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Posted
11 hours ago, guitarman01 said:

Even during periods of extreme ed, All hormones have tested relatively normal. You could find this in PFS as well.


Yes, this is very true and it's one of the big mysteries. I myself had this problem (normal, even high  testosterone from TRT treatment and still had ED). Really the only way I have seen it treated is to still give testosterone and try to overwhelm the androgen receptors. But this still sometimes does not work.

What more progressive doctors are doing is prescribing a compounded testosterone cream from a compounding pharmacy. It can be custom-made with a much higher % of testosterone than what you can find in Androgel or Testim. It costs less too. You then apply it to your scrotum daily instead of your arms/shoulders. T cream applied to the scrotum will raise DHT faster and higher than anything else, and that does help libido and ED after a couple of months.

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Posted
1 hour ago, Benjamin94 said:
TSH does fluctuate naturally, as long as it remains in the normal range its fine. You are Euthyroid. 

I think you do need your Testosterone measuring and Prolactin if they havn’t already been done.

Testosterone is likely to be normal given that your FSH and LH are normal, but it would still be worth doing.

Prolactin definately needs to be done if it hasnt already, especially if you are getting headaches.

The skin dryness is mostlikely attributable to the drug, which has permenantly reduced your sebaceous output. This is one of the key ways it prevents acne long term. You can get a moisturizer.

Facial Redness and Flushing - likely idiopathic (i.e. Rosacea). Very difficult to do anything about. Theres a forum dedicated to Rosacea, where they discuss different creams in details.

Anxiety and Depression - Find something you enjoy doing. Maybe its going swimming or to the sauna. Find something which relaxes you, which you can do cheaply each day if necessary.

I love hearing the word permanent in relation to Accutane - NOT

Do we really know for sure that sebaceous output is permanently altered?

I thought Jason3 said sebum production increased via testosterone treatment. Not that I’d consider treatment just to fix sebaceous glands but hey it still gives me hope that some oil may one day return.

Using moisturiser is helpful at times but nowhere near the same as just having some regular oil back in the skin.

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Posted (edited)

We need you to report your sides! We must make the regulators acknowledge
POST ACCUTANE SYNDROME!
I know that in the big scheme of things taking action won't necessarily help you but it will stop this happening to others and I really hope that by getting recognition we can then insist on a task force to research the condition and find a cure!
Many men are now coming forward but it is mostly older men who have been suffering for years - we still need young men to come forward
to report their side effects and to explain how accutane impacted their lives.

 

We need age and sex(compulsory for yellow card purposes).  approx. dosage and duration. List of side effects and please include suicidal ideation if you have ever experience this.
Describe you case history as if you were telling your story to a solicitor.
 
Optional - explain why you never reported before - I want decision makers to try and understand why young men don't come forward.
Optional - explain the way in which your dermatologist treated you before during and after accutane.
 

Its a very sad thing to imagine the amount of young people suffering in silence.

Those with a voice must speak up and thankfully it can be done anonymously if you prefer.

 

Below is a list of emails -  you can copy and paste and send as one.

You must state that you are addressing them all as individuals and that you want an acknowledgement and a response from each of them.

 

Optional  - cc me in so that I can gauge response and evaluate  how data is being recorded.  samward4@hotmail.com

 
Best

Sam

 

The lead person heading up the next review is      tatiana.magalova@sukl.sk     cc  pavol.gibala@sukl.sk

 

 june.raine@mhra.gov.ukalmath.spooner@hpra.iejan.neuhauser@ages.atmarianne.lunzer@ages.atjean-michel.dogne@unamur.beLaurence.Defays@fagg-afmps.bemaria.popova@bda.bgjulian.eftimov@bda.bgnikica.mirosevic@halmed.hrzeljana.margan@halmed.hraandreou@phs.moh.gov.cyjkkolos@phs.moh.gov.cyjana.mlada@sukl.czeva.jirsova@sukl.czdis@dkma.dk;TCA@dkma.dkmaia.uuskula@ravimiamet.eekatrin.kiisk@ravimiamet.eekirsti.villikka@fimea.fikimmo.jaakkola@fimea.ficlaire.ferard@ansm.sante.frcaroline.laborde@ansm.sante.frmartin.huber@bfarm.devalerie.strassmann@bfarm.deleokli@eof.gr;akapou@eof.grpallos.julia@ogyei.gov.hupalfi.melinda@ogyei.gov.hugudrun.kristin.steingrimsdottir@lyfjastofnun.ishrefna.gudmundsdottir@ima.isalmath.spooner@hpra.ieruchika.sharma@hpra.iec.macchiarulo@aifa.gov.itA.Cupelli@aifa.gov.itzane.neikena@zva.gov.lvZane.Stade@zva.gov.lvjolantagulbinovic@vvkt.ltSimonaKudeliene@vvkt.ltMarcel.Bruch@ms.etat.lu;n.petitpain@chu-nancy.framy.tanti@gov.mtjohn-joseph.borg@gov.mtnlhphar@cbg-meb.nlnlhphar@cbg-meb.nlhelgahaugom.olsen@noma.nokristin.kvande@noma.noaprzybylkowski@interia.plmagdalena.budny@urpl.gov.plana.martins@infarmed.pt;marcia.silva@infarmed.ptroxana.stroe@anm.ronicolae.fotin@anm.rotatiana.magalova@sukl.skmilena.bergoc@jazmp.si;gabriela.jazbec@jazmp.sidmontero@aemps.eseasegovia@aemps.esHPHARMACOVIGILANCE@mpa.sejulie.williams@mhra.gov.ukpatrick.batty@mhra.gov.ukttrenque@chu-reims.frmarieke.debruin@sund.ku.dkstephen.evans@lshtm.ac.ukBrigitte.Keller-Stanislawski@pei.deherve.le-louet@aphp.frLennart.Waldenlind@outlook.commarco.greco@eu-patient.euavanderz@xs4all.nl;ray@andersonspharmacy.co.ukmyhr@online.no

 

 

 

andrew.beint@alliancepharma.co.uk   
pharmacovigilance@alliancepharma.co.uk              (Manufacturers of isotretinoin)
 
 
medinfoeurope@sunpharma.com                         manufacturers of isotretinoin
 
 
simon.rivers@roche.com 
burgesshill.pm@roche.com                            Simon Rivers in main contact for isotretinoin UK, the 2nd two email addresses may not be the best ones to use but they are the only onesI could find
 
 
Leigh.Henderson@mhra.gov.uk                  Leigh Henderson  MHRA
Edited by hatetane

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Posted (edited)

Removed by author.


 

Edited by Deleted Account

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Posted (edited)

Hi True Justice

So of course sebaceous output returns in some people - these will likely be the people for whom acne recurs.

Unfortunately accutane isn’t a magic wand for acne. It has a mechanism and that mechanism is shrinking the sebaceous glands and that comes at a cost, which is xerosis.

On a side note, I dont think you’re using the term Eye Floater correctly. An eye floater is a spot of vitreal degradation. I’ve never heard of accutane causing eye floaters. I think you might be talking about meibomian cysts, often called styes (although strictly styes means hordeola its commonly used for meibomian cysts), which are caused by accutane.

Edited by Benjamin94

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Posted

Yeah I dunno, I just call em what everyone else over the years on forum has called them - eye floaters 

What side effects are you currently combating?

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Posted (edited)

23, M.
Diagnosis: Widespread Truncal Acne
Treatment: Isotretinoin 60mg OD on week 10. 

Side Effects:
Dry Lips, Blepharoconjunctivitis, Styes, Eczema, Mild Depression, Myalgias, Facial Erythema

The initial breakout was bad, but its starting to get exciting now because everythings improving.

WRT Depression. I was mildly depressed before taking Accutane, but i would say the drug has exacerbated it. However whether this is due to lifestyle changes (due to the drug - not going outside for instance) or a direct effect of the drug on the brain, I do not know.

Btw - everyone else is wrong - they’re not eye floaters and if we’re going to be serious about reporting side effects, we have to be correct.


 

Edited by Benjamin94

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Posted (edited)
On 6/21/2018 at 8:13 PM, Benjamin94 said:



 

Removed by author.

Edited by Deleted Account

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Posted
24 minutes ago, Devolution said:
1 hour ago, Benjamin94 said:

23, M.
Diagnosis: Widespread Truncal Acne
Treatment: Isotretinoin 60mg OD on week 10. 

Side Effects:
Dry Lips, Blepharoconjunctivitis, Styes, Eczema, Mild Depression, Myalgias, Facial Erythema

The initial breakout was bad, but its starting to get exciting now because everythings improving.

WRT Depression. I was mildly depressed before taking Accutane, but i would say the drug has exacerbated it. However whether this is due to lifestyle changes (due to the drug - not going outside for instance) or a direct effect of the drug on the brain, I do not know.

Btw - everyone else is wrong - they’re not eye floaters and if we’re going to be serious about reporting side effects, we have to be correct.


 

They are eye floaters, I have cobweb like strings and circles that are translucent that fall down on front of my field of vision constantly.
Very well you do have Eye Floaters. I apologize.

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Posted (edited)

Removed by author.

Edited by Devolution

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Posted
8 hours ago, Devolution said:

I may as well add my side effect timeline to this form in full, I can't exactly remember what order and if more actually appeared on accutane. I thought a lot of the stuff was normal and gradually crept up on me until I went off the drug and things rapidly went downhill.

During Accutane
-Muscle weakness (went gym couldn't lift 5KG with left arm, thought I was unfit as I'm usually a strong guy)

-Skin not healing (red marks last months and scarring occurred, never scarred previously in my life)

-Blurred vision(One day had to go a few feet from my TV, couldn't see it and also noticed I couldn't recognise peoples faces while outside untill very close and also have night vision issue's)

-Eye floater

-Increased Tinitus (had very light ringing previously which I now blame on SSRI use, but it was not noticeable unless i tried to hear it, on accutane it gradually got louder)

-Ghosting vision

-Slight decrease in libido (women just didn't interest me as much, didn't feel the fire in my stomach, the excitement)

-Skin (odd feeling or sensitive to touch on chest, kind of sore)

-hair growth on upper cheek's almost reaching eye

-Flakey scalp, hair not as thick (I had VERY good hair, was the thing I liked about myself)

-Peeling skin

-Memory issues 

Post Accutane

Mostly all the above apply but are either worse or have adapted into something else.

Hair (Dry, Flakey, shedding, receded slightly, can see through it with light and overall just doesn't look like it was pre tane, scalp also sore, sometimes itchy and has no sign of slowing down)

Genital anesthesia (one day my whole penis decreased in sensitivity, then it came back, then it went again and never came back yet, pressure in anus, testicles reduced sensation even if hit.)

-Libido (none existent, naked women do nothing for me, I feel a distant feeling in my body that I know I used to like it, but I can't access the feeling. If anyone ever saw the movie Get Out, you'll understand)

-Penis ( erections are a struggle to get and are barely rigid if I get one at all, morning erections almost non existent, ejaculation force basically gone, ejaculation pleasure is basically gone with no dopamine rush, reduced semen volume)

-Anhedonia (gaming, music and art the thinks I loved all my life now do nothing for me, no emotional connection, no excitement to play a new game or hear my favourite song. This affects everything I do not just those three)

Skin (red easily, burns if scratched, indents easily, very strechy like elastic and very fragile, can see some veins under it whereI compared pre Accutane and was fine, I also have weird broken down fat under my skin now which is painful)

-Eyes (Visual snow 24/7, blue field entoptic phenomenon, after images, shimmering vision, eyeballs twitch when focusing, eyes seem to not be aligning correctly and sometimes I see my left eyes image slowly merge with the rights, ghosting vision, light sensitivity which makes me stay indoors all day. Eyes adapt to light like a camera and dims everything around me and can flicker between light and darker. Multiple string's and dots that come down over my vision which are floaters. Struggle to see in the dark and I get random flashes of pink light in my peripheral vision, I no longer see details on plants or other things at medium to long distance)

-Hearing (ears ring very high pitched and feel a sense of fullness all the time, I can't ignore it and my hearing feels Weird, some days I find thing's to be louder and sometimes lower, I struggle to hear certain speech in movies now and while in crowded conversations.)

-Numbing/muted body parts (this is the weirdest one I find, certain parts of my body are now muted or feel like when i touch them they aren't mine. My bicep skin, my hands, my chest and my feet feel muted along with my lips which inget no pleasure for if i kiss someone. if I put a piece of ice on my chest it doesn't feel right, like it's not that cold or doesn't give me that "Get it off!" response, other parts are muted to pain, i got cut when i was working and it wasn't sore, i didn't even know i was cut till I looked, also my bladded just became muted recently as i call it, when my bladders full normally I'd of got a slight pain to notify me i need to urinate, now I don't really feel the urge to go but I know I have to if that makes sense?)

-Joint/Bone/tendon pain ( certain joints pop and crack and feel sore, my shoulders hurt if i move them around and crack along with my wrists and fingers, if i lift stuff my tendons hurt in my arms.)

-Fatigue/weakness (some days i feel like acid has been injected into my muscle's, they all burn. I feel weak most of the time and even find raising my arms tiring, my grip strength feels weak along with my other muscle's, sometimes I get an electric shock when i stretch my arms out.)

-Smell/Taste (Food is bland now, i have about 20% smell at best and none at my worst, I don't know what's wrong, i never heard of accutane causing this unless it damaged my nerves, this makes life bland and eating is just something I do to live)

-Twitching (My fingers twitch and i can feel the vibration in my forearm thats causing it, its a really weird feeling)

-Stimulants (Not even sure how this one makes any sense but alcohol doesn't really do anything for me anymore, I used to be a lightweight, took about 3 cans to feel drunk pre Accutane but now I don't feel anything, I gave up drink while on it and to be honest I don't really drink much as it is but recently I drank a fair bit of vodka and all it did was give me a headache, no feeling beyond that i didn't feel drunk or tipsy just felt the same, then the same went for cider a different day and other types of alcohol, it just doesn't do anything as far as i can tell but im not 100% sure on this one as I've only heard this one with antidepressants not accutane)

I don't really think or feel anything, im just in this very moment, i find it hard to recall anything and typing all this stuff is a challenge for me so I apologize if its a bit messy and if i missed stuff, I'll add onto it if i remember anything else, I'm very spaced out and the top of my brain always feels weird, I don't recognize myself  in the mirror and my mind is very distant from me along with my body and I have this annoying left ear pressure which pops sometimes, my left side of my head feels pressure sometimes too. To be honest as much as I want to stay positive I'm not really living right now, im only 20 and im house bound due to my eyesight and other issues the past 10 month's, my mind keeps having odd memories of my childhood but the middle of my life is distant, sometimes I think what would i be if I didn't take accutane, I have no joy or interest or motivation with life. I feel that living a life of nothingness is much scarier than death which would spare me this torture. But i feel like I can't even do that because it'd hurt my family so im stuck in limbo, I can't live and I can't die. I found a post on Reddit which basically sums up my mind right now and will paste it in, it's almost me exactly and once again I'm sorry for this being a downer but I'm genuinely frightened even though I cannot feel that emotion, i just know some of this stuff hasn't even been experienced to this extent by people and i feel like im the most unlucky person in the world. If i could get my eyesight, penis and emotions bsck that'd be a life worth living at least. I shall give it time.

Reddit Post

¨ I have no desire to go on vacation, and if I do, I can’t enjoy it.

¨ I don’t care what I eat.

¨ I get no enjoyment from flowers, art, sunsets, or other things of beauty.

¨ I feel completely flat during special occasions or touching moments such as weddings, the birth of a child, birthdays and other celebrations.

¨ I still have negative feelings such as anger, sadness and frustration, but sometimes they seem less intense than before.

¨ I have no desire for, and get no pleasure from sexual activities.

¨ I feel utter despair at times in having to live in this awful state, and yet I also don’t care at the same time. ¨ I try to explain what is happening but people don’t understand.

¨ I “fake” feeling positive emotions around others. I pretend to care when I don’t and smile when I feel totally flat.

¨ I “think” my way through relationships, doing what I know I should be doing, like hugging and kissing people at the right times.

¨ [Only for those who have lost someone close] I cannot grieve the loss of someone I cared about who died.

¨ My life doesn’t make sense anymore because there is nothing I can enjoy. It all feels pointless.

Other
• Difficulty remembering things, learning, concentrating, or focusing.

• Finding things funny, but not like before. It’s a different sense of humor, and doesn’t feel as good.

• It was a sudden change when it happened. One day there was feeling and then it was gone.

• Difficulty remembering dreams, or not dreaming vividly anymore.

• Having a “blank” mind a lot. Not thinking about much or staring off.

• Headaches when it first came on. Possibly due to sudden drop in dopamine.
 

What have you had tested?

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Posted (edited)
On 6/23/2018 at 2:31 AM, Colinboko said:
On 6/22/2018 at 5:40 PM, Devolution said:



 

 

Removed by author.

Edited by Deleted Account

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Posted

So the only doctor you’ve seen is your GP?

How long have you been off Accutane?

Did you GP do a neurological exam? 

I think most of your symptoms are mostlikely psychosomatic. Mental Health Conditions (Anxiety and Depression) can produce all sorts of weird symptoms all over the body. We all know that when you’re very anxious (before an exam) your bladder becomes weak, you feel butterflies in your stomach etc. With mental illness similar things happen. By all means push to see a neurologist, but I doubt they’ll find anything. Which is good - believe me you don’t want MS or a polyneuropathy. The treatments for MS make accutane look like smarties.

 

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Posted (edited)
On 6/23/2018 at 8:09 AM, Benjamin94 said:


 

Removed by author.

Edited by Deleted Account

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Posted
On 6/21/2018 at 10:02 AM, Benjamin94 said:

Hi True Justice

So of course sebaceous output returns in some people - these will likely be the people for whom acne recurs.

Unfortunately accutane isn’t a magic wand for acne. It has a mechanism and that mechanism is shrinking the sebaceous glands and that comes at a cost, which is xerosis.

On a side note, I dont think you’re using the term Eye Floater correctly. An eye floater is a spot of vitreal degradation. I’ve never heard of accutane causing eye floaters. I think you might be talking about meibomian cysts, often called styes (although strictly styes means hordeola its commonly used for meibomian cysts), which are caused by accutane.


Im pretty sure he's talking about vitreous floaters and I have them post accutane too along with photophobia and dry eyes. 

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Posted
5 hours ago, marshl1 said:

Im pretty sure he's talking about vitreous floaters and I have them post accutane too along with photophobia and dry eyes. 

Yep - that’s me too, esp The photosensitivity!!

Question: Why are people still suggesting cognitive issues are just psychosomatic??

Is it too hard to fathom that if we have these issues going on with our eyes, some of us also have brain impairment issues too? Why is that hard to fathom, are the conclusive tests posted not enough to persuade people?

Now I will also say, I’m not entirely sure how to go about diagnosing these cognitive issues - is it a cat scan, an MRI, is it this chronic inflammation, is it a lumbar punch....I’m just not entirely sure what is needed here??!

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Posted (edited)
On 6/24/2018 at 12:10 AM, TrueJustice said:

 

Removed by author.

Edited by Deleted Account

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Posted

Hi, 

I’ve been suffering with acne for a very long time. I’ve done a Roaccutane course 2 years ago and I had really bad side effects. It took me months to recover. 

My dermatologist now gave me a topical cream that has 1% Retinol in it. I’m actually a little bit scared to start is, because I don’t know if Retinol goes in your blood and because it’s also a vitamin A could cause the same side effects as Roaccutane did. 

So my question is: does anyone know if over the counter Retinol (not Tretinoin) goes in your bloodstream or there are any risks of side effects? I don’t want to do any further damage. 

Thanks!

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Posted (edited)
On 6/24/2018 at 12:59 PM, HideAndSeek said:

 

Removed by author.

On 6/24/2018 at 12:59 PM, HideAndSeek said:

 

Edited by Deleted Account

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Posted (edited)

Removed by author.

Edited by Deleted Account

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Posted

We really should break up this thread into two; one for research and theories, another strictly for supplements and what's working/not working for you right now, etc..

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Posted (edited)
@mariovitali
@Dubya_B
@ACCUiTy_drANE
So here we go. Possible correlations.
This could mean any number of outcomes, or not relate to this at all.
obviously we have heard of antibiotic resistance,
what about fungal resistance?
looking at dysbiosis the definition could fall in line with a microbial imbalance that's not a outright infection.
This in turn could trigger autoimmunity and inflammation. 
To me this is at least evidence of possible microbial alterations. 
That might remain permanent. 

  Antifungal properties of selective serotonin reuptake ... - Oxford Journals
by C Lass-Flörl - ‎2001 - ‎Cited by 66 - ‎Related articles
In conclusion, our in vitro studies clearly demonstrate antifungal effects of SSRIs. Animal studies are needed to evaluate the potential role of these psychotropic ...
 

In Vitro Analysis of Finasteride Activity against Candida albicans ...

aac.asm.org/content/58/10/5855.full.pdf
by AA Chavez-Dozal - ‎2014 - ‎Cited by 12 - ‎Related articles
May 16, 2014 - clinical utility of finasteride in the prevention of urinary candidiasis is ... with standardantifungal drugs, and finasteride is one of several.
 

Fungistatic activity of all-trans retinoic acid against Aspergillus ...

by E Campione - ‎2016 - ‎Related articles
Apr 29, 2016 - Recent reports hypothesize that the antifungal efficacy of all-trans retinoic acid (ATRA) is mainly related to its strong capacity to stimulate ...

Is it harder to kill fungi in the body than bacteria? If so, why?

The treatment of fungal diseases is more difficult than those caused by bacteria. Because bacteria are prokaryotes, the makeup of their cells are very different than our own eukaryotic cells ( cells containing membrane-bound organelles) and pharmaceutical products, such as antibiotics, are able to successfully destroy bacteria without harming much our cells, tissues and organs. However, because fungi are eukaryotes, finding a treatment that will kill the fungus and not harm our own cells is more difficult. So most chemical treatments that are harmful to fungi are also toxic to us.
 
Edited by guitarman01

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Posted (edited)
5 hours ago, guitarman01 said:
@mariovitali
@Dubya_B
@ACCUiTy_drANE
So here we go. Possible correlations.
This could mean any number of outcomes, or not relate to this at all.
obviously we have heard of antibiotic resistance,
what about fungal resistance?
looking at dysbiosis the definition could fall in line with a microbial imbalance that's not a outright infection.
This in turn could trigger autoimmunity and inflammation. 
To me this is at least evidence of possible microbial alterations. 
That might remain permanent. 

  Antifungal properties of selective serotonin reuptake ... - Oxford Journals
by C Lass-Flörl - ‎2001 - ‎Cited by 66 - ‎Related articles
In conclusion, our in vitro studies clearly demonstrate antifungal effects of SSRIs. Animal studies are needed to evaluate the potential role of these psychotropic ...
 

In Vitro Analysis of Finasteride Activity against Candida albicans ...

aac.asm.org/content/58/10/5855.full.pdf
by AA Chavez-Dozal - ‎2014 - ‎Cited by 12 - ‎Related articles
May 16, 2014 - clinical utility of finasteride in the prevention of urinary candidiasis is ... with standardantifungal drugs, and finasteride is one of several.
 

Fungistatic activity of all-trans retinoic acid against Aspergillus ...

by E Campione - ‎2016 - ‎Related articles
Apr 29, 2016 - Recent reports hypothesize that the antifungal efficacy of all-trans retinoic acid (ATRA) is mainly related to its strong capacity to stimulate ...

Is it harder to kill fungi in the body than bacteria? If so, why?

The treatment of fungal diseases is more difficult than those caused by bacteria. Because bacteria are prokaryotes, the makeup of their cells are very different than our own eukaryotic cells ( cells containing membrane-bound organelles) and pharmaceutical products, such as antibiotics, are able to successfully destroy bacteria without harming much our cells, tissues and organs. However, because fungi are eukaryotes, finding a treatment that will kill the fungus and not harm our own cells is more difficult. So most chemical treatments that are harmful to fungi are also toxic to us.
 

Its interesting where you’re heading with this school of thought about fungus vs bacteria!!

What Products are currently available to treat fungus issues? There must be something already available surely - a drug of some sort.

Even some supplements, “oregano oil” is good for example but that’s not exactly going to be the cure for us, something stronger would be needed. Edited by TrueJustice

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Posted (edited)

Hi All, I recently found a protocol to cure PFS/PAS on Google, including soy, quercetin and sodium butyrate. The author claims that it's a long term solution. Has anyone tried this? 

Edited by 278Paulina

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Posted

Post a link, that’s vague posting without more info.

thank you 

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