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Considering Accutane. Good idea?

Discussion in 'General ME/CFS Discussion' started by TG95, Jan 5, 2018.

  1. TG95

    TG95

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    Hello everyone!

    First I will explain my situation in short.
    2 years ago in the summer I had 'unexplained' health issues (a lot of symptoms rather mild if I look back now and I had 2 times fever so clearly an infection involved but no known pathogen). Sometimes I had extreme fatigue but not chronic so no diagnosis. I followed treatment by natural doctor who gave me CoQ10, vit D and several supplements to get my gut better. I got much better but then I got another very annoying problem, my acne went worse, so I was prescribed tetracyclines for 3-4 months I think (no side effects) but 2 months later I think, I crashed after playing sports intensively and then developed ME/CFS (October 2016)

    I have read from the research of OMF (and also here on PR) that tetracyclines have a damaging effect on your mitochondria if you use long-term antibiotics which I did (and also a lot of others here I read) and also on your gut microbiota. Could this be the reason why I developed ME/CFS even if there was a period of 2 months between where I felt completely healthy? The combination of my pre-existing gut issues and extreme fatigue and then the destroying effect of the ABX?

    But sadly my acne went back for a while and I already tried again different lotions prescribed by my dermatologist but with little effect. I am afraid to take tetracyclines again long-term. So I am considering to take Accutane. But I have read about this powerful drug and the risks you take to develop long-time side effects :(. I have read here on PR about people who think they developed ME/CFS from this drug... Is there anyone with ME/CFS who took the drug afterwards for the first time? Or anyone who could tell me if this is a good idea?

    Greetz TG
     
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  2. Learner1

    Learner1 Forum Support Assistant

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    It might be wise to pursue getting your B vitamin and vitamin C status up yo par first. Deficiencies of these have been linked to acne, as well high carbohydrate diets. Acgut compromised by antibiotics won't help either.
     
  3. JES

    JES Senior Member

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    Accutane was pretty heavy stuff for me, after a few weeks on it my joints felt like the ones of a 70 year old and I developed a mild pain around my liver. Having said that, I think it's a better option than long-term tetracycline for someone with CFS/ME and also much more effective against the acne itself. I took tetracycline in my teens for half a year and I have often wondered if it had a part in me developing CFS/ME symptoms later in life. But bottom line I guess is that probably one third of the population has been on these antibiotics for acne, so it's hard to draw any connection to CFS/ME when it was so commonly prescribed.
     
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  4. AndyPandy

    AndyPandy Making the most of it

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    My niece took this for acne as a teenager and ended up with ulcerative colitis. She remains unwell at 37 years old.

    She doesn't have ME.
     
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  5. Learner1

    Learner1 Forum Support Assistant

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    Let's try this again.... Its diet, not drugs...

    The Dietary Cure for Acne https://www.amazon.com/dp/0978510917/ref=cm_sw_r_cp_apa_60auAbCKYR270

     
    Last edited: Jan 5, 2018
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  6. ljimbo423

    ljimbo423 Senior Member

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    Hi TG95- From the little reading I have done on Accutane, it seems like it can be hard on the gut.

    I am convinced that the 35-40 courses of antibiotics I took over many years, for many things, severely messed up my gut and caused my CFS. Antibiotics can cause dysbiosis and dysbiosis can cause a intestinal permeability or a leaky gut.

    Another thing I find interesting about your post, is that you crashed while playing sports INTENSIVELY. Intensive exercise also increases intestinal permeability or a leaky gut.

    I also think gut issues can cause or contribute to acne too.

    Here is a link to a thread here at PR that talks about antibiotics and developing CFS.

    http://forums.phoenixrising.me/inde...-use-for-acne-minocycline-tetracycline.21195/

    All the best, Jim
     
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  7. ljimbo423

    ljimbo423 Senior Member

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    Hey @TG95 - Here is a post from the link I gave you above. It sounds very similar to your experience.

    Jim
     
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  8. TG95

    TG95

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    @Learner1, Okay thanks for the information! But I have to say that it's in the family, my both older brothers have the same problem with acne. I am 22 and my oldest brother 25 and he is still not get rid of his acne and is left with quite a lot of scarring. I have already some scarring so I have to do something. I suffer more of subcutaneous acne so the risk of scarring is higher I think. I do know that diet and stress can contribute to your acne but I feel that I just have bad genes :(. So I would never take Accutane if the acne isn't really bad or if no scarring will left. But from looking at my brothers I can see that this probably will happen. Tomorrow I will read the reviews of the book you sent because it looks very interesting, thanks! I agree with the fact that drugs are not always the right decision but sometimes you can not resist.

    @JES, How long have you been on Accutane? Yes I also think that's a better option than taking long term ABX... but it's not an innocent medicine. The possibility to get inflammatory bowel disease really scares me. Had you get good results after taking Accutane? Yes you are right, a lot of people took tetracyclines and didn't get sick. They are lucky guys.

    @AndyPandy , oh no that's really a sad story! I had already read about the massive lawsuits from patients who developed inflammatory bowel disease. I'm currently taken mesalazine prescribed by KDM and I heard from another patient who has ulcerative colitis that you also could get ulcerative colitis from this medicine.
     
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  9. TG95

    TG95

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    Hi @ljimbo423, yes indeed, as you can see the story of AndyPandy.

    That's quite a lot of antibiotics! Except the 3-4 months of ABX for acne, I didn't take much ABX in my life.

    I remember your story from my introduction tread. You mentioned you got good improvements from your own treatment plan.

    Yes indeed I had read this but the question is why didn't top sporters has symptoms from their increased intestinal permeability.
    I'm under treatment by KDM for my gut and I asked him why I got CFS after sporting intensively and then he gave a whole explanation of my gut which I now mostly forgot due to my brain fog.

    Thanks for the link to the story! It's indeed really similar to my situation! The crash after overdoing is just the same.
     
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  10. TenuousGrip

    TenuousGrip Senior Member

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    My eyes were chemically burned, are severely dry, and are chronically painful (corneal neuropathy).

    Through that, I have met lots of other people on various forums for people with serious eye problems.

    Lots of them came to have their eye problems because of Accutane.

    If you Google "Accutane Meibomian Gland Dysfunction" you can see what I mean.

    Would this happen to you ? I don't know. Probably not. The odds are against it.

    But it's a bit like a plane crash: they're exceedingly rare but devastating when they happen.

    Having something like Meibomian Gland Dysfunction doesn't sound so bad but it can be both disabling and the source of chronic, untreatable eye pain.

    Which ... I promise you ... you do not want ;-)

    All the best of luck with this. Not fun, I'm sure.
     
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  11. Learner1

    Learner1 Forum Support Assistant

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    @TG95 Some of those genes might have to do with your need for B vitamins and antioxidants.... You may have a greater need them some people. Or, perhaps your genes cause you to process carbohydrates differently...

    Good luck... I hope you find some good answers!
     
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  12. ljimbo423

    ljimbo423 Senior Member

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    I think there are many things that can cause dysbiosis and leaky gut and antibiotics are one of, if not the number cause.

    I think if the top sporters you speak of had serious dysbiosis and leaky gut from months of antibiotics, some of them would also develope CFS.

    I think the intensive exercise is just enough in some that already have significant dysbiosis, to push that person into CFS.

    Jim
     
  13. TG95

    TG95

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    @TenuousGrip, oh no another sad story :( I'm sorry for you, that's really not fun! If that happens you are probably very angry on yourself for taken the drug...
    I like your comparison with plane crash.
    If I take the drug and it works good with no bad side effects, despite having ME/CFS I would feel insane, finally something that really helps me... Mentally, it will give me a strong boost.
    But if I suffer from bad side effects like you, I would feel very sad, another problem above ME/CFS, very hard to cope. But this is less likely the case...
    I will make an appointment with my dermatologist and see what she suggest, will be a hard decision.
    Thanks
     
  14. caledonia

    caledonia

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    Going gluten free cleared up my acne.

    3-4 months of ABX without taking probiotics would be enough to screw your gut up.

    If you want to try to fix your gut, check out the 4R Gut Rebuilding Program in my signature link. The 4R was developed by the Institute for Functional Medicine.

    If you're not getting very far after a few months, consider toxic metals like mercury.
     
  15. ljimbo423

    ljimbo423 Senior Member

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    I don't know how to read your microbiome test. It's possible that you don't have significant dysbiosis anymore but you still have a leaky gut that needs to be healed. Glutamine and colostrum are very good for that.

    If you do still have dysbiosis, my personal view on taking antibiotics for the gut is that it might help, it might do nothing or it might make things worse.

    There is very little understanding on exactly what specific bacteria antibiotics kill of in the gut. With that uncertainty, the outcome of antibiotic treatment for dysbiosis is unknown.

    I have done and am doing incredibly well with not high doses but moderate doses of daily herbal antibiotics. They are much more gentle to the gut than pharmaceutical antibiotics and I think they do little to no harm to the healthy bacteria in gut, at moderate doses.

    Jim
     
  16. hinterland

    hinterland

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    My advice would be not to take Accutane. I wish I hadn’t. I’ll never know for sure how influential it was in precipitating the decline in my health, but if I could go back in time I’d not take it.

    Instead try probiotics, acetyl-l-carnitine and biotin. Don’t venture down the route of mega-dose B5 either, that was another mistake I made. Good luck.
     
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  17. TG95

    TG95

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    @ljimbo423 , sorry I deleted the previous posts because my name was on 1 photo...
    I'm currently taking Zeolite for leaky gut, pulsing rifaximin and bio-kult and mesalazine for the gut. I have also my concerns about taking antibiotics to heal my gut while my microbiome seems not that bad. But I will do what KDM prescribes me until the next appointment and then ask if I still have dysbiosis and if I could switch to herbal antibiotics. Is it a good idea to just add glutamine or colostrum because I take lots of other supplements (Chlorella, DHA, Choline, PQQ)?

    @caledonia Thank you for the information! I didn't take probiotics while taking antibiotics for a long time. I'm now quite sure that this has led to my CFS

    @hinterland Oke thank you for your opinion. After reading all the bad stories, I probably go on with safer medications.
     
  18. Judee

    Judee

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    Has your dermatologist had you try something like Duac gel? It is a combination of Clindamycin 1% and Benzoyl Peroxide 5%. It works extremely well on cyst type acne (as well as boils). I've found it is a lot cheaper though if you have them write the rx for the Clindamycin by itself and then use otc Benzoyl Peroxide with it.

    Also I have Keratosis Pilaris which mimics acne (red pustules) and my dermatologist wrote a rx for Finacea gel and that clears it up very quickly especially if I combine it with otc hydrocortisone cream. Maybe you could ask the dermatologist about something like that.

    Also my cyst type acne went away for the most part when I stopped using cow's milk dairy. Just some suggestions as a less dramatic alternative to the Accutane.
     
    Last edited by a moderator: Jan 6, 2018
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  19. pattismith

    pattismith Senior Member

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    Hi @TG95

    i am another patient who had tetracyclines for months or years as a teen for acne.

    The first symptom I had from it was headache/brain fog, then after some years muscles symptoms.

    Tetracyclines can have side effects like intracranial hypertension (accutane as well!), and impaired neuromuscular junction (or impaired ion channels)...

    So if you have already some of these symptoms, taking one or the other of these drugs can be risky.

    I also suffer from cyclic hormonal acne. I manage it with

    -mustard powder masks (apply less than 1 minute)
    -crotamiton cream (I don' know the brand name in your country)

    These two products have anti inflammatory properties and the ability to kill skin mites (Demodex)

    Mustard also have antibacterial activity.

    Vitamins and anti-oxydant will also help your acne to cicatrize better and quicker.

    Good luck
     
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  20. TG95

    TG95

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    @Judee , thanks for the good recommendations!

    @pattismith yes I have headaches, brain fog and muscles symptoms but it didn't develop during taking tetracyclines or shortly after. But thanks for the information of intracranial hypertension, this is the first time I heard of it. I suffer from daily severe headaches (behind my eyes), eye pain and blurred vision. So it would be good to check this, I want discuss this with my GP. Are these symptoms quite common for ME/CFS or not?
     
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