Question @guitarman01

So, I called and they said that if it wasnt greater than 53 then its deemed negative. (Which is NOT true)

Because there are several cases where lower titres are found with the same amount of symptoms. I asked her for my value but she said it wasnt provided... which sucks because if its not documented then Ill never know if I have the antibody or not.

Quest must have a different setup for it. It literally says on the website <53

What am I supposed to do with that ? Pretty positive Babis received a negative result but later found out that he had the antibody just not in mass amounts.

14 hours ago, Nemesisbrady said:

so ima avoid a
and ur gunna try a?

This actually made me laugh. That about sums up the craziness of it all.
That paper discredits vitamin a being classified as a vitamin, but a toxin instead. Pretty radical idea.
We dont need anything that graphic of that last pic please. That is a serious nosebleed though.

14 hours ago, macleod said:

I referenced a medical journal about a boy in India who lost all night vision while on Accutane. The doctors took him off and treated with 200,000iu vitamin A for a few months, and he made a full recovery.

Pretty sure this was 25,000 iu daily for one month. 200k would be quite the dosage.

1 hour ago, Colinboko said:

Question @guitarman01

Il get back to this when I have more time. On my lunch break.

2 hours ago, guitarman01 said:

This actually made me laugh. That about sums up the craziness of it all.
That paper discredits vitamin a being classified as a vitamin, but a toxin instead. Pretty radical idea.
We dont need anything that graphic of that last pic please. That is a serious nosebleed though. Pretty sure this was 25,000 iu daily for one month. 200k would be quite the dosage. Il get back to this when I have more time. On my lunch break.

Sounds good. Im just confused because I thought it was more of a if you have the antibody versus it meeting a certain reference range?

It says on quest that results should be less than 53pmol/l which converts to .053 nmol/l

The low-positive for this test is .03-.09 I believe. How the hell would I even know without my results? Basically all quest did was check to see if it was greater than .053 and it wasnt so therefore Im negative? Bullshit in my opinion. My nurse said my amount wasnt even displayed. But quest does submit my labs digitally through their app so Im wondering if Ill get a number on there and then I can be like hey doc look

If I can remember correctly @guitarman01Mayo measures it in nmol/l and gives you your actual measurement. I wish you could find your results

1 hour ago, guitarman01 said:

This actually made me laugh. That about sums up the craziness of it all.
That paper discredits vitamin a being classified as a vitamin, but a toxin instead. Pretty radical idea.
We dont need anything that graphic of that last pic please. That is a serious nosebleed though. Pretty sure this was 25,000 iu daily for one month. 200k would be quite the dosage. Il get back to this when I have more time. On my lunch break.

Graphic lol

u did take accutane too right?? Didnt show anpenis pic with herpes

anyways this drug lowered and altered all our hormones

this is all hormonal issues and we need to do something

it clearly disrupted shit in our bodies

6 hours ago, Colinboko said:

Question @guitarman01

So, I called and they said that if it wasnt greater than 53 then its deemed negative. (Which is NOT true)

Because there are several cases where lower titres are found with the same amount of symptoms. I asked her for my value but she said it wasnt provided... which sucks because if its not documented then Ill never know if I have the antibody or not.

Quest must have a different setup for it. It literally says on the website <53

What am I supposed to do with that ? Pretty positive Babis received a negative result but later found out that he had the antibody just not in mass amounts.

I knew you wouldnt get a comprehensive result with this, just knew it, though I commend you for trying.

like everything nothing ever comes back with a clear diagnosis.......so the self diagnosis and experimenting shall continue I guess.

On another note, the whole Vit A supplementing theory has been talked about for years on this board, everybody has mixed ideas on it but wed all have to agree that its interesting that Doctors choose to put some Accutane patients on it when problems arise, that in itself is interesting- how do they know to do that?? Maybe some of the Indian doctors know more about the mechanism of action with Tane?!!

Maybe we need to experiment more with Vit A and slowly build up the dose, could be that initially we feel like crap but slowly our tolerance can be built up....dunno its just an idea.

Put it this way, if it cured night blindness for someone, might it not also cure a few other ailments??

21 minutes ago, TrueJustice said:

I knew you wouldnt get a comprehensive result with this, just knew it, though I commend you for trying.

like everything nothing ever comes back with a clear diagnosis.......so the self diagnosis and experimenting shall continue I guess.

On another note, the whole Vit A supplementing theory has been talked about for years on this board, everybody has mixed ideas on it but wed all have to agree that its interesting that Doctors choose to put some Accutane patients on it when problems arise, that in itself is interesting- how do they know to do that?? Maybe some of the Indian doctors know more about the mechanism of action with Tane?!!

Maybe we need to experiment more with Vit A and slowly build up the dose, could be that initially we feel like crap but slowly our tolerance can be built up....dunno its just an idea.

Put it this way, if it cured night blindness for someone, might it not also cure a few other ailments??

Lol its not comprehensive because it was through quest and not mayo and they have a different setup/process. I dont have MY result, I just know it wasnt greater than 53pmol/l. There are varying levels of this antibody. (So it seems) and I wont know until I get my actual numbers

One thing I can definitely say for me is that this is highly neurological.

Gastric dysmotility? Check
Orthostatic hypotension? Check
Vocal cord dysfunction? Check
Light/Sound sensitivity? Check

Even if its not this specific antibody, there are several antibodies being considered for dysautonomia. I could very well have an immune related form of POTS. It would explain the constant fatigue. Its for sure my immune system... IF I catch a cold it is wiped out 1000x faster than pre-tane.

Ok so let me get this straight none of us have got a single answer??

yet multiple symptoms lmao

ok thats crazy

its funny I was told all in my head yet dry
then Sicca syndrome
then told my thyroid was dying and I needed meds
now its cured lmao
yet same symptoms and nothing better

tsh was high
elevated cholesteol
elevated triglycerides
high alt
high ast
pre diabetic
estrogen high
t levels high
total t low normal
zinc low
magnesium low
igg4 elevated
ana speckled
low normal ferritin
mutated mthfr gene homozygous or Hetero
high urine iodine after iodine supplement
my retinol levels are 0.1 range 0.0-0.9
so o clue
Low vitamin d
now 37 despite being 5,000 iu
gerd inflamed esophagus
fatty liver normal now

thats about it for me but never treatment or answers

we should be getting something for the suffering us and our families have go thru
i say we fight back fuck this

i Iove is docs brush me off afraid of lawsuit yet lawsuits are for bowel issues
and Im complaining of rosacea and dry eyes dry Sicca body
and sleep issues
urinatinf too much
cold feet hands
flushing
anxiety depression

i smell something fishy

i ink its time we take a stand and fight back

1 hour ago, Colinboko said:

Lol its not comprehensive because it was through quest and not mayo and they have a different setup/process. I dont have MY result, I just know it wasnt greater than 53pmol/l. There are varying levels of this antibody. (So it seems) and I wont know until I get my actual numbers

One thing I can definitely say for me is that this is highly neurological.

Gastric dysmotility? Check
Orthostatic hypotension? Check
Vocal cord dysfunction? Check
Light/Sound sensitivity? Check

Even if its not this specific antibody, there are several antibodies being considered for dysautonomia. I could very well have an immune related form of POTS. It would explain the constant fatigue. Its for sure my immune system... IF I catch a cold it is wiped out 1000x faster than pre-tane.

I have that too gettin up black speckled light headed

all our issues are age relegated dehydration

accutane ages and dried us all
we prob need to double amount water normal ppl
or we need iv? Idk this is insane too many similar issues

some of the vocal chord stuff Im sorry I dont got
light sound is anxiety least was for me coming off meds I was jumpy

idk this sucks

On 4/21/2018 at 6:15 AM, Colinboko said:

If I can remember correctly @guitarman01 Mayo measures it in nmol/l and gives you your actual measurement. I wish you could find your results

I know my results. I will get another copy of the test and screenshot it or see if I can get the format viewable online.
0.07  considered positive according to Mayo. It said considered positive according to their interpretation. 
 Reference Values
[Edited link out]

AChR Ganglionic Neuronal Antibody

< or =0.02 nmol/L

Cautions 

On 4/21/2018 at 9:02 AM, Colinboko said:

Gastric dysmotility? Check
Orthostatic hypotension? Check

I think its safe to say gastric dysmotility has been confirmed for me.
Not only with this test but also CT Scan. I might actually present this acetylcholine test result to a gastro dr next, before another neurologist. 

Orthostatic hypotension has been disproven at least for myself through tilt table testing 
This doesn't mean I don't get light headed. Or used to.

On 4/21/2018 at 9:52 AM, Nemesisbrady said:

gerd inflamed esophagus

me too. eosinophilic esophagitis. not the most common diagnosis. 

On 4/21/2018 at 10:33 AM, guitarman01 said:

I know my results. I will get another copy of the test and screenshot it or see if I can get the format viewable online.
0.07  considered positive according to Mayo. It said considered positive according to their interpretation. 
 Reference Values
[Edited link out]

AChR Ganglionic Neuronal Antibody

< or =0.02 nmol/L

Cautions 

Negative results do not exclude autoimmune gastrointestinal dysmotility or cancer.

Yes you cant compare quest to mayo, the labs are different, the numbers are different . the numbers do not coincide. 

I thought quest would be the easiest test to get or approved over the mayo test.
In the future id look into one of the following,
Autoimmune Gastrointestinal Dysmotility Evaluation, Serum
[Edited link out]

Autoimmune Dysautonomia Evaluation, Serum
[Edited link out]
 

I think its safe to say gastric dysmotility has been confirmed for me.
Not only with this test but also CT Scan. I might actually present this acetylcholine test result to a gastro dr next, before another neurologist. 

Orthostatic hypotension has been disproven at least for myself through tilt table testing 
This doesn't mean I don't get light headed. Or used to.

me too. eosinophilic esophagitis. not the most common diagnosis. 

Thanks for the recap! Hoping when my results are displayed through my quest app, I™ll have some form of measurement. 

Ok so Im starting to think for me
pots Dysautonomia thing

which nervous system is controlled by hypothalmus
accutane can fuck that up

and that controls pituatry and all that
and hormones hahaha

its common sense accutane did this

[edited link out]

not sure but but I got flushing and dry eyes and few others this list

and no dry eye treatment works for me

Choline is in any good quality multivitamin- is that not enough??

Been taking multis on and off for years!!

Has anyone tested for biotin deficiency and been found to be deficient if just one of you could confirm for me
thanks

Since December Ive been experiencing pressure behind and around my right eye. It came about just after I attempted to do a 'liver flush' using a product called 'allohol', which is basiclly ox bile and a few other herbs. Anyway, i took a tonne of that and eventually ended up with this pressure behind my eye. Not only that but my bowel movements slowed right down and I began to produce more flatulence after eating more fat heavy meals. I suppose that pressure doubled as brain fog and my inability to digest fats, after I had already sorted that problem out years before, made me more fatigued.

I explained this to my local GP and shes put me on 'dymista 125/50', which after a few weeks managed to relieve the pressure I was experiencing, obviously it did nothing for my digestion and subsequent fatigue.

This time, now knowing the probably cause, being the 'allohol', I am convinced this is a result of a blocked gallbladder.

Its the microbiome. Accutane did extensive damage to the gut flora and thats where all your problems stem from. Little is known about the microbiome but its better to think about it as your second brain. I believe Accutane probably destroyed some necessary and key bacterium in your gutdepending on which ones it killed thats were your problems are. This explains why all of our problems are similar to CFS, Fibromyalgia, IBS, Autoimmune diseases, Chrons all of which are poorly understood and with an unknown cause, but with new reasearch linking all these disease to disruption in the gut caused by an illness(Ebstan-Barr, etc), or in our case, medication likeAccutane.

The good news is that I believe science is now looking more into the microbiome, gut flora, mind-gut connection, etc.and how all these poorly understood illnesses stem from that.I feel like once more research is done and effective treatments are created( fecal transplants to reintroduce lost got bacteria, etc) so many people with these debilitating illnesses, including ourselves, will find relief.

I am convinced this is the answer. Before I took accutane, yes i was relatively healthy, but I remember always having issues with my stomach. I had mild forms of depression and fatigue, but nothing like I have now. Accutane further damaged my already weak gut and opened up the floodgates to all my current problems. This explains why the only people that somehow cure themselves or reach a stage of functionality focus mainly on changing their diet.

The unfortunate part is that Im alsoconvinced most vitamin supplements are useless, including probiotics. The body doesnt absorb these.Even fecal transplants dont seem to work. I imagine its because its better to see the gut as the second brain and the killing of some our bacterium is the equivalent of the killing of neurons in the brain. You dont regrow lost neurons and I assume you dont regrow lost bacterium either. Thats why most of us stay sick but diet may seem like the only true remedy to add some relief.Food is the best way to diversify the gut flora and reintroduce good bacteria, although to what extent remains unclear. But at least. we are heading to the right direction.

The lastthing Id like to add is that while we wait for science and medicine to provide he answer,its also possible to get to a functional state nowand theres so much out there that provides some relief(CBD oil for myself), but I think the post accutane sufferers that tend to do the worst are those that dont accept their newlimitations and are convinced they can somehow return to their previous Accutane state. Those people only seem to furthertheir depression and sense ofhopelessness because theyve set an unrealistic goal. I think the people that tend to do best are those that accept their new limitations, livea healthy lifestyle to the extent that they can and focus on the aspects of your life that you can control. If not, youre going to find yourself on this forum 20 years later without friends, family and a career looking for an answerthats not there.

I will say my post-Accutane symptoms are extremely debilitating, but I do have control on how I react to them. I have extreme pain in the morning, but I still go to work. I have terrible migraines almost every night, but I still go out to concerts. I do all thisdespite the pain knowing that I have the choice to let my symptoms run my life and remain in a perpetual state of self loathing and bitterness at lifes cruelty, or go about my day as normal with the pain. For instance, this past weekend i was at a reastuarant with friends and about 2 bites in I felt extremely nauseous and almost felt like I was about was about to collapse. I dont question these things anymore, I just deal with it. I got up, called an Uberand went home to rest. I wasnt bitter or angry; I justdealt with it. I know I have my good days and I have my bad days.I appreciate my good daysso much more because Im able to enjoy things despite my constant painwhile others who are perfectly healthy choose not to takeadvantage of life.This certainly was a wake up call for me and I think despite the pain, I am now a moreappreciative andempathetic person and I truly like to live my life everyday like its my lastknowing perfectly well that I am not immune to suffering, but in the end its life so you just have to deal with it.

I believe you Jorcruz but good luck getting anything out of a qualified Gastroenterologist, Ive said this a hundred times and Ill say it again, unless they find something sinister when they look in your gut and up your bum ( I did both ) they cant offer you anything!!?

So who do we turn to fix gut?? Has anyone entertained getting a poo transplant. The Gastroenterologist that I went to, this is where one of the world renowned specialists on this type of transplant works.

Any ideas anyone??

https://www.acneeinstein.com/accutane-side-effects-perspective/#comment-5069

Interesting!!

http://www.cambridgeday.com/2018/03/17/cambridge-mans-case-against-a-drug-giant-changes-landscape-if-serious-harm-occurs/

This guy took accutane

MRI next week.

Who knows what will happen! Maybe theyll see some encephalitis ? Is it weird that I hope they do? Lol

6 hours ago, Colinboko said:

MRI next week.

Who knows what will happen! Maybe theyll see some encephalitis ? Is it weird that I hope they do? Lol

Good luck
i had this done and I needed contrast for mri and they didnt do it for pituatry

And even if they do find something
they did find polyps or cyst in sinus cavity
still didnt do shit for me they brush me off

Anyways not sure if anyone wants to hear what he says

26 minute mark

2 hours ago, Nemesisbrady said:

Good luck
i had this done and I needed contrast for mri and they didnt do it for pituatry

And even if they do find something
they did find polyps or cyst in sinus cavity
still didnt do shit for me they brush me off

Anyways not sure if anyone wants to hear what he says

26 minute mark

Im confused, at the top of page 621 is a very detailed report on why we should avoid Vit A which you posted - its good reading!!

In this YouTube link it says that Accutane mimics Vit A deficiency, so which is it for us post tane....take Vit A or avoid it??

Avoid Vit A or take it in abundance to make up for the deficiency?? Im getting mixed messages....

Was going over blood work
for years my MCH is high

guess Im folate and b12 anemic

makes sense why Im so pale since accutane
cold hands feet
fatigue
dark eyes
and sleep issues
depression

My mutated gene mthfr makes it hard to get folic acid and b12
as it is

they never mentioned it

Im just as confused as u are

i have been limiting mine

year ago I was on a avoid gluten wheat dairy egg diet and some meat

bascially only a was veggies

and I was still dry and felt like shit

then I added eggs back and some dairy
no changes still dry

then I juiced kale
had spinach
sweet potatos all high beta
and my lips shriveled up and hair now falling out again and thinning

so idk

ive been avoiding high a
i only eat apples
berries
kiwi

the a from almond coconut milk and Chex cereal thats it

so idk have to see

my retinol levels were checked last year

0.1-0.10 range mine were 0.2
and total was 50
30-120 or some shit
and I was eating a so Im curious what it was when avoiding eggs meat and dairy

All tests aside, all diets and foods aside.

I know this much after 20 years, my skin is like a porcelain doll but I have no moisture just like the YouTube video says.

Moisture is either never coming back or Im yet to ingest enough beta carotene or Vit A to kick start oil production.

Does anyone else get a mood boost from coffee...?

I know I read somewhere that it mildly reduces inflammation in the brain..

So frustrated

i need some of you guys on this one

im thinking of taking 5htp for depression anxiety
as ssris cause more issues

im also confused on borage oil
sea buckthorn oil
and black currant seed

I take black currant and fish oil and still dry
someone mentioned buckthorn and borage

so confused I have about 30 supplements wrote down
to me thats a lot on liver and expensive

no clue anymore

3 hours ago, Colinboko said:

Does anyone else get a mood boost from coffee...?

I know I read somewhere that it mildly reduces inflammation in the brain..

100%. How much has brain inflammation been discussed here?

What supplements can we take?