leave the house much, have to perform domestic chores slowly with breaks and rests, and may need 1 or 2 hour's nap in the middle of day.

● Those with severe ME/CFS are more-or-less fully housebound, and likely bedbound (or lying horizontal on a sofa) for much of the day. They are unable to leave the house except on rare occasions, and usually dependent on a wheelchair for mobility, except for very short walks within the home or garden. They find domestic chores like cooking or any form of housework very difficult or impossible.

● Those with very severe ME/CFS will bedbound nearly 24 hours day, except for a few minutes each day to go to the bathroom. Dependent on help for all daily care. Often unable to tolerate any noise, and are generally extremely sensitive to light.

 

Further information on what it is based in that post.

 

Edited by pamojja, 05 July 2024 - 07:43 PM.