1 hour ago, Juwalker said:

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

Who said it's bad?

3 hours ago, Juwalker said:

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

Cod Liver oil is bad due to the vitamin A content - Omega 3 in the form of fish oil etc... is fine.

On 8/29/2017 at 5:18 PM, Justdry said:

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.

I def will
i have a theory as to why it made some people that way
i did hear weed can mess with t levels not sure if that's true
also maybe they craved more sugar and bad foods
again those foods milk sugar I heard make skin oily
makes sense I grew up consuming allllll of them for years
my face use to be an oily mess had to wash face 3x a day
i use to hate it
noe I miss it
i too have that dry skin that's always pink burns and it use to be worse years after tane 1-3 years I couldn't even open my mouth it would hurt so bad

I'm it saying eat excessive sugars and spike ur blood sugar
but what's your diet?
i not knocking vegans but I know a lot of people that avoid animal fat are very dry
I avoided it and felt worse
i avoid dairy and sugar so maybe that's why my skins this way

i hate derms I gave up on them
sorry yours was so cold

I also avoided washing my face for a long time
because I didn't want to dry it more
avoided moisturizers at the time to
because 2 reasons
i didn't a ear of applying anything to the sides of my red face
and was ignorant and thought girls had to moisturize

boy as I wrong

what I do is
I wet face before bed
exfoliate my nose and apply this manuka honey type moisturizer and let it air dry before bed
i should do it in day time
but face is too sensitive
I suffer from urticaria dermatagraphisim
and I can't take antihistamines because I'm so dry

i just started two fish oils
(heard some people are worse with this post tane, I'll let u is how it is with me...
also take two b complex
not jist for biotin but I have a mutated gene mthfr
which is very common with people regardless ornate accuPAIN

4,000 vitamin d-though I'm still low not sure why....

milk thistle as as I did have liver damage from drug

also don't be afraid of acid
our body needs it
(hylauronic acid, apple cider vinegar)
i know most ppl want to alkalize body but acid is needed as well

water obviously

also was this into consideration
something I'm workig on

i kno were dried up
But maybe we were so use to oily skin and thought it was healthy
(I know they say oily is young skin)
but maybe our skin is little more normal?

could be off
who knows

how long did u take it?
how many mg?
how long since last dose?

all I can think of at the moment
I will find the moisturizer I use after nap..

god bless

On 8/29/2017 at 10:54 PM, Justdry said:

Cod Liver oil is bad due to the vitamin A content - Omega 3 in the form of fish oil etc... is fine.

They want to try cod liver oil on me because of dry eyes

had anyone tried this?
my a levels normal
but I do avoid a retinal and dryness is a symptom of lack of a and toxcitiy
im curious if I'll end up killing myself with the a
or if this is the key to healing

On 8/29/2017 at 11:43 PM, Roland1968 said:

I was just wondering if this would help to bring back our pre-accutane skin?

[Edited link out]

Thoughts?

Looks good and promising
but I don't see doctors using this for us

curious to see how well this really works though on burn victims

2 hours ago, Justdry said:

Cod Liver oil is bad due to the vitamin A content - Omega 3 in the form of fish oil etc... is fine.

It's just not that simple, it might be bad for some, but beneficial for others. That's the problem with this mess, everyone is affected in a slightly different way. I certainly have no issues with CLO, and it has many benefits such as reducing cortisol, brain health, anti-anxiety etc.

@guitarman01 @tanedout

Yet one more patient with CFS with Liver Fibrosis (F2 to F3) :

10 minutes ago, mariovitali said:

@guitarman01 @tanedout

Yet one more patient with CFS with Liver Fibrosis (F2 to F3) :

That's interesting, and pretty concerning as fibrosis is a serious condition and not easy to reverse. 

Do you know anyone who has been tested and come back negative? 

Everything you look into, related conditions like CFS etc - it all seems to have the root cause of gut health;

Quote

Non-alcoholic fatty liver and the gut microbiota.

Bashiardes S1,Shapiro H1,Rozin S1,Shibolet O2,Elinav E1.

Author information

Abstract

BACKGROUND:

Non-alcoholic fatty liver (NAFLD) is a common, multi-factorial, and poorly understood liver disease whose incidence is globally rising. NAFLD is generally asymptomatic and associated with other manifestations of the metabolic syndrome. Yet, up to 25% of NAFLD patients develop a progressive inflammatory liver disease termed non-alcoholic steatohepatitis (NASH) that may progress towards cirrhosis, hepatocellular carcinoma, and the need for liver transplantation. In recent years, several lines of evidence suggest that the gut microbiome represents a significant environmental factor contributing to NAFLD development and its progression into NASH. Suggested microbiome-associated mechanisms contributing to NAFLD and NASH include dysbiosis-induced deregulation of the gut endothelial barrier function, which facilitates systemic bacterial translocation, and intestinal and hepatic inflammation. Furthermore, increased microbiome-modulated metabolites such as lipopolysaccharides, short chain fatty acids (SCFAs), bile acids, and ethanol, may affect liver pathology through multiple direct and indirect mechanisms.

SCOPE OF REVIEW:

Herein, we discuss the associations, mechanisms, and clinical implications of the microbiome's contribution to NAFLD and NASH. Understanding these contributions to the development of fatty liver pathogenesis and its clinical course may serve as a basis for development of therapeutic microbiome-targeting approaches for treatment and prevention of NAFLD and NASH.

MAJOR CONCLUSIONS:

Intestinal host-microbiome interactions play diverse roles in the pathogenesis and progression of NAFLD and NASH. Elucidation of the mechanisms driving these microbial effects on the pathogenesis of NAFLD and NASH may enable to identify new diagnostic and therapeutic targets of these common metabolic liver diseases. This article is part of a special issue on microbiota.

https://www.ncbi.nlm.nih.gov/pubmed/27617201

Yea, but that's a female and she's fairly old. It's an old liver regardless of diet and alcohol use. We are adult males in our 20's - 30's.

11 minutes ago, macleod said:

Yea, but that's a female and she's fairly old. It's an old liver regardless of diet and alcohol use. We are adult males in our 20's - 30's.

Regardless of age, I'm just highlighting the link between liver issues and gut health. It's almost certain we all have gut health issues - look at the gastrointestinal tests everyone gets - EVERYONE with post accutane, PFS, CFS comes back with issues with microbiome. It's too much for co-incidence.

I think whatever protocol you decide to follow, eating a very clean (ideally organic) diet with no refined sugar, processed foods, alcohol and plenty of fermented foods like sauerkraut is just a no-brainer.

Hey @guitarman01

i know you didn't test positive for sjogrens but this could DEFINITELY apply to us. Like maybe we don't all have the "same" root cause of autoimmune issues 

(some people have lupus, some sjogrens, some the ACHR Ganglionic antibody, whatever it may be) 

but the thing we share in common are the effects of dysautonomia 

Seems I can only post from my phone atm. Have to try this again later.

I must have cracked the code and they're on to me. Just kidding.

4 hours ago, Colinboko said:

Hey @guitarman01

i know you didn't test positive for sjogrens but this could DEFINITELY apply to us. Like maybe we don't all have the "same" root cause of autoimmune issues 

(some people have lupus, some sjogrens, some the ACHR Ganglionic antibody, whatever it may be) 

but the thing we share in common are the effects of dysautonomia 

 

 I'm  still convinced I have sjorgens
and pots
theyve mentioned dysautonimia before
my Ana speckled twice 
eye schrimer test showed no tears
lip biopsy was negative and no antibodies 
but still dry eyes nasal passages scalp skin
mouth only on meds and anxiety and waking up

1 hour ago, guitarman01 said:

Seems I can only post from my phone atm. Have to try this again later.

I must have cracked the code and they're on to me. Just kidding.

Hahaha literally though

This is CRAZY, watch this video about leaky gut! He goes on about leaky gut leading to bile issues, and resulting in vitamin deficiencies (because they're not being absorbed properly).

He goes on about it leading to things like poor night vision, dry skin - sound familiar?! He could almost be talking specificallyabout accutane side effects here!

Posted byBerndon 11 Jun 2013 at 6:18 amHi there,

just published this in another forum. If somebody can get benefit out of it, Im glad to share ...


I used to suffer from heavy side effects caused by propecia like brainfog, depression, anxiety, sexual problems, memory loss and sluggish speech for about 5 years.

My side effects were so severe that I couldnt work, couldnt hang out with friends, couldnt have sex, couldnt even smell and taste. In the first years, I was just at home and lying in my bed. I couldnt feel no joy for nothing and felt totally disconnected and numb.

I saw many doctors and naturopaths on the way. I what quite hard to convince many professionals, nobody could believe that Propecia can cause this. I tried different supplements, drugs, hormones etc. and found that they didnt make it better, some even made it worse.

More and more and realized, that just taking another form of drug to heal my symptoms might not do the job. And so i got interested into a more holistic kind of an approach and finally also met a doctor, who was very skilled and showed real interest in my case.

Together with her, we worked out plan, how to reset my hormonal system and adrenals completely and bring my body back in balance again. Besides keeping a healthy diet and taking the right supplements ,we focused very much on healing the colon, as she says, that hormones and neurotransmitter production as well as adrenal function are very depended on a healthy intestinal flora.

"If you dont have a healthy colon, you much more sensitive all sorts of diseases including the side effects of certain pharmaceuticals." thats what she said.

I tried various colon cleansing methods before, and failed, until i learned how to it the right way.
The better my colon got and the more detoxified my body was, the lesser my side effects got as well.
In my case it was quite obvious, that the condition of my colon and adrenals very directly connected to the degree of my side effects.

Today Im fully free of symptoms, and honestly guys, just a year back, I couldnt believe that this will ever be the case. I dont have any brainfog, depression, anxiety and sexual problems left. I feel that I got all my energy back and finally can close this chapter once and for all.

I m currently working on blog were I will my whole program with you I cannot guarantee, that this will cure everyone, but it certainly can make you feel much better, more clear and also improve your sexual energy,.The main steps I did were:

- getting toxins, heavy metals and acids completely out of my body by taking huge amount of bentonite everyday
changing the ph of my blood and tissues by eating a alkaline diet
eating foods, that support my colon, hormones and adrenals
- changing the ph and environment in my intestinal flora by taking bowel supplements and probiotica
taking bio-identical progesterone
taking DeoxyCholic Acid ( DCA) which is a bile acid
- taking chinese herbs to restore my sexual energy like schisandra, cordyceps etc.
doing exercises that support hormone and adrenal function
living a natural lifestyle
avoiding stress as much as possible
changing my mental attitude in regards to my side effects and taking responsibility


these are the rough points. My blog will be finished in a few weeks, then youll get in very in detail.

[Edited link out]

Just posting this as every reported recovery is encouragement.

Here is how some of you could possibly get any blood test you can think of (or prescriptions, if wanted) on the cheap (check on prices and insurance coverage).

HealthTap teams with Quest Diagnostics to let its virtual doctors order lab tests
http://fortune.com/2015/06/30/healthtap-teams-with-quest-diagnostics-to-let-its-virtual-doctors-order-lab-tests/

For example they offer the test ive mentioned numerous times now on its own through Quest Diagnostics.
http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=93881&labCode=WDL

Acetylcholine Receptor Ganglionic (Alpha 3) Antibody

Test Code

93881

The G-nAChR autoantibody assay can be used to identify Autoimmune Autonomic Ganglionopathy (AAG)

It doesnt matter if you think its vitamin a toxicity, liver fibrosis, altered gut flora, or altered brain function. You find evidence of this going on in enough people post accutane, it could be a lawsuit.

il be following up with this with an appointment next friday through the neurologydept at a university.

This,
The influence of 13-cisRA on brain glucose metabolism measured by PET FDG. Four months 13-cisRA treatment results in a clear decrease in orbitofrontal cortical function in this representative subject. The same subject had symptoms of headache and slight...

In the case of patients reported to the Norwegian Medicines Agency, single photon emission computed tomography (SPECT) of the brain was performed in 15 cases who reported lasting neurological symptoms. Altered brain function was seen in all cases involving altered or reduced frontal lobe blood flow.¹⁷³Ten of these patients were evaluated to have organic brain damage.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3276716/

Could be related to this,
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

10 minutes ago, guitarman01 said:

Here is how some of you could possibly get any blood test you can think of (or prescriptions, if wanted) on the cheap (check on prices and insurance coverage).

HealthTap teams with Quest Diagnostics to let its virtual doctors order lab tests
http://fortune.com/2015/06/30/healthtap-teams-with-quest-diagnostics-to-let-its-virtual-doctors-order-lab-tests/

For example they offer the test ive mentioned numerous times now on its own through Quest Diagnostics.
http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=93881&labCode=WDL

Acetylcholine Receptor Ganglionic (Alpha 3) Antibody

Test Code

93881

The G-nAChR autoantibody assay can be used to identify Autoimmune Autonomic Ganglionopathy (AAG)

It doesnt matter if you think its vitamin a toxicity, liver fibrosis, altered gut flora, or altered brain function. You find evidence of this going on in enough people post accutane, it could be a lawsuit.

il be following up with this with an appointment next friday through the neurologydept at a university.

This,
The influence of 13-cisRA on brain glucose metabolism measured by PET FDG. Four months 13-cisRA treatment results in a clear decrease in orbitofrontal cortical function in this representative subject. The same subject had symptoms of headache and slight...

In the case of patients reported to the Norwegian Medicines Agency, single photon emission computed tomography (SPECT) of the brain was performed in 15 cases who reported lasting neurological symptoms. Altered brain function was seen in all cases involving altered or reduced frontal lobe blood flow.¹⁷³Ten of these patients were evaluated to have organic brain damage.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3276716/

Could be related to this,
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

I can't remember what your exact results were for the AAG test? Was it a weak positive? Or a 100% positive?

i thought this was a good, patient, simple breakdown of vitamin K.

22 minutes ago, Colinboko said:

I can't remember what your exact results were for the AAG test? Was it a weak positive? Or a 100% positive?

positive is greater than 0.02 im 0.07.
This is from mayo that interpreted my test result,
This profile, in the proper clinical context, would support autoimmune dysautonomia.
This is from a forum,
There are 2 types of ACHR. The nicotinic ACHR is used to detect myathenis gravis. The ganglionic ACHR is used to detect autonomic dysfunction. According to my neurologist the gACHR is highly sensitive and false positives are rare.

Il hopefully have more information on this next friday along with more testings.

Just got some current blood tests done with a new doctor.. same as two years ago. High testosterone, low FSH and low vitamin D. I will see a neuro in 2 weeks and ask for the autonomic test. 

I don't wanna scare u
but I may have answers for u
whats your symptkms
because ur tsh is really low and ur ferritin levels

i bet u have hypothyroid
and that can mess with t levels
my t levels are high to

Just now, Nemesisbrady said:

I don't wanna scare u
but I may have answers for u
whats your symptkms
because ur tsh is really low and ur ferritin levels

i bet u have hypothyroid
and that can mess with t levels
my t levels are high to

Octopusfrog

19 hours ago, guitarman01 said:

positive is greater than 0.02 im 0.07.
This is from mayo that interpreted my test result,
This profile, in the proper clinical context, would support autoimmune dysautonomia.
This is from a forum,
There are 2 types of ACHR. The nicotinic ACHR is used to detect myathenis gravis. The ganglionic ACHR is used to detect autonomic dysfunction. According to my neurologist the gACHR is highly sensitive and false positives are rare.

Il hopefully have more information on this next friday along with more testings.

Definitely going to try for this once other tests come back. It could also be very possible that some people may have different forms of dysautonomia from our immune system going nuts. I apply more to the PoTS side of dysautonomia, in terms of absolutely crushing fatigue, dizziness and balance issues, muscle weakness, heart rate speeding up when I stand up..

And pots patients also have dry fatigued eyes, dry hair, skin, light sensitivity... so yes why it's ironic that you and Babis tested positive for AAG that could just be your own personal strand of this mess.

What is PoTS??

its all still too new for me to know acronyms etc so can I ask we spell it out the long way till we're all familiar with it....

thank you

1 minute ago, TrueJustice said:

What is PoTS??

its all still too new for me to know acronyms etc so can I ask we spell it out the long way till we're all familiar with it....

thank you 

My bad! Here's the full name 

Could possibly explain our random hair growth, @TrueJustice

Everyone needs to get checked igg4 related diseases

my allergist at mass general hospital in boston
told me I may have that or sjorgens and it mimics sjorgens

it can attack pancreas thyroid liver kidney lymph nodes 
I'm seeing a new rheum 
this nightmare never ends

get checked igg4
i think that will narrow this down
he seemed confident it's that

mentions fibrosis thyroid tissue
didnt someone have that on liver?

38 minutes ago, Colinboko said:

My bad! Here's the full name 

Could possibly explain our random hair growth, @TrueJustice

I need them to look into this I get flushing hives heat dryness everywhere sleep issues cold hands feet anxiety heart palp frequent urination 
weight issues

they did mention this dystaunomia thing