Repairing the long-term damage from Accutane

10,048 posts in this topic

I was on 40 mg but I stopped treatment only a month into it because of the side effects, which where:

dry lips

dry eyes

eczema on my right arm

severe back pain

2 months post accutane, dry lips and eyes are gone and the eczema on my arm is fading, however the back pain is still there, it's not as severe as it was when I was on accutane, but I still feel like an old lady getting out of bed every morning...anyone also experienced this? Hopefully it'll eventually go away...

Good thing you were only on it a month and got side effects soo early in treatment. You should be fine can't say for sure, but pretty sure esspecially since some of your side effects have gone or faded.

As for back pain if it is lower pain then I suggest crunches, streching, some Vit D ( a good brand). Accutane is known to effect Vit D levels as Accutane is a derivative of Vit A and Vit A & D compete. Try to stay away in retinol enriched foods etc... Beta should be fine! Hope this helps smile.png

Ah, thanks, better start drinking my milk then lol. Also, I forgot to mention it also lowered my sex drive when I was on accutane and sex itself just didn't feel as good anymore, 2 months post accutane, although my sex drive isn't what it was before accutane, it has been slowly getting better...know anymore on this? smile.png

Yeah don't do milk, just a Vit D supplement and possibly some Magnesium. Milk full of Vit A..You may be okay drinking it, but if you feel worse then stop, I do the supplements though! As for sexual dysfunction, I don't know if anyone on this thread has had sucess, but you took accutane for a short time and if you do a search of the boards ( though the boards recently incoprated all rx meds) you should find some who took accutane for a short time and recovered.

If you go way back,you will see that money was given to studies, in fact Liam Grant pd over 1 million dollars in studies on accutane effects of the brain and such. Since the law suits on intestinal disorders there is been intrest there, problem is no one believes that accutane can cause sexual dysfunction or hormonal issues and really most don't care which is sad! If you acutally look at all the side effects listed, they are all found in hormonal & autoimmune disorders, which in turn can cause a whole lot of issues. I don't know, Accutane was in the media and a lot of intrest and hype here in the U.S., France, Germany, Ireland, U.K. etc... in the 2000's....eusa_wall.gif

Yes, I know about Liam Grant's funding history. He sold off investment property. We need money from those who are suffering; I'm sure the Propecia group could put it to good use. I've donated and I intend to again.

If you go way back,you will see that money was given to studies, in fact Liam Grant pd over 1 million dollars in studies on accutane effects of the brain and such. Since the law suits on intestinal disorders there is been intrest there, problem is no one believes that accutane can cause sexual dysfunction or hormonal issues and really most don't care which is sad! If you acutally look at all the side effects listed, they are all found in hormonal & autoimmune disorders, which in turn can cause a whole lot of issues. I don't know, Accutane was in the media and a lot of intrest and hype here in the U.S., France, Germany, Ireland, U.K. etc... in the 2000's....eusa_wall.gif

Yes, I know about Liam Grant's funding history. He sold off investment property. We need money from those who are suffering; I'm sure the Propecia group could put it to good use. I've donated and I intend to again.

So I take you have been damaged by propecia and not accutane??? If I remember correctly they didn't want us posting on thier board.... Wether you believe Nathan's theroy or not, he was in contact with a lot of scientists and such, who had intrest, but couldn't understand how a acne drug could effect one so badly! Though it should be easy to understand that acne can be a hormonal issue, and accutane could effect hormones, etc.... it's hard for them to believe unlike hair loss usually being tied to hormonal issues which can lead to sexual dysfunction and hence they can rationalize a hairloss drug causing sexual dysfunction.

Now, I am not sure if I missed it, but I didn't see depression or suicide for propecia or gut issues like you see with accutane, yet with accutane you don't see sexual dysfunction like you do with propecia. In fact we had congressional hearings over the drug, sexual dysfunction has been reported since the 80's to the FDA and nothing. So many victims of accutane have tried to do many things. In fact Max's pro board, in which I directed a propecia suffer too has bio chem in relation to this! I guess my question is by funding them what is that going to accomplish in regards to accutane? Though I agree there are similarities in a lot of us, there also a lot of diffrences.

I guess I forgot to mention also that...I am not sure where your from, but here in the U.S. Roche good careless about side effects since they took it off the market, studies or not! Would have to be targeted towards the generics! Unless the studies would show a cure here outside of what that Endo in MI is doing for some accutane victims.

Edited by oli girl
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The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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So I take you have been damaged by propecia and not accutane??? If I remember correctly they didn't want us posting on thier board.... Wether you believe Nathan's theroy or not, he was in contact with a lot of scientists and such, who had intrest, but couldn't understand how a acne drug could effect one so badly! Though it should be easy to understand that acne can be a hormonal issue, and accutane could effect hormones, etc.... it's hard for them to believe unlike hair loss usually being tied to hormonal issues which can lead to sexual dysfunction and hence they can rationalize a hairloss drug causing sexual dysfunction.

No I am an Accutane victim - worse in fact. I had two courses, but came undone with something 'natural.' It's not important now that I am here. It's not that they don't believe, they just don't care. Disfiguring acne is viewed with way more contempt than balding: thus, it's way harder for people (in general) to hate an acne drug, which often brings about resolution for people. It just does not make for good t.v. in the way that the Propecia cases do.

Now, I am not sure if I missed it, but I didn't see depression or suicide for propecia or gut issues like you see with accutane, yet with accutane you don't see sexual dysfunction like you do with propecia. In fact we had congressional hearings over the drug, sexual dysfunction has been reported since the 80's to the FDA and nothing. So many victims of accutane have tried to do many things. In fact Max's pro board, in which I directed a propecia suffer too has bio chem in relation to this! I guess my question is by funding them what is that going to accomplish in regards to accutane? Though I agree there are similarities in a lot of us, there also a lot of diffrences.

I think Accutane induces more severe depression, hence the suicides. I don't see the divergence on the other sides. The research facilitator over there argued that there were sizable commonalities, and even posted here to that effect, so I was happy to donate. Given the information he is privy to, I don't see how laypersons can argue to the contrary. I know there may be some speculation at work, but it is still the best deal going, by a long shot.


"Fret not fellas. I've got a 145 IQ, zen pain tolerance, the resilience of a cockroach, the survival instincts of a rat. I'll win; it's what I do. And then I'll help all of you, forgetting no one; I swear."

"I did get some fatigue and minor cramps from taste testing spicy food I was cooking. Even though I didn't swallow and rinsed, the residue got me. This hypersensitivity is annoying."

Thus spoke Joseph Buchignani.


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Just bumping the thread so it doesn't get lost :)

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The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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Does anyone have accutaneispoison's contact info? I messaged him a while back but i think that now he is cured he is off the forum. I'd like to get more info from him about cannabis oil. next thing im going to try.

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hey guys I haven't read through this whole topic because theres so many pages but i wanted to ask...For those of you who has taken accutane and your acne has significantly improved or is gone now, would you say taking it was worth it now that you are somewhat or are acne free? I haven't tried accutane but for me taking it will be my last ditch effort to get rid of my acne once and for all right now I'm prone to negative thoughts glass half empty sort of person so if i do take it, maybe, i think i would easily get depression which i do not want. In the mean time i'll try other acne treatments instead of taking the accutane 'cure' for acne

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Took accutane early at 31, was it worth it NO! Developed sjrogrens (permanently dry eyes mouth, joint pain etc) type 1 diabetic ( juvenile diabetes in my 30's). Life long diseases!

As for acne yep came back! Value you your life and health don't take it! Try light therapy/ look at the holistic fourm too!

Just keeping it honest:) good luck!

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The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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http://archderm.jamanetwork.com/article.aspx?articleid=479093

hey guys I haven't read through this whole topic because theres so many pages but i wanted to ask...For those of you who has taken accutane and your acne has significantly improved or is gone now, would you say taking it was worth it now that you are somewhat or are acne free? I haven't tried accutane but for me taking it will be my last ditch effort to get rid of my acne once and for all right now I'm prone to negative thoughts glass half empty sort of person so if i do take it, maybe, i think i would easily get depression which i do not want. In the mean time i'll try other acne treatments instead of taking the accutane 'cure' for acne

Acne is 100% diet related , if you are prone to acne then change that , eliminate dairy , junk food etc look on the holistic forums on here , and do yourself a favor and don't poison yourself for life trust me you will regret it once the permanent side effects kick in. Don't @#$% UP

your life over pimples , and read the link I provided , Acne is a cosmetic condition of the western world due to the JUNK ( Processed Food) we eat and is not found in nonwesternized populations and that is a fact something Derms don't want to tell you for obvious reasons $$$$.

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hey guys I haven't read through this whole topic because theres so many pages but i wanted to ask...For those of you who has taken accutane and your acne has significantly improved or is gone now, would you say taking it was worth it now that you are somewhat or are acne free? I haven't tried accutane but for me taking it will be my last ditch effort to get rid of my acne once and for all right now I'm prone to negative thoughts glass half empty sort of person so if i do take it, maybe, i think i would easily get depression which i do not want. In the mean time i'll try other acne treatments instead of taking the accutane 'cure' for acne

I took Accutane for three months over a year and a half ago. I still have hair loss, dandruff, brain fog, headaches, dry eyes, dry skin, sensitive skin, cracking joints, etc... And it didn't even clear up my acne. I'm only 21 and I feel three times my age. Did I mention that I have been off the medication for over a year and a half!?

Try some significant lifestyle changes first. Drink a shit ton of water. Cut out added sugars, gluten, hormones, and other crap. Research supplements (since my acne is hormonal and I have low estrogen, evening primrose oil is what ultimately cleared me up.) Because if you don't, you might become one of us. Trust us.

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Recovering from Accutane-related hair loss.

(over a year and a half after stopping...)


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Oli, depression has been added to the Propecia labeling in the past few years. Just FYI. I agree with whoever said the depressive side effects of Accutane seem to be worse, and the sexual sides of Propecia tend to be worse than Accutane, and vice-versa.

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Don't be part of the problem!
Report your side effects through the following links:
Rxisk
https://www.rxisk.or...ects/About.aspx
FDA
https://www.accessda...umer.reporting1
NHS
http://yellowcard.mhra.gov.uk/
Roche
http://www.roche.co....k/xxxcontactxxx


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Figured out the drill in Shenzhen. Tougher than America, but still doable. Organic free range lowfat pork from Ole Supermarket, 2 liters of homemade yoghurt from regular milk. Go up to 3 liters and get IBS, eat fatty meat get IBS, even eat scallops in China get IBS. I'm gonna try some intermittent fasting as well since I'm so food volume sensitive. Of course I'm still taking UDCA.


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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Today marks week 3 dumping/detoxing on a low oxalate diet. There has been hope, but most of the time, I feel like a brain-fogged, half-dead, orthorexic zombie.

Brain fog and insomnia coupled up make me want to hibernate all the time. It has never been this bad before. I have a difficult time finding the right words, so sometimes the things I say make no sense. My memory doesn't want to cooperate most of the time and my thoughts and movements are so slow. I feel like I'm living in slow-mo. This is my last semester in college-- on top of that, I have friends who like to have intellectual discussions and I feel like an absolute moron, so this is extremely frustrating for me and causes me a lot of anxiety. I've all but stopped caring about classes, because if I try, I'll only find more anxiety and frustration. So I bide time, meditating and clicking through Pinterest-- I don't want to read words. And trying to distract myself from my heightened emotions.

Sometimes the brain fog is liberating. It's weird not overthinking things and having a million thoughts before I go to bed. Sometimes I actually sleep better because of it. Sometimes I'm actually calmer! Like I said, Jekyll and Hyde.

I have headaches no hydration can ever cure. No matter how much water I drink, I still feel like I need more-- and if I drink too much water, I feel nauseated! Ugh. Sometimes it's the headaches that prevent me from sleeping well. Most of the time it's the frustration.

On the hair loss front, it's hit and miss. I had a couple days of awesomeness where I lost basically nothing!!! … and then there were some days when I lost a lot. On average, I'm getting slightly better than normal. Tea rinses and washing less may have something to do with it, too.

Skin's a lot less dry than it used to be. Dandruff is lessened. Eyes still tired and irritated, but less so. Body still fatigued. Itching is lessened. My digestion is better-- I used to have to sit at the table for about a half an hour after having finished eating, but I don't have to anymore. Still the other signs of dumping I mentioned last week.

I found something interesting on TH-1 and TH-2 dominance, related to the balance of Vitamin A/ Vitamin D. Maybe once my mind clears up, I'll try to make sense of it, but right now, it's all Greek to me.

Hopefully it gets better from this point on. The detox is worth it just to see the improvements in all these other areas.



Recovering from Accutane-related hair loss.

(over a year and a half after stopping...)


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I'm curios , how many Mgs were you on and for how long?

I just started , I'm on day 7 and I have stomach cramps.

I really hope you feel better, keep us posted!

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Figured out the drill in Shenzhen. Tougher than America, but still doable. Organic free range lowfat pork from Ole Supermarket, 2 liters of homemade yoghurt from regular milk. Go up to 3 liters and get IBS, eat fatty meat get IBS, even eat scallops in China get IBS. I'm gonna try some intermittent fasting as well since I'm so food volume sensitive. Of course I'm still taking UDCA.

Have you tried not drinking at least half an hour before and after eating? Have you tried HCL betaine?

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The stomach acid theory, eh? Yes I have suspicions along the same lines. I tried an enzyme that contains Betaine HCL, and also Ox Bile. It seemed to give me problems in the lower tract. My current enzyme doesn't contain it. However I'm doing well at the moment, so I'll let this run. That would be a good experiment to try once I finish observing my stability on this regimine.

I'm gonna stop intermittent fasting. bad idea. I'm already near caloric deficit. promotes gorging, overloads digestive output. Instead, time yoghurt intake by daylight clock. Eat proportional to amount of daylight left, small quantities.

Edited by JosephBuchignani

Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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one of the foods that i have started incorporating a good while back and which works wonders is basically "fein" european peanut butter (without salt) for me it is the equivalent of a supplement and it tastes amazing like caramel. i take 1 to 2 tablespoons a day. it is high in magnesium and vitamin B6 and increase lucid dreaming, if you eat enough of it because of the high B6 content. B6 is an important regulator of the immune system. i have been eating it now for a little more than 5 months and i have not been sick once, usually i get a sore throat at least once during a long winter, not this year. for those who eat gluten free and have trouble getting their daily calories peanut butter will help too. on average i eat a little less than 500g of peanut butter a weak, maybe 400g.

the peanut butter i buy is from a brand called rapunzel, it is organic and without salt or any other additives. where i live there are a lot of brands that sell pretty much the same product under a different brand name. in the US i don't know what brand to get.

Edited by Believe

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Ooooookay I'm finally back to post a status update on the Rheumatologist/Auto-immune/Cure overnight deal with everyone.

So big surprise, the Rheum was next to useless and just told me my tests were normal.


**** Read this -----> Went back to my GP- got put on an antibiotic (Minicin/Minocycline) I take it twice a day, and my skin = 30000000% better and is smooth, hair already feels great and better, and this all happened again, almost overnight. My stomach issue has improved, and I don't know about others, but I also had a heart palpitation issue which seems to have gone away as well. I also stopped taking a multivitamin for energy I had been taking for a while because of the heart issue/nerves/mind fog so I can't say if the antibiotic or the stopping of the multivitamin helped my heart more, but the antibiotic is definitely responsible for everything else. Not to mention my circulation is also better and I'm not so intolerant to cold anymore.

This antibiotic is like a $5 generic at your local pharmacy. My GP told me he doesn't know what is wrong with me, and that science hasn't caught up to it, but for whatever reason, the antibiotic is treating the immune response my body has where it destroys its own skin/hair/attacks other parts of the body. My mind even feels better.

I'm not saying this will work for everyone, but it's damn sure worth a shot for anyone still on this forum.

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What has worked for me in order of safety/effectiveness: Eating small portions of food (no more than 2 fistfuls at any given sitting) *and/or* Low calorie/low fat/low-to-no grain diet while minimizing all dehydrating substances.

What helps: Manganese! Molybdenum, Methyl-B12, Exercise+Water and a Humidifier in your room.

What hasn't: Everything else (so far).

What makes it worse: Multivitamins** for whatever reason. If you need to take supplements, get the single supplement as needed- multivitamins can make your symptoms worse. Do your research on each vitamin! Eating large meals, and eating highly processed/fatty foods.


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Took accutane early at 31, was it worth it NO! Developed sjrogrens (permanently dry eyes mouth, joint pain etc) type 1 diabetic ( juvenile diabetes in my 30's). Life long diseases!

As for acne yep came back! Value you your life and health don't take it! Try light therapy/ look at the holistic fourm too!

Just keeping it honest:) good luck!

http://archderm.jamanetwork.com/article.aspx?articleid=479093

hey guys I haven't read through this whole topic because theres so many pages but i wanted to ask...For those of you who has taken accutane and your acne has significantly improved or is gone now, would you say taking it was worth it now that you are somewhat or are acne free? I haven't tried accutane but for me taking it will be my last ditch effort to get rid of my acne once and for all right now I'm prone to negative thoughts glass half empty sort of person so if i do take it, maybe, i think i would easily get depression which i do not want. In the mean time i'll try other acne treatments instead of taking the accutane 'cure' for acne

Acne is 100% diet related , if you are prone to acne then change that , eliminate dairy , junk food etc look on the holistic forums on here , and do yourself a favor and don't poison yourself for life trust me you will regret it once the permanent side effects kick in. Don't @#$% UP

your life over pimples , and read the link I provided , Acne is a cosmetic condition of the western world due to the JUNK ( Processed Food) we eat and is not found in nonwesternized populations and that is a fact something Derms don't want to tell you for obvious reasons $$$$.

hey guys I haven't read through this whole topic because theres so many pages but i wanted to ask...For those of you who has taken accutane and your acne has significantly improved or is gone now, would you say taking it was worth it now that you are somewhat or are acne free? I haven't tried accutane but for me taking it will be my last ditch effort to get rid of my acne once and for all right now I'm prone to negative thoughts glass half empty sort of person so if i do take it, maybe, i think i would easily get depression which i do not want. In the mean time i'll try other acne treatments instead of taking the accutane 'cure' for acne

I took Accutane for three months over a year and a half ago. I still have hair loss, dandruff, brain fog, headaches, dry eyes, dry skin, sensitive skin, cracking joints, etc... And it didn't even clear up my acne. I'm only 21 and I feel three times my age. Did I mention that I have been off the medication for over a year and a half!?

Try some significant lifestyle changes first. Drink a shit ton of water. Cut out added sugars, gluten, hormones, and other crap. Research supplements (since my acne is hormonal and I have low estrogen, evening primrose oil is what ultimately cleared me up.) Because if you don't, you might become one of us. Trust us.

ok thanks for the warnings and that sucks that it didn't even get rid of the acne just gave you guys worse side effects. I wish there was a test you could take before taking accutane to show whether you would be more prone/predisposed to get the worse side effects or none at all.

Edited by Jazzy17

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I sure many have read her story, but I thought I would post a link to it on here! I go and meet Patti once a yr and talk to her periodically throughout the year on the phone she is truly a extrodinary women who was damaged by accutane in the 80's! http://www.scribd.com/doc/124725464/The-Accutainted-Life


The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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My new regimen is even more successful than when I was in the US:

Small meals of plain yoghurt spaced through daylight hours. Limit 2 liters per day. One package of free range organic pork, pressure cooked and otherwise plain, per day. No gorging or fasting. Plus UDCA and a lactase containing digestive enzyme without Betaine HCl or ox bile.


Accutane - Brief low-dose course ~9 years ago for ~4 months. Liver monitored, no sides.
Symptoms: Gradual onset of symptoms, peaking ~5 years ago. Extreme IBS, lost ability to eat almost everything, unable to work for 4 years. IBD diagnosis might've been possible, but avoided doctors and the prescription meds route, going for diet and supplements instead. Thought it was regular IBS, didn't realize it was Accutane until already had avoided the IBD diagnosis. Decided going back to hell just to get the diagnosis wasn't worth it. Regained enough health to work full time around May-June 2013.
Regimen summary:
Eat only
1. true free range lean chicken breast (expensive)
2. Lean white-tail shrimp (moderately expensive)
3. Glutinous rice gruel (very cheap)
All ad libitum, minimum 150g shrimp/d.
Supplements:
1. Blue Ice CLO / Butter Oil blend
2. Udca ~1-3g /d
3. Source Naturals Essential enzymes 2x per meal
4. Symbiotics Colostrum ~1/8 scoop per meal
5. Cycled topical testosterone cream
6. Topical ACV, tea tree oil (morning) and benzoyle peroxide 10% (night)
Zeitgeibers:
1. Aim to nap every 3 hours for 20 minutes
2. Match light exposure to sunrise, sunset
3. Match meals to sun


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2 litres of yoghurt a day????

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Ooooookay I'm finally back to post a status update on the Rheumatologist/Auto-immune/Cure overnight deal with everyone.

So big surprise, the Rheum was next to useless and just told me my tests were normal.

**** Read this -----> Went back to my GP- got put on an antibiotic (Minicin/Minocycline) I take it twice a day, and my skin = 30000000% better and is smooth, hair already feels great and better, and this all happened again, almost overnight. My stomach issue has improved, and I don't know about others, but I also had a heart palpitation issue which seems to have gone away as well. I also stopped taking a multivitamin for energy I had been taking for a while because of the heart issue/nerves/mind fog so I can't say if the antibiotic or the stopping of the multivitamin helped my heart more, but the antibiotic is definitely responsible for everything else. Not to mention my circulation is also better and I'm not so intolerant to cold anymore.

This antibiotic is like a $5 generic at your local pharmacy. My GP told me he doesn't know what is wrong with me, and that science hasn't caught up to it, but for whatever reason, the antibiotic is treating the immune response my body has where it destroys its own skin/hair/attacks other parts of the body. My mind even feels better.

I'm not saying this will work for everyone, but it's damn sure worth a shot for anyone still on this forum.

^This PLUS diet is key. Basically you have to live as if you have Sjogrens whether you have the antibodies or not- your body reacts this way now. You can research the things to avoid like wheat, dairy products, caffeine/alcohol and stuff that dehydrates you. A simple Google search for Sjogrens diet will tell you everything you need to know. But so far, the antibiotic/a little fudging with the diet and I can get away with pretty great skin.

Anyone with any questions just PM me/ask here.


What has worked for me in order of safety/effectiveness: Eating small portions of food (no more than 2 fistfuls at any given sitting) *and/or* Low calorie/low fat/low-to-no grain diet while minimizing all dehydrating substances.

What helps: Manganese! Molybdenum, Methyl-B12, Exercise+Water and a Humidifier in your room.

What hasn't: Everything else (so far).

What makes it worse: Multivitamins** for whatever reason. If you need to take supplements, get the single supplement as needed- multivitamins can make your symptoms worse. Do your research on each vitamin! Eating large meals, and eating highly processed/fatty foods.


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Dodo eggs and a single pillow of shredded wheat.

Daily colonics and howling at a full moon.

Some of you people are nucking futs.

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Dodo eggs and a single pillow of shredded wheat.

Daily colonics and howling at a full moon.

Some of you people are nucking futs.

Well, it may not be on par with Jesus' resurrection, but that still counts as an Easter miracle in my book. A person with the cojones ( author discourse denoting courage) to call out the quackery, and still has enough bravado and sense to have an Easter egg.

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"Fret not fellas. I've got a 145 IQ, zen pain tolerance, the resilience of a cockroach, the survival instincts of a rat. I'll win; it's what I do. And then I'll help all of you, forgetting no one; I swear."

"I did get some fatigue and minor cramps from taste testing spicy food I was cooking. Even though I didn't swallow and rinsed, the residue got me. This hypersensitivity is annoying."

Thus spoke Joseph Buchignani.


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We all share a common bond on here we have all been accutainted , we should set up a international club only people who have taken the poison can join

, the good that is coming out of this thread is that we are all learning what works ie helps and what does not or makes things worse.

Some on here have it worse than others that is for sure but together we can find solutions , solutions that may not make all the side effects go away

but can improve them . (=

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I'm frankly starting to lose it with all of you.

I have handed you the cure on a silver platter so I don't want to see any other absurd responses.

**Starting on an antibiotic/Sjogrens medicine WILL help your side effects whether it be dry skin, heart palpitations, joint paint etc

**Avoiding certain things in your diet like processed foods WILL help your other/the same side effects like mental fog/depression- it's just finding the balance of moderation.. You will have to some nights stay away from all bread and carbs and just have fish for dinner. But that doesn't mean every night. And I promise you, the one day where you avoid it all, you will see a night and day difference the next day if not the same day.


Everyone's body chemistry is different so you will have to find what foods really give you a flare up like wheat/dairy/just eating too much in one sitting

But medicine is pretty straight-forward: any antibiotic seems to work and there are others that will help further if it is required.

STOP talking about other craziness. These two things done together are literally the answer. Period. Any questions, ask them. We are here to help each other.

PS- Almost /all/ of our problems are due to dehydration/the body attacking the moisture producing areas of our body- so DRINK LOTS OF WATER and avoid things that dehydrate you. Inflammation is also a problem both internal and external, especially as it relates to the skin problem so many of us have, so anything that reduces inflammation will also help.

Edited by Nick Ryan

What has worked for me in order of safety/effectiveness: Eating small portions of food (no more than 2 fistfuls at any given sitting) *and/or* Low calorie/low fat/low-to-no grain diet while minimizing all dehydrating substances.

What helps: Manganese! Molybdenum, Methyl-B12, Exercise+Water and a Humidifier in your room.

What hasn't: Everything else (so far).

What makes it worse: Multivitamins** for whatever reason. If you need to take supplements, get the single supplement as needed- multivitamins can make your symptoms worse. Do your research on each vitamin! Eating large meals, and eating highly processed/fatty foods.


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