39 minutes ago, Jorcruz24 said:

Any suggestions on LDN? Im getting some from my naturopath provider on Thursday.

Main issues:
head pressure
muscle pain and fatigue
joint pain
IBS

have any of you found substantial and long term relief?

im quitting the antidepressant. Stopped working or probably never really did in the first place just a placebo.

Isn't LDN prescription? How can naturopath provide the real thing?

I don't know if someone mentioned but I read that high progesterone can impact on ED and libido.
Progesterone and DHT connect to receptors under the influence of 5ar. In balance DHT has priority in access to receptors but in high progesterone it looses the battle.
Last month I checked progesterone and I have 0.25 ng/ml (normally 0.05 - 0.149 ng/ml). I also have been waiting for DHT result.

http://www.littlemountainhomeopathy.com/accutane-for-acne-side-effects-worth-the-risk

Got results from MRI back, says i have a small pituitary microadenoma , doesn't really explain my low T, keeping an eye on it for now, and just testing for Cushings, which will prob come back negative, i don't have any of the listed symptoms. begin treatment with T next week, check on blood and hormone levels from there...assuming cushings come back negative, i'll have to take a steroid (dexamethasone) and get a blood test next morning. Apparently it lowers or raises cortisol levels which is the marker for the test. We shall see.

In the meantime I'm gonna tell everyone i have cancer and get pity sex from girls and free lunches from friends.

20 minutes ago, macleod said:

Got results from MRI back, says i have a small pituitary microadenoma , doesn't really explain my low T, keeping an eye on it for now, and just testing for Cushings, which will prob come back negative, i don't have any of the listed symptoms. begin treatment with T next week, check on blood and hormone levels from there...assuming cushings come back negative, i'll have to take a steroid (dexamethasone) and get a blood test next morning. Apparently it lowers or raises cortisol levels which is the marker for the test. We shall see.

What is your cortisol like? Mine is high, over 600nmol/L in the last 2 recent tests. T actually balances out cortisol apparently, so low T can be a factor in higher cortisol.

Cushings has a lot of physical symptoms like weight gain, but thin arms and legs, puffy face etc.

1 hour ago, tanedout said:

What is your cortisol like? Mine is high, over 600nmol/L in the last 2 recent tests. T actually balances out cortisol apparently, so low T can be a factor in higher cortisol.

Cushings has a lot of physical symptoms like weight gain, but thin arms and legs, puffy face etc.

Right. I actually thought my cortisol levels were low, because i've adapted a plant/fruit based diet, i take it pretty easy, and i run 25 miles per week. Turns out Doc actually thought they were on the high side this whole time but didn't say anything.

Wow, they actually were on this high side.

Cortisol 18.8 ug/dL
Cortisol AM 6.2 - 19.4
Cortisol PM 2.3 - 11.9

As far as the cushings symptoms, i don't feel i have any of them, so that's a relief.

Doc was like, you know sry you have had to deal with all this for some time, it may very well be a result of your Accutane. I was like Haha, no shit..

And please people don't rub your skin with anything for prolonged periods of time trust me on this one unless you want to have a heart attack our skin cell receptors are permanently @)(& up.

Well, I'm about to take this dexamethasone pill tonight. If what we have is some sort of auto immune or inflammatory condition i should feel better right? Let's find out.

2 hours ago, macleod said:

Well, I'm about to take this dexamethasone pill tonight. If what we have is some sort of auto immune or inflammatory condition i should feel better right? Let's find out.

You could very well not have something immune related. Keep us updated though!

On 15/08/2017 at 0:53 PM, guitarman01 said:

This could be that possiblelow grade
brain inflammation

Researchers have shown that lymphatic vessels extend into the brain.

https://www.nextbigfuture.com/2017/05/lymphatic-vessels-cleaning-system-for-the-brain-and-are-important-for-curing-alzheimers-ms-and-more.html

Researchers have identified two networks: the vessels that lead into and surround the brain, and those within the brain itself. The first is known as the lymphatic system for the brain, while the latter is called the glymphatic system. The g added to lymphatic refers to glia, the kind of neuron that makes up the lymphatic vessels in the brain. The glymphatic vessels carry cerebrospinal fluid and immune cells into the brain and remove cellular trash from it.

When the systems malfunction, the brain can become clogged with toxins and suffused with inflammatory immune cells. Over decades, this process may play a key role in Alzheimers disease, Huntingtons disease, Parkinsons disease and other neurodegenerative illnesses, research suggests. This is a revolutionary finding, Nedergaard says. This system plays a huge role in the health of the brain.

This is interesting!!!

Although when I investigate Lymphatic System it says people often get colds and tonsillitis- things that we never seem to get post tane!
It does mention things we do get like fatigue and joint pain etc but that doesn't necessarily mean our problem is with Lymphatic system!!?

Anyone experimented with Lymphatic supplements and gotten any result? good or bad...

I also learnt this week that the Liver is considered to be a "gland".....interesting considering our condition!!!?

This is the headline from that article I just posted

Lymphatic vessels cleaning system for the brain and are important for curing Alzheimers, MS and more

https://www.nextbigfuture.com/2017/05/lymphatic-vessels-cleaning-system-for-the-brain-and-are-important-for-curing-alzheimers-ms-and-more.html

This is from a entirely different article

Vitamin K2 Deficiency May Have Role in Neurological Diseases Including Parkinsons, Alzheimers, and Multiple Sclerosis

https://emediahealth.com/2012/06/03/vitamin-k2-deficiency-may-have-role-in-neurological-diseases-including-parkinsons-alzheimers-and-multiple-sclerosis/

This is k2 greatly reducing non-hodgkin's lymphoma risk
https://www.xbrain.co.uk/how-vitamin-k2mk-4-benefits-your-body
Vitamin K2 has shown some evidences (published in internationally renowned scientific journals) that it can reduce the risk of some types of cancers and also shown a thirty percent lower risk of dying from cancer. National Cancer Institute studies showed that vitamin K2 might help reduce the risk of non-Hodgkin lymphomas (NHLs). Non-Hodgkin lymphoma is a cancer that starts in cells called lymphocytes. Lymphocytes are found in the blood and are part of the immune system of the body. People taking high amounts of K2 have shown 45% lower risk of this type of cancer as compared to control group (people the taking less amount of K2). This lower risk is attributed to vitamin K2 role of inhibiting inflammatory cytokines related to this type of cancer.

Chronic inflammation can lead to cancer.

On 8/13/2017 at 2:02 PM, tanedout said:

loads of people have all the symptoms from a single pill (for me I just took 10mg for 30 days)

if there was any type of gut modulating or antibiotic effect that was of a different type or more potent (being accutane), to put in in perspective a full zpack course is just 5 days. let's look at doxy, one of the side effects is increased intercranial hypertension. Tinnitus is another side effect of some antibiotics. All you need is one pill of doxy to treat early lyme disease. (bullseye rash)

On 8/13/2017 at 2:02 PM, tanedout said:

My gastrointestinal tests showed similar results with regards to gut flora - my lactobacillus and beneficial e.coli species show no growth. This also ties in with about 15-20 PFS guys who have had this test run, and showed similar trends.

Regardless of the probiotic im looking at k2 or menaquinones as the possible missing link in all of these gut protocols. Im still experimenting with different types and brands myself atm.

@guitarman01@tanedout

Sorry for not being around guys, just wanted to post some latest updates :

- I am in talks with Stanford, they are willing to listen the hypothesis and discuss some of the findings. Fingers crossed this happens.

-Please have a look at the following post :

[removed]

I would easily say that the following paper should be read by everyone here :

http://www.journal-of-hepatology.eu/article/S0168-8278(15)00299-8/pdf

Note the entries on Drug-Induced Liver Injury, Mitochondria, ER Stress, Unfolded Protein response

It is great that CFS people begin to understand a possible connection between Accutane and CFS :

Quote

My illness began after using Accutane for 6 weeks when I was 18 years old. Accutane is associated with autoimmune illnesses including Crohn's and IBD, as well as changes in DNA transcription and methylation patterns in T-cells. The latter can be long lasting. (R) Epigenetics is a burgeoning field with many autoimmune diseases expressing similar patterns in epigenetic control mechanisms e.g. DNA methylation, histone acetylation, miRNA. (R) For example, drug induced lupus and systemic lupus erythematosus express an identical DNA methylation pattern with no significant genetic difference to controls. But the former disappears as soon as the offending drug is discontinued. This is an important thread to unravel.

http://forums.phoenixrising.me/index.php?threads/rituximab-for-mcs-and-cfs.53154/

@guitarman01

Did you have a Fibroscan/Liver Elastograpy by any chance?

Anyone else here had this test?

The proof would be in the pudding with Vit K though wouldn't it?

I haven't felt anything change whilst being on it? Has anyone felt or noticed anything whilst supplementing Vit K?

Its definitely worth pursuing and staying on it for a good period to really see if it does change anything but currently I'm just as fatigued as I've ever been unfortunately

So, the dexamethasone was ok. Granted it was only 1mg, but after an hour I felt my bowels relax a bit and make a few noises, my tendonitis remained, but the inflammation was decreased, rotator cuff still popped and joints still crack but little to no pain. I also have a hip flexor issue from running and the pain was reduced and I was able to stretch out more. No noticeable effects on my tinnitus, depression, or vision.

final thoughts: good drug for inflammation

1 hour ago, macleod said:

So, the dexamethasone was ok. Granted it was only 1mg, but after an hour I felt my bowels relax a bit and make a few noises, my tendonitis remained, but the inflammation was decreased, rotator cuff still popped and joints still crack but little to no pain. I also have a hip flexor issue from running and the pain was reduced and I was able to stretch out more. No noticeable effects on my tinnitus, depression, or vision.

final thoughts: good drug for inflammation

Great to hear! But definitely agree on the effects not being super strong on such a low dose. Now you know that maybe even slightly higher doses could help other things.

53 minutes ago, Colinboko said:

2 hours ago, macleod said:

 

Great to hear! But definitely agree on the effects not being super strong on such a low dose. Now you know that maybe even slightly higher doses could help other things.

It's very possible. I wouldn't mind trying out 2mg for a week or so.

1 hour ago, macleod said:

It's very possible. I wouldn't mind trying out 2mg for a week or so.

Just remember ehohel was started on a 60mg taper when his depression/brain fog/sleep all cleared up. But I've heard of CFS sufferers having all that clear up on 10mg

/topic/184944-permanent-back-bone-or-muscle-pain-after-accutane/?do=embed">

I had to take break so much stress
my MRI was fine. But said they did brain and not specific to pituatry so need new one
the hormones fine t levels were high
ana is positive speckled again
idk if I have sjorgens or lupus
my anxiety depression OCD bdd can't be treated with meds

my questions are this
i may never find answers 
the dry eyes and nose mouth get worse with meds

so

the flushing and rosacea like skin
has anyone fixed that?

i guess I can deal with the other shit
but will v beam and lasers work for red skin?

dont mind me looking ghastly white in summer
im
hlusebound Ron he anxiety of this rash
it gets worse heat sex masturbating lifting
it's either Rosacea or lupus
since Ana is high 
it's very flaky on nose and beard area to do maybe seb derm

does anything work?
i it out dairy gluten wheat low sugar 10 months now

I've had v beam once and it left white marks on side
so maybe it heloed
the flushing anxiety wise beta blockers do help and ssri kind of
but not an option 

feel pike my epidermis is ruined
any suggestions?
im ode to giving up on answers so next step is lasers 

sexond pic is few years ago I scrapped it and was summer 

On 17/08/2017 at 4:50 PM, mariovitali said:

@guitarman01@tanedout

Sorry for not being around guys, just wanted to post some latest updates :

- I am in talks with Stanford, they are willing to listen the hypothesis and discuss some of the findings. Fingers crossed this happens.

-Please have a look at the following post :

http://algogenomics.blogspot.com./2017/08/dili-viruses-and-er-stress.html

I would easily say that the following paper should be read by everyone here :

http://www.journal-of-hepatology.eu/article/S0168-8278(15)00299-8/pdf

Note the entries on Drug-Induced Liver Injury, Mitochondria, ER Stress, Unfolded Protein response

It is great that CFS people begin to understand a possible connection between Accutane and CFS :

http://forums.phoenixrising.me/index.php?threads/rituximab-for-mcs-and-cfs.53154/

@guitarman01

Did you have a Fibroscan/Liver Elastograpy by any chance?

Anyone else here had this test?

Thanks for posting but I don't do well reading science papers, please just some it all up in layman terms.

Im getting that there could be liver injury after Accutane, how do we know, what tests conclude this??

All I know is I have a fatty liver, so what, what other tests should one do other than an ultrasound??

Also, I read quiet often that the liver has an incredible capacity to heal itself, why doesn't ours do that after tane?

6 hours ago, Nemesisbrady said:

I had to take break so much stress
my MRI was fine. But said they did brain and not specific to pituatry so need new one
the hormones fine t levels were high
ana is positive speckled again
idk if I have sjorgens or lupus
my anxiety depression OCD bdd can't be treated with meds

my questions are this
i may never find answers 
the dry eyes and nose mouth get worse with meds

so

the flushing and rosacea like skin
has anyone fixed that?

i guess I can deal with the other shit
but will v beam and lasers work for red skin?

dont mind me looking ghastly white in summer
im
hlusebound Ron he anxiety of this rash
it gets worse heat sex masturbating lifting
it's either Rosacea or lupus
since Ana is high 
it's very flaky on nose and beard area to do maybe seb derm

does anything work?
i it out dairy gluten wheat low sugar 10 months now

I've had v beam once and it left white marks on side
so maybe it heloed
the flushing anxiety wise beta blockers do help and ssri kind of
but not an option 

feel pike my epidermis is ruined
any suggestions?
im ode to giving up on answers so next step is lasers 

sexond pic is few years ago I scrapped it and was summer 

Pretty much got the same issue as me Brady - and my skin produces none of its own oil so i believe my redness is a result of extreme dryness rather than rosacea. 

I'm currently applying prescribed metrogel, using emollient creams day and night, taking Liv.52 supplement, lifting and taking creatine, I don't know which of those is helping but it's a lot better than it has been for the last 4 years. It is nowhere near gone and nowhere near normal, but with a little powder to reduce the redness (depressing as f**k being a man) I am feeling more confident and can maintain more eye contact during conversation now. 

Thank u
yea sadly my skin doesn't produce oil at all
two courses of tane and smooth beam killed that
metrogel made me look paler than ever when I used it....or it was finacea gel maybe diff? Never heard of liv supplement I'll look into it
creatine prob can't take...and I don't do any excercise so I need to start doing that
this just sucks
i took accutane to fit in with clear skin ppl
and now I'm secluded for a decade since it
anyone else experience hardcore insomnia
and waking up every two hours on the dot
and with meds maybe 4 hours straight
eye balls stuck together mucus crust
and swollen dark bags under eyes??

glad u an have confidence and look them in he eyes with that
sadly my eye bags are another thing messing with me

Am I the only one who can't do anything from this drug?
i have histamine hive issues I can't treat because I'm extremely dry
i can't treat depression anxiety SLEE issues
with meds because they cause Moreno issues dryness and sleep issues
can't treat the flushing attacks with meds
lasers seem to be s coin toss
I can't remove my eye bags because dry eye complication
i can't sleep with all this on my mind and no meds and that ain't gunna help bags
i can't gain weight when I eat a strict diet that I barely even want to eat
ocd bdd mental shit no therapy treatment
i can't wash face just water irritates it
can't shave
cant stand heat sun

like I legit feel like I'm in hell
im lose to ending this bs
i hate what this drug did

i ant even get skin diagnosis or treatment
csnt get an answer for Ana speckled again
sjorgens like symptoms for a decade
so I'm forced to be pretty much vegan housebound mental with skin issues and health
fuckin sorry
but this is the worst
i see heroin addicts living a better life

22 minutes ago, Nemesisbrady said:

Am I the only one who can't do anything from this drug?
i have histamine hive issues I can't treat because I'm extremely dry
i can't treat depression anxiety SLEE issues
with meds because they cause Moreno issues dryness and sleep issues
can't treat the flushing attacks with meds
lasers seem to be s coin toss
I can't remove my eye bags because dry eye complication
i can't sleep with all this on my mind and no meds and that ain't gunna help bags
i can't gain weight when I eat a strict diet that I barely even want to eat
ocd bdd mental shit no therapy treatment
i can't wash face just water irritates it
can't shave
cant stand heat sun

like I legit feel like I'm in hell
im lose to ending this bs
i hate what this drug did

i ant even get skin diagnosis or treatment
csnt get an answer for Ana speckled again
sjorgens like symptoms for a decade
so I'm forced to be pretty much vegan housebound mental with skin issues and health
fuckin sorry
but this is the worst
i see heroin addicts living a better life

When talking to doctors, I've found it helps to just leave accutane out. The second you shoot straight to accutane, it's easier for a doctor to say "Ok, you're a hypochondriac" and then they send you on your way and deny tests/further investigation. Use EVERY visible symptom you have. They unfortunately always want visible.. for me it was my vocal cord. Doctors cannot deny stuff like that. I'm very fortunate to have fantastic insurance so I'm sure it's easier for me than some.. but you can get help. Taking your life should never be the option.

I know right!? Why is that the case? It's really annoying. We all notice the same pattern for doctors to immediately assume some sort of post-hoc fallacy and refer to a psychiatrist, rather than attempt to treat the underlying cause(s), where or what went wrong with our "treatment". It's almost as if there is a textbook instructional that they are following.

It's starting to get on my nerves. It's like, "I understand you have a nice cozy suburban practice, which I'm in no means trying to jeopardize, but why did you become a doctor in the first place? Why not a lawyer? Are you a doctor for the insurance and pharmaceutical companies? Or are you a doctor for the people?"

laziness and cowardice on all of the doctors and scientists involved with this drug.