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PEM/PENE differences

soxfan

Senior Member
Messages
995
Location
North Carolina
@hamsterman ...I am still working on my insomnia as well...I just did the saliva cortisol to find out if it was high at night contributing to my frequent awakenings and un refreshing sleep.

I know if I could somehow get a decent refreshed sleep it would make all the difference for me. I would even take a small improvement as this has been my biggest challenge for years.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@soxfan Klonopin damages mitochondria. There are other ways of dealing with the symptoms you are describing.

To head off PEM/PENE I've found that loading up on NAC or glutathione, BCAAs, or ornithine and citrulline can go a long way. I also take NAD+ and small doses of hydrocortisone daily as a foundation.

For sleep, I struggled for quite awhile trying various things. The Fluge and Mella PDH study found that women with ME/CFS tend to be burning amino acids for fuel. Looking at my amino panel results showed I was short of those found in the study.

My doctor put me on glycine, taurine, theanine, GABA, and 5-HTP. They all helped, but it wasn't until he added citrulline that I started waking only a couple of times a night vs. 4-6. We discussed this and he had me get NO test strips from Humann on Amazon, and I learned I run short of nitric oxide, which is a part of the idea cycle. Citrulline acts on it. Finding this, my doctor added ornithine aspartate, and I slept perfectly!

Other things that might help, affecting different mechanisms, are:
  • Melatonin
  • Prometrium
  • Magnesium glycinate
  • Phosphatidyl serine (or Seriphos)
  • Kavinace
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Hi & hey ljimbo423~ What a great ‘key to find’ that high dose coq10 does that much to help your mito creation!
? What form/brand do you take or find helpful?

Yes, it's a blessing not to have those flu-like flares kicking my butt for 4 to 5 days straight!! :) I use Swanson vitamins brand regular coq10, not ubiquinol but I think most name brands will work just fine.

As long as they are in gelcaps mixed with some type of oil, which helps improve absorption.

I take Qunol 100mg for cardio benefits. I don’t see any ME relief?

You might want to try regular coq10 at a dose of 400 to 500 mg a day and see if that works better for you. Each of us having our own unique biochemistry makes it very difficult sometimes to find what works.

4,600mg is a ‘Whopper’! No side effects I take it?

I meant 400 to 600 mg not 4,600 mg.:) 4,600 mg IS a whopper!! No side effects.

Jim
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
@hamsterman ...I am still working on my insomnia as well...I just did the saliva cortisol to find out if it was high at night contributing to my frequent awakenings and un refreshing sleep.

I know if I could somehow get a decent refreshed sleep it would make all the difference for me. I would even take a small improvement as this has been my biggest challenge for years.

I think most of us have a similar issue with cortisol. Mine is also high at night and low in the morning. Somehow, I was able to correct this a couple months ago... but it's back to being screwed up again now. It might have been due to LDN, but now I'm back on LDN and I can't seem to get it's benefits anymore. Its driving me nuts.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Have you tried Phosphatidyl serine before bed which can help reregulate your cortisol? Or Seriphos, which is stronger? I have used both with some success.

For day, my doctor has me on Vital Nutrients Adrenal Support which is the most comprehensive product I've seen, And I've looked to try to buy others when I ran out, and nothing is as robust.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Learner1 ...I am waiting for my saliva tests to come back. The doctor is assuming my cortisol is high at night ...but it seems to me it’s become worse . I had a bad crash in December an a ACTH test done in January and I haven’t been the same since.

5 years ago I was tested an had high night time cortisol and was taking Seriphos. Problem was I also had very low morning and noon cortisol and the Seriphos seemed to be lowering it all so I was feeling barely alive!

Once my tests come back we will decide if anything what to do about it....

I was taking Adrecore for a while during the day but didn’t feel a difference...

I am seeing a Functional Medicine doctor but I am not sure how much she knows about CFS .
She is not fond of prescription medications and likes to use supplements. I will list what you suggested and see what she says.

I did take Kavinace as well but it didn’t seem to help much. At my last appointment I asked her about herbals and other supplements for sleep but she thought I was too bad off right now to use them and suggested I stick with Lunesta for now until all my testing comes back.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I used to take Seriphos too, and it also became overkill. I took Jarrow 100mg PS til recently.

I can't tell you what a difference amino acids have made. My amino panel deficiencies matched the pattern found in Fluge and Mella's recent paper, attached. Ornithine and citrulline made a night and day difference, but theanine, glycine, 5-HTP and GABA all can play roles.

Having adequate progesterone is important, too.

I think we compared ACTH tests previously. I take 10mg hydrocortisone at 7am and 10 more around noon, so that it wears off by bedtime. I started at 30mg a day, but as I've improved, iced dropped it back. Dome days, I only take 5mg for the afternoon if I'm doing doing really well.

Best wishes in sorting it out. A good night's sleep is important!
 

Attachments

  • Fluge Mella amino PDH.pdf
    1.6 MB · Views: 5

perrier

Senior Member
Messages
1,254
Not sure whether to post here.
Do folks with a diagnosis of Lyme suffer from PEM?

I am trying to determine some of the symptoms differences between ME and Lyme, as there are no reliable diagnostic tests at this point.

My subjective impression: I met a number of folks who told me they had lyme and were treated for it, and I noted that non of them were prostrate in bed for months and years. They were often sick, and sometimes bed bound but not in a constant way in which I see ME patients.

The other thing I noticed is that they did not complain of PEM.

I would really like to see a list of differences between the two conditions.

But any input would be enlightening.
 

Sundancer

Senior Member
Messages
569
Location
Holland
Do folks with a diagnosis of Lyme suffer from PEM?

I am trying to determine some of the symptoms differences between ME and Lyme, as there are no reliable diagnostic tests at this point.


I like you posting that question here, hope others will chime in too!

I think I'm sort of atypical but anyway.

I've had a period of bed-bound ( say 20 hours per day in horizontal for about half a year) at 15 to 16 years old. I confirmed to the diagnostic criteria for ME of the ICD for youngsters.

at about 40 I got a tick-bite, after about 2 weeks I went to doctor telling him feeling bad, he did blood-test and ordered 2 months doxycycline. At first I really did better, the partial paralysis of face disappeared, brain worked better, feeling less ill. Then I got other symptoms, sicker and sicker and ended up bedbound again. This time for about 23 hours a day and feeling much sicker then at 16.

Both of these bed-bound periods followed on antibiotics, and for my body I feel there is a causal relation between the two. ( especially as these two are the only times I took antibiotics, I don't trust the stuff for this body)

But the last time at 50, my period of bed-bound followed on a combination of things that have stressed my body out ( one of them being a fluoride thing at the dentist) Last of these was a pneumonia. Again half a year bed-bound, it's getting worse every-time :cry::ill:.

sometimes I think that part of the people that have chronic lyme actually have ME, and another part of them has indeed an ongoing borrelia infection making them worse through the years. And this infection may go hand in hand with ME too.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
@soxfan , It seems that the driver of circadian rhythm is body temperature (I forget which clump of cells controls that). Cortisol follows the body temperature cycle. Maybe cortisol, and the intermediate steps to melatonin and proper sleep, can get out of phase with the temperature cycle. You could try measuring your temperature through the day to see if that's proper. Sleep is supposed to come at the low point in the temperature cycle.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
In 2011 I was infected with Borrelia. After a few years I began suffering from PEM.

Once I was tested positive for Borrelia afzelii, i began taking antibiotics. These gave instant relief to all my Lyme symptoms but not to PEM.

But - I know other Lyme patients who don’t have PEM.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I am a bit new to all this, as I've only felt "dodgy" for 11 weeks, with some decent times in between. My problem is when I feel a decent time -never super but not so bad -I start doing physical things. Or rather, trying to resume at least 50% of my normal life, which before March this year was a very physical life.

So then I start on a little garden task, and that leads to another one, and I'm quite happy and don't feel too bad at all. The exertion (within limits) actually feels quite good for me.
And then the next day I wake up feeling not too bad too, so happily get on with a little more "normal life" (baby steps of hope really) "I'll just go and get an extra log in for the winter." I always have to start doing that in Spring for the following winter, and live alone. Only one log, mind, and that was a pretty thin one.
Thinking "oh that's not so bad, maybe I'm slowly getting better." (?)
That might go on for a few days.

Then a few days later don't feel too good again. Twinges over my eye give me the warning, perhaps a very vague nausea, and wobbly legs in the shower....and a horrible disconnected/detached feeling which is indescribable but is certainly not my usual self, and sheer exhaustion. Eating my breakfast like a robot, can't concentrate on what I'm reading. (At least I can eat -I think. Some people can't. At least I CAN have a shower. Some people can't....

So then I know I have overdone something. I rest more in the day. Usually it doesn't last too long. Yep, I crashed a bit today after 3 days of not too bad. My own fault, I know. But energy came back to a great extent after dinner. Was like a wet rag before dinner.

It does seem like PEM to me. Unfortunately clear and simple payback for physical exertion in my case. I don't have too many mental pressures on me.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
@Wolfcub it might be ME/CFS and PEM, since it varies so much for each person, but it's possible that it's something else. Maybe you're depleting a nutrient, or accumulating a toxin that isn't being cleared properly. It might just be that it doesn't match my symptoms and delay times, but it sounds different enough that I wouldn't rule out other possibilities. If it's only been 11 weeks, I'm guessing that you haven't had extensive medical testing done to rule out other possibilities. Something is definitely wrong, and you should at least let the doctors try to find an answer. They may be useless at diagnosing ME/CFS, but they can find viral infections, glandular problems, etc...if it's not too difficult, and there's a standard test for it, and they're not thinking about golf. :rolleyes: