CFS progression, Dr. Bell,ubiquinol

[Tlatoani]

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

 

[madie]

I've been sick for over 30 years; I have the version of CFS that's mild onset and very very gradual, continuous, worsening of symptoms. I've never had a serious crash, or a remission.

I also have never had OI.

 

[Tlatoani]

I've been sick for over 30 years; I have the version of CFS that's mild onset and very very gradual, continuous, worsening of symptoms. I've never had a serious crash, or a remission.

I also have never had OI.

Sorry for all the questions
1. At what age did you contract CFS and was it a viral onset?
2. Also how pronounced was this worsening, how much activity can you do now compared to 30 years ago?
3.Could this maybe also be explained by the normal ageing process? I mean 30 years is quite a bit. I have not worsened in the last 4 years, if anything slightly but only slightly gotten better.
4. How did you feel after 15 years compared to after 5 years, 0 years? In terms of how many hours of activity ? Are you still able to work? What about mental performance.
5. Did you ever take ubiquinol or other supplements?

 

[Tlatoani]

Also as a note, didnt Dr. Bell find out that generally from onset to 15 years people tendet to either stay constant/or improve and after that time, so from 15-25 years got gradually worse?

 

[GG]

Also as a note, didnt Dr. Bell find out that generally from onset to 15 years people tendet to either stay constant/or improve and after that time, so from 15-25 years got gradually worse?

Something like that, here is a resource:

Lecture by Dr. David Bell, April 16, 2011 via MA CFIDS


https://www.masscfids.org/more-resources-for-me-cfs/309-lecture-by-dr-david-bell-april-16-2011

GG

 

[Tlatoani]

Something like that, here is a resource:

Lecture by Dr. David Bell, April 16, 2011 via MA CFIDS


https://www.masscfids.org/more-resources-for-me-cfs/309-lecture-by-dr-david-bell-april-16-2011

GG

yeah so if I hear correctly, the first 15 years things seem to get better right, and then slighly go downhill?

 

[Tlatoani]

Can someone corrobarate this? As I am just 23, I d like to know, according to Dr. Bell, when it will start to go downhill with me? Like how many years of this state do I have left?

 

[JennyJenny]

Can someone corrobarate this? As I am just 23, I d like to know, according to Dr. Bell, when it will start to go downhill with me? Like how many years of this state do I have left?

I "functioned" for about 20 years after getting sick with mono at 18. Compromised but able to work, somewhat socialize and so on. But I was never well. At 38 I imploded, tried to work part time and imploded for good. Imploded meaning crashes. Looking back on my life I was going through very small relapse and remitting but could always make the recovery but just a teensy bit worse after these. I would do things like work part time for a while or pull back on socializing and not even realizing what was wrong with me but that I just was not well enough to keep pushing through.

I had 110/70 BP and could not stand in one place for long periods of time although could still make it through long lines at theme parks and vacation at Disney World although I could not keep going like everyone else. I was a modest case and probably fit SEID and not CCC or ICC, yet. (I had cognitive issues more than OI and you have to have either/or for SEID.) However, about 15 years into this 20 year of "functioning" my doctor put me through a tilt table test and I fainted. Now, I meet CCC and as far as I can see meet ICC. This disease will progress especially if you begin to have other diseases and illnesses that will impact ME/CFS. Diabetes, Hypothyroid, RA, etc. will all impact the disease and make it worse.

 

[Tlatoani]

So ho

I "functioned" for about 20 years after getting sick with mono at 18. Compromised but able to work, somewhat socialize and so on. But I was never well. At 38 I imploded, tried to work part time and imploded for good. Imploded meaning crashes. Looking back on my life I was going through very small relapse and remitting but could always make the recovery but just a teensy bit worse after these. I would do things like work part time for a while or pull back on socializing and not even realizing what was wrong with me but that I just was not well enough to keep pushing through.

I had 110/70 BP and could not stand in one place for long periods of time although could still make it through long lines at theme parks and vacation at Disney World although I could not keep going like everyone else. I was a modest case and probably fit SEID and not CCC or ICC, yet. (I had cognitive issues more than OI and you have to have either/or for SEID.) However, about 15 years into this 20 year of "functioning" my doctor put me through a tilt table test and I fainted. Now, I meet CCC and as far as I can see meet ICC. This disease will progress especially if you begin to have other diseases and illnesses that will impact ME/CFS. Diabetes, Hypothyroid, RA, etc. will all impact the disease and make it worse.

How did you feel at the 15 year mark, so when you were 33? Was there a big difference to how you felt with 20?
Also did you have OI in the beginning and did it develip later on? I have absolutley no issue with OI, luckily would hope taht this stays the same.

 

[GG]

Can someone corrobarate this? As I am just 23, I d like to know, according to Dr. Bell, when it will start to go downhill with me? Like how many years of this state do I have left?

I think it is individual for all of us, try to take care of yourself, listen to your body. Lots of research going on now on the underlying mechanisms. I wouldn't worry about 15 years down the road. Do you have anxiety issues?

GG

 

[Tlatoani]

I think it is individual for all of us, try to take care of yourself, listen to your body. Lots of research going on now on the underlying mechanisms. I wouldn't worry about 15 years down the road. Do you have anxiety issues?

GG

I agree but Dr. Bell did observe a trend, I mean you can surely observe a trend everywhere. By not worrying are you implyinf that if I continue as I did the alst 4 years I could expect that nothing will much change in the next 10 years? Lets hope

 

[JennyJenny]

So ho


How did you feel at the 15 year mark, so when you were 33? Was there a big difference to how you felt with 20?
Also did you have OI in the beginning and did it develip later on? I have absolutley no issue with OI, luckily would hope taht this stays the same.

I was experiencing more and more sinus infections, colds, severe fatigue, cognitive issues and missing work. Although "something" was always wrong, it was all getting worse but I was not getting any answers. My Primary was seeing me a lot and I think he suspected CFS but did not diagnose me although looking back on the research of that time they were putting CFS patients through Tilt Table tests and they had OI or POTS. He was no doubt keeping up with the research and put me through the test as I did have low BP.

 

[GG]

I agree but Dr. Bell did observe a trend, I mean you can surely observe a trend everywhere. By not worrying are you implyinf that if I continue as I did the alst 4 years I could expect that nothing will much change in the next 10 years? Lets hope

Yes, I wouldn't worry about it to much, easy for me to say. I have been ill for 14 years now, had a tilt table test down a few years ago. Was not found positive for that.

I have exercised throughout my illness, except for 2009/10 when I crashed, i took a year to recuperate.

You don't indicate what you have been doing to damage your body in the last 4 years. Why do you say you did Not rest enough after getting Mono?

GG

 

[Tlatoani]

Yes, I wouldn't worry about it to much, easy for me to say. I have been ill for 14 years now, had a tilt table test down a few years ago. Was not found positive for that.

I have exercised throughout my illness, except for 2009/10 when I crashed, i took a year to recuperate.

You don't indicate what you have been doing to damage your body in the last 4 years. Why do you say you did Not rest enough after getting Mono?

GG

OK thats nice to hear. Did yours start as a viral CFS? How bad was the crash, what caused it?

 

[GG]

OK thats nice to hear. Did yours start as a viral CFS? How bad was the crash, what caused it?

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

 

[Tlatoani]

Wh

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

What is the intensity of your CFS ? How did this change throughout the years?

 

[GG]

Wh

What is the intensity of your CFS ? How did this change throughout the years?

Intensity? Well used to have pretty bad brain fog, still have issues with that. Its hard to tell how bad you are impacted, until you feel better, we just trudge on, if we can, because that is how society/genetics has programmed us.

It changes, I used to get night sweats, that seemed to stop around the 7 year mark.

GG

 

[Tlatoani]

Intensity? Well used to have pretty bad brain fog, still have issues with that. Its hard to tell how bad you are impacted, until you feel better, we just trudge on, if we can, because that is how society/genetics has programmed us.

It changes, I used to get night sweats, that seemed to stop around the 7 year mark.

GG

Thanks for that answer. Seems like we are similar - when u had the crash did you just have worse brain fog? Were you able to work with this brain fog ?

 

[GG]

Thanks for that answer. Seems like we are similar - when u had the crash did you just have worse brain fog? Were you able to work with this brain fog ?

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

 

[Tlatoani]

anyone else knows something about the usual progression of CFS of teens that get it after Mono? Mine is mild yet significant, and would love to know how to maintain this for at least 15 -20 years.