So I have another couple hour long consultation at a university, followed by a tilt table test for POTS next thursday.
Im thinking

this,

New Warnings With Accutane Use

http://abcnews.go.com/Health/story?id=117666
Megan McKinley, 19, had been an honors student until she took Accutane, the popular acne drug.

Once on Accutane, she began experiencing fatigue and memory loss, and her mother, a psychotherapist, asked the doctor if her symptoms might be connected to the drug. The doctor said the drug and her feelings were unrelated.

Megan improved after she stopped taking Accutane, but when placed back on it for another course of treatment, she had a big meltdown, and never quite recovered. Today, the young woman often spends days crying, cannot concentrate and cannot attend classes at school. She is finishing her education at home.

could be this

Postural orthostatic tachycardia syndrome

All patients were apparently well, until years later when they presented with fatigue, cognitive dysfunction and orthostatic intolerance. These patients were diagnosed with POTS on the basis of clinical features and results of the tilt table (HUTT) testing.

Five patients (all women), aged 22-44 years, were identified for inclusion in this study. These patients developed symptoms of fatigue, cognitive dysfunction, orthostatic palpitations and either near syncope or frank syncope. The debilitating nature of these symptoms had resulted in lost of the employment or inability to attend school. Three patients were also suffering from migraine, two from anxiety and depression and one from hypertension. All patients demonstrated a good response to the employed treatment. Four of the five were able to engage in their activities of daily living and either resumed employment or returned to school.

if im right, This could maybe set some things off. They should be familiar with some of my abnormal blood tests that circle around this^
and this,

Cerebral vascular control is associated with skeletal muscle pH in chronic fatigue syndrome patients both at rest and during dynamic stimulation

Keywords:Autonomic function, Chronic fatigue syndrome,³¹P MR spectroscopy, Cerebral blood flow, Arterial spin labelling (ASL), Dual echo fMRI
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3777833/

and this is only part of it. Its about proving whats real. whats objective not subjective. You dont tell them, you show them.

http://whale.to/cancer/chemo.html

Does anyone else seem to have developed asthma? I don't know if this is the case but every time I have to run or walk up stairs for any extended period of time, I literally feel like my lungs are going to explode and I can't catch my breath for a while..

17 hours ago, guitarman01 said:

So I have another couple hour long consultation at a university, followed by a tilt table test for POTS next thursday.
Im thinking

this,

New Warnings With Accutane Use

http://abcnews.go.com/Health/story?id=117666
Megan McKinley, 19, had been an honors student until she took Accutane, the popular acne drug.

Once on Accutane, she began experiencing fatigue and memory loss, and her mother, a psychotherapist, asked the doctor if her symptoms might be connected to the drug. The doctor said the drug and her feelings were unrelated.

Megan improved after she stopped taking Accutane, but when placed back on it for another course of treatment, she had a big meltdown, and never quite recovered. Today, the young woman often spends days crying, cannot concentrate and cannot attend classes at school. She is finishing her education at home.

could be this

Postural orthostatic tachycardia syndrome

All patients were apparently well, until years later when they presented with fatigue, cognitive dysfunction and orthostatic intolerance. These patients were diagnosed with POTS on the basis of clinical features and results of the tilt table (HUTT) testing.

Five patients (all women), aged 22-44 years, were identified for inclusion in this study. These patients developed symptoms of fatigue, cognitive dysfunction, orthostatic palpitations and either near syncope or frank syncope. The debilitating nature of these symptoms had resulted in lost of the employment or inability to attend school. Three patients were also suffering from migraine, two from anxiety and depression and one from hypertension. All patients demonstrated a good response to the employed treatment. Four of the five were able to engage in their activities of daily living and either resumed employment or returned to school.

if im right, This could maybe set some things off. They should be familiar with some of my abnormal blood tests that circle around this^
and this,

Cerebral vascular control is associated with skeletal muscle pH in chronic fatigue syndrome patients both at rest and during dynamic stimulation

Keywords:Autonomic function, Chronic fatigue syndrome,³¹P MR spectroscopy, Cerebral blood flow, Arterial spin labelling (ASL), Dual echo fMRI
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3777833/

and this is only part of it. Its about proving whats real. whats objective not subjective. You dont tell them, you show them.

What was the treatment.

This is why we have to donate - this is criminal.

Is anyone willing to make an accutane video?

I received this via PM:

Hey, have seen gbolduev posts on rpforum?

Here is a quote of him

Same thing with accutane people. Accutane is an active vitamin A, it is retinoic acid. it by passes all the regulations in retonoid pathway. Now go and see what is in retinoic pathway, ZINC takes retinol and converts to retinal, then you need NAD then you need aldehyde enzymes to convert it further down to retinoic acid. Accutane bypasses all of this. This tanks your zinc, NAD, b2, molybdenum, magnesium , b6. Same exact things needed for 3 beta hsd. Retinoic acid is what produces progesterone.

You see it is exactly the same. I hope you post this on some accutane forums. I hate that those people are suffering for many many years

DOES ANYONE HERE STILL TAKE TUDCA? HEEEEEELP!

I've been on it for 1.5, maybe 2 weeks, and after three years of my eye floaters being maddening but STABLE, I've developed another grey floater. I'm devastated, as silly as that may sound.These things are driving me insane. Maybe it's a coincidence, but it seems unlikely to me. I mean, the timing.... Do I need to be taking something along with the Tudca to help move all this garbage outta my body? I don't know what to do.

5 hours ago, Colinboko said:

Does anyone else seem to have developed asthma? I don't know if this is the case but every time I have to run or walk up stairs for any extended period of time, I literally feel like my lungs are going to explode and I can't catch my breath for a while..

Yes bigtime!! Unfortunately it gets worse, I walk up some stairs at work and have to stop to catch my breath before I walk in to the office, I choose these steps as they are internal and I avoid embarrassment of walking in and seeing people who might ask, "why are you out of breath"???

2 hours ago, hatetane said:

I received this via PM:

Hey, have seen gbolduev posts on rpforum?

Here is a quote of him

Same thing with accutane people. Accutane is an active vitamin A, it is retinoic acid. it by passes all the regulations in retonoid pathway. Now go and see what is in retinoic pathway, ZINC takes retinol and converts to retinal, then you need NAD then you need aldehyde enzymes to convert it further down to retinoic acid. Accutane bypasses all of this. This tanks your zinc, NAD, b2, molybdenum, magnesium , b6. Same exact things needed for 3 beta hsd. Retinoic acid is what produces progesterone.

You see it is exactly the same. I hope you post this on some accutane forums. I hate that those people are suffering for many many years

But why does this continue years later after tane?? I understand it could happen while you're on it but to have all these problems years later I don't get?

The strength of tane is insane, you'd think the body would just revert back to its normal state after a course of tane but unfortunately not for many of us?

6 hours ago, Walden Rev said:

What was the treatment.

The study didnt say. It was only the abstract though, if there is a full study out there it might go into more detail.
I imagine they look at possible underlying causes first. For example, with this appointment I got coming up, they also wanted to schedule a echocardiogram and ekg. I've had a echocardiogram. it was normal.
ive had a heart stress test where its basically a ekg while your running.
it said on the report, abnormal response to stress. (Not serious enough for any concerns atm though)
One of the docs said there was a little sag in my heart, but its fine.
Which brings me to this.

7 hours ago, Colinboko said:

Does anyone else seem to have developed asthma? I don't know if this is the case but every time I have to run or walk up stairs for any extended period of time, I literally feel like my lungs are going to explode and I can't catch my breath for a while..

Have you checked your heart rate while your sitting and relaxed and then you get up and start moving around?
if you dont have a heart rate monitor, the cheapest would prob be a fingertip monitor on amazon.
I ask because of this,

Postural orthostatic tachycardia syndrome(POTS) is a condition in which a change fromlyingto standing causes an abnormally largeincrease in heart rate.^[1]This occurs with symptoms that may includelightheadedness, trouble thinking,blurry vision, or weakness.^[1]Other commonly associated conditions includeirritable bowel disease,insomnia,chronic headaches,Ehlers Danlos syndrome,fibromyalgia.^[1

These orthostatic symptoms includepalpitations,light-headedness, chest discomfort,shortness of breath,^[2]nausea, weakness or "heaviness" in the lower legs,blurred visionand cognitive difficulties.^[1]Symptoms may be exacerbated with prolonged sitting, prolonged standing, alcohol, heat, exercise, or eating a large meal.

There is significant overlap between POTS andchronic fatigue syndrome, with evidence of POTS in 2550% of CFS cases.^[6]Fatigue and reduced exercise tolerance are prominent symptoms of both conditions, anddysautonomiamay underlie both conditions.

About 90% get better with treatment.

I'll find out about this for myself soon enough.

On 9/18/2017 at 10:12 AM, SCOTT242 said:

Sjorgens symptoms is one of the issues that flares when I eat offending foods. It showed up on my blood work as high SSA Anitbodies which my doctor said is responsible for eye and mouth lubrication. I don't really notice a dry mouth, just eye pain like sand was thrown in them.

Never had high ssa ssb

just diffuse speckled ana
lip biopsy was negative
i don't get dry mouth just when waking up or anxious situations
eyes are brutal upon waking and more
what foods trigger it ?

On 8/30/2017 at 9:37 PM, octopusfrog said:

Just got some current blood tests done with a new doctor.. same as two years ago. High testosterone, low FSH and low vitamin D. I will see a neuro in 2 weeks and ask for the autonomic test.

I remember you posting this. How did it go with the neurologist? Were you able to get that achr neuronal antibody test? When we get in front of some of these doctors, I feel we are literally going to have to show them what we are talking about. print out the studies, the relations, show them the story in order, what might have happened. Dont expect for them to take your word. I mean this for anyone that gets resistance.

I received this via PM:

Hey, have seen gbolduev posts on rpforum?

Here is a quote of him

Same thing with accutane people. Accutane is an active vitamin A, it is retinoic acid. it by passes all the regulations in retonoid pathway. Now go and see what is in retinoic pathway, ZINC takes retinol and converts to retinal, then you need NAD then you need aldehyde enzymes to convert it further down to retinoic acid. Accutane bypasses all of this. This tanks your zinc, NAD, b2, molybdenum, magnesium , b6. Same exact things needed for 3 beta hsd. Retinoic acid is what produces progesterone.

You see it is exactly the same. I hope you post this on some accutane forums. I hate that those people are suffering for many many years

By the way,

Semax is great when it works. Dont know if it has any long lasting benefits but when I take a dose in the morning I have my old energy back.
Cant say anything about libido etc but brain fog is pretty much gone.

Just wanted to let you know that i emailed David Healy at RxRisk. He was Very responsive and asked for a list of tests that people with PSSD could look at . The list i sent him was the following :

I will let you know how it goes. No word still from Stanford and no answer regarding my questions on whether they performed any Fibroscan to CFS patients.

On 9/13/2017 at 10:52 AM, Colinboko said:

So I have some type of abnormal protein on my SPE test. Doc wants to dive in more. Finally something that came up ABNORMAL

Feels good to know we're not fucking crazy sometimes

This result was normal for me. So does not appear to be universally in common. Any follow up on this yet?

On 7/9/2017 at 0:47 AM, mariovitali said:

Elevated copper can be a sign of Liver disease and i was found to have it elevated

Can you explain this again real quick? What was elevated? the ceruloplasmin? the serum copper? or were you calculating the two to look at free unbound copper? If ceruloplasmin is a little low this could be from chronic inflammation.

1 hour ago, mariovitali said:

1. Fibroscan (also known as Liver Elastography)

2. Serum Albumin

3. Serum Homocysteine

4. High Sensitivity CRP (hs-CRP)

5. Serum Total Bile Acids (TBA)

6. Serum Copper

7. Serum Ceruloplasmin

8. Serum Zinc

9. Erythrocyte Transketolase (for assessing Thiamine deficiency)

Whole blood thiamine testing is superior to currently available alternative tests for assessing thiamine status. Serum or plasma thiamine testing suffers from poor sensitivity and specificity, and <10% of blood thiamine is contained in plasma. Transketolase determination, once considered the most reliable means of assessing thiamine status, is now considered an inadequate method. The transketolase method is an indirect assessment. Since transketolase activity requires thiamin, decreased transketolase activity is presumed to be due to the decrease of thiamin. However, the test is somewhat nonspecific, as other factors may decrease transketolase activity. Transketolase is less sensitive than liquid chromatography-tandem mass spectrometry (LC-MS/MS), has poor precision, and specimen stability concerns.
https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/42356

Ive had a thiamine test. dont believe it was whole blood though. I think people would have figured this out from taking b vitamins. Still something else to check off I suppose. This is pretty prevalent in a normal diet though.

@guitarman01

Thanks for the link.

Although i did not know about this fact, transketolase is sought here not only because Thiamine status assessment, this was not discussed in my email however.

I think it would be beneficial for us to post which medications we've taken/ are taking and at what dosage, for how long and what symptoms have improved.

A a lot of medication is not available in the united states, but is available in other countries (Semax in Russia and Modafinil in Mexico, etc) that might help some of us find relief with brain fog, trouble sleeping or other post-Accutane side effects.

I find that the more research I do with "post-Accutane side effects " the more I get no where because there is no research there since we eventually fall into the category of CFS or IBD; meanwhile, while I search for current research and experimental treatment for CFS, Fybro, IBS and diesease that are autoimmune in nature, the further I get because that's where the research is and that's where our ultimate hope lies in treatment and potential recovery.

Whatever Accutane caused or triggered , whether it be an immune/mind-gut imbalance, the activation of a once latent virus in our system to activate ( Epstein Barr virus, for example), Increase or decrease in immune molecules, antibodies or cell proliferation or a combination of all or some, finding a correlation with us and them and getting down to the raw science of this will be our best bet to finding out what went wrong with us. People diagnosed with these chronic illnessesmay have had a differenttrigger other than Accutane, but we are pretty much on the same boat with them and if a treatment/ultimate cure is found for them, then we benefitas well

But again, that's hard since Accutane is a systematic medication that affects the entire body, which explains why some of us have relatively mild long-term effects while others were impacted more broadly. Still strange that a simple-minded dermatologist can prescribe a drug that affects the whole body. That's why they are completely dumbfounded when we present ourselves with joint pain/IBD or headaches, because in their minds this is just an "acne" drug, while in reality it can affect any part of the body and just like it can stop the oil glands from producing too muchoil to stop acne, it can also stop other important bodily functions that can account for all of our long term side effects

Anyways, I'm willing to experiment with the hard drugs first no antidepressants or pain killers, but drugs that inhibit certain immune molecules, anti-inflammatory/immuno therapy drugs, and drugs that have the ability to enhance cognitive function. I figured my best bet is turning off the switch or reversing what Accutane triggered early on before more damage is done or treatments become less effective as the mind/body accept this as a permanent state.

So any suggestions are welcome.

18 hours ago, hatetane said:

I received this via PM:

Hey, have seen gbolduev posts on rpforum?

Here is a quote of him

Same thing with accutane people. Accutane is an active vitamin A, it is retinoic acid. it by passes all the regulations in retonoid pathway. Now go and see what is in retinoic pathway, ZINC takes retinol and converts to retinal, then you need NAD then you need aldehyde enzymes to convert it further down to retinoic acid. Accutane bypasses all of this. This tanks your zinc, NAD, b2, molybdenum, magnesium , b6. Same exact things needed for 3 beta hsd. Retinoic acid is what produces progesterone.

You see it is exactly the same. I hope you post this on some accutane forums. I hate that those people are suffering for many many years

IT'S CANDIDA!!!!

ah ha ha ha ha ha ha ha..........

On 9/21/2017 at 1:44 PM, Jorcruz24 said:

Anyways, I'm willing to experiment with the hard drugs first ” no antidepressants or pain killers, but drugs that inhibit certain immune molecules, anti-inflammatory/immuno therapy drugs, and drugs that have the ability to enhance cognitive function. I figured my best bet is turning off the switch or reversing what Accutane triggered early on before more damage is done or treatments become less effective as the mind/body accept this as a permanent state. 

So any suggestions are welcome. 

Semax (us based)
[Edited link out]

You are looking into 2 area's
Area 1 = Nootropics
Area 2 = Nootropics+ (modafinil etc,)

Area 1 
This is the easy one, its legal and always good service from the websites who are selling it.
Use reddit to research any substance.
Some to experiment are

• Piracetam (alot of research)
• Semax (used in russia for stroke victims etc)
• Aniracetam

These websites (legal) I found to be the best ones
[Edited link out]
https://www.powdercity.com/
http://nootropicsdepot.com/

Area 2
This is the darkweb area. Im from the Netherlands so police dont care about "users" like me but I can order pretty much any medication from there. There is always more risk in this area with buying / customs / bad service etc but I never experienced it.
Follow these instructions from reddit and you will be entering a very cool area.
Just start with area 1  

[removed]
[removed]
 

10 hours ago, TrueJustice said:

IT'S CANDIDA!!!!

ah ha ha ha ha ha ha ha..........

Are you taking the piss again?

https://thetruthaboutcancer.com/the-truth-about-chemo/

Don't forget isotretinonin is a Chemotherapy agent .

http://london.ctvnews.ca/london-firms-launch-lawsuit-over-popular-acne-medication-1.1142440 http://www.latimes.com/nation/la-sci-accutane7-2009nov07-story.html

2 hours ago, hatetane said:

12 hours ago, TrueJustice said:

IT'S CANDIDA!!!!

ah ha ha ha ha ha ha ha..........

Are you taking the piss again?

Yeah I couldn't help it after listening to the video....I almost burst into tears.

I had to contrast it with that post saying "It's Candida" like if it was only that easy.

In all honesty this video is an excellent well thought out summary of how dangerous tane is, I'm certainly going to share it with some doctors I see - the ones where you hit a brick wall.

I should put on a USB stick and leave them a copy - not a bad way to spread the message perhaps!