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Rest periods and can CFS people get really well?

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
The key for me has been what I spend my energy on. I am doing a huge amount of personal growth work, releasing old pain/loss/shame/fear as I feel it arising. I have been meditating for about six weeks. I started it because I knew if I couldn't get on top of my automatic mind and stop trying to do too much (usually housecleaning or chores) I would keep crashing. Mindfulness meditation opened up the floodgates to a bunch of repressed emotions.

This was the start, but what has really been healing me is reconnecting with my joy and doing things that make me happy and feel creative. I've done a ton of work on replacing negative thoughts with positive thoughts (I was pretty crippled by anxiety and panic attacks for several weeks in the depths of the crash -- that's completely gone. I am happy and excited about life now) and activating the parasympathetic system via vagus nerve stimulation, yoga, lovingkindness meditation and breathwork.
bravoo.gif
:hug:
 
Messages
15,786
yeah, I kind of figured that would be the response. feel free to check out the book.
So I guess you don't have a response to the questions raised above, and prefer to pretend that such questions are irrelevant and merely a symptom of our close-mindedness?

I'm not even sure why people bother with pseudo-explanations like the mind-body connection and activation of whatever. There's obviously no interest in actual understanding or a rational explanation for any process, so maybe it's safer and simpler to stick with "because I say so".
 

student

Senior Member
Messages
166
Dear Ahmo. I see your bravo: T a p p – a n d e n j o y ! ! Wow.

You are doing it!! Don’t question. It is worth being on this track. Now start enyoing. My lady ‚Heil-Praktiker‘ (health practitioner) Corinna showed me to „tapp“.

It is another expression – of giving yourself a clapp. See Ahmos „bravo“. So often the others are not doing this and they do not know how they could support us. So often others will not eaven see – what a big stepp this is: How much more to you in your situation - now. So start hugging your inner self. Go over to enyoing. Give the selfgratitude. Tapp your self – both hands on the outer arms. (Find your own way of saying the big- meaningfull) "THANK YOU!!!" this is good.

Not having been accepted - at that time. Not been wanted, not valued for the good you have done. Not to be in the place of a honorable position, where everybody would love to be. Not being admired from others – is perhabs the „most“ important surrounding – and it can play a key role in this whole cfs/me thing. Start to give yourself the acceptance for even this small steps of the day. Go and do it verry regular. Why not 10 times. And later try it more often eacht day.

The lacking a scence of value. This was part of my big crash situation a year ago. Not lifting – me up much. All of this support was missing verry much from the outside. It did me a little bit of good, to shyli starting to do this more practicall – to myself. I started with the tapping (on arm and shoulder). I wish I had done it much much more often – in that time befor the crash. Let me try to put it this way again. What exactly can be your step number two in this process? You have started the medical therapy. Good. Where are these psychologicals now.

Resting. Yes, verry good. I only just started to put this verry much in to practice. I am in the third week of my methylation. And now I enjoy every benefit from resting – verry short after practical work. I am putting it into practice and start doing it. (Thanks- to you writing in this thread.) But it can be far bigger than the physical rest. You can actually do today what parents do. You have been guided well. Radix (your roots) all this is fine, now start to give the wings like parents could give to there kids. (Roots & wings – Goethe said.) You are in charge. You go with the inner self – the steps that maybe your parents not dared to go at the time. You can actually be the wellcoming friend, hugging and enjoying yourself. Supporting and trusting. Build something, that maybe starts small like a seed. Now give the best you have. Be the friend of your innermost self. Make it a choice to be optimistique and positive. Go with a loving side, have your heart whide open and allways turn towards your „steffen“ (here place your name) jo.zzy. In this you rest – like in a kokoon.

Jo.zzy enjoy

Sorry – I dare to write it this way today. After aktivitys, shortly after sucessfull doing – go into this. Take your time off. Do it your way… relax early. And start making plans for this.
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
@Hanna, I'm sorry to hear that. You can get that back, I firmly believe that now. If you can read Last Best Cure I highly recommend it. Written by a science journalist with 17 different chronic, severe autoimmune conditions who spent a year exploring the mind-body connection and adopting the practices that had the most hard science behind their ability to shift the body from a sympathetic fight or flight overactivation to a more balanced, less inflammatory state.

She experienced huge improvements in her symptoms.

If you like, msg me and I will email you a copy of the Reverse Therapy book. It makes the case for how constant rest is detrimental and what the body is really wanting from us. RT has about an 80 percent success rate, though that is skewed a bit because people who try it are already open to making changes in their psyche and open to being more connected with the messages from the non-brain parts of our nervous system.

@sueami I sincerely wish you to continue to feel improved with the body-mind work !
 

melamine

Senior Member
Messages
341
Location
Upstate NY
What do you think : if someone has chronic cardiolipin antibodies (I do since 1998), no matter the supplements we may add, or the rest periods, it is likely that there is no gain, untill something can be done to suppress those antibodies ?

@Hanna - I tested negative for anti-cardiolipin ab even though I have autoimmune activation, but the neurologist who ordered the test evidently thought it possible. That does not negate the possibility of an electron transport chain problem IMO, but indicates to me that it is not likely of an autoimmune nature.
 

melamine

Senior Member
Messages
341
Location
Upstate NY
How on earth is "over-activation" supposed to result in inflammation?

Stress is a notorious autoimmune activator and is also apparently involved in activating inflammation when autoimmunity is not present. There are many articles such as this one: http://www.ncbi.nlm.nih.gov/pubmed/21928900

I don't know. I've seen a prof of Immunology several months ago, and though those cardiolipin antibodies clearly appear chronically, he said I didn't have any immune problem and I am searching in the wrong direction (have to see a neurologist... who will say the same of course. same circus for 17 years).

I have also positive ANA, anti Scl70 and more, but apparently, not according to a pattern he knows. All those results are positive but not sky-high.

@Hanna - you might ask about a Dx of Mixed Connective Tissue Disease, which is the fall-back when antibody markers are present but do not rise to the level of a specific disease. It is an immune problem and it may have been triggered by deficient immune response to infections and/or toxins.
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
Stress is a notorious autoimmune activator and is also apparently involved in activating inflammation when autoimmunity is not present. There are many articles such as this one: http://www.ncbi.nlm.nih.gov/pubmed/21928900



@Hanna - you might ask about a Dx of Mixed Connective Tissue Disease, which is the fall-back when antibody markers are present but do not rise to the level of a specific disease. It is an immune problem and it may have been triggered by deficient immune response to infections and/or toxins.

@melamine but Immunologists once again are in charge of those sort of Dx, aren't they? and so far they are very pleased with the CFS Dx. So they don't have to do anything, since it's considered here as a hysterical women disease :meh:.
Don't succeed in finding a good internist who will do the job.
 

melamine

Senior Member
Messages
341
Location
Upstate NY
@melamine but Immunologists once again are in charge of those sort of Dx, aren't they? and so far they are very pleased with the CFS Dx.

MCTD is a Rheumatological category. I don't know if there are any treatments offered for it or how safe they might be relative to possible benefit, but if you have it as a secondary manifestation of CFS/ME/SEID then you will still want to look into treatments for the latter.

Immunologists are useless unless they specialize in CFS/ME.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
D-ribose looks like bad news, as it causes advanced glycation:

D-ribose induces cellular protein glycation and impairs mouse spatial cognition.

That's odd -- I hadn't heard that before. In fact, this study w/humans showed some hypoglycemia and other issues, but concluded that "the oral tested doses of DR are well tolerated and have minimal sequelae. We found a state of hypoglycemia following DR consumption with higher doses producing a more marked transient effect without long lasting insulin level correlations. Ten grams of DR produced an increase in uric acid concentration, not appreciated at lower doses. Varying doses of DR did not influence lactate production. D-ribose appears to be safe with acceptable laboratory parameters in healthy individuals."

"Healthy individuals" may make the difference of course, but anyway, here's the study:

https://ispub.com/IJNW/5/1/4921
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I believe that taking NADH can help if you can afford to take large amounts of it, but taking some niacin or niacinamide along with ribose and maybe some of the other ingredients in the NAD recipe can do the same thing for less money. I currently think that you don't need as much niacin or niacinamide as I was originally saying. I now think that up to 400 mg a day is enough.

Larger doses of niacinamide should help people who are overmethylated, but I am still not sure how to be certain if you are overmethylated. I am sure my sons are undermethylated, though.

I think that's the key thing -- niacinamide should help if one is overmethylated or has taken too many methyl group supplements and needs to quench methylation -- but not if one has a methylation block or is "undermethylated", which is more often the case with ME/CFS.

At least that's what Rich VanK found in his study w/Dr. Neil Nathan.

Also, it would not be good for those with histamine issues:

http://www.ncbi.nlm.nih.gov/pubmed/23426511
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
1500 mg a day might not be enough to make a difference if you are overmethylated. Were you taking folate, too?

As I understand it a blood histamine test is a pretty sure marker for over and undermethylation, with undermethylation pointing to high histamine, but I don't think very many doctors use it. Treatment with niacinamide doesn't change the histamine levels, but it affects the symptoms.

This study showed that "only" 100 mgs of niacinamide in fact increased histamine levels:

http://www.ncbi.nlm.nih.gov/pubmed/23426511

"The results showed that the plasma N(1)-methylnicotinamide level and the urinary excretion of 2-Py significantly increased after oral loading with 100 mg nicotinamide, which was accompanied with a decrease in the methyl-group donor betaine. Compared with those before nicotinamide load, five-hour postload plasma serotonin and histamine levels significantly increased."
 

nandixon

Senior Member
Messages
1,092
@dannybex, good find. That's helpful to know about the increase in serotonin as well, which could be either bad or good depending on the person (and what result they're trying to achieve).
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
H
I think that's the key thing -- niacinamide should help if one is overmethylated or has taken too many methyl group supplements and needs to quench methylation -- but not if one has a methylation block or is "undermethylated", which is more often the case with ME/CFS.

At least that's what Rich VanK found in his study w/Dr. Neil Nathan.

Also, it would not be good for those with histamine issues:

http://www.ncbi.nlm.nih.gov/pubmed/23426511
h


Interesting. How can I tell whether I am under methylated ?
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
H

Interesting. How can I tell whether I am under methylated ?

That's the $64,000,000 question. So many 'definitions' and different explanations (with Pfieffer's being somewhat outdated as he used folic acid instead of active folates).

Anyway, here's one link:

http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/

Rich Van Konynenburg has talked about it before on these forums, but I couldn't find a link right now. Hopefully others can chime in. @caledonia ? :)
 

caledonia

Senior Member
That's the $64,000,000 question. So many 'definitions' and different explanations (with Pfieffer's being somewhat outdated as he used folic acid instead of active folates).

Anyway, here's one link:

http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/

Rich Van Konynenburg has talked about it before on these forums, but I couldn't find a link right now. Hopefully others can chime in. @caledonia ? :)

@Mel9

If you have ME or any of the 30 or so diseases listed in my Methylation Made Easy video #1 you're undermethylated. The only exception would be certain types of mental health issues.

There are two types of overmethylation (or more precisely two different things called overmethylation). One is having too many methyl groups due to over-supplementation of methyl supps. This will overdrive the methylation cycle causing a revved up feeling. It can also cause mood swings if you have COMT mutations. This is the one where niacin will help calm things down.

The other one (used by Pfeiffer and Walsh) is for mental health and refers to having too much SAMe, which affects neurotransmitters which affects mental health. This can be due to SAMe SNP mutations or certain functional conditions. They suggest avoiding folic acid for this.

This post I made awhile back explains more about Walsh's overmethylation - http://forums.phoenixrising.me/inde...-methylation-in-a-way-i-can-understand.34707/
 

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
I decided to try this out this last weekend. I had completely exhausted myself taking the garbage out, and needed a rest before taking a shower. I normally would just sit on the couch or sit in bed propped up with pillows, and instead I decided to lay down completely in bed. The heavy "lead in my legs" feeling went away after just 2 or 3 minutes, and after 10 minutes or so I was able to get up to shower. I now see that my "sitting and resting" isn't enough. Sitting never gets the heavy legs feeling to go away. While I feel like a lazy SOB laying in bed during the day, it definitely helped.

Wow... I was searching the forum for ways to get rid of that lead legs feeling, and found this! A/ I forgot I ever posted that, and B/ I can't remember that I ever found any benefit from laying down? I could swear I had no benefit. Sheesh, dumb brain. I know I read this thread, I know I tried it. But I didn't remember I had a POSITIVE EXPERIENCE. I'd be embarrassed, but I know most here have experienced this. So here goes the second time at trialling this method.
 
Messages
516

Ribosylation triggering Alzheimer's disease-like Tau hyperphosphorylation via activation of CaMKII.

Type 2 diabetes mellitus (T2DM) is regarded as one of the serious risk factors for age-related cognitive impairment; however, a causal link between these two diseases has so far not been established. It was recently discovered that, apart from high D-glucose levels, T2DM patients also display abnormally high concentrations of uric D-ribose. Here, we show for the first time that the administration of D-ribose, the most active glycator among monosaccharides, produces high levels of advanced glycation end products (AGEs) and, importantly, triggers hyperphosphorylation of Tau in the brain of C57BL/6 mouse and neuroblastoma N2a cells. However, the administration of D-glucose showed no significant changes in Tau phosphorylation under the same experimental conditions. Crucially, suppression of AGE formation using an AGEs inhibitor (aminoguanidine) effectively prevents hyperphosphorylation of Tau protein. Further study shows AGEs resulted from ribosylation activate calcium-/calmodulin-dependent protein kinase type II (CaMKII), a key kinase responsible for Tau hyperphosphorylation. These data suggest that there is indeed a mechanistic link between ribosylation and Tau hyperphosphorylation. Targeting ribosylation by inhibiting AGE formation may be a promising therapeutic strategy to prevent Alzheimer's disease-like Tau hyperphosphorylation and diabetic encephalopathies.
http://www.ncbi.nlm.nih.gov/pubmed/26095350