Am having a really good day today guys. Don't know why, haven't changed a thing, and am barley even taking any supps/meds and nothing that hasn't been tried before anyway. I'm happy and not depressed and with little anhedonia, little pains, clear head, etc. Days like this give me hope. Cautious hope, cautious optimism, but it is nice to know that in the waxing and waning of my symptoms that sometimes the cycle comes to a very good day.

On 3/31/2018 at 4:44 AM, Colinboko said:

@guitarman01Can you post your AChR Ganglionic results again?

Im calling my neurologist today with hopes that since Im insured by Quest diagnostics that she can just test me for shits and giggles.

Is this the correct test?

http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=93881&labCode=AMD

Yes. although the test I took was this one[Edited link out], But it would probably be easier just getting the one antibody tested.
Its also the only antibody I tested positive for from that panel.
I left the only copy I had of this test result with a dr by accident and im not able to look at the scan online.
Im going to check if they can fix that or I will get another copy.
Id also make a stronger case for getting this test then just shits and giggles.
Im going to mention testing this antibody to the researchers and doctors conducting the PFS studies when I get a chance.

On 3/31/2018 at 8:49 AM, TrueJustice said:

why bother with anymore tests.

For proof of damage. To get an idea of some of what might be going onand also what might lead to proper treatment.

Its definitely not chemo toxicity were dealing with??

somewhere in between hypermetabolism andtoxicity. i think you have to figure what else would cause so much distress with very little objective proof in blood/hormone tests? and at the same time why is it so coincidental that we have so many symptom commonalities (i.e. hair falling out, digestion issues, rarely get sick/catch the flu, depression, sexual dysfunction, joint pain, inflammation)

Clearly,there is something askew, however a doctors job isn't conjecture, which is why they just want to hear symptoms so they can treat it (bandaid). The majority of patients are happy, Investors are happy, Roche is happy, we are just collateral damage...

https://seekingalpha.com/article/4160485-new-flu-drug-exciting-news-sick-roche-shareholders#alt3

Wow, and in sudden amazing fashion. Guess who just mentioned us in his latest podcast. Joe Rogan.

Start at 59:50

Didn't know comedian Andrew Santino took Accutane. And he is super popular at the moment. That's pretty big.

@guitarman01

Just requested the AchR Ganglionic test from my neuro! Praying she agrees! I dont see why she wouldnt. She tested me for all the other AchR tests. If this ends up being positive, this could be huge guys.

On 3/31/2018 at 5:40 PM, Frage said:

Days like this give me hope. Cautious hope, cautious optimism, but it is nice to know that in the waxing and waning of my symptoms that sometimes the cycle comes to a very good day.

If symptoms continue to wax and wane like they have for me this would make you think some of this could be environmental based. Which could mean the foods we eat, even the air we breath could swing things in one direction or another.

On 3/30/2018 at 11:12 AM, Frage said:

Does anyone else haveErythromelalgia? Its a vasomotor dysfunction where feet and hands swell and their veins dilate in excess resulting in red engorged painful extremities. I was diagnosed with it a month or so ago. Relates to this vaso-circuitrydiscussion?

I was diagnosed with Raynaud's Disease when I was a kid. Long before Accutane. Basically you get changing blood flow in your hands or extremities and they can turn purple or go from cold to hot.

Whats real crazy is Im starting to recognize and maybe associate some moments I had as a kid where I would feel a sense of numbness or tingling in my head.

When I talk about your environment swinging things in the right or wrong direction,
that includes Accutane.

15 minutes ago, guitarman01 said:

If symptoms continue to wax and wane like they have for me this would make you think some of this could be environmental based. Which could mean the foods we eat, even the air we breath could swing things in one direction or another. I was diagnosed with Raynaud's Disease when I was a kid. Long before Accutane. Basically you get changing blood flow in your hands or extremities and they can turn purple or go from cold to hot.

Whats real crazy is Im starting to recognize and maybe associate some moments I had as a kid where I would feel a sense of numbness or tingling in my brain.

When I talk about your environment swinging things in the right or wrong direction,
that includes Accutane.

Hey @guitarman01so you never followed up with your positive results for AAG right ? Were they like FULLY positive or slightly positive? How come you dont want to seek any form of treatment?

Also do you know of anyone else testing for this besides Babis? Or are we the only 3 on this forum?

19 minutes ago, Colinboko said:

Hey @guitarman01so you never followed up with your positive results for AAG right ? Were they like FULLY positive or slightly positive? How come you dont want to seek any form of treatment?

I believe positive is positive. There are no false positives. There could be a chance for a false negative though.
I believe there could be other causes that wouldnt be treated with immunosuppression or steroids.
Its not that I dont want any treatment, its just that these are serious treatments that could compound the problem.
Example Prednisone

These drugs can:

• increase your blood sugar level, which can trigger temporary and possibly long-term diabetes
• suppress your bodys ability to absorb calcium, which can lead to osteoporosis
• increase your cholesterol and triglyceride levels
• increase your risk of ulcers andgastritis
• delay wound healing, which requires a certain amount of inflammation
• suppress your immune system and make you more prone to infections

Long-term use of glucocorticoids can cause a loss of muscle tissue.

Starts to sound pretty similar to Accutane side effects.
I could be wrong about these forms of treatments, but Im not taking this chance atm.
I havent forgotten about my test result and this is something im still keeping in mind going forward.
This could be indicative of nervous system damage when nothing else seems to be found.

42 minutes ago, guitarman01 said:

I believe positive is positive. There are no false positives. There could be a chance for a false negative though.
I believe there could be other causes that wouldnt be treated with immunosuppression or steroids.
Its not that I dont want any treatment, its just that these are serious treatments that could compound the problem.
Example Prednisone

These drugs can:

• increase your blood sugar level, which can trigger temporary and possibly long-term diabetes
• suppress your bodys ability to absorb calcium, which can lead to osteoporosis
• increase your cholesterol and triglyceride levels
• increase your risk of ulcers andgastritis
• delay wound healing, which requires a certain amount of inflammation
• suppress your immune system and make you more prone to infections

Long-term use of glucocorticoids can cause a loss of muscle tissue.

Starts to sound pretty similar to Accutane side effects.
I could be wrong about these forms of treatments, but Im not taking this chance atm.
I havent forgotten about my test result and this is something im still keeping in mind going forward.
This could be indicative of nervous system damage when nothing else seems to be found.

Other causes?

But this test is specific to autoimmune induced dysautonomia, I thought? Its not like its just telling you that you have nervous system dysfunction without a cause, its telling you that you have antibodies that are causing it. But thats totally up to you.

That is the thing thats different about this form dysautonomia. Its one of the only ones that has a definite autoimmune trigger. But I guess drugs got us into this mess in the first place and some may be scared to try them again.

@Colinboko
I posted this pretty recently. This antibody testing positive does not guarantee that nervous system dysfunction is autoimmune in nature and it could still flag positive.
(though yes the immune system could be involved)

Ganglionic Acetylcholine Receptor Autoantibody

but yes a antibody by definition is something provoking an immune response.
So at some point could there be a immune response to everything going on?
Probably. We would just need to see some more of these tests results from a group perspective.
I can think back to @Babisposting about low grade brain inflammation detected on a PET scan. Autoimmune encephalitis?

Autoimmune encephalitis(orautoimmune encephalopathy) is a diverse group ofneuro-psychiatricdisorders recognized recently[when?], presenting acutely or subacutely withalteration of consciousness,cognitive decline,seizure, andabnormal movements. Associated with systemic autoimmune disorders, CNS autoimmune disorders and paraneoplastic syndromes.Pathogenesisis likely to be mediated by antibodies (Abs) to CNS proteins.

41 minutes ago, guitarman01 said:

but yes a antibody by definition is something provoking an immune response.
So at some point could there be a immune response to everything going on?
Probably. We would just need to see some more of these tests results from a group perspective.
I can think back to @Babisposting about low grade brain inflammation detected on a PET scan. Autoimmune encephalitis?

Autoimmune encephalitis(orautoimmune encephalopathy) is a diverse group ofneuro-psychiatricdisorders recognized recently[when?], presenting acutely or subacutely withalteration of consciousness,cognitive decline,seizure, andabnormal movements. Associated with systemic autoimmune disorders, CNS autoimmune disorders and paraneoplastic syndromes.Pathogenesisis likely to be mediated by antibodies (Abs) to CNS proteins.

The way I see it

if we have the antibody in excess

suppressing the immune system will suppress the release of the antibody

dysautonomia has a chance to reverse and symptoms begin to get better

Fill me in on what Im missing..

i'm still looking at possible absolute causes that balloon into systemic effects.
triggering auto immunity could be a effect, not a cause.
Or Vice versa. You can see they are still learning about this antibody.
I still think this test could have importance.

Interesting how many of you are determined to go down different paths trying to find solutions, thats a good thing.

I will continue to say though and Im assuming that if youre going down these different paths,you dont believe its chemo toxicity were dealing with??

Can I ask why you think its not? Colinboko I know your reason given length of time on tane, Id think the same thing but then again.....

Acccuity - you seem to think its chemo related yeah or are you thinking its something else? The mental side effects, chemo brain etc etc. I dont know that we can test for it but do we need to?sometimes you just gottaput 2 and 2 together - we know tane is essentially a chemo drug......dont we??!!

to be honest, i can't tell if they are purposely misleading the thread or truly believe in such an elaborate theory of everything...

2 hours ago, macleod said:

to be honest, i can't tell if they are purposely misleading the thread or truly believe in such an elaborate theory of everything...

Yeah purposely misleading. Ya caught me! Seriously? Lol.

What conclusions have we come to at all on here? Absolutely nothing. This is a place to talk about what weve all tested and tried so we can get towards that conclusion. Me getting this test done could potentially help your future with this mess. Kind of a rude comment man.

3 hours ago, TrueJustice said:

Interesting how many of you are determined to go down different paths trying to find solutions, thats a good thing.

I will continue to say though and Im assuming that if youre going down these different paths,you dont believe its chemo toxicity were dealing with??

Can I ask why you think its not? Colinboko I know your reason given length of time on tane, Id think the same thing but then again.....

Acccuity - you seem to think its chemo related yeah or are you thinking its something else? The mental side effects, chemo brain etc etc. I dont know that we can test for it but do we need to?sometimes you just gottaput 2 and 2 together - we know tane is essentially a chemo drug......dont we??!!

Whether it is or it isnt, you need to understand that these side effects are caused by certain processes going haywire in the body. Processes that can potentially have a cause that IS treatable. All avenues should be explored, plain and simple. I personally dont think it is chemo related but others may have the scientific proof to believe otherwise.

Thats fine, like I said, its a good thing that were investigating different paths - Im seriously all for that!!

Its important along the way though to debate things in ahealthy way so as we dont blindly miss the obvious, thats all Im saying.

I would like to hear from others who dont believe its chemo related, why do you believe its not?

I respect all commentary, Im trying to see how strongly I believe in thats its chemo related which is why Id value some comments on the matter.

Even if it is chemo related I dont know the next steps anyway to fixing it other than supplements....

4 hours ago, TrueJustice said:

Thats fine, like I said, its a good thing that were investigating different paths - Im seriously all for that!!

Its important along the way though to debate things in ahealthy way so as we dont blindly miss the obvious, thats all Im saying.

I would like to hear from others who dont believe its chemo related, why do you believe its not?

I respect all commentary, Im trying to see how strongly I believe in thats its chemo related which is why Id value some comments on the matter.

Even if it is chemo related I dont know the next steps anyway to fixing it other than supplements....

Heres my breakdown of it in short.

Chemo brain/toxicity is a pretty fairly reversible condition with time. (So it seems via internet)

Accutane even at its highest doses is BARELY enough to even be considered chemo treatment. And if it was, why dont we experience any of the other chemo symptoms? Hair falling out in clumps to the point where were all bald? Nausea? Vomiting? Also that would leave everyone who took Accutane to be just as susceptible to the symptoms we have now. You have to remember, were the minority! Plenty of people that I know have taken Accutane triple the amount that I was at and walked out completely unaffected. Even the healthiest of bodies get broken down by chemo. Theres no magic mechanism that just makes people dodge chemo toxicity. Every cancer patient experiences it in some form or another.

I just mean the various posts about random science...How donating blood is healthy because of iron accumulation in the liver...The mutation of hereditary genes...Vitamin K metabolism...They aren't inaccurate posts by any means, I just don't know how they apply to us...on this specific forum. I see acne.org more of a public forum to warn kids of the potential dangers of this drug.

Having said that, I read every post. I've seen auto immune system specialists (all negative tests). I've got an empty bottle of Vitamin K here on the table (no need to buy as I eat greensevery day). I donate blood twice a year (healthy according to studies).

Anyways, I like science too, but we need some solutions. I'm all for theory, but Empirical data is key. And we need to share that information to new members who happen to stumble on this page. Our experience with Hyaluronic acid. Digestive supplements. How we battle our newly found depression/brain fog naturally. This stuff is key too.

And that's true, most chemo patients bounce back from their side effects, similarly with Accutane patients. However, there is a small percentage of people that get stuck in this negative loop.I haven't taken Accutane since 2008, and I'm still night blind. It may be permanent. Accutane side effects arevery similar to chemo drug side effects.

59 minutes ago, macleod said:

I just mean the various posts about random science...How donating blood is healthy because of iron accumulation in the liver...The mutation of hereditary genes...Vitamin K metabolism...They aren't inaccurate posts by any means, I just don't know how they apply to us...on this specific forum. I see acne.org more of a public forum to warn kids of the potential dangers of this drug.

Having said that, I read every post. I've seen auto immune system specialists (all negative tests). I've got an empty bottle of Vitamin K here on the table (no need to buy as I eat greensevery day). I donate blood twice a year (healthy according to studies).

Anyways, I like science too, but we need some solutions. I'm all for theory, but Empirical data is key. And we need to share that information to new members who happen to stumble on this page. Our experience with Hyaluronic acid. Digestive supplements. How we battle our newly found depression/brain fog naturally. This stuff is key too.

And that's true, most chemo patients bounce back from their side effects, similarly with Accutane patients. However, there is a small percentage of people that get stuck in this negative loop.I haven't taken Accutane since 2008, and I'm still night blind. It may be permanent. Accutane side effects arevery similar to chemo drug side effects.

All it takes is one blood test to come back positive for us all and we could have this thing figured out. Ive had autoimmune tests too.. all negative. But am I still going to get this AchR Ganglionic test done? Yes because two post Accutane users have tested for it (think theyre the only ones who have) and tested positive! We all need to contribute by getting the obscure tests. I know insurance differs with everyone but what if we all started testing positive on this?

Colinboko- if you do test positive, what is the follow up plan?

What are they likely to put you on out of curiosity?

On 4/2/2018 at 12:25 PM, macleod said:

somewhere in between hypermetabolism andtoxicity.

This is whats a little random. Some of the rest you don't know what youre talking about so much. I don't claim to have the answers, but I think some of you have seen enough of my posts to know Im not full of shit either.

18 hours ago, macleod said:

to be honest, i can't tell if they are purposely misleading the thread or truly believe in such an elaborate theory of everything...

You literally just got done posting a chart about the autonomic nervous system and that's what we were literally just talking about.
You are so strange on here sometimes, I question your priorities.
Others should too.

I get the person that posts the most on here is open to the most criticism. I can take criticism.
But you better give me a better answer then "just because" if you are going to go out of your way to criticize me.I have put as much effort into this as anyone.
I can stop posting, and you can thank people like @macleodif I do.
Do you see me going after any of you guys?
I could. That's not what I'm about on here.
People are already fighting enough in real life.

20 hours ago, TrueJustice said:

Acccuity - you seem to think its chemo related yeah or are you thinking its something else? The mental side effects, chemo brain etc etc. I dont know that we can test for it but do we need to?sometimes you just gottaput 2 and 2 together - we know tane is essentially a chemo drug......dont we??!!

Long story short, I am trying to do everything I can to run in the opposite direction of aging. Lots of fish oil, low-dose Naltrexone, cardio workouts, intermittent fasting (helps a LOT), various safe antidepressants/herbs with neuroprotective effects (NOT SSRIs), etc.

9 hours ago, Colinboko said:

Accutane even at its highest doses is BARELY enough to even be considered chemo treatment.

When I say "chemo effects" I am referring to how the drug is documented to work in the body. It is undeniable that the drug exerts effects that mimic aging. That is the reoccurring theme in looking at many of the drug's actions in the body. Apoptotic effects have been observed in multiple cellular systems. Also, the relationship between Accutane and telomere shortening is pretty convincing as well. It doesn't get much more "chemo" than that.

9 hours ago, Colinboko said:

And if it was, why dont we experience any of the other chemo symptoms? Hair falling out in clumps to the point where were all bald? Nausea? Vomiting?

I run a Facebook group of post-Accutane sufferers that is now up to over 600 members. I have seen numerous posts in which people share pictures of the immense amount of hair that has collected in their drain or sink. Some women even note they must wear a hair piece due to the odd balding patterns caused by the drug. I have read multiple Accutane threads of people experiencing hair loss, which read more like journals, due to the devastating amount lost. This is a bigger theme with Accutane than some realize. Retinoid induced hair loss is a documented phenomenon, as it interrupts the usual growth cycle of hair follicles.

When you mention nausea and vomiting, I have to note that gastrointestinal side effects are another very common theme with many of us. Many people note digestive changes. And this is no surprise given the studies conducted in the 80s (by Roche themselves) which showed this drug degrades the intestinal lining. Personally, I experience morning nausea every day since taking this drug. That said, nausea is nothing compared to the strokes, pancreatic issues, and kidney failure some have acutely experienced from this drug. (Strokes in young, previously healthy patients has been documented in hearings against Accutane.)

9 hours ago, Colinboko said:

Plenty of people that I know have taken Accutane triple the amount that I was at and walked out completely unaffected. Even the healthiest of bodies get broken down by chemo.

I feel like this post is intended to convey your general impression more than it is intended to be an analysis. And that's fine. But I must point out that it really isn't unusual for one compound to completely mess up a subset of people and leave others perfectly in tact. All humans are, what, 99.8-99.9% genetically similar? Yet a subset of us will die if we ingest a certain amino acid (Phenylketonuria). A subset of us will die if we eat peanuts. A subset of us will break out in a terrible rash if we take a narcolepsy drug. A subset of us will get third-degree burns by doing something as natural as sun-bathing. At the end of the day, no two drugs are the same. And no two humans are the same. But in all of the research I have read about Accutane, I cannot help but notice the uncanny parallels to aging effects/chemo effects.

There are other things that I pay attention to, such as direct organ damage, which is obviously also a possibility given the fact people have experienced things like strokes, kidney failure, and brain damage from the drug. I am simply allowing the science I read to guide my conclusions. At the end of the day, this drug has diverse pharmacological effects. I have no doubt inflammation or autoimmune issues are piece of the puzzle. Curtailing inflammation and combating aging often go hand-in-hand, as many age related diseases involve inflammation.

Thank you ACCUITy

How do you get your supply of Naltrexone?
its a prescription drug yeah?

You and I are usesimilar supplements I believe, Idocumented what you posted last time about what you take.

Just in case Ive missed something,what are you taking when you say safe antidepressants??

please list them