• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Where are we on understanding and treating ME/CFS today?

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Oh, a daory free diet is something I have been on lately more or less strictly and thaat may be helping too but I notice a distinct chage a few hours after every dose of creatine.
If there was only one thing could take - creatine would be the one
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Oh, and compression clothing seems to have a big effect on me
putting on footless tights - up to the waist - and a clingy singlet or t shirt can reverse a crash in an hour or two

Likewise aquaerobics always helps me sleep better maybe for the same reason
compression of fluid forcing it form lymphatics to the venous system
 

GcMAF Australia

Senior Member
Messages
1,027
Oh, and compression clothing seems to have a big effect on me
putting on footless tights - up to the waist - and a clingy singlet or t shirt can reverse a crash in an hour or two

Likewise aquaerobics always helps me sleep better maybe for the same reason
compression of fluid forcing it form lymphatics to the venous system
This is interesting Allyson, removing toxins??
 

GcMAF Australia

Senior Member
Messages
1,027
Rich,

Thank you for your generous contributions to our forums. From an orthomolecular point of view, do you see any relationship between a ME CFS patient (me) whose symptoms started with chronic neck pain. The dorsal root ganglia is a focus for me because my spine feels like it is on fire for the last 8-9 years.

3. Dorsal root ganglionitis--Due to infections as a result of the immune dysfunction that in turn results from the vicious circle mechanism. Glutathione depletion inhibits the cell-mediated immunity, and the disruption of lowered levels due to the HPA axis dysfunction allows inflammation to increase.

In November 2010 my lab results indicating that on top of being XMRV positive (sept 2010) I tested positive for HHV-6 ( 3.45), Chlamydia Pneumoniae AB IGM (>1:256), Cytomegalovirus AB IGG CMV IgG (3.1), anemia (on going) High C-Reactive Protein, Vitamin D defiency (29), (in spite of taking 3,000 I.U. a day!) Low DHEA Sulfate (15.0), Mycoplasma Pneumoniae IGG AB (104) Low Testosterone (258) on going, and it suggestive of a past Epstein Barr Virus infection.

I went off valcyte after 14 months in 2012. It did help. I am waiting for Nagalase levels to come back from Belgium. Like others who post here I am of the walking dead making way through life. I went off all pain meds in Dec 2011. The pain is in my spine and my muscles. Any insight you might be able to shed would be appreciated.

I have a sister who had 4th stage Lymphoma at 19 who just passed (54) and a sister with Chrohns that had started Epstein Barr when she was 16.

Again thank you for your dedication and Posts!.
This is interesting,
Dainty has some excellent relief with her treatment of "structural problems",
Any update on nagalase levels??
 

Old Salt

Rowing the boat
Messages
70
Location
S/W Pa.
Hi, mellster.

Thanks for your input. I'm glad that methylation treatment has helped you.

I agree that a better understanding of the immune system dysfunction in ME/CFS is needed.

I also agree that taurine can be helpful, at least for some PWMEs. For those who have one or more upregulating SNPs in the CBS enzyme, however, adding taurine may not be a good idea, because they may already have more than normal. I hope it helps you.

Best regards,

Rich
 

Old Salt

Rowing the boat
Messages
70
Location
S/W Pa.
I would like to try activated charcoal to help clear some of the pathogens from the gut but I'm concerned that it would bind the nutrients as well. Low on nutrient absorbtion as it is. Is this a valid concern?
I know that I have a major gut Candida problem. When I attack it with herbs or pro-biotics, the die-off is so dramatic, it demobilizes me completely, followed by a major sinus infection, [due to mobilizing the Candida toxins] that I control with a Silver Biotics product, applied directly in the nostrels. It's effective, for that aspect. RP
 

richvank

Senior Member
Messages
2,732
Hi, Old Salt.

It's best to take activated charcoal at least two hours apart from taking vitamins.

You might consider Candex for yeast. It contains enzymes that digest their cell walls, and there usually isn't a big die-off reaction.

I always recommend working with a physician.

Best regards,

Rich
 

Old Salt

Rowing the boat
Messages
70
Location
S/W Pa.
Hi, Old Salt.

It's best to take activated charcoal at least two hours apart from taking vitamins.

You might consider Candex for yeast. It contains enzymes that digest their cell walls, and there usually isn't a big die-off reaction.

I always recommend working with a physician.

Best regards,

Rich
 

Old Salt

Rowing the boat
Messages
70
Location
S/W Pa.
Thanks Rich, I've tried most all the Candida killers. No matter how it's done, they spill out their toxins [to which, I am highly sensitive]. What is badly needed is a "toxin neutralizer"!
I doubt there is a blood test to find and identify toxins in the blood.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
This is interesting Allyson, removing toxins??

I am not sure if it is due to rmoving toxins; i read it in a book by Dr L in Melbourne who claims that forcing fluid from the lymophatic system back i into the venous syste boosts blood volume.
This goes back to the ideas that we have low blood volume for some reason or stretchy veins or some cardiac insufficiency and so any thing that boost s our blood volume back to normal helps us (other ideas heave been irregulare red blood cell shape or size obstructing sirculation at het lymahatic / cellular level)
For the same reason lying horizontally helps us as the blood can flow to the brain and heart easily which it cannot do in an upright position.
these are Dr Cheneys ideas i think and DR DPL in melbourne.
the compression clothing i have read on the post oi websites and i find it incredibly useful - but full body ; legs only does nothing. Also it does not need to be very tight whic is in line with lympatic massage priciples - lymphatic massage is very light and shallow to be effective - same a s body brushing which i used to do and found stimulating.
This remineds me that I read that
rudolf nurevey used to lash himself with the eds of birch stems add leaves before a performance - and this has a very ivigorating effect esp if done after a shower - when i could take them; on wet skin seems to help anyway.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Allyson, on blood flow: this is similar to one theory of using saunas to treat ME and CFS - it forces blood to flow around and change distribution, that might induce changes that increase blood volume over time. Bye, Alex
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Hi thanks Alex but i totally disagree with using saunas - the trouble is they heat you up and so cause peripheral vasodilation but there is none of the usefule pressure from the water to force the lymphatic drainage back into the venous system.
It is the reason why heat affects people with ME so badly.
In fact even after a warm spa I finish with a dip in the cold pool to cool me down so i don't feel lightheaded afterwards.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
This is interesting,
Dainty has some excellent relief with her treatment of "structural problems",
Any update on nagalase levels??

GCAF there i a type of osteopathy - dedicated to treating ME and that claims ME is caused by structural problems --it -is the Perrin technique http://www.theperrinclinic.com/.
I read the book and thought it may be true for some people but was not complex enough to cover everyone - and obviously it is not curing everyone.
But Perrin claims success in treating some people
 

Wayne

Senior Member
Messages
4,363
Location
Ashland, Oregon
I did a lot of detox work with a practitioner who used Dr. Cowden's laser energetic detox--mostly environmental toxins and heavy metals. My practitioner also worked herbally with some infections. After this I was able to tolerate the methylation supplements again. So it seems that toxins and heavy metals can be somewhat of a barrier to full success with the Simplified Protocol

Hi Sushi,

Thanks for your comprehensive post. I'm quite intrigued by the LED laser energetic detoxification you mentioned. I did a little searching this morning and came across this website (below), which I feel gives a pretty good succinct description of what it's about. I was wondering if you're aware of any similar websites that you could share. I was also wondering what these kinds of treatments cost, and whether it's possible and/or economical to try to do this at home. I highly suspect it isn't. :(

Bioenergetic Testing and Laser Detoxification

It seems the farther I move along in trying to solve my own unique ME/CFS health issues, the more I realize that energetic medicine of all sorts will likely end up playing a much more significant role than I had anticipated. As important as physical therapies are, It seems if I focus too much on them, it distracts me from some energetic therapies that could get me through certain health obstacles much quicker.

Hope you're having a good day. :)

Wayne
 

Sushi

Moderation Resource Albuquerque
Messages
19,938
Location
Albuquerque
Hi Sushi,

Thanks for your comprehensive post. I'm quite intrigued by the LED laser energetic detoxification you mentioned. I did a little searching this morning and came across this website (below), which I feel gives a pretty good succinct description of what it's about. I was wondering if you're aware of any similar websites that you could share. I was also wondering what these kinds of treatments cost, and whether it's possible and/or economical to try to do this at home. I highly suspect it isn't. :(

Bioenergetic Testing and Laser Detoxification

It seems the farther I move along in trying to solve my own unique ME/CFS health issues, the more I realize that energetic medicine of all sorts will likely end up playing a much more significant role than I had anticipated. As important as physical therapies are, It seems if I focus too much on them, it distracts me from some energetic therapies that could get me through certain health obstacles much quicker.

Hope you're having a good day. :)

Wayne

Hi Wayne,

The site you quoted is Pine Tree Clinic in Arizona--Dr. Zieve. I looked into treatment there but it was pretty expensive. Then I stumbled across another person who practices laser energetic detox and who works closely with Dr. Cowden: http://www.drdougphillips.com/aboutus.html

He came to my city for one week per month and the costs were much less. There are probably others who do this kind of work, but many of them keep quiet about it as it opens them to harassment--this is probably why Dr. Phillips does not mention this on his website. He is a very nice person and has been willing to talk with patients on the phone and let them know if there is a practitioner in their area.

Some things you can do at home. Dr. Phillips helped me get some basic equipment to work with. If you feel like it, contact me on chat and I can tell you more.

Best wishes,
Sushi
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi thanks Alex but i totally disagree with using saunas - the trouble is they heat you up and so cause peripheral vasodilation but there is none of the usefule pressure from the water to force the lymphatic drainage back into the venous system.
It is the reason why heat affects people with ME so badly.
In fact even after a warm spa I finish with a dip in the cold pool to cool me down so i don't feel lightheaded afterwards.

Hi Allyson, that is correct on vasodilation but misses the point. First, never stay too long in a sauna - five to ten minutes maximum. Long saunas are not good for us. Second, never jump in a pool right after - you can go into shock and drown. The point of using saunas is to have repeated bursts of hot/cold to kickstart the autonomic monitoring of blood flow. Its brain training, and not about toxins or heat in this theory I was mentioning. Bye, Alex
 

RivkaRivka

Senior Member
Messages
369
It breaks my heart to now look at this thread that Rich started, and, in fact, all the threads around Phx Rising, all with Rich's wonderful thinking all over them and throughout them. I miss him so much.

I love you, Rich! I hope you are doing okay up there! We miss you terribly.

Rich's wife asked me to post this here. I'm so grateful to whoever organized this effort and contributed to it. Thank you! -- Rivka
_______

Today I returned home to find an incredibly beautiful lemon tree on our front porch, and it was planted in a large, quite beautiful pot.

The accompanying card indicated that it was from all of you at Pheonix Rising. I'd like to thank you, and all of the others at Pheonix Rising for the tree and for all of your kind words. They have meant so much in this nearly unbearable time.

Warmest possible regards,

Diana Van Konynenburg
 

Wifi123

Senior Member
Messages
159
I'm new to the site, and have suffered all these things, and went through all the theories on what causes ME/CFS, FMS, IBS, BMS, and MS, and after four decades I found out that the increase of such sufferers is due to the excess usage of cell phones, DECT phones, Wi Fi, Wi Max, and wireless computer set-ups (modems, routers and mouse). Once all this communications set-ups are returned to cable all the symtoms begin to disappear, but at the same time you need to shield yourself from your next-door neighbours radiation. Most sufferers who believe they were ME/CFS discovered that they were electro sensitive known as Electro Hyper Sensitivity Syndrome. But, there is now another problem is the smart metres that the energey companies are connecting to most power boxes in all the homes, and they are now going to flood the market with smart appliances that have a built in Wi Fi transmitter to work to the smart metre. Oh well, may ME/CFS now reigh forever, and is a good replacement for asbestos and passive cigarette smoking.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Wifi123 I can't say what might or might not be causing anybody else's illness, but I don't see how wifi could be causing mine. I have none of the devices you mention. My closest neighbor is 1/4 mile away. I don't have a microwave, cell phone, smartmeter, cable TV, satellite TV, nothing. Except for my laptop, everything here is 1980s technology, or earlier. The only device I have that transmits anything is a CB radio, which has been collecting dust for years. I only leave the house 2 or 3 times a month, so I'm not getting other people's EMFs.

I suppose one could say I'm absorbing EMFs from TV and radio stations, but the closest TV transmitter is at least 25 miles, and probably rather low power. The closest cell tower is at least 2 miles, and I'm pretty sure they are low power, too.

And yet I continue to get sicker and sicker.
 
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