Has anyone had success with Gilkgo Bilabo? Ive heard great reports and am going to give it a go.

1 hour ago, Vice-accutane said:

Yes. And before I took this drug, my research were biased actually . I was googling in French and almost all review available were given by women. They were fine and recommended the drug . So I took it too thinking I would be fine too . A male friend of mine took the drug without damage afterwards also. It really makes me think what was different in us long term victims to those that took the drug without much harm .
But hey, daily reminder, people have gotten better, some have recovered . Do not give up, do not stop trying. It might take years but this is life; the day I will be recovered, the faster the better, I will look back and say it was worth it, for all the knowledge/experience it gave me, plus personal reasons. Cliche yes, but what doesn't kill you makes you stronger

Idontknow1993, are you referring to CDnuts ? I'm planning to follow his protocol as well. I just have to make myself in a better situation financially and I also want to try some products I have/will purchase/d beforehand

There has to be some trend connecting all of this. Why were we affected long term and others weren't? Did we all have a compromised immune system that we just didn't know about? Obviously we all keep going to the doctor and they keep finding nothing, just like before we got on Accutane they couldn't tell if we had a compromised immune system or not. For the purpose of transparency, I was on accutane for just three months, but while I was on it I smoked weed quite a bit ( maybe explains these chronic headaches afterwards), took antibiotics at one point ( maybe explains the IBS now), and I have HPV too( compromised immune system). I also ate a lot of spinach and vegetables while on it ( maybe Vitamin A toxicity) and worked out quite a bit (might explain chronic muscle soreness now) I don't know, but maybe all of this played a role to some extent and mixed with the Accutane to create these long term effects. Thoughts?

1 hour ago, Cory90 said:

Everyone here still looking for an answer. Still feeling the effects like everyone else here. Sucks that our quality of life has been diminished. Wish at the age of 13 when I was prescribed these drugs that I could just say no. Oddly enough I have a twin brother who took the same course as me and he really has little to none of the effects I or other users here have. I just assume i must have metabolized the medicine differently.

Twin brother ! Damn. Then maybe it's not genetics. This kind of debunks my previous post on possible causes. I'm still curious as to how we were effected long term and others weren't. It coulnt just be bad luck. There has to be something.

6 hours ago, macleod said:

You literally just did what that other guy did a couple weeks ago regarding asking doctors for tests. Put words in my mouth, made up your own delusional scenario, where you (as the child) are in the right.

I think you got me all wrong. I dont care at all about being right. I care about getting it right.
Why are you still here after so many years? I kind of get the feeling you're just hanging out. This isnt coffee hour for me, most people dont come here to chat. Im trying to move the chains. I think you might not be in a good place to help people.
There is no delusion next time you spout off I know you're not really paying attention or even care and I'll completely ignore you. I think you're just looking for attention. I just think you're kind of fake on here. Mr. I got your back. If I could block your posts I would because I think you're more of a distraction than anything. Stop playing post police, let the posts be free. They wont hurt you, but I think you're capable of discouraging people on here by being a diva. Glad I spent time on this once again. Last time.

Anyways back to trying to be productive, i'm really not ^this guy.
@tanedout
Jorcruz said he had a lumbar puncture I thought this past week?
@Jorcruz24
You have that lumbar puncture?

On 7/19/2017 at 12:30 AM, tanedout said:

you seem to be able to get all sorts of tests done which is great, but I really think many of things are just downstream issues as a result of depleted neurosteriods post accutane. Are you able to get you cerebrospinal fluids tested?

Well im not going to walk into the nearest ER and get a spinal tap like im buying a carton of milk, but if it comes to knowing this might be significant and reveal something I have no problem getting this done. (there are risks)

Have you been seeing these posts? Tested positive for achr ganglionic neuronal antibody. So did someone else who took accutane. Odds 1 out of 15,000 people.
[Edited link out]
This is a hell of alot easier then getting a spinal tap.

This is autoimmune neurological involvement
Its not that hard to imagine that after taking Accutane for a period of time the body started to reject what it was doing.
It might have flipped a switch that stayed flipped.

Can the person who by now has had the Lumbar punch speak up and notify all of the outcome please!!?

very curious on this treatment....

^ Ditto,  very curious as the results.     By the way,  how do you just demand a lumbar puncture though.

My neuro wouldnt do one, despite my headaches.   He said my eye exam looked fine and youd see signs of raised intracranial pressure in the eye exam if I had it.    
 

@macleod
I think the study you posted is a step in the right direction, specifically cortisol resistance in the hypothalamus I mean. It's not unique to retinoids either. The only problem is establishing if this holds up in long term well beyond discontinuation of the drug. Because sometimes it's not clear if symptoms are closer to high or low cortisol, and cortisol problems tend to morph over time.

7 hours ago, guitarman01 said:

stuff

Just look at your post count. I'm not attacking your character, as you continuously attempt mine, both are irrelevant. I don't even have to quote your post, and turn it into some back and forth, so I can save some thread space. I simply asked if you could be a bit more organized and not jump around so much so I could discern between real users and ones possibly being created to discourage or confuse the thread.

21 hours ago, Jorcruz24 said:

Has anyone noticed that these side effects tend to affect men more than women ?

Yeah, there are definitely more men than women posting on this forum. But on the Facebook group I run pertaining to this topic, I would say the sex ratio is 60/40 in favor of women. I do notice an odd trend though. It seems to be the case more men are talking about anhedonia/emotional blunting on that forum. Of course some women articulate the same problems, but more often the health problems pertain to other organs (muscles, bones, pain disorders). It just seems a bit more multi-faceted. For example, the only two stories of an acute reaction to the drug involving organ failure were from women. For another example, a lot of us are hit with IBS, but I seem to read more stories of women getting IBD. But again, I'm just one person judging anecdotes from one source. I am working to compile serious negative anecdotes of Accutane on the Internet so I can make (slightly more) scientific judgements on how this drug impacts people. I will link the file.

@macleod, I read your points and I understand where you are coming from. It seems this drug can affect us in unpredictable ways. If someone found an immune marker that may actually indicate a viable treatment option, more power to them. Perhaps it can help someone. But based on my the research and the countless sufferers I have spoken to, it seems that hormone disruption and brain alterations are the most reasonable trail to follow. If those avenues have been exhausted, then it's probably time to move on to a different angle. I would just go in order from least obscure to most obscure. For how well studied retinoids are, it's a shame that there are no meaningful follow-up studies of former Accutane users. Until then, we will all continue to go in circles wondering what post-Accutane problems are "secondary" and what the "primary" damage is causing said "secondary" issues. Hell, is that even an accurate way to conceptualize this? Perhaps once the damage is done, everything must be addressed individually. We don't know.

Yeah

Still you could try to find alternatives to Mifepristone to try out. Mifepristone looks expensive especially something with effects taht are going to be temporary (probably).

Some of the steroids, DHT, DHEA, pregnanolone, can all act as GR antagonists, along with P5P (B6), but I've been through all them mself. I have my doubts they substitute completely for Mifepristone. Like they wrote in the article, they're not 100% sure about its mechanisms of action.

Oh yeah, just so nobody wastes their time, those things are useless without thyroid (or caffeine or even maybe TUDCA) or if you low-carb. (btw these all affect hypothalamus even though it's not the only reaosn to combine them)

Gonna repeat what some other guy wrote: don't spend ages on vitamins, minerals and shitty herbs. They're not all useless and you need some but you can waste years of your life on em. Start with the heavy hitters like thyroid (T3/NDT), steroids, drugs, stronger meds, that have strong effects good or bad, and hit the problem top-down instead of bottom-up. Even if you know it's just a trial for diagnostics. I know everyone's wary of pharmaceuticals but accutane is an exception-al drug.

one of the last vitamins im looking at is k2 or mk7 or even mk4, I still have some concerns about the safety of mk7 (in how it interacts with everything) and even the bacteria its fermented with such as bacillus subtilis. I believe bacillus subtilis has been found in the human gi tract.
Bacillus subtilis produces mk7. Bacillus subtilis is normally extremely resistant to antibiotics. Not only that, but looking at what might be possible as I mentioned what seems like a association with P. acnes bacteria. Kill the acne, kill the menaquinone or even  suppress their production.
[Edited link out]
Information
Menaquinone-specific isochorismate synthase

gene neighborhood

gene fusions

gene co-occurrence

Im probably going to get this blood test to try to look into this
[Edited link out]

The Genova Diagnostics Vitamin K Assay

(Direct vs. functional measurement of vitamin K)

The Genova Diagnostics Vitamin K Assay measures a functional marker, undercarboxylated osteocalcin (ucOC). Very little vitamin K is stored in the body therefore direct measurement is not ideal.

@mariovitali Do you still believe strongly in vitamin k2 at this point? This test even has a cpt code for insurance, even without, its not that expensive. If you wanted to try to prove a possible association with k1/k2 and some of these syndromes, This would be a test to get.

I just got my results from my Lumbar Puncture procedure and luckily (or perhaps unluckily) they did not find anything wrong with the cerebrospinal fluids. It's at least some peace of mind, but back at zeroespecially considering the fact the procedure caused leakage days later and I needed to go back to the ER to get a blood patch to seal it up (not fun!). I have a follow-up appointment with my neurologist on Monday, but over the phone he did mention tre possibility of Prednisone. I've seen it mentioned on here a couple of times. Have any of you taken it? Thoughts? The potential side effects of this drug seem like a whole other burden to bear.

20 hours ago, TrueJustice said:

Can the person who by now has had the Lumbar punch speak up and notify all of the outcome please!!?

very curious on this treatment....

My Neurologist ordered the exam, I didn't request it. Sadly, everything came back normal. The procedure itself wasn't that bad, it was the spinal leakage that occurred days later that required me to go to the ER and get a blood patch to seal it up that was the real bitch ( headaches were 10 x worse). I have a follow-up with the neurologist on Monday. I'll keep you guys updated.

I will say that after the Lumbar Puncture procedure , apart from the spinal headaches that occurred and the fact that I had to lay down for the next 24 hours, physically and mentally I felt great. I think, and this is just a theory, the physical pain caused from the procedure made my immune system focus on that specific pain in the body and healing. In a sense, I think I felt great because for once I felt like my body wasn't attacking itself, but focused on attacking an actual pain and discomofort. Maybe a lot of this is caused by an overactive immiune system that for some reason is attacking itself. Just an idea. Any thoughts ?

On 7/20/2017 at 7:23 AM, Jorcruz24 said:

I just got my results from my Lumbar Puncture procedure and luckily (or perhaps unluckily) they did not find anything wrong with the cerebrospinal fluids. It's at least some peice of mind, but back at zeroespecially considering the fact the procedure caused leakage days later and I needed to go back to the ER to get a blood patch to seal it up (not fun!). I have a follow-up appointment with my neurologist on Monday, but over the phone he did mention tre possibility of Prednisone. I've seen it mentioned on here a couple of times. Have any of you taken it? Thoughts? The potential side effects of this drug seem like a whole other burden to bear.

Yea at least now you know, which helps people here out as well that have been wondering about this.
I get the same head pressure your talking about. Alot of us do.
Id seriously look into getting this test next time you go. You've probably seen me talk about it.
[Edited link out]
Print this out, take it to your neurologist next time you go. Make sure your insurance will cover the cpt codes, its diagnostic, they should.
I tested positive for this antibody

highlight it for him. Tell him multiple people that took accutane are testing positive for this antibody and you want this test.
We get one more person testing positive on this and it could really set things off.
This could be related to some of your symptoms, this is something that could worsen with time. The sooner you know this, the better.
This affects the nervous system, its autoimmune.
[Edited link out]
Check out the video for more information if you want.
This is something that could affect the brainstem orhypothalamus

On 7/20/2017 at 7:43 AM, guitarman01 said:

Yea at least now you know, which helps people here out as well that have been wondering about this.
I get the same head pressure your talking about. Alot of us do.
Id seriously look into getting this test next time you go. You've probably seen me talk about it.
[Edited link out]
Print this out, take it to your neurologist next time you go. Make sure your insurance will cover the cpt codes, its diagnostic, they should.
I tested positive for this antibody

GANG	AChR Ganglionic Neuronal Ab, S

highlight it for him. Tell him multiple people that took accutane are testing positive for this antibody and you want this test.
We get one more person testing positive on this and it could really set things off.
This could be related to some of your symptoms, this is something that could worsen with time. The sooner you know this, the better.
This affects the nervous system, its autoimmune.

Ok, will do. Have you taken anything for it that has helped ?

10 minutes ago, Jorcruz24 said:

Ok, will do. Have you taken anything for it that has helped ?

No. I Have a neurologist appointment next week to discuss this test, I just got the result not too long ago. They treat this with plasma exchange, immune shots or prednisone depending on severity. This would justify him giving you prednisone. But the others might be more 1st line options. Im not sure how familiar he will be with this test, so you might need to really force the issue.

3 hours ago, Jorcruz24 said:

I will say that after the Lumbar Puncture procedure , apart from the spinal headaches that occurred and the fact that I had to lay down for the next 24 hours, physically and mentally I felt great. I think, and this is just a theory, the physical pain caused from the procedure made my immune system focus on that specific pain in the body and healing. In a sense, I think I felt great because for once I felt like my body wasn't attacking itself, but focused on attacking an actual pain and discomofort. Maybe a lot of this is caused by an overactive immiune system that for some reason is attacking itself. Just an idea. Any thoughts ?

I really appreciate your feedback- thank you!!

That test guitarman posted is something I'm looking into. I mean if I'm seeing a neurologist I'll ask for the eye test too just to rule out any lumbar puncture.

I didn't even know that's how they determine lumbar punctures so that's handy to know.

Have any of you taken prednisone? My doctor is suggesting it. Did any of you guys find long term relief? I'm worried about the long term potential side effects of this drug.

1 hour ago, Jorcruz24 said:

Have any of you taken prednisone? My doctor is suggesting it. Did any of you guys find long term relief? I'm worried about the long term potential side effects of this drug.

I woke up this morning thinking about this drug, curious to know how does one feel when on it?
Are there side effects and how long should you be on it?
Also, what happens when you come off it? Do you revert back to how we feel now or is there healing and improvement in our condition?

2 hours ago, Jorcruz24 said:

Have any of you taken prednisone? My doctor is suggesting it. Did any of you guys find long term relief? I'm worried about the long term potential side effects of this drug.

prednisone destroys retinoic acid

16 minutes ago, tryingtohelp2014 said:

2 hours ago, Jorcruz24 said:

Have any of you taken prednisone? My doctor is suggesting it. Did any of you guys find long term relief? I'm worried about the long term potential side effects of this drug.

prednisone destroys retinoic acid

Is that good? Have any of you tried it and found long term relief ?

1 hour ago, Sprinterguy98 said:

ATTENTION:
Now I know what I am about to say has probably been discussed on this forum many times, but I recently just started putting some things together, and I believe I have a valid hypothesis, at least in my case. So bare with me.

Now, in my personal experience with the "post-tane" side effects, I have realized that when they are at their worst, my tongue is extremely yellow, aka the presence of Candida. But when I go through brief remissions, my tongue is basically spotless, in fact totally clean. This has only lead to me to assume that the problem we are all facing lies in the liver, as the gut is where Candida thrive.

So is Candida the problem? Well, probably not, but it is a good indicator, at least in my case, that the liver isn't functioning right when in the presence of Candida. I then began to do some research, which is where i came across this PFS recoverer:

http://www.remedyspot.com/content/topic/2708049-re-nystatin-full-sexual-recovery-from-pfs/

Essentially, he took the "bad liver and gut" approach by using anti fungal medications, specifically Nystatin and Dilfucan. Overtime, his symptoms got better (NOTE; he did take extremely high amounts, but you get the point with anti-fungals). And i know this is only one case, but it adds some validity to my hypothesis.

To elaborate even more, the gut has more neurons than the spinal cord, believe it or not. So, if the gut is flooded by Candida overgrowth, it will not function properly, thus leading to a host a neurological issues (hopefully the accutane side effects, because it is clear that accutane has some neurological effect of some sort).

So do you get what I'm saying here? Candida overgrowth = weak gut = impacted nuerons = host of problems.

So essentially, if any of you experience Candida with your side effects, why not try some prescription anti-fungals to cleanse the gut? Candida is very "natural treatment" resistant, so that is why liver flushes and nutrition don't seem to be helping people, in my opinion. They need prescription meds to be totally wiped out. Another interesting piece of information:

"It's estimated thatthereare between 400 and 600 millionneuronsin yourgut that's up to three times as manyneuronsthan in the brain of a rat. You're not conscious of yourgutthinking, but the system produces about 95% of the serotonin and 50% of the dopamine found in your body."Feb 13, 2015
https://theconnection.tv/second-brain-gut/

So see? An under functioning gut can have a profound impact on brain functioning. And eliminating Candida in our systems just might be the answer. I am very optimistic about this theory, as I will test it myself.

What does everyone think?

What do we all think?

Well up till now we'd have to all agree that none of the natural anti-candida supplements or liver flushes etc have done a thing really!!

The most effective treatment thus far would have to be changing diet, this would be the same even if you weren't a Tane victim, eliminating sugar is the key but has that fully worked?? - NO it hasn't!!

Would trying something stronger work like a prescription drug?
Possibly but not sure if anyone's gone down that path up till now??

If I took an anti candida prescription drug and my 20 year head pressure went away I'd say it was a success.....

2 hours ago, Sprinterguy98 said:

the gut has more neurons than the spinal cord

2 hours ago, Sprinterguy98 said:

It's estimated thatthereare between 400 and 600 millionneuronsin yourgut

2 hours ago, Sprinterguy98 said:

"bad liver and gut"

To reput this, a bad gut can equal a bad liver. I think the neuron-gut connection is really good information to keep in mind. This doesn't necessarily have to be candida. (but if all you're taking is a straight up high dose antifungal drug, and you start to feel great, then you would know)

From Medscape, 2015

Alcohol and Gut Microbiota
The Possible Role of Gut Microbiota Modulation in the Treatment of Alcoholic Liver Disease

gut flora plays an important role in the pathogenesis of alcoholic liver injury.
gut microbiota modulation could be a target for the treatment of alcoholic liver disease.

Talking about the safety of Prednisone, a short-term tapered, high dose course of prednisone should be safe (they probably look at risk factors like osteoporosis for example) A long term maintenance dose could be safe in the 5 to 10mg range.(not sure if this low dose would be effective)This is based on what I read, not experience.

The point of all this though is if you have to go on some sort of treatment like this, especially if it had to be long term, Id want to know why and Id want to be able to pin it on the drug manufacturer if possible.
Thats why id really push to get that test I mentioned if you can, so if it comes back positive, at least you have an idea of what might be going on, and go from there. Believe me I have had a TON of tests, and this one so far is the only indication of something abnormal.

The headline would basically read, Nerve damage caused by Accutane. This isnt necessarily detected on standard nero tests, but it shows up as this antibody. I Just dont know about this until more people get tested.

Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). AAG can impact people of all ages and both sexes. Approximately 100 Americans are diagnosed with AAG per year. AAG is a treatable antibody-mediated disorder of autonomic ganglionic synaptic transmission.

I'm just so pissed off at the moment, why didn't my gastroenterologist offer any of this info?? Like I say, just because nothing really sinister is found doesn't mean ones gut is in good health!!

I recently went on 10 days of "intestaclear" followed by Mutaflor - did nothing!! If the more natural path of zapping candida etc was going to work, this surely would have done it....

Surely the ultimate gut restorer would be a "Poo transplant"!!??

I think if that didn't work you'd either conclude permanent damage is at play or our problems just aren't gut related!!?