Just thought you guys might be interested in reading this article regarding the lovely corrupt pharma....

[Edited link out]

Though I find it appalling that another drug company Cipher in Canada was approved on a new isotrentinon forumlation and it will be sold here in the U.S. too....

Hope all is well

On 7/23/2012 at 5:15 PM, dthtodrmtlgsts said:

On 7/23/2012 at 9:29 AM, Mahweeoh said:

On 7/22/2012 at 7:02 PM, jmsil said:

Really good that you're not going to go ahead with it yet. Sergio and a few others here have mentioned it, but have you tried the raw food diet (100% raw foods), or would be willing to try it? That diet works on every level because you are only putting into your body what nature intended. I know you said you are worried about your weight, but there are plenty of raw fatty foods to eat to maintain/gain weight. You may need to buy some raw food books from Amazon for some inspiration and how it all works. A good forum on raw food is:

[Edited link out]

I would love to do raw foods 100%, but it seems to late for me - my body just can't heal because Accutane does such damage that nothing works. If you have tried raw foods, then I'm not sure what else to suggest. But as you said that your acne went away for a bit when you changed your diet slightly, then diet could still be the key now. I know acne isn't something you want to have, but it's about choosing the lesser of two evils. You seriously don't want to risk getting permanent health problems and be part of this.

Ok...what about low dose accutane at 20 MG? Heard of that? I want to try things like that but...ugh. And it's so hard to gain weight on that diet i'm already small.What a stressful decision this has all been..

Please dont. Each and everyone of us could write a book about why you should not take it. Unfortunately we dont have the energy, just read these last 80 pages and make a decission. People are not making this up. I did not think this was possible before it hit me, but it did, sometimes still hard to realize... Yes people have been damaged by only 20 MG dosages. The pushers usually increase treatment time if they lower the dosage, but people have gotten serious issues with small dosages even after little time. I tried tetracycline first, by law you have to try "everything" before you take accutane. But the docs made extremely poor effort , put me on tetracycline for some weeks before throwing me on a high accutane dosage. If i had done any research before i went to the docs i would never have touched any of them, of course the docs who make millions selling it will promote it, thats why they went 10 years to school, to bee rich, its like taking the word of a used car salesman.

The main purpose of accutane was to lower the bloodsupply to the brain and hinder the creation of new cells. This could be beneficial for last stage braincancer tumors, as it would hinder further growth. Not a good thing for a young person without lifethreatening inopperatable tumors. The dermatologists are somewhat hesitant about telling you that disapperance of acne originally only was a side effect. There are group lawsuits in norway aslo, like there was 10 years ago also, they all loose, but soon they will win, the evidence and damaged people are pooling up, research in other countries are getting stronger, and in sweeden for example its beieng totally banned now i think. The doc who gave me the poison is an old fart that is member of head of dermatologists in norway, it is the same people who sell it and make money out of it that make the decission to ban or keep selling the stuff.

you should copy and paste your story in the pinned negative thread. I get soo down when I see another victim of this sh*t!

Have you been tested for U.C. / Chron's / Celiac or even Sarcoidsis? Had any vitamin def? Asking due to heart racing etc...

So even 10 mg would be harmful?

Yes, even 10mg is harmful . I took 10mg (1 cap. daily ) for 1 month only. I suffer from ulcerative colitis and have other side effects too. Try zenmed derma cleanse capsules it contains herbs and other chinees medicines which dont have any side effects and are

very helpful.

On 7/24/2012 at 10:01 AM, oli girl said:

Just thought you guys might be interested in reading this article regarding the lovely corrupt pharma....

[Edited link out]

Though I find it appalling that another drug company Cipher in Canada was approved on a new isotrentinon forumlation and it will be sold here in the U.S. too....

Hope all is well

On 7/23/2012 at 5:15 PM, dthtodrmtlgsts said:

On 7/23/2012 at 9:29 AM, Mahweeoh said:

On 7/22/2012 at 7:02 PM, jmsil said:

Really good that you're not going to go ahead with it yet. Sergio and a few others here have mentioned it, but have you tried the raw food diet (100% raw foods), or would be willing to try it? That diet works on every level because you are only putting into your body what nature intended. I know you said you are worried about your weight, but there are plenty of raw fatty foods to eat to maintain/gain weight. You may need to buy some raw food books from Amazon for some inspiration and how it all works. A good forum on raw food is:

[Edited link out]

I would love to do raw foods 100%, but it seems to late for me - my body just can't heal because Accutane does such damage that nothing works. If you have tried raw foods, then I'm not sure what else to suggest. But as you said that your acne went away for a bit when you changed your diet slightly, then diet could still be the key now. I know acne isn't something you want to have, but it's about choosing the lesser of two evils. You seriously don't want to risk getting permanent health problems and be part of this.

Ok...what about low dose accutane at 20 MG? Heard of that? I want to try things like that but...ugh. And it's so hard to gain weight on that diet i'm already small.What a stressful decision this has all been..

Please dont. Each and everyone of us could write a book about why you should not take it. Unfortunately we dont have the energy, just read these last 80 pages and make a decission. People are not making this up. I did not think this was possible before it hit me, but it did, sometimes still hard to realize... Yes people have been damaged by only 20 MG dosages. The pushers usually increase treatment time if they lower the dosage, but people have gotten serious issues with small dosages even after little time. I tried tetracycline first, by law you have to try "everything" before you take accutane. But the docs made extremely poor effort , put me on tetracycline for some weeks before throwing me on a high accutane dosage. If i had done any research before i went to the docs i would never have touched any of them, of course the docs who make millions selling it will promote it, thats why they went 10 years to school, to bee rich, its like taking the word of a used car salesman.

The main purpose of accutane was to lower the bloodsupply to the brain and hinder the creation of new cells. This could be beneficial for last stage braincancer tumors, as it would hinder further growth. Not a good thing for a young person without lifethreatening inopperatable tumors. The dermatologists are somewhat hesitant about telling you that disapperance of acne originally only was a side effect. There are group lawsuits in norway aslo, like there was 10 years ago also, they all loose, but soon they will win, the evidence and damaged people are pooling up, research in other countries are getting stronger, and in sweeden for example its beieng totally banned now i think. The doc who gave me the poison is an old fart that is member of head of dermatologists in norway, it is the same people who sell it and make money out of it that make the decission to ban or keep selling the stuff.

you should copy and paste your story in the pinned negative thread. I get soo down when I see another victim of this sh*t!

Have you been tested for U.C. / Chron's / Celiac or even Sarcoidsis? Had any vitamin def? Asking due to heart racing etc...

I will move negative stuff to the negative tread. If there is such a tread i recommend people who are considering the drug to read that also.

We should post bloodtests or other things that help us see a pattern here instead.

Going through my bloodwork i see that my b12 level was very low, and as i have been feeling better it had come alittle bit up. The docs have not reacted to this because it is within the norwegian minimum level, at 200. I read that some other countries have their minimum at 550, and that you can get symptomatical below this(i was 299, and probably lower before i tested it, felt better at 350 a year afterwards).

Doc appointment tomorrow going to get my A, D and kalsium results. And demand sublingual methylcobalamin b12 to raise my b12 atleast above 600.

I tried not eating gluten for a month and saw no results(maybe to short). But i dont feel worse when eating it. My stomach is very upset anyway, i cut dairy aswell without success. Actually feel better drinking loads of kefir. Have not been tested for UC or chrons but i dont feel pain in that area, Sarcoidsis i dont think either. I acquired a hiatial hernia and reflux though. And lots of gallstones, very small, i should get a ultrasound to check if their still there. Probably should check for kidneystones too.

But i dont think the stones and reflux is responsible for the rest of my sideeffects.

I also bet my D vitamin is low. Will know for sure tomorrow.

I have even had a hair mineral analysis that i will get the results of in august..

My vitamin b12 level is also low only 175 and my blood calcium is high(10.4 ) .We all have same kind of symptoms . I also had stool culture

test ,in which I am found resistant to many antibiotics.

My vitamin b12 level is also low only 175 and my blood calcium is high(10.4 ) .We all have same kind of symptoms . I also had stool culture

test ,in which I am found resistant to many antibiotics.

 

Aim to get that up to trice the value man and see how u feel. I think that is dangerously low. It could be causing lots of weird side effects. Ask your doc for sublingual methylcobalamin, it will be absorbed even if your stomach is upset. Regular cyanocobalamin has proven to not be as good.

What are your thyroid levels? looking at my tests i had s-free t4 = 19,6pmol/L and s-free t3 = 6.1pmol/L Good or bad? they seem to be in upper normal range. Should i ask for some other tests?

and TSH is 0,95 mU/L. Which is low normal range. Dont know much about these ranges, but i do know docs operate with wrong ranges for others things so..

I have not got them checked

So even 10 mg would be harmful?

 

Like I mentioned, I was mostly on 20mg every other day, which is basically like 10mg a day. Someone on here posted way back last September time on this post and said he had permanent side effects after only taking 20mg dose for about 10 days before having to stop. I didn't know much about how dosages worked, but now it seems that higher doses will probably keep the acne away for longer, maybe permanently (but definately not guarenteed). The smaller doses, you are probably more likely to have the acne come back sooner after taking it. Whenever I stopped taking Accutane, the acne came back 2-3 weeks later. It's not worth it.

Check out this video if you haven't seen it:

If she can say no to Accutane, so can you.

 

So even 10 mg would be harmful?

 

 

Like I mentioned, I was mostly on 20mg every other day, which is basically like 10mg a day. Someone on here posted way back last September time on this post and said he had permanent side effects after only taking 20mg dose for about 10 days before having to stop. I didn't know much about how dosages worked, but now it seems that higher doses will probably keep the acne away for longer, maybe permanently (but definately not guarenteed). The smaller doses, you are probably more likely to have the acne come back sooner after taking it. Whenever I stopped taking Accutane, the acne came back 2-3 weeks later. It's not worth it.

 

Check out this video if you haven't seen it:

 

 

 

If she can say no to Accutane, so can you.

 

Doesn't she advertise stuff? Oh well. Anyway, I get the picture. I'll avoid it for a good long while and see if I can clear it. I noticed it was worse AFTER my parathyroid surgery ( before it was at least manageable ) so maybe it will go away. Also today, I've been having horrid digestive problems and have to go to urgent care ( and breaking out since they've started too ) so there's probably my answer right there. Parathyroid disease can cause pancreatitis. Seems like acne is definitely connected to liver and gallbladder and MAY be caused by parathyroid disease ( after all when the glands go bad, they surge high amounts of parathyroid hormone, more than the body can handle. This is actually "cleaved" in the liver).

I will also say one thing--noticing the complaints on blood calcium levels, there's also your answer right there. It's clear Accutane has a high correlation with parathyroid disease ( I cannot prove causation ) but the bone issue's and calcium issues, fatigue and brain fog are all parathyroid symptoms. You should ALL be tested. Like I said, if Accutane screws up a babies parathyroid glands, it probably inhibits yours ( or those with acne had a genetic preposition to parathyroid problems to begin with, like me) and Accutane is able to bring that out. If acne were caused by genetic parathyroid problems to begin with ( which is actually a remarkably common yet misunderstood endocrine disorder ) then it would make sense why accutane is possibly able to hinder it due to changing those sebaceous glands, yet some people's acne still comes back. This is my personal observation based on what I know about parathyroid disease ( and I'm the resident expert unfortunately because I had to be ) so it wouldn't hurt you guys to do some research on it, you know?

went to my new doc today. Even dumber than my last. Recommended that i ate lots of broccoli to increase my b12 level. I am not lying, this is the doctors recomandation. Sounds to dumb to be true that a doc would say that. Anyone interested in nutrition would know there is absolutely no vitamin b12 in that stuff.

He refused to prescribe me methylcobalamin, and dont think he really know what it is

Atleast i got the results from my last bloodtest:

s-kalsium = 84. range=60-105. ok

s-vitamin d = 122 range=50-150 ok. I wonder if this was temporary elevated due to my bigtime dosaging of vitamin d that started the week before, but did not take it the day before testing. Its weird how i could have so much vit D, maybe some was still in my blood stream from supplements.? lacking magnesium to get it into the bones? or maybe i am healthy when it comes to vitamin D. Did feel better taking it :s drank a small bottle of liquid D in two weeks and snacking 3/4 of a magnesium package. Dont have the exact mgs here.

s-vitamin a = 2.7 range= >0,7 ok?:S dont know what max is.

If these meassurings are correct my thyroids is ok.

What about bloodsugar issues, how to check this? thats next on my check list. parrallel to:

the only thing that seems to be lacking in me now is b12. Which my doc dont want to give me. From what i read it should be higher. Going to england this weekend, hoping i can buy methylcobalamin in the pharmacies there. Or else i will drive to sweeden later and try and get it there.

So even 10 mg would be harmful?

 

Dude you have a parathyroid disorder! I believe if I am correct here in the U.S. Hypercalcemia is listed as a side effect and we all know that Osteopenia is a side effect!

Accutane is not the miracle drug!

What are your thyroid levels? looking at my tests i had s-free t4 = 19,6pmol/L and s-free t3 = 6.1pmol/L Good or bad? they seem to be in upper normal range. Should i ask for some other tests?

 

and TSH is 0,95 mU/L. Which is low normal range. Dont know much about these ranges, but i do know docs operate with wrong ranges for others things so..

 

Are you saying TSH is .95 if so that is on the low normal range as .56 is considered hyperthyroid, BUT everyone is diffrent. I have Graves and I will have to relook at the t4 and t3 as thoose seem a little high! Subclinical hyperthyroid?????? Could be your issue or part

 

So even 10 mg would be harmful?

 

 

Dude you have a parathyroid disorder! I believe if I am correct here in the U.S. Hypercalcemia is listed as a side effect and we all know that Osteopenia is a side effect!

 

Accutane is not the miracle drug!

 

 

What are your thyroid levels? looking at my tests i had s-free t4 = 19,6pmol/L and s-free t3 = 6.1pmol/L Good or bad? they seem to be in upper normal range. Should i ask for some other tests?

 

and TSH is 0,95 mU/L. Which is low normal range. Dont know much about these ranges, but i do know docs operate with wrong ranges for others things so..

 

 

Are you saying TSH is .95 if so that is on the low normal range as .56 is considered hyperthyroid, BUT everyone is diffrent. I have Graves and I will have to relook at the t4 and t3 as thoose seem a little high! Subclinical hyperthyroid?????? Could be your issue or part

 

Yes TSH was .95. And my kalsium was ok, middle range, nothing suspicious about my kalsium. But still not sure on thyroid, a little bit more complicated to read about than vitamin ranges, but its interesting.

Noticed "fS-vitamin" D was not tested eventhough there is a field on the resultsheet for it. Only "s-vtamin d". Did not know there were several types, other than d2,d3.

I just read through your side effects and most of thoose are related to Hyperthyroid/ Grave's Disease! Need to find a good doc fast my friend...Do you have a lump in your throat is it visibly swollen? Goiter?

As for the Negative thread it is in the Accutane posts up top in the pinned thread area! I'll post a link if you can't find it.

Please note something about parathyroid disease. If you have an elevated, or even mildly elevated calcium and low vitamin D, DO NOT TAKE VITAMIN D. Why? Because it will drive your calcium up higher, making you feel more like shit. It's just basic science. Some people have had strokes from this because their calcium was too high. It will not fix the underlying problem, which is usually a parathyroid tumor or parathyroid enlargement.

So you're going to have to investigate this extremely. If your calcium is 10.3-10.4 and HIGHER than that, you most likely have a parathyroid problem. It doesn't not have to be higher than 10.3, and your PTH can oftentimes be NORMAL. So avoid doctors who say otherwise, because it isn't reality. Other conditions are MUCH more rare than parathyroid disease, including sarcoidosis. Secondary hyperparathyroidism is only caused by kidney dialysis patients only.

So it sounds like the symptoms you all share, and elevated calcium, you'd have what's called primary hyperparathyroidism. Also, scans will never see the tumor or enlargement because it is all going on BEHIND the lobe of the thyroid. Unless your tumor was humongous, which is likely isn't, it won't show up like mine didn't or my mother's. But it's still doing damage to your body no matter how large it is.

I will never find answers or solutions.

Got my results back. My calcium is still high but my parathyroid hormone is low.

My bilirubin is still high.

Depressed.

Frustrated.

Hopeless.

I will never find answers or solutions.

 

Got my results back. My calcium is still high but my parathyroid hormone is low.

 

My bilirubin is still high.

 

Depressed.

Frustrated.

Hopeless.

 

Then it's clear you most likely have parathyroid disease. Elevated levels of calcium will affect the liver and also can cause pancreatitis. If your calcium is testing consistently high then something is up with your parathyroid gland's regulation. I'm 100% convinced now that Accutane is the cause. Well, on to other remedies for myself I suppose. The desperation for clear skin is a dangerous one.

But you are going to have to pursue your diagnosis, because parathyroid disease causes ostepenia/osteoperosis in even the youngest of patients and a variety of dangerous conditions if left untreated. So instead of being depressed, as I was when doctors wouldn't listen, push and keep calling around to find somebody. Because the only "cure" is indeed surgery. I never thought that acne drug was related to a disease like mine, it's very interesting. Please don't give up any of you...would you like to join the Facebook parathyroid support page and just post with us to tell your symptoms and lab results? Immensely helpful people there. Without 'em, I wouldn't have been able to confirm the diagnosis.

Here's my theory on Accutane, so hear me out guys as I genuinely want to help and try to put your depression aside for a moment. You say that it hinders cell growth of cancers. I've looked up a lot on it myself. It causes apoptosis correct? Then this is one drug that should definitely be studied in the sense that can directly alter the body on a cellular level ( very dangerous to endocrine organs) but more specifically the parathyroid glands as they are one of the most sensitive regulators in the body and are exposed to a high amount of vascular blood supply, and are highly active. This allows them to react accordingly to how high your calcium levels are on any given day and put out the right amount of parathyroid hormone. True, other endocrine organs are highly active. But you have up to 4 ( sometimes more ) parathyroid glands and thus your chances of them going bad from this med seem increased.

Here's a quick definition of Apoptosis I pulled:

"Apoptosis^[1][2] is the process of programmed cell death (PCD) that may occur in multicellular organisms.^[3]Biochemicalevents lead to characteristic cell changes (morphology) and death" ( Sorry for the wiki use, but it's a good definition).

Now knowing that it causes cell changes, let's take a look at what my form of hyperparathyroid disease was. I had something called "parathyroid hyperplasia." This is when a ball of cells in the parathyroid glands DNA goes haywire, and begins to multiply uncontrollably, causing "enlargement" of the once small, rice-sized parathyroid gland, and causes it to produce FAR too much parathyroid hormone, making the person feel bad with high blood calcium ( even calcium no higher than 10.4). If Accutane were to cause changes in the cells to normal healthy parathyroid glands ( or even to individuals prone genetically to the disease ) it's not unusual to assume that perhaps instead of cell death, what we're looking at is the cells being stimulated by the medication's effect. Looking at my pathology report, I had a "hypercellular" left parathyroid gland and the rest were mildly hypercellular. This means that the ball of cells in those parathyroid glands were stimulated ( either by genetics or otherwise ) to multiply uncontrolled, and there was nothing I could do about it.

Now with that said, everyone is NOT me. But I mention it because your labs look similar. In fact, I had low b12. This is common in parathyroid patients--go ask on those Facebook boards even. Nobody is sure why b12 lowers with parathyroid disease but is remarkably common. Vitamin D also STAYS low with the disease because of your body's desire to protect you from that high calcium. "Mild" hypercalcemia is also a staple of parathyroid disease. It actually doesn't matter "how high" the calcium is--the fact that it's high means something's already been done to the parathyroid glands.

So instead of being depressed, why don't you go investigate? If I hadn't, I wouldn't have gotten results. I don't think you're permanently damaged from Accutane. But keep in mind parathyroid disease wrecks slow damage to your body, and parathyroid patients are frequently depressed or mistakenly given depression pills, when in reality there is a physiological process going on. Oh shiet, I forgot. Accutane causes depression. HMM.

Interesting excerpt from Parathyroid.com:

"DEPRESSION IN PATIENTS WITH HYPERPARATHYROIDISM. Another frequent symptom of parathyroid disease is depression. Just under 48% of our last 18,000 patients were either diagnosed with "depression" or were put on an anti-depressant within the previous 2 years. The vast majority of patients have some depression symptoms such as lack of energy, sadness, inability to sleep well, anxiety, nervousness, irritability, (etc) that their doctor felt was consistent with the diagnosis of "depression" so they were put on an anti-depressant medication (examples: Effexor, Zoloft, Paxil, Prozac, Lexapro, Wellbutrin, Celexa, etc). Thus, because hyperparathyroidism is a rare problem, most doctors are not aware that depression, tiredness, lack of energy, etc are some of the most common symptoms of this disease--so they treat the symptoms instead of treating the disease! Sadly, your doctor can miss the proper diagnosis of hyperparathyroidism because they don't see this disease very often. Your typical doctor sees patients with depression all the time, but they see someone with parathyroid disease about as often as the Red Sox win the World Series!"

Regarding bone pain, something Accutane users also have:

BONE PAIN IN PATIENTS WITH HYPERPARATHYROIDISM. Patients with persistently elevated calcium levels due to overproduction of parathyroid hormone can also have complaints of bone pain. Bone pain is due to the activity of the parathyroid hormone on the bones, causing the calcium to be absorbed OUT of the bones. In the severe form of parathyroid disease--or parathyroid disease that has been present for several years, bones can give up so much of their calcium that the bones become brittle and break (osteoporosis and osteopenia). This problem is even more of a concern in older patients. Bones can also have small hemorrhages within their center which will cause bone pain. This is why many patients with parathyroid disease will have a DEXA bone density scan performed by their doctor. The doctor is looking to see how much calcium has already been lost due to the excess parathyroid hormone.

How about a full symptoms list, which seems to describe every Accutane patient I've been looking at on the negative portion of the site. I'll bold the ones that stand out. :/

-Loss of energy. Don't feel like doing much. Tired all the time. Chronic fatigue.

-Just don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad.

-Feel old. Don't have the interest in things that you used to.

-Can't concentrate, or can't keep your concentration like in the past.

-Depression.

-Osteoporosis and Osteopenia.

-Bones hurt; typically it's bones in the legs and arms but can be most bones.

-Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep.

-Tired during the day and frequently feel like you want a nap (but naps don't help).

-Spouse claims you are more irritable and harder to get along with (cranky, bitchy).

-Forget simple things that you used to remember very easily (worsening memory).

-Gastric acid reflux; heartburn; GERD.

-Decrease in sex drive ( bolded for the men here )

-Thinning hair (predominately in middle aged females on the front part of the scalp).

-Kidney Stones (and eventually kidney failure, this happens later in the disease )

-High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).

-Recurrent Headaches (usually patients under the age of 40).

-Heart Palpitations (arrhythmias). Typically atrial arrhythmias.

-Atrial Fibrillation (rapid heart rate, often requiring blood thinners and pacemakers).

-High liver function tests (liver blood tests).

And not everybody gets kidney stones either. I didn't because I was lucky to catch the disease early. My mother was not so lucky. Yay for stupid doctors.

Update from me:

1 - I had another blood test, following my last, for my Thyroid. I got a call from the Doc's and they just said my Thyroid is now back in range. Doesn't really make sense, because I haven't done anything for it to get back in range. Not really... I took some supplements called 'Thyroid energy' and they didn't make any difference to the way I feel. Personally, I have very little faith in the accuracy of blood tests. Without sounding paranoid, I think it's very likely my thyroid is still buggered.

2 - I am going to begin counselling. Of course, I have doubts about how effective this will be. It's not like I'm depressed because of something that happened just in the past, like rape or abuse. It's something that's been going on constantly for the last 6+ years. However, the lady I met with seemed really great. I've seen a therapist before and, frankly, she was crap. She didn't care about me and it was just a job to her. This lady seemed passionate about what she did and we seem to click well. My appointments won't necessarily be with her, but the counselling is free. I'm actually on 2 waiting lists now. Typically, you have to wait for about 8-10 weeks for an appointment. I'll have to deal with time-off when it comes to it.

3 - A question for everyone. Please answer. Who here suffers from social anxiety/social phobia? For me, this is something that I feel is wrecking my life. It's making me feel like I can't work, and it's making my future as a Musician seem impossible. Rather than excitement, I have a lot of fear about September (when I go to a Music College). I'm trying to figure out if this was caused by Accutane, physically... Like the depression while on the drug. I first noticed that I was detaching myself from others while on the drug, but when I look back at my past, I see that I was always quite shy, self-conscious and wanting other people's approval. I think low self-esteem is at the root of social anxiety and, of course, sexual dysfunction, dry-eye syndrome, hair-loss and whatever else have contributed to my low self-esteem and feelings of inadequacy.

4 - Regarding the social anxiety, I am reading books on it. I already mentioned 'A life less anxious', which is a very good book. I'm currently reading 'Fear in no longer my reality' and after that, I have 'Diagonally parked in a parallel universe'. I can really relate to the one I'm reading at the moment. I was afraid that the sufferer would just need to realise his thoughts were irrational. But, like me, he knew that he shouldn't be afraid of people. He says 'If I can get free of social anxiety, so can you' and this gives me hope. The counselling could help with this too.

5 - I'm going to write another book. I have a name for it, which I think is good. Thing is, I'm going to split the book into two parts. The first part is about my social anxiety and depression - like a memoir (I'm not going to go on and on about Accutane in it, but it'll get a few mentions). The second part is how I overcame those things. Of course, I can't write that part yet, though I do have some good ideas after reading dozens of self-help books and trying stuff out myself. My plan is, I will face this thing head on right now. I just need to know what direction to walk in. I want to make big progress before my college course, and I'm hoping that doing what I love will lead to me feeling happier. My other fear at the moment is my concentration/memory. I'm like a zombie half of the time at work. My boss will say 'Remember... I told you this yesterday' and I don't remember. To be fair, there is quite a lot to remember but my brain doesn't seem to retain information too well anymore. I often feel too tired to remember song lyrics, and I really don't want to watch my potential get crushed my this.

6 - My supplements came yesterday. The probiotics, colostrum and bicarbonate of soda that I ordered from iHerb. I need to pick them up and pay a fee of 18.10.. Bloody joke! My parcels seem to get caught half of the time by customs. Another is due for delivery in the next two weeks.. Hopefully that'll avoid it. Supplements really aren't cheap though.. I've tried enough to know that these may not work at all, like those of the past. In that case, I will ditch everything and just see if my body manages by itself. I still think Vitamin C is good, so will take this. But vitamin D and everything else haven't helped so I think they're probably useless. I'm not even sure where they get the ingredients for Vitamins. Like, where does vitamin D come from? Or is it just made in a lab? I wonder whether supplements are more of a hindrance than a help.

7 - Once again, I think that C.F.S book I mentioned is worth reading for us with energy issues. It makes you realise that things could be worse, but also is very relatable to our problems. Most of the stories are very well written, though a couple are a bit 'out there'. Something that came up a few times was 'Mickel Therapy'. Some people with C.F.S/M.E claim that after a session or two of Mickel therapy, they were healed. I wasn't sure about it and did a bit of research. For something that was invented in 2004, there is surprisingly very little detail about it on google. I spoke to a lady who gives out this therapy where I live. She seemed genuine and said that it had worked for her after suffering from M.E for 7 years. I spoke to her on the phone for 30 minutes. Afterwards is when I had doubts. 80 for an hour seemed a lot of money. Even on the Mickel therapy site, there is no detail of what is involved. It's possible your entirely naked for all I know. The guy (Dr. Mickel) seems, again, very genuine and funny too. You can see him on YouTube. But, I've learned in the past that some people (and I don't just mean Roche) will screw over innocent people who will do anything to get better. Might not be the case, but I found a forum related to this therapy and after spending hundreds of pounds, many people still didn't know what the therapy was. By the sounds of it, it's just teaching you to follow your dreams and express yourself. How this is supposed to heal years of chronic illness, I have no idea. I'm not going to waste my money on something that is potentially a scam though. I was interested in it because it mentioned depression and anxiety on the site. There is a book written by the author and, on Amazon, all of the 5 star reviews are written by people who have never reviewed anything else. This always makes me suspicious.. Much like with this book: https://www.amazon.com/Aspire-Discovering-Purpose-Through-ebook/dp/B003100URE/

8 - I think I read from you, JMSIL, on another forum somewhere - That Cayenne didn't go down well? Someone in the C.F.S book mentioned this helped to repair their adrenals and thyroid. They said you had to be careful with how you do it though. Apparently, they read about it on Curezone. I'd be interested in trying it.

9 - Blood sugar balance is something I see as important in recovery. I will try to learn a bit more about this. PH Balance is another thing.

That's pretty much all I have to say for now.

A key, for us, is to relax more. Not in the sense that we should stop worrying (because that's easier said than done, although remembering we can't change the past is important) but we shouldn't push ourselves too much.

A brisk walk or some light sport is good exercise, but we should rest more than we do.

Late nights aren't for me at the moment. I pay for it the next day.

Stef

8 - I think I read from you, JMSIL, on another forum somewhere - That Cayenne didn't go down well? Someone in the C.F.S book mentioned this helped to repair their adrenals and thyroid. They said you had to be careful with how you do it though. Apparently, they read about it on Curezone. I'd be interested in trying it.

 

I think I may of mentioned it here too, but I may of also mentioned it on the Prescriptions Drugs thread too when I posted in January/February. Yes - I don't react well to cayenne Indigo. When I have continually taken it in the past, I get numb/tingly sensations in my body, including my chest area. I can get pains around my chest area if I extend my arms out and generally have muscle aches in my body. It wipes me of energy. Yet you would think a food that would increase circulation wouldn't d this. I don't know why it does it. I'm the same with garlic and any other hot/spicy food. Something is badly wrong. I read someone else why took Accutane have the same problem, but not many. So it might be aright for you to try. I remember Chico saying about spicy foods having a bad effect for Accutane sufferers, but can't remember if he was effected badly by them.

I'll just answer you on the social anxiety, but again I think I've mentioned this before Indigo. I am basically housebound, apart from two days a week where I work for my Dad, but I don't really count that as going out. I HATE this, but don't see what I can do. The rosacea started it all off (becoming self conscious) and red looking eyes, bad hair quality (things you say you also have), amongst other things which have really brought me down. Interestingly enough, I wasn't self conscious enough when I had acne and before Accutane to stop 'living'.

On 7/29/2012 at 3:02 AM, jmsil said:

On 7/28/2012 at 3:52 PM, IndigoRush said:

8 - I think I read from you, JMSIL, on another forum somewhere - That Cayenne didn't go down well? Someone in the C.F.S book mentioned this helped to repair their adrenals and thyroid. They said you had to be careful with how you do it though. Apparently, they read about it on Curezone. I'd be interested in trying it.

I think I may of mentioned it here too, but I may of also mentioned it on the Prescriptions Drugs thread too when I posted in January/February. Yes - I don't react well to cayenne Indigo. When I have continually taken it in the past, I get numb/tingly sensations in my body, including my chest area. I can get pains around my chest area if I extend my arms out and generally have muscle aches in my body. It wipes me of energy. Yet you would think a food that would increase circulation wouldn't d this. I don't know why it does it. I'm the same with garlic and any other hot/spicy food. Something is badly wrong. I read someone else why took Accutane have the same problem, but not many. So it might be aright for you to try. I remember Chico saying about spicy foods having a bad effect for Accutane sufferers, but can't remember if he was effected badly by them.

I'll just answer you on the social anxiety, but again I think I've mentioned this before Indigo. I am basically housebound, apart from two days a week where I work for my Dad, but I don't really count that as going out. I HATE this, but don't see what I can do. The rosacea started it all off (becoming self conscious) and red looking eyes, bad hair quality (things you say you also have), amongst other things which have really brought me down. Interestingly enough, I wasn't self conscious enough when I had acne and before Accutane to stop 'living'.

Would you say you were shy before Accutane, and before Acne?

[Edited link out]

Someone messaged me on here and said that the above helped to get rid of his dry eyes/joint issues (while he takes it).

Fairly expensive but he said it lasts him a couple of months.

I picked up my supplements from the post office today, so will see if they help at all.

I won't order Baxyl (as above) yet, because I can't afford it.

If anyone else wants to trial it though, feel free and let me know if it helps.

Jmsil, remind me where in England you live?

Me and another guy from the forum were going to meet in London at one point. Just to MEET someone else who knows what this is like.

I don't have the money for it any time soon, but perhaps you could come too.

On the social anxiety...

Are you doing anything to tackle this?

I got some good notes together today, so will make a YouTube video soon giving some advice.

It's something that we need to face head-on though.

Hiding away just gives fear power over us. It keeps us trapped.

We can't hide away forever, unless we want to watch our lives go by without experiencing the good stuff.

But hey, I know how you feel.

I saw the new Batman film today.

It was fantastic. Really amazing.

I felt good after.

When I came home, I ended up looking on some Accutane forums and reading about people with side effects 25 years on.

Made me feel hopeless again.

I hate that it has that kind of power over how I feel.

My girlfriend kept asking me to go out with her, clubbing (with her friends from work).

I kept saying No, and it just made me feel shit.

Because it made me realise how bad this is.

How it's a massive thing to just go out.

I didn't want to go because I'm too self-conscious to dance.

A few people she works with are my friends, who I've hardly seen since school.

I'm embarassed by what I've become. A recluse with social anxiety. I'm scared of social interaction.

I feel it'd be good for nobody if I came out.

I'd end up feeling miserable and ruining the night for my girlfriend.

It's a tricky one.

I know I need to get myself 'out there' but when I'm in my down moods it's the last thing I want to do.

Sometimes it seems there's no point anymore.

I guess I've learned to be helpless.

I've got so much 'evidence' that whatever I try makes no difference to the end result.

It feels like I'm no longer destined to be happy.

But I know that's not true.

When I'm really depressed, and I'm sure the same happens to you guys, I forget that I'll ever be happy again.

Sure, I can't say I've been truly happy in a long time.

But emotions change like that.

You have to put up with the rain to appreciate the rainbow, right?

It's incredibly hard going through something like this, because not only do we lose confidence in ourselves, but we feel like a burden to others.

Our minds start to tell us we'd be better off dead.

That our family and friends would be better without us.

I've become afraid that people will tire of me and since the ordeal with my girlfriend (if you saw the video), I find it hard to remain trustful.

Sometimes I feel like the only way with this is by myself.

That way, nobody else gets hurt.

It's been 30 years since this drug was released and some people have had side effects for that long.

But we shouldn't let this mean we have no hope.

We have to focus on the (few) positive recoveries.

I'm still hanging out for the documentary.

It might change everything.

It might help to get this drug off the market.

I think we should quit trying to convince people on this forum to avoid the drug.

I think it's a waste of time.

They've read through nearly 80 pages of horror and they still consider it.

It's up to them.

I can't be bothered anymore.

I still say you guys should make a YouTube video though.

Even if you don't show your face on camera.

It's up to you, and I've said it many times, but I feel like it's our duty.

We know what this has done to us, so we should do what we can to protect other innocent lives.

It may be too late for us, but it's not too late to save a lot of teenagers with mild acne.

Please just think about it.

The most important thing for us in to keep going.

Sometimes I don't know why.

But then I see some old family pictures and realise that my family love me.

Although I forget that sometimes. Sometimes I think they don't know me anymore.

But we cannot give up.

Suicide is not the right thing to do.

Avoid horror stories like the plague.

It becomes an obsession when you sit there, reading story after story about how people have been ruined by this drug.

Survivor. Not a Victim, remember?

James... I really want to help you.

I know you're scared, but you can talk to me.

I don't want to see this drug ruin you or anyone else.

I continue to have down days because of Accutane.

I can't always help that.

Sometimes I just feel 'beat' by it.

But a day or two later, I fight back again.

I want to remind you all again how well you're doing.

You may feel like your family are no longer proud of you.

You may feel that you've accomplished nothing and are a loser.

You're really not.

I am proud of you, and I don't care if that sounds cheesy.

If anyone from the UK wants to talk on the phone, any time, message me.

I don't have rosacea, but I understand it could be an embarrasing condition.

I'm sorry you have to be going through this.

But please don't let it stop you from living.

It can be easy to forget, but there are loads of people worse of than us.

Many people in those terrible circumstances go on to become successful.

Why not you?

I've always been a bit shy, even before acne, but being shy is a common/normal. Now is just off-the-scale wrong. I'm doing nothing to tackle the social anxiety/phobia. I need some sort of mircale for the things I mentioned to just 'go', for things to change. For me, personally, don't see how seeing someone will help. If that root cause is still there, then I can only see it being a tempory solution at best (but that's just my opinion based on me).

Saying 'No' when others ask you to go out and do things with them - I'm an expert on this. The guilt eats you up. You do feel very bad. Some could view it as being rude - I hope not. When I had a girlfriend, in the end she left because I kept saying 'No'. I'd prefer to watch a DVD in the evening rather then go out. I didn't mention Accutane, or my side effects (apart from rosacea) much at all, and maybe this was a mistake. Things can be bad, but you want to be as 'normal' as possible.

I had a friend contact me through the chat function on Facebook not long ago. Almost 10 years since I last saw him (at school). It was when I left school (before going into the Sixth Form) that I started the drug, so he knew the 'old' me. On the chat he opened with the line 'Hello Stranger', but I just couldn't answer anyhthing back, and basically ignored it, like I was away from the computer. So much has happened since then, and when he would of asked what I've been up to since, it would of been like a sword through the heart trying to answer, which is why I blanked him. More guilt (and emotional pain).

I live in Kent Indigo. I wouldn't worry about me though. I'm a hopeless case. The chances of me meeting up with anyone, is about zero percent as it stands. Like I said, I need one of those miraculous recoveries which I don't think is even possible now.

Wish I could be more damn positive. I'm off (to bed) at 10pm on a Saturday night. If it wasn't be this acne forum, it would of been 9pm. Oh dear...

Hmmm...

There is no denying that this drug can fuck you up.

But you need to help yourself before it's too late.

Without trying to scare you, where do you think you'll be in 10 years if you don't get this sorted?

Dead isn't a very good answer.

I wish I could cure you, myself and everyone else of these side effects, but for now I cannot.

There isn't a way to know if these side effects are permanent, or if something will turn up to help.

But you need to realise that you're blocking yourself off from happiness.

I don't want to butt in, but I feel I have to say something.

By saying the only way you'll ever be happy again is if you are healthy and free of these side effects, you're deciding to be a victim and leaving your life to chance.

You need to take some control, and you need to do so as soon as possible.

The chances of you meeting up with anyone is only zero percent if you decide so.

If you've already decided you're a hopeless case, then that's up to you.

But you don't have to be that way.

Only you can decide what you're worthy of.

Are you worthy of living a life of happiness and potential, or do you just deserve to feel miserable?

Are you willing to fight for your life?

Or are you going to let this destroy your future as well as your past?

For a long time I put off counselling.

What's the point, I thought.

It still may not help.

Some therapists aren't any good. Some are.

They can't fix your health problems, but they can help you to deal with the negative emotions that you feel trapped by.

You don't need a miraculous recovery to be able to live your life again.

You just need to accept that things aren't the way they used to be.

We all do.

We all have to accept we can't do all the things we'd like to, without feeling tired afterwards.

You're a smart guy. I can tell that.

But in regards to this, you're being a silly bum.

I know it sucks, but you need to admit that you need help.

You're dying inside and you know it.

Some would say a situation has no control over you.

If I shot your Mum and fed a grenade to your dog, I'm sure you would automatically feel pretty bad.

But with this, you are in control.

By deciding to stay in your room and carry on hiding, you are choosing to remain trapped.

I still check this forum every day, but it's not all I do.

I don't know what else to say to help you, but you need to realise that it's time to stop denying the situation.

It's time to get better, regardless of your health.

You may find that your health recovers partly once you start to feel happy.

After years of buying supplements, and spending so much money on your physical health, I think you should realise that this needs to be approached differently.

Once again, I don't mean to invade on your life, or to judge you.

But you need help, and I want you to take control again.

If not for yourself, for your parents who love you and raised you well.

Awww! *HUGS*

I appreciate your help Indigo. But if only my problems I think you were referring too (social anxiety/phobia) were it. Have I ever told you that eyes are so light sensitive that I print out messages from here instead of reading them on the screen? That I can no longer play on the Xbox or anything because it hurts my eyes too much, and gives me headaches now (this has been going on for 7 years). If I watch TV, it has to be sparingly (mainly listening to it). I mentioned not long ago that I can't even breakdown a (probiotic) capsule without my digestion going haywire now, so I can't even take everything to try and make myself better. The list is endless. So no, I don't have control, as these things aren't reversible (and always getting worse).

I appreciate your help Indigo. But if only my problems I think you were referring too (social anxiety/phobia) were it. Have I ever told you that eyes are so light sensitive that I print out messages from here instead of reading them on the screen? That I can no longer play on the Xbox or anything because it hurts my eyes too much, and gives me headaches now (this has been going on for 7 years). If I watch TV, it has to be sparingly (mainly listening to it). I mentioned not long ago that I can't even breakdown a (probiotic) capsule without my digestion going haywire now, so I can't even take everything to try and make myself better. The list is endless. So no, I don't have control, as these things aren't reversible (and always getting worse).

 

Never lose hope man.

I believe these things are reversible... We just don't know the answer yet.

Maybe accutaneispoison's theory of using cannibas will prove helpful... In which case, I'm not sure where that leaves us.

I don't know about you guys, but I haven't got many contacts that can provide me with drugs.

Anyway, I know what you mean with the looking at the TV/bright lights thing.

I get it occasionally. For a while, I'd get it fairly regularly.

Not nice, and I'm not saying it is.

But you have to step out of the victim chair and take some control.

Tinted glasses could help, but I'm guessing.

Some eye doctors may not be too good, but you can probably kind someone who is.

I used to play around with lots of different eye drops, and they'd make my eyes sting.

My eyes are terrible when I wake up. It's embarrassing, even.

I use 'MSM + silver' eye drops a couple of times a day.

They're as good as any I've tried and you can use the bottle for 90 days before throwing it out (unlike the normal one's that last 28 days).

Like me, I'm sure you're sick of throwing away good money on supplements and what-not, but maybe we'll find one that works one day.

Because of what that guy said to me, I'm going to try BAXYL next.

Not sure when, because I don't have the money for it yet, but if it helped his eyes/joints/dry skin, maybe it'll help me and you.

I still remember reading that eBook that emphasised the use of Hyaluronic Acid because Accutane depletes it.

I have Doctor's best on order, which I used before.

Bit silly of me, because after a couple of bottles last time, it did nothing.

But hey, nevermind.

I chuckle a bit now.

I remember writing on this forum, or another, a few years ago.

I was getting annoyed at the prospect of having to spend 20 a month on supplements.

They said 'You'll get to the point where you're health means more to you than any money'.

Well, I guess they were right.

Don't give up though.

Don't focus on the negative horror stories.

Because someone has these problems after 25 years, doesn't mean you will too.

I must say though, I believe very much in the mind-body connection and I think you're unlikely to get better while you remain stuck in your thoughts.

If you say you'll never get better, you're probably right (good old Henry Ford).

Baby steps are all I'm talking about.

Do something - anything - to start moving in the right direction.

That's the last I'll say though.

It's up to you now, Jimmy boy.