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Repairing the long-term damage from Accutane

 
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(@yetanotheraccutanevictim)

Posted : 03/03/2015 2:28 pm

I went and saw a naturapath who specialises in idiology and kinesiology, and i was astounded. She picked up stomach leakage, liver problems, stomach bacteria problems, which is leading to my body not absorbing virtually any of my nutrients making my body overproduce adrenalin and oils. She noticed visual problems in my eyes, which im linking to my 'vision snow', im assuming all these problems are from accutane. ive stopped accutane and will work hollistically, addressing the root causes to my issues! I saw my dermatologist aswell, whom advised me to stop the accutane, and also gave me a script for 'Bactrim', which is an antibiotic. has anyone used this? should i use it?

DO NOT USE BACTRIM

I used it during my accutane treatment and it really messed me up. I'm worse than most people here because I took the bactrim along with the accutane. I'm only 20 years old but I feel like I'm 100. I have extreme fibromyalgia. I've seen other stories of people who took bactrim and it also messed them up pretty good. It damages your sulfur metabolism pathways. Your muscles get all screwed up. I would stay AWAY from accutane and bactrim. Treat any bacterial overgrowth with herbs like berberine or olive leaf extract (won't harm beneficial bacteria). only use antibiotics if you think you might die from the infection

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(@accutanegavemeeczema)

Posted : 03/03/2015 7:13 pm

I went and saw a naturapath who specialises in idiology and kinesiology, and i was astounded. She picked up stomach leakage, liver problems, stomach bacteria problems, which is leading to my body not absorbing virtually any of my nutrients making my body overproduce adrenalin and oils. She noticed visual problems in my eyes, which im linking to my 'vision snow', im assuming all these problems are from accutane. ive stopped accutane and will work hollistically, addressing the root causes to my issues! I saw my dermatologist aswell, whom advised me to stop the accutane, and also gave me a script for 'Bactrim', which is an antibiotic. has anyone used this? should i use it?

Do not use Bactrim. You say you are seeing a holistic doctor to help you and then ask whether it's a good idea to take another extremely potent prescription drug?

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299
(@macleod)

Posted : 03/04/2015 5:16 pm

Hello Fellow Tane sufferers. Coming up on my 7 year anniversary since cessation of accutane. Unfortunately, most of the side effects are still present. While I do appreciate reading some of the advice and research, I think its safe to assume that the damage done is permanent. I think the best course of action at this point is to accept the fate bestowed upon us. This isn't to say that you shouldn't be more health conscious and try new health supplements or regimes, as we are now aware (more so than most) of how vulnerable and mortal our bodies really are, however I would tamper down expectations of a 'cure'. I take a basic custom made multi vitamin daily ( ) coupled with regular exercise and that has me feeling good most of the time, yet the hearing, vision, joints, circulatory, sleep, nervous system, and neurological side effects remain.

I do concur with a comment above, that it is some sort of permanent 'immune response'. I concur with Nathan and his report that it has to do with telomere length and ultimately function down to a cellular level.

Being a tane sufferer is a bit like developing 'diabetes' or any other such disease, or in this case several diseases...While there is no exact cure, one can adapt and manage it. I think we are still a ways off for a cure. Something of the likes of stem cell therapy or gene therapy would be needed I think at this point..

Now that I know this and accept this, I often wonder this:

A. Pharmaceutical companies are incompetent AND/OR
B. We (side effect sufferers) are just unlucky OR
C. Pharma companies are knowledgeable in all of this and are specifically targeting certain genes in people and masking it in their drugs.

It is quite peculiar that some of these very same side effects are seen in people who have taken their other drugs: ex. Lariam, Finasteride

It's also a bit peculiar that some people can go through chemotherapy at age 40 and completely make a 180 in terms of side effects and regain their health back to optimal levels. It really makes you wonder what was in this Accutane.

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(@gladiatoro)

Posted : 03/05/2015 8:55 pm

A and C is your answer , Accutane is a controlled poisoning nothing more nothing less , it's symptom management that's all we have our body's have been poisoned and inflamed by a chemo drug those are the facts , with permanent side effects pHARMa at it's best . Modern medicine is BARBARIC AND PRIMITIVE and to be honest there is nothing MODERN about it old school healing is where it's at and has always been . In the near future people will look at this time in history as VERY VERY PRIMITIVE .

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(@thesmallthings)

Posted : 03/06/2015 12:27 am

okay ive pretty much come to the conclusion that my visual symptoms are Hallucinogenic persisting perception disorder (HPPD), as i have other symptoms which are directly linked to HPPD such as derealization, depersonalisation, floaters, starbursts etc.. along with VISUAL SNOW. visual snow can be caused by accutane and a symtom of HPPD, but what convinced me is the other symptoms. i did a large amount of MDMA over the course of 4 weeks after new years, and felt out of it for way too long after, which is not normal, as i normally felt fine after mdma after a few days. So im pretty sure accutane had nothing to do with this

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(@maddy1234)

Posted : 03/06/2015 3:38 am

completely new to this page but have been reading up on accutane and trying out a bunch of different remedies for detoxing etc. I have been off accutane for a year now and the only side effects that have not gone away are depression and my sex drive being non existent. I feel like I have tried everything and nothing has worked, is there anyone on here that managed to get their libido back?

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(@dubya_b)

Posted : 03/06/2015 7:23 am

Bah! double-post

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(@dubya_b)

Posted : 03/06/2015 7:39 am

 

It is quite peculiar that some of these very same side effects are seen in people who have taken their other drugs: ex. Lariam, Finasteride

 

It's also a bit peculiar that some people can go through chemotherapy at age 40 and completely make a 180 in terms of side effects and regain their health back to optimal levels. It really makes you wonder what was in this Accutane.

I have a good friend who was treated for lymphoma in his early 20s, had terrrible side effects from the chemo, and is nearly fully-recovered at 35. Has children, sex-drive recovered after the chemo ended, and no major health problems. He lived a typical American lifestyle and ate a typical American diet during those 15 years . Meanwhile, I took a standard-dose course of Accutane at 18 y/o, have been unable to have children, am practically impotent, and had a slew of other physical and neurological chemo side effects that never ended. This is with plenty of reluctant physical activity and a contantly-improving diet over nearly 15 years.

It is peculiar. A shame nobody outside of our little circle really gives a fuck though.

This shouldn't come as a surprise to anyone here but much of this content sounds strikingly familiar:

A Guide to Chemotherapy: Chemo side effects

http://www.cancer.or...mo-side-effects

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299
(@macleod)

Posted : 03/06/2015 8:27 am

okay ive pretty much come to the conclusion that my visual symptoms are Hallucinogenic persisting perception disorder (HPPD), as i have other symptoms which are directly linked to HPPD such as derealization, depersonalisation, floaters, starbursts etc.. along with VISUAL SNOW. visual snow can be caused by accutane and a symtom of HPPD, but what convinced me is the other symptoms. i did a large amount of MDMA over the course of 4 weeks after new years, and felt out of it for way too long after, which is not normal, as i normally felt fine after mdma after a few days. So im pretty sure accutane had nothing to do with this

I have many permanent visual side effects after Accutane, including the ones you listed. Floaters increased, blue sky sprites, leukocytes dancing around, visual snow, night blindness, burn in image...you name it. I have had an eye doctor look at my eyes and say the overall health of the macula is fine. I guess the accutane somehow fried the photo receptor rods on the inside. Some of these things listed for HPPD seem similar, but I can say for a fact all of my eye sides came from accutane, since I have never taken hallucinogens.

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(@macleod)

Posted : 03/06/2015 8:52 am

 

 

It is quite peculiar that some of these very same side effects are seen in people who have taken their other drugs: ex. Lariam, Finasteride

 

It's also a bit peculiar that some people can go through chemotherapy at age 40 and completely make a 180 in terms of side effects and regain their health back to optimal levels. It really makes you wonder what was in this Accutane.

I have a good friend who was treated for lymphoma in his early 20s, had terrrible side effects from the chemo, and is nearly fully-recovered at 35. Has children, sex-drive recovered after the chemo ended, and no major health problems. He lived a typical American lifestyle and ate a typical American diet during those 15 years . Meanwhile, I took a standard-dose course of Accutane at 18 y/o, have been unable to have children, am practically impotent, and had a slew of other physical and neurological chemo side effects that never ended. This is with plenty of reluctant physical activity and a contantly-improving diet over nearly 15 years.

It is peculiar. A shame nobody outside of our little circle really gives a fuck though.

This shouldn't come as a surprise to anyone here but much of this content sounds strikingly familiar:

A Guide to Chemotherapy: Chemo side effects

http://www.cancer.or...mo-side-effects

What's so odd is most of the side effects came in a wave after 3 months of cessation. Meaning I was actually living a normal life for 3 entire months after the last pill. That's so crazy to think about. Like how is that medically possible?

 

It's so funny when you tell a doctor about your side effects and they ask if you have discontinued the use of it and say "well it should be out of your blood by now" and I just stare at them and think to myself "No shit, sherlock."

 

I've read reports of people going years without a side effect and then 10+ years later having to have their pancreas removed. That's why its pretty amusing when people say they developed no side effects from accutane. Yea, well unless you are able to see into the future of your entire life line...And by then people are unable to make the correlation between the two.

It's almost impossible to prove from a medical standpoint, so you can imagine even moreso in a court of law. And even if we could, we live in a day and age where litigators will argue past marijuana and or alcohol use as a culprit before they will target any pharmaceutical drugs. That's just how it is in the United States. This system is designed to protect the interests of the billion dollar companies over the interests of individuals.

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(@gladiatoro)

Posted : 03/06/2015 9:41 am

Well isotretinoin is a chemo drug so obviously it has long term side effects any honest derm will tell you Accutane treats acne WITH side effects . Allopathic medicine is barbaric and primitive indeed . If you take a poison what do you expect to happen to your body . I would recommend RSO oil / pot for those with serious side effects and most important limit alcohol intake the two don't mix well.

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(@dubya_b)

Posted : 03/06/2015 4:03 pm

What's so odd is most of the side effects came in a wave after 3 months of cessation. Meaning I was actually living a normal life for 3 entire months after the last pill. That's so crazy to think about. Like how is that medically possible?

 

It's so funny when you tell a doctor about your side effects and they ask if you have discontinued the use of it and say "well it should be out of your blood by now" and I just stare at them and think to myself "No shit, sherlock."

 

I've read reports of people going years without a side effect and then 10+ years later having to have their pancreas removed. That's why its pretty amusing when people say they developed no side effects from accutane. Yea, well unless you are able to see into the future of your entire life line...And by then people are unable to make the correlation between the two.

It's almost impossible to prove from a medical standpoint, so you can imagine even moreso in a court of law. And even if we could, we live in a day and age where litigators will argue past marijuana and or alcohol use as a culprit before they will target any pharmaceutical drugs. That's just how it is in the United States. This system is designed to protect the interests of the billion dollar companies over the interests of individuals.

Same here! There was at least a month between my last dose and the day the worst of the side effects hit. I only had mild sides while taking it and felt great for a few weeks after stopping until that day. Clearly remember thinking "Now that I feel like living Hell, my acne is starting to clear while that damned pill never did anything to help." Took years to make the connection between Accutane and symptoms because of that brief interlude.

You mentioned the huge overlap in symptoms shared between us and post-finasteride sufferers.

Have you read this yet?:

http://www.protocol-online.org/forums/uploads/monthly_08_2010/msg-19273-027408800%201282061244.ipb

Evidence supporting much of that theory paper has been published in the past couple years.

The major difference between us and the PFS community is that they have outstanding research institutions studying this condition, while we are busy circle-jerking eachother with fantasies about flushes and cleanses in this day and age.

It's doubtful that all post-Accutane problems can be explained by the mechanisms thought to be behind PFS, but the androgen receptor is ubiquitously expressed after all, and acne is undoubtedly an androgen-bourne condition, which can be successfully treated with Accutane in most cases.

It's so funny when you tell a doctor about your side effects and they ask if you have discontinued the use of it and say "well it should be out of your blood by now" and I just stare at them and think to myself "No shit, sherlock."

Shhh. You seriously might offend 2/3 of the posters here by saying such things. .

Nathan Carr must have abandoned his telomere theory in recent years. I exchanged some emails with him early last year and he mentioned treating himself with something similar to miracle mineral solution and pinned everything down to reactive oxygen molecules. The treatment he was proposing seemed a little too "scammy." ...I'm just relaying the info he sent me. Thought you might be interested to know this too Modeaa.

It is so funny how the peer-reviewed Bremner study got ripped to shreds over a few mistakes and "mostly" for being litigant-funded, but it's okay for Roche to defend itself with self-funded, dermatology-funded, PR-filtered, and journal-published advertisements . No conflict of interest there, huh? Surely all of the data and protocols in isotretinoin-supportive literature has been gone over with a fine-toothed comb for innaccuracies and missing data.

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(@macleod)

Posted : 03/06/2015 5:09 pm

Wow, this paper is awesome! Good to see there are people working on this. Maybe a cure could be possible within the next decade or so..

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(@thesmallthings)

Posted : 03/06/2015 11:17 pm

Wow, so ive only been off accutane a few days, and i already have about 30-40 tiny bumps on my chin and cheeks, this is so weird... exactly same thing happened 2 weeks ago

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(@dubya_b)

Posted : 03/07/2015 1:32 am

Wow, this paper is awesome! Good to see there are people working on this. Maybe a cure could be possible within the next decade or so..

Yeah. It's my only logical thread of hope at this point. There is also always the off-chance that different mechanisms are in play causing the same core set of overlapping side effects among these different drugs. If that's the case, then we post-Accutaners are really screwed, but the fact that they all block androgen function makes a very convincing argument that it is the same condition and that a cure/treatment for one patient group will work for another. As for myself, I have a couple diagnostic tests (from valid labs) showing deficient 5-ar activity (low 5-ar THDOC) and low 3a-HSD activity. ( low Adiol-g/T ratio, as described in that paper).

Let's hope it is less than a decade. I've been going through this almost half my life and it sounds like you aren't a newbie either. If the PFS studies pinpoint a single biological root, then depending on what that may be, it could mean an almost immediate treatment method if there are known ways to modulate that single root mechanism in our favor. If there aren't, or if there are many pathways persistently altered, then we may have a very very long wait.

But time shouldn't be much of a concern for a HIghlander, macleod. ...Sorry, had to say it.

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(@macleod)

Posted : 03/07/2015 9:01 am

I think you are right Modeaa. There is sort of a constant hyper activity "immune response" in our bodies. It would explain the arthritis in my joints for sure and maybe even some of the neurological side effects too. I get an extreme reaction to any foreign substances if I consume them, like: caffeine, alcohol, marijuana, and even advil (ibuprofen). I can't take any of these substances at all, or my body and nerves go crazy, and I end up in the hospital. It manifests into a physical, sometimes cardiovascular reaction, but originiates as a neurological response.

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(@tryingtohelp2014)

Posted : 03/07/2015 1:13 pm

 

Nathan Carr must have abandoned his telomere theory in recent years. I exchanged some emails with him early last year and he mentioned treating himself with something similar to miracle mineral solution and pinned everything down to reactive oxygen molecules. The treatment he was proposing seemed a little too "scammy." ...I'm just relaying the info he sent me. Thought you might be interested to know this too Modeaa.

Nathan Carr, if he thoght of a treatment which involves some mineral suppllement then i would like to know the why and how. i don't know him. is he a past forum member? i will search in the forum..

if he pinned everything down to reactive oxygen molecules, then to my believe he is missing 2 things:

1.what create the ROS- according to what i tend to believe at the moment, the ROS is a concequence of a signal for the cells to speed up their activiy-hyper.

2. even when the body manage to fight the ROS with foxO which causes hypo and cell cycle arrest- then problems still exist.you will less age in a hyper sense but everything shuts down - for example-3-HSD.

so the ROS is just the consequense of the hyper activity due to hyper signal from accutane. the boddy mecahnisem for stopping the ROS still leaves you with all the side effects.

it's like a a bug in a automatic car computer-every time it get fuel it start going realy dangerously speedy , then the car hit something and it sensors make it to stop on it place, which will not let it reach it destination. when sensors of injury to the car will stop alerting it then it might start run again. but if the initial bug still there then it will again speed up dangerously, will hit something, sense it , stop, then will drive again.... over and over maybe. or maybe the car stopped and drives realy slow all the time.

here is the thread with nathan and a guy named Gbolduev. From reading a little bit, , this Nathan cured himself with some indian supplements? This Gbolduev came to the same conclusion as i did.... manganese!

we need to actually increase the 5AR androgens and DHT that accutane downregulates. maybe this is why bodybuilders do not seem to have the same problems as we do. this is ALL they are trying to do!

manganese and choline. he recommends 22mg manganese per day. again, i think we might need to shock our system?

http://www.thenakedscientists.com/forum/index.php?topic=6576.18390;wap2

GbolduevKurtosis,

 

I like your thinking. About a month ago I was asked by some professor in Russia the reason of the muscle weakness after ejaculation. I was thinking long about it, and I came up with mysthenia gravis, same as you.

to me POIS is definetely low and high acetylcholine. Acetylcholine parallels DHT, since acetylchoine is supressed by progesterone. So basically when you have low acetylcholine that means you have low DHT. And DHT could be the cause of POIS in this case. lManganese is used to treat mysthenia gravis. Manganese increases acetylcholine, increases DHT. Zinc decreases DHT and acetylcholine, since it chelates manganese. SO basically you need a certain ratio with iron zinc copper and manganese to get rid of POIS.

 

I am looking for the pefect ratio among these four/ But for POIS you just need to balance zinc with manganese. Candida problem will go also /

in this post he took 50mg of manganese!!! if you read the post closely he took saw palmetto. now saw palmetto is a 5AR inhibitor just like accutane. he also mentions the dreaded Finasterid.

GbolduevSame as Kurtosis, I dont think anyone has myasthenia gravis here at the clinical form of it. And also I think we are talking only about one case of POIS here, with low acetylcholine and low DHT.

One time I was taking too much zinc, and my progesterone went way up and my DHT went way down.

My estrogen was down my dht was down , and my progesterone up.

 

So at the same time I was thinking and experimenting with acetylcholine , myastenia gravis manganese and acetylcholine connection with DHT.

I took 2 pills of saw palmetto, in 15 minutes I had POIS without even sex.

So I poisoned myself on purpose .AHAHA Since saw palmetto lowered my low DHT

 

then I took 50 mg of manganese. POIS was gone within 1 hour completely

 

I am wondering how many people got POIS from Finasterid.

Since in low DHT layout , that is exactly what that is

 

 

I dont recommend anyone screwing with your neurotransmitters, niacin raises acetylcholine , lowers thyroid hormones and progesterone.

You need to get balanced, only that way you can help yourself...You need to chelate free copper, since that interferes with manganese and zinc.

 

To do all that, you need to lock your metabolism in the middle, it is very hard to do. Since no matter what you are taking you will go from side to side, and you will get POIS in both sides.

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(@kokodu)

Posted : 03/07/2015 2:51 pm

I have been taking daily 28 mg of manganese (with choline) from 3 months, saw palmetto from 1 month.

Also some other supplements and vitamins. Unfortunately I don't feel any progress in my body, at least low libido problem.

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(@cbar1516)

Posted : 03/07/2015 3:07 pm

Update !

 

After being diagnosed with Crohn's over a month ago, I've been on a roller coaster. I was put on corticosteroids for three weeks (and felt noticeably better), only for my GI to tell me at my follow up appointment that the biopsy results he took came back "normal", and that he couldn't explain the discrepancy between the inflammation he saw when he initially diagnosed me and the negative test results he later received. He revoked my Crohn's diagnosis and told me to stop the Entocort immediately. I've since been gradually feeling progressively shittier again. He's got another scope lined up to try to find out what's happening.

 

The big takeaway from this ordeal is that steroids made me feel better. If corticosteroids were that effective, I think anabolic steroids might be even more effective in helping treat symptoms. Given how compromised my quality of life has become since taking this awful poison, I'm pretty willing to try anything at this point to feel better. I'm sick of constantly aching muscles and joints that I can't take NSAIDs for, because they fuck up my compromised gut. I'm not too worried about long-term side effects either, given that I don't think any other drug in existence can hold a candle to the fucking hell Accutane has put us through. I can take anti-depressants for the post-tane anxiety, eat well to avoid gastric distress, and simply deal with the low libido, but so far -with the exception of the corticosteroids- I haven't found a damned thing that even touches the joint and muscle pain. The only thing that I think doctors would even recommend are immunosuppressants or horrible TNF blockers which would just fuck us up more, and I definitely don't want to go down that route. I'm going to investigate further down this alley, and will keep you guys updated.

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(@tryingtohelp2014)

Posted : 03/07/2015 3:46 pm

I have been taking daily 28 mg of manganese (with choline) from 3 months, saw palmetto from 1 month.

Also some other supplements and vitamins. Unfortunately I don't feel any progress in my body, at least low libido problem.

DO NOT take saw palmetto!!!!!.... it produces the same side effects as accutane and finestride .... its a 5AR inhibitor!

if no bad sides, you might want to up the dosage now.

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359
(@dubya_b)

Posted : 03/07/2015 3:55 pm

Natan Carr put together a bunch of information outlining the dark-side of the history of Accutane. It was widely talked about years ago.

The substance he said he was using had nothing to do with manganese, it was some form of sodium chlorite. The brand names were Miracle MIneral Solution and Dioxychlor. Use at your own risk. I don't know what is meant by "safer sodium chlorite". From my understanding, sodium chlorite is sodium chlorite and most of the information you can find about it being used as a health supplement appears to be fraudulent.

Tryihngtohelp- Have you yourself tried high-dose manganese yet, and what were the benefits?

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(@wecangetbetter)

Posted : 03/07/2015 5:58 pm

 

I have been taking daily 28 mg of manganese (with choline) from 3 months, saw palmetto from 1 month.

Also some other supplements and vitamins. Unfortunately I don't feel any progress in my body, at least low libido problem.

DO NOT take saw palmetto!!!!!.... it produces the same side effects as accutane and finestride .... its a 5AR inhibitor!

if no bad sides, you might want to up the dosage now.

Why not? I've been taking saw palmetto for 2 months now and I've had to pee less frequently and I don't have to get up in the middle of the night anymore to pee which is helping me get a deep good nights rest

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(@gladiatoro)

Posted : 03/08/2015 11:37 pm

Nothing will completely CURE us , symptom management is were it's at and if you guys think that pHARMa will cure us think again , the sad truth is they don't want to cure ANYTHING , sell you more drugs yes more f&*)OO& poison more $$$$ . I would recommend to STAY AWAY from them as they will surely POISON YOU MORE. These people are EVIL if you haven't figured that part out yet. Synthetic drugs are NEVER the answer to ANYTHING period. On a positive note I remain at a 90 % recovery which I am grateful for . And I'm not guinea pigging anything I have been burned too many times by trying things only to find out that they are detrimental to my health , fish oil would be one , saw palmetto , nettle tea etc.... but I know that 10 % I will never get back that's a reality check for you guys.

I had a form of crohn's too I managed to heal it with high quality German beer , got lucky , hang in there people is all I can say. We will get our vengeance in this life or the next FACT.

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(@dubya_b)

Posted : 03/10/2015 4:22 pm

Roche Pharmaceuticals careers might expose you to exciting new lows in the depth of shady ethics and two-faced public relations.

I wonder if holding job fairs for criminals is a common hiring practice there? That's the type of talent Roche must be looking for.

Doug Bremner MD Talks About Harassment From a Drug Company Related to Accutane and Depression:

 

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(@nick-ryan)

Posted : 03/11/2015 10:53 am

So, I found this: http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm on Pernicious Anemia.

Causes:

  • Weakened stomach lining (atrophic gastritis)
  • An autoimmune condition in which the body's immune system attacks the actual intrinsic factor protein or the cells in the lining of your stomach that make it.

Symptoms: Diarrhea or constipation, fatigue, problems concentrating, shortness of breath, light-headedness when standing, numbness and tingling in hands and feet, confusion, depression, loss of balance

Treatment: Just take vitamin B12! I just take a tablet of 5,000 mcg of it every few days, but in some cases monthly shots of it may be necessary. This definitely isn't a cure, but it can help treat a whole lot of symptoms.

Cheers

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