CFS progression, Dr. Bell,ubiquinol

Tlatoani

Member
No, my crash was in 2009, so some time ago now. Had massive pain, could not sleep, and was in very rough shape! Had my pain knocked down a good amount by having Lidocaine infused into my blood stream, could gett some sleep then, and slowly got better!

GG
Hey, so how did you brain fog (which is the symptom I have the most too) evolve over the years. Sorry for all the questions. Did it stay the same.
also ubiquinol seems to help me a lot, did this help you too?
also did you have any issues with bones?
 

GG

Well-Known Member
Hey, so how did you brain fog (which is the symptom I have the most too) evolve over the years. Sorry for all the questions. Did it stay the same.

also ubiquinol seems to help me a lot, did this help you too?

also did you have any issues with bones?

No, my brain fog is better (but still have it, worse on day afters I had done lots), have done detox though, my Drs says I have toxins determined by the VCS test.

I have only recently started taking some Ubiquinol, been taking CoQ10 for years though!

Not sure what you mean by issues with bones? Osteoporosis? I have Fibromyalgia as well, so my body aches quite often :(

GG
 

Tlatoani

Member
No, my brain fog is better (but still have it, worse on day afters I had done lots), have done detox though, my Drs says I have toxins determined by the VCS test.

I have only recently started taking some Ubiquinol, been taking CoQ10 for years though!

Not sure what you mean by issues with bones? Osteoporosis? I have Fibromyalgia as well, so my body aches quite often :(

GG
And all this stared after mono ? Did the brainfog improve gradually or in swings.?

I asked because I am afriad that the constant oxidaditve stress could harm the bones. I am very afraid of having weak bones for several reasons.
 

GG

Well-Known Member
And all this stared after mono ? Did the brainfog improve gradually or in swings.?

I asked because I am afriad that the constant oxidaditve stress could harm the bones. I am very afraid of having weak bones for several reasons.

I think the brainfor improved gradually, as I removed toxins from my body, no Big swings for me.

GG
 

Tlatoani

Member
I think the brainfor improved gradually, as I removed toxins from my body, no Big swings for me.

GG
SO the brainfog was due to toxins and not post viral CFS ?

What toxins and how did you remov them?
thanks for all the answers
 

GG

Well-Known Member
SO the brainfog was due to toxins and not post viral CFS ?

What toxins and how did you remov them?
thanks for all the answers

Some of the brainfog is likely due to toxins, that is what a few Drs believe. Had been found to have high mercury, lead and the VCS test is for mold toxins.

My Dr used cholestryamine (CSM) and chlorella for me.

GG
 

Tlatoani

Member
Some of the brainfog is likely due to toxins, that is what a few Drs believe. Had been found to have high mercury, lead and the VCS test is for mold toxins.

My Dr used cholestryamine (CSM) and chlorella for me.

GG
So do you actually have true post viral (mono) CFS? Or maybe just toxins?

Anyone else has a comment on the progression of CFS as elaborated by Dr. Bell.
 

GG

Well-Known Member
Yes, my illness started with Mono as well, at age 33.

Not sure what caused my crash, work and doing to much? I get better sleep now, don't wake up feeling like I had not rested at all, feel better when waking up, if not, I stay in bed for a while and usually fall back asleep and wake up feeling better, but Not great!

GG

As I posted before, my illness started with Mono, a Virus. I was diagnosed with CFS in 2005.

GG
 

Tlatoani

Member

What do you mean by 45 degree, so in terms of upright activity, lets say at year 1 you could do 10 hours of upright, how many could you do at 10,20, and now 30 years?
did you CFS start with EBV? As different triggers might cause different progressions
 

Zapped

Well-Known Member
Hello all,

a little bit about me:

I am 23, contracted moderate to weak, CFS 4 years ago right after my mono - in which I didnt rest enough. The CFS is constant but did seem to get slightly better and with 200mg of highly absorbable ubiquinol is managable. I can lead an almost normal life. No OI or pain, luckily.

So my question is the following:

I read about the progression of CFS and that it gets better in around the period of 10-15 years after which it gets worse (according to Dr. Bell) he hypothesised that this is due to continous oxidative stress - now as I take daily 200mg of vesisorb ubiquinol which actas as an antioxidant would that decrease the Oxidative stress and in the long run thus change the progression Dr bell saw?

Also regarding progression, is it seen that patients that never had any OI (after 4 years) lets say after 6 or 9 years get it? really scared about that.

Also does the symptom effect of ubiquinol wear off? because I m feeling, compared to the last 3 years, relativley well and would ove to keep feeling this way!

thanks for answers

I have had this illness since Dr. Bell first came on the scene, and have his books, etc... .

FWIW, my CFS has been a 45 degree progression downwards over 30+ years, from being able to travel to now 90% homebound/sofa. Along the way I experienced all the symptom dynamics you outline, and more as time passed and crashes became more manifest. After each crash I never returned to pre-crash optimums... .

This leads me to offer an opinion - don't crash; nor engage in activity which others relate causes crashes! At your stage PREVENTION of worsening is key.

As far as what is effective or palliative in dealing with CFS, there are a plethora of protocols out there, mostly related to the school of theory one follows. Therefore, I suggest you formulate your own belief about the etiology of CFS, be it viral, autoimmune, mitochondrial, etc induced. Then follow that guru's concepts of dealing with it and what you might expect over time.

Everyone has a theory; everyone can't be right. So why take a shotgun approach and waste time, energy and money following well intentioned but wrong protocols, where some actually feed the malaise?

You might give some thought to autoimmunity dysfunction caused by that nefarious concept 'stress' and it's effect at the cellular level. I'll leave it you to do the research, which may be part of the treatment process.

Ciao,
 
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Zapped

Well-Known Member
What do you mean by 45 degree, so in terms of upright activity, lets say at year 1 you could do 10 hours of upright, how many could you do at 10,20, and now 30 years? did you CFS start with EBV? As different triggers might cause different progressions

The 45 degrees is the curve down on the y-axis, with time being the x-axis, i.e. steady decline.

In answer to your years up time, it seems up 8 hours at 10 years, 6 at 20, now 3-4 hours.
Now average 12 hours in bed (8-10 sleep; 2-4 awake)' and the rest piddling, reading on sofa. Some away time each week, maybe 3-4 hours out to eat. And I'm in relatively good shape.

I was in super shape when hit by a 'bug' that started the whole decline, having to drop each exercise sequentially by year 3, i.e. jogging, cycling, lifting, swimming. (No booze, no smoke, having had to give them up earlier after college.). (BTW, I was super stressed running my own company at initial onset - after 2 week's vacation in Lake Tahoe+, fwiw!)

I hope you'll have success changing your lifestyle to sedentary now versus getting on the grind. The grind will win every time ;), and you will otherwise feel like the very devil is on your back!

You could try one of Erik Johnson's books*, a forerunner in this whole current mess, about my age. Try Amazon for some paperbacks or download.

Good luck.

Book: "Back from the Edge", with Lisa Petrison, PhD, Kindle/Amazon
 
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Hello all,

a little bit about me:

I am 23, contracted moderate to weak, CFS 4 years ago right after my mono - in which I didnt rest enough. The CFS is constant but did seem to get slightly better and with 200mg of highly absorbable ubiquinol is managable. I can lead an almost normal life. No OI or pain, luckily.

So my question is the following:

I read about the progression of CFS and that it gets better in around the period of 10-15 years after which it gets worse (according to Dr. Bell) he hypothesised that this is due to continous oxidative stress - now as I take daily 200mg of vesisorb ubiquinol which actas as an antioxidant would that decrease the Oxidative stress and in the long run thus change the progression Dr bell saw?

Also regarding progression, is it seen that patients that never had any OI (after 4 years) lets say after 6 or 9 years get it? really scared about that.

Also does the symptom effect of ubiquinol wear off? because I m feeling, compared to the last 3 years, relativley well and would ove to keep feeling this way!

thanks for answers
In my vision me/cfs is an infectious disease caraterize by low immunity low Nk cell activity.
the course and severity of the disease will be determine by expousure and coinfections.
the more co infections you have that can cause pain or other sympyomes, ofcourse that include eating habits gut environment.
many people have mild cfs they didn't even knew they had the get bite by a tick them develope lyme...
the cort problem immune system disfuntional this allow almost every infection to affect you and possibly cause cfs
 
The 45 degrees is the curve down on the y-axis, with time being the x-axis, i.e. steady decline.

In answer to your years up time, it seems up 8 hours at 10 years, 6 at 20, now 3-4 hours.
Now average 12 hours in bed (8-10 sleep; 2-4 awake)' and the rest piddling, reading on sofa. Some away time each week, maybe 3-4 hours out to eat. And I'm in relatively good shape.

I was in super shape when hit by a 'bug' that started the whole decline, having to drop each exercise sequentially by year 3, i.e. jogging, cycling, lifting, swimming. (No booze, no smoke, having had to give them up earlier after college.). (BTW, I was super stressed running my own company at initial onset - after 2 week's vacation in Lake Tahoe+, fwiw!)

I hope you'll have success changing your lifestyle to sedentary now versus getting on the grind. The grind will win every time ;), and you will otherwise feel like the very devil is on your back!

You could try one of Erik Johnson's books*, a forerunner in this whole current mess, about my age. Try Amazon for some paperbacks or download.

Good luck.

Book: "Back from the Edge", with Lisa Petrison, PhD, Kindle/Amazon
out of curiosity did you do anything diferent at lake tahoe vacation??
i mean we know many stories of lake tahoe onsets..
did you check for other viruses ? intracelullar bacteria? mycoplasmas subtypes etc..??
new girlfriend??
i trill to understand if the out brakes incline village, lake tahoe etc are the result of a co infection triggering the disease becouse already existed the immunodeficiency from a prior pathogen wich seem more likely, if it was actually the place were the initial pathogen that started causing immune deficiency this this last theorie doesn't make much sense.
people that get hiv typically can have a flue like symtoms in the window period but symptoms will resolve the be relatively normal for years, ofcourse co infections play a big roll
 

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