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Looking forward to hearing results guitarman!!
my kinesiologist was talking to me about this today. He tested for cucumber bacteria of all things via this test.!Said its a very comprehensive test, as much as he knows how to wipe the nasty stuff out, this test also comes with a good recommendation on best foods to eat for the person having it done.
Sounds promising indeed.
Interesting study right here, and that a lower gi tract fecal transplant had no effect.
Gut bacteria influence the birth of new brain cells in mice
LIFE19 May 2016
Restarting neurons
In another experiment, Wolf and her colleagues showed that it was possible to re-establish neurogenesis by giving antibiotic-treated mice a probiotic or making them exercise, something that is knownto enhance neurogenesis in people. Surprisingly, transplanting faeces from an untreated mouse to repopulate the gut of a treated animal had no effect.
So this sucks. I got this email yesterday. Guess I'll be waiting another month.
It means a lot that you trust us to be a part of your health journey. We know youre more than ready to get some insight and find out what your recommendations have to say.
But right now youre stuck waiting, and for that we owe you an apology.
Why it happened
While we are grateful that we are growing so quickly, our order volume has more than quadrupled over the past 90 days, which has led to longer than normal processing times.
Were boosting our lab staff, adding more robots, and expanding our lab in order to meet the demand and speed up our turnaround time, ensuring you get your results and recommendations as soon as possible.Despite our efforts, we anticipate that your results & recommendations wont be ready for another 4-6 weeks.
We understand if youre disappointed, and you have every right to be.
We hope you will bear with us and continue to be part of this revolutionary movement as we grow closer to our goal of making chronic diseases truly a matter of choice.
Yours in wellness,
The Viome Team
Got my latest stool labs back. The C diff Toxin is gone which makes me happy but now it shows Candida. Looking at the low SIgA I read that one should supplement vitamin A to help bring this back up. Here is the article: https://drknews.com/low-siga-promotes-loss-oral-tolerance/ . Curious what you guys think about that. AFAIK I have no issue with Vitamin A. Just ALOT of food sensitivities that cause fatigue and joint pain. My diet is fairly strict AIP. I have an appt. with my Functional Medicine Dr next week to discuss this stool test. I have a appt. with a regular doctor in a couple weeks to discuss overall health and maybe they can help with something. Next month I have an appt. with a gastro. Dr. Curious what he will say when I show him 10 years of lab work 
My immune system is definitely screwed up. I get sick all the time, cuts usually take forever to heal and look infected. Two years ago a bug bite got infected, whole ankle swelled up. Two weeks ago my freaking right testicle got an infection and swelled up for a week. Had to take antibiotics. I want to make a big career move but I can't when I am tired and achy all the time. Need to figure this puzzle out!!!
Anyone have evidence of damage to their thymus gland due to accutane?
Yes I was thinking the same thing. Wondering how much these things naturally change week to week. I was treated for the bacteria overgrowth since my previous labs so that could be why things are more in line this time.
If anyone is curious, here is a link to decipher my lab results and just good info on gut microbes in general: https://www.diagnosticsolutionslab.com/sites/default/files/u16/GI-MAP-Interpretive-Guide.pdf
Dubya can we please hear from the scientistsor doctors who areitching to help us out!!
We never hear from those who propose to read these surveys and really want to help us.....like never, who are they, can they please stand up and talk???
I ask this out of respect for the hard work you put in. Until we hear from them I cant helpbut think we should continue working with either our GPsor Alternative practitioners to resolve our issues.....
Please correct me if Im wrong about this.....
If there is some crackpot scientist/doctor who knows more than others, please stand up and speak!!!
8 hours ago, TrueJustice said:Dubya can we please hear from the scientistsor doctors who areitching to help us out!!
We never hear from those who propose to read these surveys and really want to help us.....like never, who are they, can they please stand up and talk???
I ask this out of respect for the hard work you put in. Until we hear from them I cant helpbut think we should continue working with either our GPsor Alternative practitioners to resolve our issues.....
Please correct me if Im wrong about this.....
If there is some crackpot scientist/doctor who knows more than others, please stand up and speak!!!
This is the point of the survey. So WE can put together the data that a doctor or scientist would expect to be collected before investigating a condition like this.
Again, the questions were more directed toward why PAS patients aren't joining propeciahelp now that we are welcomed there.
As @Calcified said, he does not participate there because he believes the mechanisms of action of the drugs discussed there differ too much for our symptoms to be related through a common denominator.
Is it the same for you, or something else? Is there anything that could be changed that would encourage you to join?
Hi all.
Its been a while since I last posted (and Ive only posted a couple times) partially since I hadntseen incredibly different results and partially cause I was focused on myself, living my life, etc. This thread has been super helpful for me so I apologizefor the silence. That said, I have seen really really positive results lately. My regimen isfocused on two things: (1) inflammation and (2) most importantly, gut health (which has been a common topic on here). Heres what Im doing:
Morning-
1. AdvancedPrebiotic, BioSchwartz (right when I wake up, suggested use)
2. Probio 100B,Designs for Health (one probiotic with billions of cfu, several different strains, anhour or so after the prebiotic)
Before meals -
1. Digestzymes, Designs for Health (oneprior to eachmeal)
Night -
1. Apple cider vinegar supplement, BioSchwartz (immediately after last meal)
2. GI Microb X, Designs for Health (an hour or so after last meal)
3. GI Revive, Designs for Health (same time as above)
Just FYI, the designs for health supplements are reallyexpensive. You can get them on amazon, same with bioschwartz. But this regimen is costly. I use them based on recommendation from a holistic doctor a while back, and Amazon reviews (BioSchwartz has a shitload too). This is all basically designed to revamp my gut, and I truly think thats the path forward. My symptoms werent as severe as some of you (didnt have ED) but all the skin issues (losing hair, lifeless/dryskin) andthe psychological issues of lack of emotion, lack of that general feeling of content, inability to experience progress in the gym, etc. This routine has turned my life around. I feel like Im getting back to normal. I know it sounds like an add or some bullshit, butI dont need really know a way around this as Im just trying to say exactly what Im doing. From experience trying out a ton of supplements, the supplier and quality matters. So take that for what you will.
A couple of things to note, though. My diet is relatively clean. I experience bad side effects from heavy food (basically any Chinese food, Korean, Indian.etc. Its delicious, but damn that shit is LAYERED with oil, spices, salt etc that really doesn't agree with me). I try to stick to organic foods, salads, fish, quinoa (I eat a lot of that shit), etc. I can cheat every now and then and get fast food, binge drink on the weekends, but I do feel the negative effects. Thankfully, these are lessening more and more as I continue with the routine, workout/run 4 times a week, get lots of sleep. Believe it or not, stress will noticeably impact my skin/gut/etc. and my job can be really stressful (client services, Im an auditor, would not recommend as a life path for you young people out there). Btw Im 25, andI did some stool tests and vitamin checks, blood tests a while back but I dont have the data anymore, wasnt very helpful.I even tried supplements to fight candida, didnt do shit for me.
But I really think Im on the path toward full recovery. I have my down days but right now Im feeling great. Also, the timing of when I take each supplement has been determined through trial and error. GI microb and revive at night to clean up the bad bacteria and repair my gut lining, sleeping on it, and then introducing the good probiotics in the morning to prepare me for the shit Im gonna eat during the day is KEY. If you can find cheaper supplements that are as effective, great. Im just not fucking with the regimen I have now as its working.
Best of luck to all of you, I know the treatment may not be universal for everyone but I just hope you can find something that works for you.
10 hours ago, Dubya_B said:This is the point of the survey. So WE can put together the data that a doctor or scientist would expect to be collected before investigating a condition like this.
Again, the questions were more directed toward why PAS patients aren't joining propeciahelp now that we are welcomed there.
As @Calcified said, he does not participate there because he believes the mechanisms of action of the drugs discussed there differ too much for our symptoms to be related through a common denominator.
Is it the same for you, or something else? Is there anything that could be changed that would encourage you to join?
This is the only forum Im on. Its great that other forums exist and Im sure if theres any useful information to be found somewhere else itll make its way on tothis forum soon enough.
About a year or so ago I did throw a bone to those saying report your side effects, I posted my story and my side effects at length, Idid that and several months later I asked for a follow up and no one responded!!
Also, wasnt there money offered on another site to find a cure?, again that was years ago, what resulted from that?? To my knowledge nothing happened....
Im notagainst the power of a group coming together to find a cure, Im just not seeing any doctors or scientists banging down our door to help. It cant be that none of them have heard of our dilemma- Adverse Accutane side effects have been on the Internet for close to 20 years if not more. Whats stopped a doctor from coming forward wanting to help? If they really wanted to help, they should be coming out of the woodwork imo
Im of the belief its up to us to go and seek help from doctors, alternative practitioners, specialist etc, not necessarily the other way round.
ps - its a valid point about getting data collected, having said that hypothetically speaking- what would they do that hasnt already been thought of? If the problem lies say in fixing gut health I dont think theyd use a method that isnt already being used imo. As weve seen lately with people posting results, medical industry has come a long way in identifying ones gut health...there are plenty of options now to do these tests.
I will say Propeciahelp.com is more active, there's more information to be had, thoughts to exchange, things to learn atm.
As far as bridging the gap between whats called pfs and pas, there are too extreme similarities in some cases to be denied.
That being said propeciahelp is very hormone centric, (which is understandable since they took a antiandrogen) and seem to be hit harder in this regard as opposed to Accutane victims in general.
There are plenty there though who look for answers outside of hormones and everything from gut health, to autoimmunity is covered as well.
Ill probably split my time between the two atm.
@TrueJustice Could I ask what any of your previous post has to do with propeciahelp and what could be done to encourage PAS patients to join and participate there?
Where did you report side effects and tell your story without a response?
That is a good point about the RxISK prize money. It is supposed to go toward research after a certain time passes without a reproducible cure or treatment for post-post-drug sexual dysfunction being found.
And the entire point of coming together as a group is for us to get together and go banging on the doctors' doors. They won't come to us.
.
@IndigoRushReturns That is great that you are still working to raise awareness. I recently took part in a casual interview with another PAS patient that should be on youtube soon. Let's hope what we are doing makes a difference.
Well, its more a rant about what anyone would benefit from joining if theres no doctors or scientists stepping forward to show they want to help. I mean are there doctors on that forum offering anything? Any scientist offering solutions? My idea of partaking in a survey is that there are really smart connected people at the end of it yeah to interpret the data. Who are they?
I couldnt even tell you what page it was on but it was a link from this forum that I went and posted my story on. Its possible others did too. Ill trawlthrough some photos as I think I screen shot the site.
I really dont want to discourage anyone from joining propeciahelp, it just would be nice to hear from the other side, the doctors etc who they are trying to reach rather than a one wayapproach. It would give people more hope would it not?
Found it:
regulations.gov
A citizen petition to do with federal decision making for drugs. Might of extended beyond just Accutane
Nov 2018
On 8/12/2019 at 2:54 AM, IndigoRushReturns said:My life remains very difficult, and my quality of life is a shadow of what it could have been.
I think most of us could agree with this. Appreciate you starting this thread and doing what you're doing. I do a lot of driving for my job and il take a real listen when I get a chance in the near future to some of these videos, and support Toms efforts as well.
Id imagine there is for sure. Similar to this forum that for the most part has had smart well intentioned posts over the years albeit from just victims only as far as I know. Maybe one or two outsiders whove tried to help...
Again though, its just full of opinions from victims - great stuff that has paved the way to where we are today but mostly regardless of the depth it remainsjust opinions.
Do we know of any doctors though who want to come to our aid? Not a victim though of either drug, just someone whoseesour plight and wantsto help?
That would be very encouraging to hear!!
ps my kinesiologist still believes its HPA dysfunction, I continue to smash the bad bacteria via ALA and Andrographis. Yesterdays treatment we picked up body wanting fish oil - could be for the inflammation they said
I kinda figured if my body is still full of VitA, the last thing Id react positive to would be fish oil??Although my body still wants Taurine in the mix too whichis for bile flow issues apparently....
Is it possible to have bile flow issues but have no issue with Vit A??
Im better, nodoubt about that but Im not fullycured yet.
Hey all.
What seems more likely - that we have a vitamin a toxicity or deficiency?
I was Vegan for several years and it didnt help matters - I wasnt getting any vitamin a; just beta carotene.
With vitamin a being important for eye health and mucous membrane health, its got to be one way or another.
Has anyone supplemented with Vitamin A? I did at one point but dont recall any effects, good or bad.
Of course, its more complicated than just Vitamin A but the dry eyes and floaters are 2 of the most irritating long term side effects for me.
If its a toxicity issue, how much Vitamin A would 60mg of Accutane for 5 months contain? (Im aware even short courses can lead to damage).
I have never heard of anyone curing the side effects; only managing them.
With all the eye issues youd have to think Vit A deficiency right?
bad night vision, dry eyes, floaters, light sensitivity issues.
Not so easy though to say for sure plus weve debated this a million times and still no one knows.
Maybe as Calcified said - a retinoic acid resistance of some sort. Sounds plausible and prob would also explain the poor wound healing which continues 20 plus years later no matter how much Zinc you supplement, things still dont heal properly!!!
On 8/14/2019 at 7:39 AM, IndigoRushReturns said:Hey all.
What seems more likely - that we have a vitamin a toxicity or deficiency?
I was Vegan for several years and it didnt help matters - I wasnt getting any vitamin a; just beta carotene.
With vitamin a being important for eye health and mucous membrane health, its got to be one way or another.
Has anyone supplemented with Vitamin A? I did at one point but dont recall any effects, good or bad.
Of course, its more complicated than just Vitamin A but the dry eyes and floaters are 2 of the most irritating long term side effects for me.
If its a toxicity issue, how much Vitamin A would 60mg of Accutane for 5 months contain? (Im aware even short courses can lead to damage).
I have never heard of anyone curing the side effects; only managing them.
What kind of Vegen diet did you follow? There are a lot of Vegan diets that arent really healthy at all.
Ive been on this forum for 3 years now and Ive read numerous people who have healed from theirside effects so Im not sure what youre talking about.Ive also been on Facebook forums and people have healed there with diet too.
On 8/14/2019 at 7:39 AM, IndigoRushReturns said:Hey all.
What seems more likely - that we have a vitamin a toxicity or deficiency?
You might want to check out this study from Penn State. Maybe show Tom as well.
Treatment of patients with isotretinoin significantly decreased monocyte TLR-2 expression and subsequent inflammatory cytokine response toP. acnesby one week of therapy. This effect was sustained six months following cessation of therapy, indicating that TLR-2 modulation may be involved in the durable therapeutic response to isotretinoin. This study demonstrates that isotretinoin exerts immunomodulatory effects in patients and sheds light on a potential mechanism for its long-term effects in acne.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614089/
There was also sort of a follow-up years later in France.
Severe Acne in Female Patients Treated with Isotretinoin is associated with Dysbiosis and its Consequences
https://pdfs.semanticscholar.org/aa42/f3e7260c399337f8e74faac8f8899ccce5ee.pdf