2 hours ago, Anna.F said:

 

Hello.
have you discoverd anything that helps a little in dry eyes? I have already tried a lot of things.
I cant stand this situation anymore.

Im not sure how long you have been off accutane, we all know accutane causes a dryness itself. But im looking at something else right now. you can try this and tell me if it works. im looking at people that start to develop vision problems, light sensitivity and eye floaters years down the line post accutane.
Im looking at vascular health relating to inflammation. Im looking at possible acute changes in blood pressure that could maybe damage the eye or cause eye symptoms like what i just mentioned. im basically looking at the vascular health of the eye.

So try this. Aspirin. It simultaneously lowers inflammation and thins the blood. It has a very powerful blood thinning effect. Even one baby aspirin will thin the blood for days. So you can either try full strength aspirin briefly for maximum effect or 1 baby aspirin per day for a few days. Im not recommending this long term, but if it helps your vision, then we would know its not just a "dryness" causing the problem.

4 minutes ago, guitarman01 said:

Im not sure how long you have been off accutane, we all know accutane causes a dryness itself. But im looking at something else right now. you can try this and tell me if it works. im looking at people that start to develop vision problems, light sensitivity and eye floaters years down the line post accutane.
Im looking at vascular health relating to inflammation. Im looking at possible acute changes in blood pressure that could maybe damage the eye or cause eye symptoms like what i just mentioned. im basically looking at the vascular health of the eye.

So try this. Aspirin. It simultaneously lowers inflammation and thins the blood. It has a very powerful blood thinning effect. Even one baby aspirin will thin the blood for days. So you can either try full strength aspirin briefly for maximum effect or 1 baby aspirin per day for a few days. Im not recommending this long term, but if it helps your vision, then we would know its not just a "dryness" causing the problem.

I like this idea. Always thought my eyes just may be inflamed, and not super dry. Cause yeah everything is dried from tane but for some reason I don't have severe dryness at all really. My hair isn't disgustingly dry, (yeah I don't have to wash it as often but if I want some shine, I just apply some coconut oil) and I actually like the amount of oil my face produces now. Basically a normal human being. That's what truly forces me to believe it has nothing to do with isotretinoin still being in our systems, because the acute side effects from that vanished within a few weeks of stopping the drug. (Dry skin, lips). It set off some type of inflammatory response that is causing all my other side effects.

There was a post on brain hypo or hyper metabolism. Is it different from general hypo/hyper metabolism?
My opinion is that we have a general hypo metabolism, possibly from lowered enzymes. It correlates well with digestion problems, fat malabsorption, low libido and fatigue. In different people the enzymes are affected differently, that's why some processes work faster than others and so the symptoms may correlate or not.

Hi. I am new here, my symptoms are blepharitis, hair loss, very bad stomach problems, constipation, bad sinuses. I have had everything checked, from a thorough liver panel check, thyroid and literally every blood test under the sun. I have also been to an ENT, GASTROENTEROLOIST, DERMATOLOGIST and a TOXICOLOGIST ( who was rubbish, he said there is no way I am suffering vitamin A toxicity ). Everything is normal, I have also had my vitamin A blood test which was normal. My main problem that I don't get is why my cholesterol is very high and I simply cannot lose weight, I have gained a stone. I know most of you say you have lost weight and can't seem to put on weight, but mine is the opposite. All my hormones are normal. My diabetes and insulin blood test is also normal as is my thyroid. Please someone shed some light.

7 hours ago, sweetcapricorn said:

Hi. I am new here, my symptoms are blepharitis, hair loss, very bad stomach problems, constipation, bad sinuses. I have had everything checked, from a thorough liver panel check, thyroid and literally every blood test under the sun. I have also been to an ENT, GASTROENTEROLOIST, DERMATOLOGIST and a TOXICOLOGIST ( who was rubbish, he said there is no way I am suffering vitamin A toxicity ). Everything is normal, I have also had my vitamin A blood test which was normal. My main problem that I don't get is why my cholesterol is very high and I simply cannot lose weight, I have gained a stone. I know most of you say you have lost weight and can't seem to put on weight, but mine is the opposite. All my hormones are normal. My diabetes and insulin blood test is also normal as is my thyroid. Please someone shed some light.

Are you male/female? where are you from?

Please report your side effects immediately to MHRA and Roche.

Can you post your test results.
Doctors are always quick to dismiss results that may be within range but in fact are either very low or high.

Also state your dose and duration.

6 minutes ago, hatetane said:

Are you male/female? where are you from?

Please report your side effects immediately to MHRA and Roche.

Can you post your test results.
Doctors are always quick to dismiss results that may be within range but in fact are either very low or high.

Also state your dose and duration.

Hi, I'm female. I didn't actually Take accutane I used tretinoin on my legs for 9 months, it was for some pigmentation. I also used it on my face for 3 months. It was the tretinoin cream, but I'm still getting all the symptoms of vitamin A toxicity. I'm from the UK. It's been nearly 4 years since I stopped the cream.

Hi, for those who developed ED and who lost brain-penis connection, can you please test "Bulbocavernosus Reflex" please. I tested and is negative  
 

9 hours ago, MrErdem said:

Hi, for those who developed ED and who lost brain-penis connection, can you please test "Bulbocavernosus Reflex" please. I tested and is negative  
 

So your test was indicative of spinal cord, or other nerve, damage from Accutane?
What were your doctor's thoughts on this?

.
 

11 hours ago, Dubya_B said:

So your test was indicative of spinal cord, or other nerve, damage from Accutane?
What were your doctor's thoughts on this?

.

Hallo Dubya,
I checked it myself.
The method is not nice but everyone can test it by googling how to do it.
I have to say, second time I tried, I achieved, so I guess there is no spinal cord problem for me.
No doctor is involved.
I still suspect nerve damage though.

On 1/6/2016 at 4:18 PM, Mike San said:

Back in 08 (finish tane end 07), I developed congestion in ears and nose . Bloods showed very high total IgE...never followed up on that or did specific allergen testing , but I know I dont have allergies. I had to go on nasal steroids ...still on them.

Have you had IgE tests?

IGE Blood test. immunoglobulin E. This might be a good test, I remembered this post from awhile back. I could equate some people's symptoms as almost a skin burning from the inside out sort of similar to a allergy, which is also a exaggerated immune response.

Evaluation of patients with suspected diseases associated with elevations in total immunoglobulin E (IgE), including allergic disease, primary immunodeficiencies, infections, malignancies, or other inflammatory diseases

A person could also try a elemental diet to see if there is any type of food trigger.

@guitarman01 @Dubya_B @tanedout

First case of woman with CFS / ME with Stage 1 Liver Fibrosis (one out of two fibroscans so far)

1 hour ago, mariovitali said:

First case of woman with CFS / ME with Stage 1 Liver Fibrosis (one out of two fibroscans so far)

Did they recommend any treatment for this?

Interesting that retinoic acid in the skin interferes with sulfate being formed from sunlight.  Could it be that accutane was stored in the skin, but not in the blood/liver? could explain a lot of  the long term side effects.   google sulfate deficiency symptoms.

https://people.csail.mit.edu/seneff/2015/SeneffJune2_2015.pdf

This is where sun exposure enters the picture. When you expose your skin to sunshine, your skin synthesizes vitamin D3 sulfate. This form of vitamin D is water soluble, unlike oral vitamin D3 supplements, which is unsulfated. The water soluble form can travel freely in your blood stream, whereas the unsulfated form needs LDL (the so-called œbad cholesterol) as a vehicle of transport.

Her suspicion is that the simple oral non-sulfated form of vitamin D likely will not provide the same benefits as the vitamin D created in your skin from sun exposure, because it cannot be converted to vitamin D sulfate. This is yet another reason to really make a concerted effort to get ALL your vitamin D requirements from exposure to sunshine!

Sunlight although important is not a cure, I work outdoors in Aust receiving my share of sunlight!!

im more inclined currently to look into Microglial Activation.
Ive recently exhausted looking into gut and now want to concentrate on brain/hormone activity. It's where most of my problems reside so I'm now looking at that directly rather than thinking the gut or the liver are the key.

What to do next?? - I need some help/guidance from my doctor as I have no idea and I'm tired of self medicating with every supplement known to mankind.

Im still open to it all being down to systemic inflammation too....

6 hours ago, guitarman01 said:

7 hours ago, mariovitali said:

First case of woman with CFS / ME with Stage 1 Liver Fibrosis (one out of two fibroscans so far)

Did they recommend any treatment for this?

The woman will go to a hepatologist and get back to me.

23 hours ago, tryingtohelp2014 said:

Interesting that retinoic acid in the skin interferes with sulfate being formed from sunlight.  Could it be that accutane was stored in the skin, but not in the blood/liver? could explain a lot of  the long term side effects.   google sulfate deficiency symptoms.

https://people.csail.mit.edu/seneff/2015/SeneffJune2_2015.pdf

 

 

This is where sun exposure enters the picture. When you expose your skin to sunshine, your skin synthesizes vitamin D3 sulfate. This form of vitamin D is water soluble, unlike oral vitamin D3 supplements, which is unsulfated. The water soluble form can travel freely in your blood stream, whereas the unsulfated form needs LDL (the so-called œbad cholesterol) as a vehicle of transport.

Her suspicion is that the simple oral non-sulfated form of vitamin D likely will not provide the same benefits as the vitamin D created in your skin from sun exposure, because it cannot be converted to vitamin D sulfate. This is yet another reason to really make a concerted effort to get ALL your vitamin D requirements from exposure to sunshine!

 

Coincidentally, I just started taking a fairly high dose of organic sulfur (MSM) 2x/daily. I know that I and many others have taken this in the past but I never took it in higher doses. Do you remember anybody reporting trying this yet?

If we aren't able to synthesize sulfate naturally from the sun, maybe MSM could fill that gap. Theres testimony all over swearing that it helps all sorts of things. It's relatively cheap and I have nothing to lose, so I'll stick with it for a while.

Its supposed to be taken with vit C as well.

https://www.westonaprice.org/health-topics/abcs-of-nutrition/sulfur-deficiency/

6 hours ago, TrueJustice said:

Sunlight although important is not a cure, I work outdoors in Aust receiving my share of sunlight!!

im more inclined currently to look into Microglial Activation.
Ive recently exhausted looking into gut and now want to concentrate on brain/hormone activity. It's where most of my problems reside so I'm now looking at that directly rather than thinking the gut or the liver are the key.

What to do next?? - I need some help/guidance from my doctor as I have no idea and I'm tired of self medicating with every supplement known to mankind.

Im still open to it all being down to systemic inflammation too....

That's the point. No matter how much sunlight you get...due to the sebaceous glands being altered, you can't synthesize sulfate as much anymore.

MSM is sulfur...not sulfate?

chondroitin sulfate
Epsom salt baths?

6 hours ago, TrueJustice said:

Sunlight although important is not a cure, I work outdoors in Aust receiving my share of sunlight!!

im more inclined currently to look into Microglial Activation.
Ive recently exhausted looking into gut and now want to concentrate on brain/hormone activity. It's where most of my problems reside so I'm now looking at that directly rather than thinking the gut or the liver are the key.

What to do next?? - I need some help/guidance from my doctor as I have no idea and I'm tired of self medicating with every supplement known to mankind.

Im still open to it all being down to systemic inflammation too....

have you looked into LDN (low dose Naltrexone)? It's been very effective for me in reducing most of my post-'tane symptoms.

54 minutes ago, tryingtohelp2014 said:

That's the point.  No matter how much sunlight you get...due to the sebaceous glands being altered, you can't synthesize sulfate as much anymore.  

MSM is sulfur...not sulfate?

chondroitin sulfate
Epsom salt baths?

I take your point and perhaps you're spot on, how do we ever know though with Accutane? No test is ever conclusive - I've done the whole MSM thing, no change to light sensitivity or pressure in head. 

The only thing I'm yet to do is build up with supplements, like building up intake of Iodine which people do. I mean one could do that with Vit D too, remember those D reports which advocate to cure many things.
I don't really know how to do that without either wasting my time or further fucking up my health in the process. Could be just another dead end....

I want to believe you can get out of this shit with supplements but has there really been any success stories with this approach??

sorry "tryingtohelp" I just picked up on your previous correction - sulphate not sulphur......I didn't start that one

Anyone ever think of testing C-Reactive protein..?

17 hours ago, TrueJustice said:

im more inclined currently to look into Microglial Activation.
Ive recently exhausted looking into gut and now want to concentrate on brain/hormone activity. It's where most of my problems reside so I'm now looking at that directly rather than thinking the gut or the liver are the key.

What to do next?? - I need some help/guidance from my doctor as I have no idea and I'm tired of self medicating with every supplement known to mankind.

Its clear to me no local doctors or even specialist are going to figure this out. I've come closer to some truths playing the part of my own doctor and ordering or requesting my own tests. Alot of doctors dont have the time or concern for what we are dealing with, they are not going to put it together. You look at all these posts with undeniable relations and connections to accutane, this is what needs to be shown to the right doctors in a university or clinic setting. The doctors that are progressive with their research and more up on current studies.

Here is an example of how no local doctors are going to figure this out.

Immunosuppressive activity of 13-cis-retinoic acid

https://www.ncbi.nlm.nih.gov/pubmed/1918383
These data indicate that, in an in vivo mammalian system, 13-cRA exerts a suppressive activity on T cell-mediated immunity intensive enough to suppress an ongoing immune response

Eosinophilic GI Disorders (EGID) following Immunosuppression

Woman misdiagnosed with cerebral palsy gets cure after 33 years

For more than three decades, Abbott says she suffered from debilitating symptoms. "I could barely move my arms or legs to due to the countless hours of spasms, stiffness and cramping through out my body," she wrote on herblog. She underwent "countless doctors visits, medical procedures, unnecessary medications and surgeries."

In 2010, a new doctor recognized that her symptoms, which never quite fit with the classic signs of cerebral palsy, were actually caused by something else: a rare but treatable condition called dopa-responsive dystonia.

Temporal changes in gene expression in the skin of patients treated with isotretinoin provide insight into its mechanism of action

lipid metabolizing enzymes were downregulated.
serine proteases were upregulated.

These are random skin inflammatory markers.
Skin Levels of Inflammatory Mediators Histamine, Serine Proteases, Prostaglandin E2, Leukotriene B4 and Cathepsins in Patients

In conclusion, you think any local internal medicine doctor that mainly deals with controlling patientsblood pressure and cholesterolis going to figure this out? Hell no.

7 hours ago, guitarman01 said:

Its clear to me no local doctors or even specialist are going to figure this out. I've come closer to some truths playing the part of my own doctor and ordering or requesting my own tests. Alot of doctors dont have the time or concern for what we are dealing with, they are not going to put it together. You look at all these posts with undeniable relations and connections to accutane, this is what needs to be shown to the right doctors in a university or clinic setting. The doctors that are progressive with their research and more up on current studies.

Here is an example of how no local doctors are going to figure this out.

Immunosuppressive activity of 13-cis-retinoic acid

https://www.ncbi.nlm.nih.gov/pubmed/1918383
These data indicate that, in an in vivo mammalian system, 13-cRA exerts a suppressive activity on T cell-mediated immunity intensive enough to suppress an ongoing immune response

Eosinophilic GI Disorders (EGID) following Immunosuppression

Woman misdiagnosed with cerebral palsy gets cure after 33 years

For more than three decades, Abbott says she suffered from debilitating symptoms. "I could barely move my arms or legs to due to the countless hours of spasms, stiffness and cramping through out my body," she wrote on herblog. She underwent "countless doctors visits, medical procedures, unnecessary medications and surgeries."

In 2010, a new doctor recognized that her symptoms, which never quite fit with the classic signs of cerebral palsy, were actually caused by something else: a rare but treatable condition called dopa-responsive dystonia.

Temporal changes in gene expression in the skin of patients treated with isotretinoin provide insight into its mechanism of action

lipid metabolizing enzymes were downregulated.
serine proteases were upregulated.

This is random skin inflammatory markers.
Skin Levels of Inflammatory Mediators Histamine, Serine Proteases, Prostaglandin E2, Leukotriene B4 and Cathepsins in Patients

In conclusion, you think any local internal medicine doctor that mainly deals with controlling patientsblood pressure and cholesterolis going to figure this out? Hell no.

You're right, I don't know why after 20 years I still believe...

Let me ask, do you think the drug or drugs already exist that might help you out of this mess or do you think they still need to be made?

If they already exist, the only way to obtain them is via a doctor or specialist, correct me if I'm wrong.

Soooooo...... yet another interesting relation... 

Just realized these on the inside of my arms as I went outside to water the flowers 

Here's an email I've received. Those who are trying to spread information regarding Accutane, definitely contact them. Can't hurt.

Kynarr,

Retinoic acid suppresses intestinal mucus production and exacerbates experimental enterocolitis
http://dmm.biologists.org/content/5/4/457

vs.

Phosphatidylcholine (lecithin) and the mucus layer: Evidence of therapeutic efficacy in ulcerative colitis?

https://www.ncbi.nlm.nih.gov/pubmed/20926877