20 hours ago, TrueJustice said:

And if there is a problem, where does it reside?? More to do with Bile & Liveror is it our screwed up gut health that cant properly deal with these fats....or both??

 

Both is my bet. Hence why fasting, entering a state of ketosis to allow authophagy to repair the liver seems to work well.

I think we should all really attempt prolonged fasting for 5+ days. Its literally the easiest thing we can do.

27 minutes ago, whackutane said:

Both is my bet. Hence why fasting, entering a state of ketosis to allow authophagy to repair the liver seems to work well.

I think we should all really attempt prolonged fasting for 5+ days. Its literally the easiest thing we can do.

 

I also think we should attempt longer fasting.

From todays kinesiology session, certain foods are still stressing me out:

Gluten,Glyphosate, soy, eggs, potatoes, lactose

They say critical to get away from these foods for 3 weeks. Fasting is ok but even if I did a week of itand went and atethese foods its not enough time to heal - guess Im slowly learning what foods are stressing my body out, even though I enjoy eating them.

Can go back on them eventually just that right now they are effecting everything from thyroid to liver function- these organs will operate better once theyve had a chance to clear apparently

Brought in some Iodine and apparently its stressing me tooso no need to take it.

Also took in some Vit E and its also stressing me. Noissue with D and A has been corrected in a previous session

As with all sessions, they keep saying underlying issue is Gut, Gut, Gut health!!!

Absolutely not suggesting not to fast here,infact fasting is in line with avoiding foods if nothing else - the question is which foods are you ok to eat after a fast??thats really the question we need to know. If you come back too quickly on to certain foods youll have undone all the good work.

When mykinesiologist says come off them all, she means everything- not just the gluten and the dairy but not touching a potato for 3 weeks or eggs.

Note - these are only my intolerances, someone else will be different again.

She says one slip up of eating wrong food and youre back to square one and need to start over. She says there can be exceptions but 99 percent of people need to be this strict to seeimprovements.

8 hours ago, TrueJustice said:

From todays kinesiology session, certain foods are still stressing me out:

Gluten,Glyphosate, soy, eggs, potatoes, lactose

They say critical to get away from these foods for 3 weeks. Fasting is ok but even if I did a week of itand went and atethese foods its not enough time to heal - guess Im slowly learning what foods are stressing my body out, even though I enjoy eating them.

Can go back on them eventually just that right now they are effecting everything from thyroid to liver function- these organs will operate better once theyve had a chance to clear apparently

Brought in some Iodine and apparently its stressing me tooso no need to take it.

Also took in some Vit E and its also stressing me. Noissue with D and A has been corrected in a previous session

As with all sessions, they keep saying underlying issue is Gut, Gut, Gut health!!!

Absolutely not suggesting not to fast here,infact fasting is in line with avoiding foods if nothing else - the question is which foods are you ok to eat after a fast??thats really the question we need to know. If you come back too quickly on to certain foods youll have undone all the good work.

When mykinesiologist says come off them all, she means everything- not just the gluten and the dairy but not touching a potato for 3 weeks or eggs.

Note - these are only my intolerances, someone else will be different again.

She says one slip up of eating wrong food and youre back to square one and need to start over. She says there can be exceptions but 99 percent of people need to be this strict to seeimprovements.

I have all the same intolerances as you. I'd fast 16hr then eat and feel back to square one with sides and stuff.

I found out that bottled water works better for me. But a friend of mine said that tap water has some minerals that bottled water doesn't have so you'll get sick if you live on bottled water.

I'm OK with cucumber, lettuce, cabbage, carrots, blueberries, broccoli so far. Then chicken, steak, fish makes me a little dizzy. Avocados also stresses me out but not much.

On 1/21/2019 at 7:23 PM, Francisco..Blanquez said:

I have problems about thyroids, I'm a bit over the range, not having iodine but....maybe I should. 

It may be something usual because I remember that when I was having roacutane..my doctor used to test my thyroids. 

 

 

Have you considered the iodine protocol?

Just a reminder and something for the newbies to consider - I am going to keep bumping!

https://www.dailymail.co.uk/health/article-6431453/Thousands-prescribed-Roaccutane-theres-disturbing-evidence-leave-men-suicidal.html

https://www.ema.europa.eu/documents/psusa/isotretinoin-oral-formulations-cmdh-scientific-conclusions-grounds-variation-amendments-product/00010488/201611_en.pdf

Does anyone want to report their side effects and need links?

Also I received this today - We have to make sure that Post Accutane Syndrome is recognised so that we can't get help looking for cures.

I received this from the PFS today:

Earlier this week, Le Monde”the nation™s second-largest newspaper, with a daily circulation more than 300,000 copies”ran a story headlined, When Fighting Hair Loss, Watch out for Finasteride. (English translationhere.)   The 1,170-word report, by Pascale Santi, begins:   œRomain Mathieu killed himself on June 7, 2016. He was 25 years old and suffering from depression. At just 19, while a student doing advanced college-prep work, he began taking Propecia¦ After Romain™s death, his mother,Sylviane Millon-­Mathieu, created an association called Aide aux Victimes du Finast©ride (Helping Victims of Finasteride).   The story, which quotes Sylviane as saying, œSexual, psychological and physical side effects persist almost systematically when [finasteride] treatment is stopped, later explains that AVFIN œis asking that the medication be pulled from the market.   Quoted as well is Jean-­Luc Schmutz, head of the dermatology unit at the Regional University Hospital Center in Nancy, France, who™s also among our global team of volunteermedical professionals offering support to PFS patients.

Capping off the report is a quote from ANSM epidemiologist Caroline Semaille.   œDoctors and pharmacists must inform patients about medications, but the patients must take charge of their own health, looking not just at social media, but also reading the product inserts and searching public databases for information, she says.   This of course isn™t the first time Dr. Semaille has issued public-awareness messages about finasteride.   In November 2017, she told Le Parisien: œANSM has also looked closely at reports of adverse reactions to finasteride in France. There have been 40 such reports in nearly 20 years. And those numbers are not taken lightly. We know [these adverse drug reactions] are undervalued, because France does not have much pharmacovigilance reflex. And, worldwide, 508 serious psychiatric cases, including 25 suicides, have been identified.   œFrom now on, you're informed. So you decide.   Eight months later, France™s No. 1 news magazine, L™Obs, ran a feature story titledFinasteride, the Controversial Drug that Medical Authorities Continue to Defend (English translation here).   œThirty-thousand men in France”and millions around the world”take [finasteride] every day, the magazine noted.   œHealth authorities are only formally linking it to issues of a sexual nature... What about the range of psychiatric, cognitive and physical side effects that victims call ˜post-finasteride syndrome™?   If you or a loved one are suffering from PFS, and feeling depressed or unstable, please don™t hesitate to contact us as soon as possible via our Patient Support hotline:[email protected]   Thank you.

On 1/22/2019 at 8:17 PM, GeRalt said:

hey guys,

I just wanted to ask how do you stay alive and not commit suicide? why even live?

ive lost everything to this drug... my career which barely started, my mental clarity, my emotions, my sex life and the ability to do sports.

I know that my life will never be the same again, so why bother?

im really considering to end my life. I just cant seem to pick myself back up and live.

all i do is suffer. AD dont help, I was in a mental facility as well..

 

I often ask myself this same question too. Will there ever be an end to this misery. It's been nearly 20 years of a pretty messed-up life that I would rather have not dealt with.

As @hatetane posted above, there is currently ongoing research into post-finasteride syndrome that will uncover the cause and potential treatment. This is slow-going, but there is a very good chance it will translate into a way to help those of us who have taken Accutane and been left with PFS-like symptoms, like horrible depression and sexual dysfunction.

Hang in there.

1 hour ago, Dubya_B said:

I often ask myself this same question too. Will there ever be an end to this misery. It's been nearly 20 years of a pretty messed-up life that I would rather have not dealt with.

As @hatetane posted above, there is currently ongoing research into post-finasteride syndrome that will uncover the cause and potential treatment. This is slow-going, but there is a very good chance it will translate into a way to help those of us who have taken Accutane and been left with PFS-like symptoms, like horrible depression and sexual dysfunction.

 

Hang in there.

Hey Dubya, I would be lying if I said that I am not putting my hopes in the PFS foundation to find a cure that would also work for us but I would be even more hopeful if we were to get our own foundation one day.

You have probably shouted the longest and the hardest to get people to reporttheirside effects. We simplywon't get anywhere unless they do. If you look at the data it would seem that the sexual sides are really really rare but we know they are not. Everyone needs to understand that the regulators cannot guess at the numbers they need cold hard facts.

Have a word please!!

On 1/18/2019 at 10:41 PM, User2 said:

Calcified - I also get a form of post Accutane scalp breakouts. I never had this problem before Accutane. It seems Accutane changed the way my body reacts to certain foods. I think eating hemp hearts helps a little. It may be worth trying. They are very high in Manganese and Magnesium and high in phosphorus, zinc, iron and thiamine. Perhaps it is one or more of these vitamin and minerals that helps. I would be interested to know if it helps you. I am also now using a dandruff shampoo and I think it helps a little too.

On 1/19/2019 at 2:29 AM, Calcified said:

I do find some vitamins help with scalp, I do find less breakouts with b12, but sometimes a vitamin works initially then it starts coming back again, like shampoos they start off helping them somehow it gets worse. Have you tried no shampoo, that actually helps too. I have had swabs taken and the results are zero. No bacteria, fungi etc. I do understand when you say you feel better on antibiotics, maybe it's the anti inflammatory properties.

I also got that scalp, two or three red spot on my head... 25 years ago. It is psoriasis, it developed though years, bigger spots, nails...it go inside finger and toes and become arthritis. ... I have try almost everything. The only thing that has stoped its progress is the gluten and sugar free diet.

Pure turpentine from pine(mixed with coconut oil) is very good too

4 hours ago, Francisco..Blanquez said:

 

I also got that scalp, two or three red spot on my head... 25 years ago. It is psoriasis, it developed though years, bigger spots, nails...it go inside finger and toes and become arthritis. ... I have try almost everything. The only thing that has stoped its progress is the gluten and sugar free diet.

Pure turpentine from pine(mixed with coconut oil) is very good too

Dose of retinoic acid is so high and for so long the receptors adapt?

Which comes back to whole vitamin a metabolism theory.

We know we have normal retinal blood serum levels but is that now converting to retinoic acid?

Does alot of beta carotene get excreted now?

As it shows some people go down hill after tane, not just while on it.

Am I the only one thinking this?

34 minutes ago, Calcified said:

Dose of retinoic acid is so high and for so long the receptors adapt?

Which comes back to whole vitamin a metabolism theory.

We know we have normal retinal blood serum levels but is that now converting to retinoic acid?

Does alot of beta carotene get excreted now?

As it shows some people go down hill after tane, not just while on it.

Am I the only one thinking this?

What are you thinking, that we are now intolerant to vitamin A?

2 hours ago, gutskinaxis said:

What are you thinking, that we are now intolerant to vitamin A?

Possibly not intolerant just changed.

I don't think it's still in our system at all.

People get diseases after tane that tanes supposed to treat. Psoriasis etc.

I may be wrong and im not an expert, maybe someone can prove this theory wrong?

1 hour ago, Calcified said:

Possibly not intolerant just changed.

I don't think it's still in our system at all.

People get diseases after tane that tanes supposed to treat. Psoriasis etc.

I may be wrong and im not an expert, maybe someone can prove this theory wrong?

I think in the process of killing these sebum producing cells, the retinoid acid kills some immune cells and/or changes their function

I think this causes the body to have uncontrolled immune system activation

One of the only ways to fix it for now is reduce inflammation as much as possible

35 minutes ago, gutskinaxis said:

I think in the process of killing these sebum producing cells, the retinoid acid kills some immune cells and/or changes their function

I think this causes the body to have uncontrolled immune system activation

One of the only ways to fix it for now is reduce inflammation as much as possible

Totally agree!!

Someone said it years ago - if you could fix the inflammation, wed have a fighting chance of fixing all the other things that are wrong with us.But first and foremost fix the inflammation.....

Cant necessary go on anti inflammatory drugs long term as theyll only have their own side effects.

Aside from getting off certain foods that cause inflammation, I can only think of taking Curcumin everyday - that might help with about a5 percent improvement perhaps

Or try fasting....

FYI - NT Factor after 3 weeks isnt providing any realrelief, just another $100 purchase. Ill continue with it but just thought Id state nothing noticeable from taking it. Although I recently got sick which as we know is a rarity after Tane - could be coincidental or perhaps NT has changed my gut health ever so slightly....couldnt say for sure

7 hours ago, gutskinaxis said:

I think in the process of killing these sebum producing cells, the retinoid acid kills some immune cells and/or changes their function

I think this causes the body to have uncontrolled immune system activation

One of the only ways to fix it for now is reduce inflammation as much as possible.

Possibly.

6 hours ago, TrueJustice said:

Totally agree!!

Someone said it years ago - if you could fix the inflammation, wed have a fighting chance of fixing all the other things that are wrong with us.But first and foremost fix the inflammation.....

Cant necessary go on anti inflammatory drugs long term as theyll only have their own side effects.

Aside from getting off certain foods that cause inflammation, I can only think of taking Curcumin everyday - that might help with about a5 percent improvement perhaps

Or try fasting....

FYI - NT Factor after 3 weeks isnt providing any realrelief, just another $100 purchase. Ill continue with it but just thought Id state nothing noticeable from taking it. Although I recently got sick which as we know is a rarity after Tane - could be coincidental or perhaps NT has changed my gut health ever so slightly....couldnt say for sure

Yeah I take anti inflammatory drugs and provides slight relief. Joint pain so bad sometimes it's just better than nothing or you hope it's helping.

17 hours ago, Francisco..Blanquez said:

 

I also got that scalp, two or three red spot on my head... 25 years ago. It is psoriasis, it developed though years, bigger spots, nails...it go inside finger and toes and become arthritis. ... I have try almost everything. The only thing that has stoped its progress is the gluten and sugar free diet.

Pure turpentine from pine(mixed with coconut oil) is very good too

Francisco do you have elevated esr or CRP , or hlab27 positive antigen? as I'm neg for hlab27 and relatively normal esr, CRP. Yet I have pretty bad multi level facet joint arthritis.

8 hours ago, Calcified said:

Francisco do you have elevated esr or CRP , or hlab27 positive antigen? as I'm neg for hlab27 and relatively normal esr, CRP. Yet I have pretty bad multi level facet joint arthritis.

I've heard really good things about all meat diet for arthritis...

Either way I would try going low dairy, low carb, low FODMAP to try to reduce inflammation

5 hours ago, gutskinaxis said:

I've heard really good things about all meat diet for arthritis...

Either way I would try going low dairy, low carb, low FODMAP to try to reduce inflammation

I have never been big on dairy or carbs, probably a subconscious thing our bodies do.

I do think the liver is involved.

Would be interesting to find out if cortisol binding globulin has some involvement.

On 1/27/2019 at 2:47 PM, Calcified said:

Francisco do you have elevated esr or CRP , or hlab27 positive antigen? as I'm neg for hlab27 and relatively normal esr, CRP. Yet I have pretty bad multi level facet joint arthritis.

I don't know what is it. Celiac disease is not easy to detect, you have to do lots of test or have a look inside your intestine. .... in the end the more easy and reliables test is going on a free gluten diet and see how you feel.... I feel very good about pain now.

On 1/27/2019 at 7:02 AM, TrueJustice said:

Totally agree!!

Someone said it years ago - if you could fix the inflammation, wed have a fighting chance of fixing all the other things that are wrong with us.But first and foremost fix the inflammation.....

Cant necessary go on anti inflammatory drugs long term as theyll only have their own side effects.

Aside from getting off certain foods that cause inflammation, I can only think of taking Curcumin everyday - that might help with about a5 percent improvement perhaps

Or try fasting....

FYI - NT Factor after 3 weeks isnt providing any realrelief, just another $100 purchase. Ill continue with it but just thought Id state nothing noticeable from taking it. Although I recently got sick which as we know is a rarity after Tane - could be coincidental or perhaps NT has changed my gut health ever so slightly....couldnt say for sure

Yes, every 3 month my doctor test me about two inflamatory parameters PCR and VSG. I could control pcr using chucrut. I normaly make chucrut at home which is fermented red cabbage. This fermented food is a super food and red cabbage contains L-glutamine ....read about it, theintestine need it.

VSG my level is around 20... but last year I got one test around 10 which is quite good. I was doing a free gluten and sugar diet....

So that is on what Im focused, need more tests to confirm that this diet can control inflamation, this week another one.

On 1/27/2019 at 5:47 PM, Calcified said:

Francisco do you have elevated esr or CRP , or hlab27 positive antigen? as I'm neg for hlab27 and relatively normal esr, CRP. Yet I have pretty bad multi level facet joint arthritis.

Do your joints crack/snap/pop as well, or is it just pain?Were you diagnosed with rheumatoid arthritis without the rheumatoid factor?

10 hours ago, Francisco..Blanquez said:

Yes, every 3 month my doctor test me about two inflamatory parameters PCR and VSG. I could control pcr using chucrut. I normaly make chucrut at home which is fermented red cabbage. This fermented food is a super food and red cabbage contains L-glutamine ....read about it, theintestine need it.

VSG my level is around 20... but last year I got one test around 10 which is quite good. I was doing a free gluten and sugar diet....

So that is on what Im focused, need more tests to confirm that this diet can control inflamation, this week another one.

My highest has Esr 19 only slightly over range, i think some people with inflammatory arthritis Goto 100, my CRP is always normal.

5 hours ago, Mabbbs said:

Do your joints crack/snap/pop as well, or is it just pain?Were you diagnosed with rheumatoid arthritis without the rheumatoid factor?

Yeah my back cracks easy and with pain muscles knot. I don't have rheumatoid or rheumatoid factor. I did have some back issues before Tane but I was ok until about 2-3 years after tane, my diagnoses is basically alot of degeneration.

I noticed you have hip issues, did they check for sacroiliitis? I had a ct scan that said that yet my MRI was negative. I have bilateral tendon calcification at the insurtion to feet and knees which has doc's and me confused.

On 1/26/2019 at 3:01 PM, Francisco..Blanquez said:

 

I also got that scalp, two or three red spot on my head... 25 years ago. It is psoriasis, it developed though years, bigger spots, nails...it go inside finger and toes and become arthritis. ... I have try almost everything. The only thing that has stoped its progress is the gluten and sugar free diet.

Pure turpentine from pine(mixed with coconut oil) is very good too

I could be wrong but judging from photos online, I don't think the scalpbreakouts I get is psoriasis. Mine are more like a sort of acnebreakout that come and go. I suspect certain food trigger it but have not identified the foods - although I suspect certain chocolates. I am pretty sure hemp hearts help me a little.

On 1/23/2019 at 9:30 AM, hatetane said:

[Edited link out]

Have you considered the iodine protocol?

I have experiencedsimilar social anxiety. For me, if it happens, it is oftenwhile at a grocery checkout with a line of people behind me. I can feel it coming on and always attempt to fight it by thinking to myself everything will be just fine. Sometime I win, sometimes I lose. I don't seem to get the same anger you experience. When I "lose" I simply feel uneasy and feel a flushing/blushing sensation in my face and then once I leave I am fine (well my post accurate fine). It is an odd thing. I don't really know why it happens. I sometimes get a little frustrated with myself that I let it happen. I wonder if caffeine may have something to do with it as I'm not a regular consumer of it. It feels like my nerves are overstimulated. I think regular exercise does help somewhat.

17 hours ago, Calcified said:

My highest has Esr 19 only slightly over range, i think some people with inflammatory arthritis Goto 100, my CRP is always normal.

 

Yeah my back cracks easy and with pain muscles knot. I don't have rheumatoid or rheumatoid factor. I did have some back issues before Tane but I was ok until about 2-3 years after tane, my diagnoses is basically alot of degeneration.

I noticed you have hip issues, did they check for sacroiliitis? I had a ct scan that said that yet my MRI was negative. I have bilateral tendon calcification at the insurtion to feet and knees which has doc's and me confused.

 

I did an MRIfor my hip, came back negative (other than minimal effusion which I dont thinkissignificant or at least according to the doc ). Im honestly worried about doing CT scans due to their potentialdangers. I had my first one today (abdominal CT), and it was a terrible experience; I had issues with backflow and side effects post-scan due to the contrast Still waiting for those results. The X-ray for my left shoulder shows aninferior clavicular spur. (And thats from three years ago...). I also did anX-raythree years ago for my hip and it came back normal, I repeated it around the end of last year and it showed a mild crossover sign and subarticular sclerosis in the left sacrolitic joint, even though the right joint is whats causing me the most trouble. The x-ray for my lumbar spine also shows mild sclerosis in the left sacrolitic joint. The x-ray for my knees show patellar maltracking which I didnt talk to the doctor about yet.Regarding the spur in my shoulder,the doctor overlooked it and I dont know if I should go back to do more x-rays or other testsbecause I feel like Im just exposing myself to radiation and harming myself without anything in return. Curious, how old were you when you took Accutane? And how long has it been since then?

5 hours ago, User2 said:

I could be wrong but judging from photos online, I don't think the scalpbreakouts I get is psoriasis. Mine are more like a sort of acnebreakout that come and go. I suspect certain food trigger it but have not identified the foods - although I suspect certain chocolates. I am pretty sure hemp hearts help me a little.

A B12 injections has improved mine. Better results than B12 tablets. No a cure but definitely has improved. Might want to talk to your doc about it.