I speculated how CFS seems like it might be vascular in nature awhile back. I was looking through some of Mario's postings, it was either him or someone else that referenced a study pointing to CFS possibly beingacerebral vascular disease. Here is a similar study I found real quick, it also links autonomic dysfunction andcognitive impairment.

Cerebral vascular control is associated with skeletal muscle pH in chronic fatigue syndrome patients both at rest and during dynamic stimulation
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3777833/
Cerebral blood flow (CBF) is maintained despite changing systemic blood pressure through cerebral vascular control, with such tight regulation believed to be under local tissue control. Chronic fatigue syndrome (CFS) associates with a wide range of symptoms, including orthostatic intolerance, skeletal muscle pH abnormalities and cognitive impairment. CFS patients are known to have reduced CBF and orthostatic intolerance associates with abnormal vascular regulation, while skeletal muscle pH abnormalities associate with autonomic dysfunction. These findings point to autonomic dysfunction as the central feature of CFS, and cerebral vascular control being influenced by factors outside of the brain

This to me is kind of a big deal and pretty fucked up. Im not sure if this could lead to vascular dementia down the line. I already have signs from a mri its possibly taking a toll on the brain. Thats why we need to catch this shit.

1 hour ago, guitarman01 said:

I speculated how CFS seems like it might be vascular in nature awhile back. I was looking through some of Mario's postings, it was either him or someone else that referenced a study pointing to CFS possibly beingacerebral vascular disease. Here is a similar study I found real quick, it also links autonomic dysfunction andcognitive impairment.

Cerebral vascular control is associated with skeletal muscle pH in chronic fatigue syndrome patients both at rest and during dynamic stimulation
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3777833/
Cerebral blood flow (CBF) is maintained despite changing systemic blood pressure through cerebral vascular control, with such tight regulation believed to be under local tissue control. Chronic fatigue syndrome (CFS) associates with a wide range of symptoms, including orthostatic intolerance, skeletal muscle pH abnormalities and cognitive impairment. CFS patients are known to have reduced CBF and orthostatic intolerance associates with abnormal vascular regulation, while skeletal muscle pH abnormalities associate with autonomic dysfunction. These findings point to autonomic dysfunction as the central feature of CFS, and cerebral vascular control being influenced by factors outside of the brain

This to me is kind of a big deal and pretty fucked up. Im not sure if this could lead to vascular dementia down the line. I already have signs from a mri its possibly taking a toll on the brain. Thats why we need to catch this shit.

This is not just brain related yeah, I'm going to put my hand up and say I have CFS, I'm fucking exhausted, yet can't sleep properly.

The biggest thing though that I'm dealing with lately are these varicose veins that I know are from Accutane and the bullshit fatigue I've had for 20 years.

This isn't a feeling or something in my head, they are there in plain daylight for any doctor to see!! Anyway, there's talk of some surgery to remove them, but I don't really give a shit how they look, I'm only interested in removing them if that might improve my health, more importantly, it's better blood flow and combating the fatigue that I need as usual to get on top of.

In regards to CFS, what are the most popular drugs used to treat it nowadays??

No mention of supplements please, in my case they just don't work, I've literally given them about 15 years or so to prove otherwise but no such luck!!!

Best drugs with least side effects......I'm all ears!!!?

4 hours ago, MonsterDiesel said:

I couldnt convince my Doc to run biotinidase. Wish I could test it on my own

Yeah it was in range so he told me.ive done lots or reasurch on biotindase and I was certain this test was going to come back as low.i thought biotindase was causing the hair loss as well as other things

@TrueJusticeHave you had any autoimmune tests done? I don't remember you posting anything? Like ANA?

Ana test are useless

mine have been positive negative and positive
if it's low they don't do shit
even with all symptoms

we all took chemo killed good cells

8 hours ago, Colinboko said:

@TrueJusticeHave you had any autoimmune tests done? I don't remember you posting anything? Like ANA?

No I haven't- I'll consider it though.

Right now I want to see a Neurologist but I don't know what tests to ask for??

I can explain my symptoms easily enough:

# light sensitivity
# head pressure ( frontal lobes )
# extreme tiredness
# floaters in eyes

Based on what's been done by others and the length of time ( 20 years post tane ) I'm going to say No to a spinal tap, No to an MRI unless someone can convince me otherwise!?

What would be the test one should ask for to see blood flow in frontal lobes though?? What are the tests called that showed brain damage/interference in Accutane patients, the ones that have been included in reports etc - does anyone know??

5 hours ago, Nemesisbrady said:

Ana test are useless

mine have been positive negative and positive
if it's low they don't do shit
even with all symptoms

we all took chemo killed good cells

Definitely not useless. Many post accutane people testing positive on ANA tests. Why wouldn't you ask to dive further when you tested postive? Clearly the problem is your doctors

The neuro is just gonna want to do 2 tests. EEG and MRI. If they don't see anything conclusive they will just refer to a Psychiatrist. They don't work well with symptomatic only patients. I've told a few of them about my 1.night blindness 2.tinnitus 3.blue field entoptic phenomenon 4.Persistent after images 5.raynauds phenomenon (fingertips blue in winter) 6. insomnia 7. depression, and how ALL of these symptoms point towards a "hypermetabolism" of the brain according to medical sources I've read and they just stare back blankly.

When I mentioned how I believe the tinnitus and anisicoria of my right pupil are remnants of a previous ischemic attack and if there was any way to check the fluid pressure, she said spinal tap, but really it could also affect someone with normal pressure negatively, so its risky as well. So, I doubt anyone will even recommend to do a spinal tap unless they are just a $ oriented office.

It's also so hard to get any bloodwork done outside of a comprehensive panel. Should your regular bloodwork come back normal, convincing doctors to get additional tests is like pulling teeth, maybe its an Insurance thing where they are being directed to save insurance co. money.

These are just a few things I've learned the hard way recently.

2 hours ago, Colinboko said:

7 hours ago, Nemesisbrady said:

Ana test are useless

mine have been positive negative and positive 
if it's low they don't do shit
even with all symptoms 

we all took chemo killed good cells

 

Definitely not useless. Many post accutane people testing positive on ANA tests. Why wouldn't you ask to dive further when you tested postive? Clearly the problem is your doctors

I've asked for a decade now seen so many docs
yea positive but the rheum did it again and was negative not sure how
also not sure how my thyroid as dying and now it's normal
i agree
but my case it's useless
u can have all sjorgens and lupus symptoms and positive Ana and they say no it's negative
still not sure myself 

2 hours ago, macleod said:

The neuro is just gonna want to do 2 tests. EEG and MRI. If they don't see anything conclusive they will just refer to a Psychiatrist. They don't work well with symptomatic only patients. I've told a few of them about my 1.night blindness 2.tinnitus 3.blue field entoptic phenomenon 4.Persistent after images 5.raynauds phenomenon (fingertips blue in winter) 6. insomnia 7. depression, and how ALL of these symptoms point towards a "hypermetabolism" of the brain according to medical sources I've read and they just stare back blankly.

When I mentioned how I believe the tinnitus and anisicoria of my right pupil are remnants of a previous ischemic attack and if there was any way to check the fluid pressure, she said spinal tap, but really it could also affect someone with normal pressure negatively, so its risky as well. So, I doubt anyone will even recommend to do a spinal tap unless they are just a $ oriented office.

It's also so hard to get any bloodwork done outside of a comprehensive panel. Should your regular bloodwork come back normal, convincing doctors to get additional tests is like pulling teeth, maybe its an Insurance thing where they are being directed to save insurance co. money.

These are just a few things I've learned the hard way recently.

Shit  have few similar issues
my ringinf in ears went away
still fluid crackling in eight 
they say they see no fluid
not sure why I hear it when laying down it's worse
i Also have insomnia and cold feet and hands
although that whole hand turns pale with like blue tone 
not the finger tips
its from wrist to fingers and fingers get really cold
notice masturbation and 59-65 degrees will do it
stress anxiety don't help 

wonder why why we all have similar and issues that aren't the same at all

So they.  Checked all that

my urine iodine is almost 2,000 was 138 4 months ago 

my igg4 elevated
ana was speckled last month now negative
rheum said she don't consider 1 1:60 positive 
so not sure what to do

any other tests I need done?

also vitamin d 4,000 iu and it's still only 37

Damn, you got some nice rare tests done. I might have to go see a Rheumatologist.

8 hours ago, macleod said:

Damn, you got some nice rare tests done. I might have to go see a Rheumatologist.

Yea she. Looked at a lot
but she won't consider my speckled Ana as positive even with my dry eyes nose skin flushing cold hands feet insomnia issues and excessive urination
(10-12x day 24 hours with three bottles of water tops 16.9 oz)
ans speckled positive ana
high igg4
elevated estrogen testosterone and high urine iodine
history of thyroiditis
tsh was almost 6
now it's a low 1

alao have hives and new symptoms
fatigue rash like tiny red bumps on my hands and had a hive on my arm looked like mostiquto bite
my face had a constant twitch in it
the twitch stopped once I stopped the singulair

Forgot to mention I do have fluid like sound in right ear
and clicking squeaking noise when I press my right eye
not normal with the dryness inside nasal passages and eye balls same time
it has to be connected
constant fatigue is not helping me
my ear did ring a lot when loud noises
or if my mom was on the phone yelling my ear would crsckle
and it keeps having a swooshing sound of water when I make my ears vibrate on my own (hard to explain)
I don't know if it's tinitus or if it's fluid
though they never see fluid
allergist didn't ent did years ago drained it and no relief

1 hour ago, Nemesisbrady said:

Forgot to mention I do have fluid like sound in right ear
and clicking squeaking noise when I press my right eye
not normal with the dryness inside nasal passages and eye balls same time
it has to be connected
constant fatigue is not helping me
my ear did ring a lot when loud noises
or if my mom was on the phone yelling my ear would crsckle
and it keeps having a swooshing sound of water when I make my ears vibrate on my own (hard to explain)
I don't know if it's tinitus or if it's fluid
though they never see fluid
allergist didn't ent did years ago drained it and no relief

I have severe clicking in my eyes as well! This is seen a lot in sjogrens patients

I'm almost convinced I have sjorgens and lupus more so sjorgens
but it's weird

my mouth is only dry when waking up
maybe when I talk anxiety it gets it
but through the day it's fine
I can produce saliva and my lip biopsy was negative in 2011

but the Ana speckled and the schiremrs eye test showed no tears
dry skin
dry eyes nose really bad when waking up
dead crusty skin inside nose and mucus crusted blepharitis like eyes

Should we start experimenting ?
ive been adding Himalayan salt to 1 meal a day
ive avoided salt for years and not sure if the constant urinating and drinking all that way for years dehydrated me or caused imbalance ?
seeing if it helps with dry eyes
problem is I already have huge eye bags and don't want to make them worse

i wrote down all my symptoms have about 34

with he dryness rashes flushing sleep issues and cold feet hands being the most annoying

10 minutes ago, Nemesisbrady said:

I'm almost convinced I have sjorgens and lupus more so sjorgens
but it's weird

my mouth is only dry when waking up
maybe when I talk anxiety it gets it
but through the day it's fine
I can produce saliva and my lip biopsy was negative in 2011

but the Ana speckled and the schiremrs eye test showed no tears
dry skin
dry eyes nose really bad when waking up
dead crusty skin inside nose and mucus crusted blepharitis like eyes

Should we start experimenting ?
ive been adding Himalayan salt to 1 meal a day
ive avoided salt for years and not sure if the constant urinating and drinking all that way for years dehydrated me or caused imbalance ?
seeing if it helps with dry eyes
problem is I already have huge eye bags and don't want to make them worse

i wrote down all my symptoms have about 34

with he dryness rashes flushing sleep issues and cold feet hands being the most annoying

I would start asking to experiment with some medications! Never know if you don't try. Supplements are absolutely useless at this point. I've also heard of many sjogrens patients finding extreme relief from steroids as well. Would be worth trying for you

I have fear of meds now since acxutane
i legit won't take beta blockers or anxiety meds depression

i was thinking all these meds dried me out
has to be accutane
im on .5 xanax for sleep
been on benzodiazepines for 10 years so I didn't know if that was drying me out

i wish I could talk to someone who got rid of flushing redness and dry eye sleep issues

sucks google is driving me more insane
I've tried so much

she offered plaquenil but I heard that's for fatigue and pain
my only pain is mental and dryness
back pain gone thank god

I've been on
lunesta
ambien
trazadone
seroquil
antipsychotics
celexa
wellbutrin
buspar
xanax
kapins
ativan
paxil
zoloft
prozac

all they do is kill sex drive and maybe make u less depressed
but still have symptoms

predinsone he he gave me before that can cause issues tho

That's a comprehensive list you have there, I've been on a few of those over the years myself and yes they help take the edge offbut they kill your sex drive too.

One of the most important things to help me have a good day is a good nights sleep, you deprive anyone of sleep and they'll want to burst into tears and will feel major agitation!!

I struggle every night though with "quality" sleep, upping the exercise lately has really helped, catch 22 though cause if you feel tired you don't feel like exercising, you gotta do it anyway I believe.

I'm wondering if investing in a sleep machine might help?
ordinarily they are for sleep apnea patients but perhaps part of our rough sleeping is oxygen deprivation? I know my lungs aren't the same after tane, I get out of breath very easily doing mild things like walking up stairs etc,
stands to reason that I may be breathing poorly in my sleep even though my body is relaxed....I dunno, maybe a machine could help us.

46 minutes ago, TrueJustice said:

That's a comprehensive list you have there, I've been on a few of those over the years myself and yes they help take the edge offbut they kill your sex drive too.

One of the most important things to help me have a good day is a good nights sleep, you deprive anyone of sleep and they'll want to burst into tears and will feel major agitation!!

I struggle every night though with "quality" sleep, upping the exercise lately has really helped, catch 22 though cause if you feel tired you don't feel like exercising, you gotta do it anyway I believe.

I'm wondering if investing in a sleep machine might help?
ordinarily they are for sleep apnea patients but perhaps part of our rough sleeping is oxygen deprivation? I know my lungs aren't the same after tane, I get out of breath very easily doing mild things like walking up stairs etc,
stands to reason that I may be breathing poorly in my sleep even though my body is relaxed....I dunno, maybe a machine could help us.

Yea I haven't slept more than 5 hours since 18 I'm 28
so a decade
sleep paralysis days I don't
spent weeks up at a time
was taking 6mg of xanax to get 6 hours but that's crazy
yea my lungs I was told pleurisy but I'm also housebound most days so no fresh air
walking up stairs and other stuff sex I do run out of breath fast I thought it was because I'm in active
could be
see the problem with machine is it can dry out nose and eyes and sensitive skin
i feel like I'm screwed
I can't treat shit
they told me I had sleep apnea years ago but didn't fit the criteria I was 165 the me 5 feet 10
im of 130 and my adenoids tonsils small
i have at home sleep study 9/15

fill u in

whays are all the symptoms u have
what Do u eat drink take med supplements?
Bed time and average sleep?

I think we do get better over time, I was able to more or less master my anxiety just over the years by socializing with people more, being outdoors, exercise, and diet changes. It took almost a decade. It's definitely the hard route and not a pharmaceutical quick fix. I see about 1-2% improvement per year.

I can't help but think many of your symptoms have now been intertwined with those powerful medications that you have taken over the years. I think really avoiding those powerful drugs is key to any long term improvement. I'm not super anti-pharma, but I don't believe in treating such a complex issue like post Accutane disorders with such powerful chemicals when we don't even know what we are treating.

I take Vitamin C (1000mg per day) I think its essential. Milk Thistle and digestive enzymes help with my digestive organs. I also take dOterra supplements (sometimes) as they are complex combos of really good ingredients.

I'm going to try hyperbaric o2 this year to treat my depression. Depression is such a misleading word as I think its more of a neurological "supression" that I'm trying to treat.

Also considering EEG biofeedback therapy.

Going to address my low T levels as well starting next week and see if that helps with sleep, healing, depression, brain fog.

Sleep is very poor for me, mainly because I have day/night reversal, but again it improves 1-2% per year. I am considering a drug called Xyrem. I also deal with Sleep paralysis often if I try to sleep twice in one day. It's almost guaranteed.

I agree with this approach to treating our brain issues. Medicating depression like symptoms isn't the answer for me, sure it did take the edge off but it never felt like I was healing the root cause.

None of us have fully explored hyperbaric oxygen therapy enough, it sounds very interesting in that it may help to rewire our brains again.

If we could get good quality sleep that would also help, exercise, some people have improved their coping mechanisms with meditation, yoga done mindfully is super beneficial- even just for strength and to help the joints.

Nemesisbrady: Dryness is a big issue, I hate to say but it remained after Accutane, dried up everything, eyes, skin, joints, hair etc etc. I sweat severely after tane yet my moisture content is fucked - I've got nothing in the way of advice - tane did its job on me in that regard I hate to say!!

1 hour ago, macleod said:

I think we do get better over time, I was able to more or less master my anxiety just over the years by socializing with people more, being outdoors, exercise, and diet changes. It took almost a decade. It's definitely the hard route and not a pharmaceutical quick fix. I see about 1-2% improvement per year.

I can't help but think many of your symptoms have now been intertwined with those powerful medications that you have taken over the years. I think really avoiding those powerful drugs is key to any long term improvement. I'm not super anti-pharma, but I don't believe in treating such a complex issue like post Accutane disorders with such powerful chemicals when we don't even know what we are treating.

I take Vitamin C (1000mg per day) I think its essential. Milk Thistle and digestive enzymes help with my digestive organs. I also take dOterra supplements (sometimes) as they are complex combos of really good ingredients.

I'm going to try hyperbaric o2 this year to treat my depression. Depression is such a misleading word as I think its more of a neurological "supression" that I'm trying to treat.

Also considering EEG biofeedback therapy.

Going to address my low T levels as well starting next week and see if that helps with sleep, healing, depression, brain fog.

Sleep is very poor for me, mainly because I have day/night reversal, but again it improves 1-2% per year. I am considering a drug called Xyrem. I also deal with Sleep paralysis often if I try to sleep twice in one day. It's almost guaranteed.

I agree some stuff improves sadly this dryness and rash flushint hasn't...sleep paralysis went away for awhile think mines stress related...agree those meds did more to me
been off them 10 months
alhough the singulair was recent and caused muscle twitch in face took few days of stopping the med go away
I'm going to try melatonin 10mg
medicinal weed and magnesium to help sleep
but do need to change sleep schedule that's a huge thing
and stress
i want to try. Raw vitamin c but it has nightshades and I was told to avoid those...wonder if it matters or not
i always 4,000 vitamin d level is still 37
i take probiotic 2,000mg fish oil
throne b complex I have a mutated gene mthfr so need that
milk thistle 1-2 day hasn't done anything for symptoms

I agree we need sleep
and that sucks
this dryness is my biggest complaint next to sleep mental and flushing

I just wash face water before bed and rub a Manukahoney vitamin e organic thing on face let it air dry
sucks eyes plugged and castor oil inside still no relief and eye drops
tried restasis xxidra
maybe try lipiflow...
vaseline and nose gel don't help

i didn't sweat for years I hated it
now I sweat when anxious or really hot which is normal I believe

On 8/22/2017 at 5:38 AM, guitarman01 said:

What they are saying in that study and other studies I have looked at is basically mk-4 distribution is not based on dietary intake of k2.
mk-7 should convert to mk4 via a k2 analog which is menadione. The long chain menaquinones (mk7) are what is synthesised by bacteria and then through a separate conversion process converted to mk4 at different tissue sites.
mk7 has a very long half life of 3 days. mk4 has a very short half life.
there isnt enough conclusive evidence if one is superior to the other.
you have a mk4 supplement (possibly most important menaquinone) that avoids any conversion process.
Or you have mk7 that hangs around for days and is possibly available on call to convert to mk4, and long chain menaquinones could be involved in yet unknown processes and interact with bacteria more so than mk4( mk4 is short chain)
basically all this means is experimenting with one or the other, or both.

im looking at mk-7 first. ive been taking a synthetic version at 300mcg to 450mcg so far, per day. its been slowing down my bowels though, but so do probiotics on average. A harvard study showed probiotics slow gut transit time by 12 something hours, but increase the amount of weekly bowel movements. Im going to stick with it awhile longer before looking at mk4. A long chain menaquinone (like mk7) is what might have been eliminated with the acne bacteria. This is what the body produces on its own, and then it gets synthesized to mk4. The body is not capable of producing mk4 from nothing. Pretty sure.

Notice anything from the K2 @guitarman01? Assume you supplement D3 alongside it? I'm planning to get back onto the K2. Apparently K1 can be sourced easily from leafy greens like kale, and K1 is converted into K2 in the gut, but I'm not sure if that is the case with our screwed up microbiome, so I'll get on with 100mcg of K2.

Apparently the strain of beneficial e.coli (which my gastrointestinal tests show I have no growth of) actually makes vitamin K in the gut, so I'm definitely going to be deficient. Beneficial e.coli also makes some B vitamins in the gut, so probably why I do a bit better taking an active B-complex.

It seems to be really hard to actually re-establish beneficial strains in the gut once they've been wiped out, but I'm eating a paleo diet now with loads of fermented vegetables so I'm hoping I can have another go with taking a load of mutaflor probiotic.

Also worth pointing out @mariovitaliidentified vitamin K as one of the main common factors using his analysis software.

https://healdove.com/disease-illness/Escherichia-or-E-coli-Intestinal-Flora-and-Bacterial-Infection

I agree, it's very hard to re-establish our gut health, in my case not even a gastroenterologist could give me any advice!!
It was actually a chemist where I got better advice and was told about Mutaflor - unfortunately though it didn't do anything for me. I may try again though!

You could try the long route with the "Gut Thrive In 5" program, very hard to get the 30 supplements needed here in Aust, victims in the US might fare better?

On 8/27/2017 at 3:18 AM, Nemesisbrady said:

I agree some stuff improves sadly this dryness and rash flushint hasn't...sleep paralysis went away for awhile think mines stress related...agree those meds did more to me
been off them 10 months
alhough the singulair was recent and caused muscle twitch in face took few days of stopping the med go away
I'm going to try melatonin 10mg
medicinal weed and magnesium to help sleep
but do need to change sleep schedule that's a huge thing
and stress
i want to try. Raw vitamin c but it has nightshades and I was told to avoid those...wonder if it matters or not
i always 4,000 vitamin d level is still 37
i take probiotic 2,000mg fish oil
throne b complex I have a mutated gene mthfr so need that
milk thistle 1-2 day hasn't done anything for symptoms

I agree we need sleep
and that sucks
this dryness is my biggest complaint next to sleep mental and flushing

I just wash face water before bed and rub a Manukahoney vitamin e organic thing on face let it air dry
sucks eyes plugged and castor oil inside still no relief and eye drops
tried restasis xxidra
maybe try lipiflow...
vaseline and nose gel don't help

i didn't sweat for years I hated it
now I sweat when anxious or really hot which is normal I believe

Brady, let me know if the weed helps with your dryness. I wont mention names but I have been told by a couple of people that it brought back their sebum production.

If that does work and my face could moisturize itself again I could quite easily move on with life as I don't have any other issues. The dryness is killing me 7 years on from the damn drug. Saw a derm for the first time since taking accutane, last week, and she said theres nothing she can do for me and discharged me. Absolute waste of my time. She didn't believe that it had caused permanent dryness.

Yes. I'm interested to know why omega 3 is bad? Anyone?