is PEM adrenal crash?

[leaves]

Whenever I exert myself (either mentally, or physically) I get severe fatigue/ crash 2 or 3 days later. Exertion always involves both cortisol and adrenaline, both products of the adrenal gland.
The only symptom I have the day (or morning) after the exertion is that I wake up very early (like 5 or 4 AM). 4 AM is the time when cortisol should be LOWEST, but instead I feel a lot of adrenaline, or a cortisol SURGE.
This early awakening is most likely a result of some adrenal malfunctioning. Could it be that the increase in adrenaline/ cortisol during the exertion is the cause of some sort of adrenal malfunctioning that leads to an adrenal crash 2 or 3 days after our exertion? Is it possible that CFS/ME includes some variant of cushings syndrome?
If that is the case we should focus on restoring our adrenals. Would like to hear your ideas, and maybe anyone has observed reduced PEM when working on adrenals?
If there was some medicine that controls cortisol/ adrenaline then theoretically this could avoid PEM. Is there something that has this effect?
Could people also list whatever they found that reduced their PEM?

 

[Dreambirdie]

Adrenal fatigue/exhaustion is a BIG issue for me. It is part of the CFS equation for most of those I know.

I have many of the same symptoms you describe, and have struggled for decades to build up my adrenals.

The chronic inflammation from the viral load and the lack of deep sleep is what trashes my adrenals. I use acupuncture and TCM to assist the healing process, but it's been a long slow journey.

 

[leaves]

Hmm that is interesting, so you think it is caused by infections and deep sleep.. I definitely relate to the high inflammation. I have not a problem with deep sleep, but very little rem sleep (few dreams) that is getting better with methylfolate. As for herbs/ adaptogens; did you find anything that works?

 

[Sing]

Adrenal issues are part of this, PEM, but not all of it. We can look back on the Light study and maybe others to find other elements which are at abnormal levels a day or more out from an exertion. I wish it were something as simple as replacing low cortisol at that point, but unfortunately it isn't--in my case anyway. I have Cortef and take it, so I would know if that was all it was. There are other elements which go into an exhausted phase too. The only remedy I know of seems to be extra rest and quiet, time away from the computer and other electronic devices, noxious smells, and so on. Being outside in nature, being at a good temperature, gentle stretching and breathing, rest, reading, good diet--you know--all the things that help the body reset itself.

 

[richvank]

Hi, all.

I think that the place to look for the immediate cause of PEM is in the mitochondria. As you probably know, the mitochondria are normally the main producers of ATP in the cells, and ATP is what fuels the muscles. We know from the work of Myhill et al., as well as other published evidence, that the mitochondria are dysfunctional in ME/CFS. I think that the question with regard to explaining PEM is how and why do they become more dysfunctional after exertion or exercise?

One possibility that I have suggested in the past is that the additional production of reactive oxygen species, including oxidizing free radicals, which is inherent in energy metabolism and greater when there is more production and use of ATP, causes additional damage to the phospholipid mitochondrial inner membrane, which is where the enzymes that produce ATP are located. We know that these membranes are damaged, both from the microscopic observations of them by Dr. McLaren Howard at Acumen Lab and from the elevation of cardiolipin antibodies in PWCs, as detected both by standard cardiolipin antibody testing and by Dr. Hokama's test, which was developed for ciguatoxin, but which has been found to cross-react with cardiolipin-related molecules. Cardiolipin is normally found almost exclusively in the mitochondrial membrane. It would presumably take some time for the mitochondrial membrane damage to be repaired, and that would account for the duration of PEM.

Another hypothesis that has been advanced (by Dr. Myhill, based on the book by Dr. Sinatra) is the depletion of AMP, which is the substrate for production of ATP. When the energy charge of the mitochondria is driven low by exertion in the presence of inadequate production of ATP due to the ongoing mito dysfunction, ATP drops down to ADP and AMP, and AMP is then degraded and lost from the cells. To rebuild it, ribose is one of the substances needed, and its rate of production is slow, thus accounting for the duration of PEM. This would also explain why supplementing D-ribose has been helpful for some PWCs.

It's very true that there is HPA axis dysfunction in ME/CFS. However, supplementing cortisol has not been found to be the solution to PEM, and in fact can cause further decrease in the normal production of cortisol by the adrenals, leading to dependency on the supplementation.

For what it's worth, the GD-MCB hypothesis proposes that both the fatigue (including PEM) and the HPA axis dysfunction, as well as the myriad of other unpleasant aspects of ME/CFS, stem from the same common cause, i.e. a vicious circle mechanism in the basic biochemistry that makes this a chronic disorder. This vicious circle mechanism involves a depletion in glutathione, a resulting functional B12 deficiency, which in turn causes a partial block of methionine synthase in the methylation cycle, and this then causes draining of folate from the cells
and maintenance of the glutathione depletion, completing the vicious circle.

If this hypothesis is correct, lifting the partial methylation cycle block will break the vicious circle, and two of the ultimate benefits will be elimination of PEM and restoration of proper HPA axis function. I must acknowledge, though, that based on experience over the past four years with methylation treatment, additional specific treatments may need to be added to counter conditions that were present before the development of the vicious circle and contributed to its onset, and also issues that developed later, as a result of the effects of the vicious circle mechanism on the immune system and the detoxication system.

Best regards,

Rich

 

[Shellbell]

Thank you Rich for posting this. This is very informative.

I have been having huge issues lately with with severe fatigue. I am tired all the time now. I even have a hard time staying out of bed these days. I started the methylation/b12 protocol 3 months ago. Things were going fairly well until a month ago, I crashed really hard. Since, I haven't been able to bounce back. My body pain had competely gone away for the first two months, fatigue and weakness had greatly improved, and I was even getting ready to start exercising again.

I can't even think about exercising now, let alone take care of my family. At this point, I am still on the protocol, but am getting really discouraged day by day.

A couple of notes, I am being treated (naturally) for a non-melanoma skin cancer. I had a biopsy 3 weeks ago and now I am using a product call Curaderm (from eggplant extract) to kill the cancer cells. I refused topical chemo because of the side effects, that sounded just like CFS. I don't know if this is causing issues while on the methylation/b12 protocol. I am on day 3 of treatment and it can last anywhere from 1 week to 3 months. Interestingly enough, the lesion appeared after starting the b12 protocol. The rest of my dark patches on my face are fading away on their own. Not sure what this means.

What I noticed is how much worse my digestion has become. I have severe pain, bloating, acid reflux, and gas.

My questions, and I think you have addressed this before, will treating my digestive problems enhance the methylation protocol? Are the supplements too much for my digestion to handle at this point?

I was tested last summer with overgrowth of bad bacteria (staph and strep). I think I picked this up when I had food poisoning a year ago last January. Even though I got better, I still had remnants of this going on. Actually, since taking cipro, my digestion has never been the same. The doctor treating me last summer never treated this before starting this protocol. I was on digestive enzymes, bile salts, and hcl for 6 months before restarting the methylation. I refuse to take any antibiotics now since I seems to react to all of them anyway. I am open to taking natural forms though.

Anyway, I think this is all putting a huge drain on my adrenals. I haven't had this kind of fatigue/weakness in a long time. I wanted to also note that I am on mostly oral bioidentical hormone replacement therapy. I wonder if this is aggravating my digestion now, even though I have been on it for years. I am assuming that restarting methylation can process hormones more effectively. Maybe my hormones levels are getting too high?

Any suggestions or info are greatly appreciated.

Thank you Rich!

Shelly

 

[ukxmrv]

Leaves,

For me the low adrenal symtoms are (I'm matching them to the times of the low cortisol from the blood and saliva tests)

1. shaking, dizziness
2. Nausea to vomiting
3. black spots in front of my eyes
4, lack of co-ordination
5. brain dead / fogged

When I get PEM I don't get a change to early morning waking or any change to the above symptoms in the morning. They are still the same.

Do you have demonstrated low cortisol every day and what are the symptoms?

Are these the same as what you have identified as PEM?

Just brainstorming here. No need to answer if it is not useful.

 

[caledonia]

Shelly,
You didn't list probiotics. The anti-biotics will destroy the bad bacteria, but also the good bacteria. If you take anti-biotics you should always take probiotics to get the good bacteria back in your gut.

The gut is always the best place to start because 80% of your immune system is there, and good digestion is necessary to assimilate other supplements.

I did probiotics, digestive enzymes, betaine hydrochloride, etc. for years. After awhile on the methylation protocol + adrenal supplements I didn't need them anymore.

 

[caledonia]

Leaves, high cortisol at night is typical for late stage adrenal fatigue. You can do a 24 hour saliva cortisol test to diagnose this. Treatment is tricky. I've had many adverse reactions, and from what I hear most naturopaths (including mine) don't know how to treat later stages. I'm just getting started with the Clymer Institute who are adrenal fatigue specialists.

In general, methylation + adrenal treatment has been a good combination for me this past year. I've had many beneficial things happen including being able to get off Zoloft after 10 years, 80-90% improvement in MCS, improved heat tolerance and able to sweat, digestion improved so that I no longer need probiotics, digestive enzymes or betaine hydrochloride. A bit more energy and PEM reduction, but not huge, like 3%-5%.

 

[Shellbell]

Caledonia, thank you for the info. I forgot to mention that I was on high dose probiotics a couple of years before, while on, and a couple of years after my antibiotic treatment. The problem now is, I react to them. I tried to take them last year, I think it was Custom Probiotics, and they made me horribly ill. I haven't tried since.

This new doc I am going to see next month is really big on them. I am hoping he can find a way to help me with taking them because I really think they are important. I think one of the biggies he uses is VSL#3.

It is really good to hear that you don't have to rely on your digestive support anymore. Btw, what have you been taking for your adrenals. I know you have probably posted this before, but I am interested what has worked for you.

Thanks again,
Shelly

 

[taniaaust1]

I havent found anything at all to help PEM except aggressive rest therapy (or taking care not to cause it in the first place).

I've tried D-ribose and cortisol supplementation (as mine is abnormally low) without any luck.

 

[heapsreal]

I havent found anything at all to help PEM except aggressive rest therapy (or taking care not to cause it in the first place).

I've tried D-ribose and cortisol supplementation (as mine is abnormally low) without any luck.

i agree, plus a valium sandwich, lol.

 

[August59]

Hmm that is interesting, so you think it is caused by infections and deep sleep.. I definitely relate to the high inflammation. I have not a problem with deep sleep, but very little rem sleep (few dreams) that is getting better with methylfolate. As for herbs/ adaptogens; did you find anything that works?

I used to think I slept very well. Started having mild elevation in cholesterol, triglycerides and blood pressure. Was has some daytime drowsiness, but I was driving a lot at the time. I was lucky that my GP saw a trend and referred me to a sleep specialist with the intent of getting a sleep study. My first sleep study indicated very few disruptions, no snoring and below average apeneas. However, I was getting "0" Stage 3 or 4 sleep. This study was done about 3 years before I came down with CFS.

My 2nd sleep study (about 3 years later, but still before I became ill) showed the same pattern (i might have been on Ambien CR at the time). I had a 3rd sleep study while taking Xyrem and I only got 9 minutes of Stage 3 and 4 sleep.

I am strongly suspicious of adrenals affecting having an impact on my sleep quality, but I have yet to convince a doctor to even test my adrenals. I went to endo because my thyroid and testosterone levels were not staying consistent even though I was on a very steady dose of hormones for more than 6 months. My endo's advice was to keep taking more thyroid meds which started causing high blood pressure and pulse rate.

Is my adrenal glands affecting my sleep or has my lack of deep sleep caused my adrenals to malfunction? I'll probably never know for sure. I do know that a persons health will decline rapidly without some Stage 3 and 4 sleep. It is impossible for the body to heal correctly without Stage 3 and 4 sleep. I think the adrenals are a very good place to start.

The adrenals control a lot of hormones and the levels of these hormones need to be checked. Maintaining a balance of these hormones during the healing process I would think is essential to successful adrenal therapy.

 

[heapsreal]

With the addition of licorice to try and help my adrenals and it mainly helps cortisol, my sleep over the last few nights has been very hit and miss, so im dropping it for now and see what happens. The adrenals are a very delicate juggling act.