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So im still waiting on my Viome test results. Maybe this coming week? not sure.
In the meantime, you can see this newer technology is getting some attention. Obviously we are not the most concerned with sleep and obesity, but this could just be the start.
Mayo Clinic to Collaborate with Viome on AI-Driven Personalized Nutritional Strategies to Help Understand Sleep and Obesity
[Edited link out]
The initial focus of the collaboration is two-fold: to better understand the role of nutrition in disease and to explore the potential of Viome's AI-driven personalized diets in helping manage sleep disorders such assleep apnea and obesity.
The study will focus on measures of obesity (including body fat %), metabolism (HbA1c), and sleep. The teams will leverage Mayo Clinic's medical expertise and Viome's proprietary microbiome analysis platform. Together, they will enable a better understanding of how nutrition affects chronic diseases, and explore the effectiveness of personalized nutrition as a strategy to help in treatment, and possibly even prevention, of these diseases.
im also real curious about urogenital microbes atm. What they used to think was sterile, and some real similarities between a man and womansthat could also have proximal effects on the gi tract. Obviously this would involve prostate function as well, and drugs such as propecia.
Ive seen the term thrown around with some of this type of research, missing microbes, or deficiency. Strains of human origin. Obviously we are not made of yogurt.
On 7/8/2019 at 4:51 PM, defoeyido said:I feel like it has killed my brain cells honestly.
Since I came off accutane, my brain just feels so slower, softer, devoid of the ability to think critically, devoid of passion and enjoyment. I feel like it's made me simple minded in many ways
I don't understand how it can fuck with my brain so badly. I feel like I can never recover the old me. I've regressed as a person because of it. Fuck accutane
Just google its affects on the brain and you'll see that it promotes inflammation and does a marked decrease in brain metabolism.
So could this be true for males as well? They have recently detected some of these same species in the urine and semen of men.
"The health in womens urogenital tracts is largely dependent on the function of the vaginal microflora. Lactobacilli have been indicated as the dominate microorganism of the normal vaginal flora. They play an important role in protecting against pathogens invasion or overgrowth by production of hydrogen peroxide, bacteriocins, and lactic acid"
L. crispatus, L. gasseri, L. iners, L. jensenii, L. acidophilus and L. rhamnosus were the most frequently occurring species in vagina of healthy Iranian women. L. crispatus and L. jensenni were significantly higher in the normal than in the BV infected groups. Also the cytotoxic effect of L. crispatus on tumoral cervical cells was higher than other lactobacilli including commercial probiotics.
Bacterial Communities in Semen from Men of Infertile Couples: Metagenomic Sequencing Reveals Relationships of Seminal Microbiota to Semen Quality
"Noticeably,Lactobacillus crispatuswas not only associated with sperm elongation, but was also associated with Kruger's strict morphology (Table S9), which indicates that it may have a significant influence on semen morphology."
The presence ofLactobacillus crispatuswas found to have a positive association with quality of sperm concentration, leucocytes, IgA, and Kruger's strict morphology (Table S9). It was also found to be related to sperm elongation in CASA criteria (Table S12).Lactobacillus crispatusis a normal vaginal flora[54]but its significant to semen is unknown[22]. In healthy women,Lactobacillus crispatusorLactobacillus inersare the dominant vaginal bacterial communities[55]. Also, in co-culture conditions,Lactobacillus crispatusreduced the viability ofGardnerella vaginalisandPrevotella bivia[56], andLactobacillus crispatuswas found to restore normal microbial communities in the vaginal ecosystem by displacing vaginal pathogens[57]. Our analysis results indicate thatLactobacillus crispatushas the potential inmaintaining the semen ecosystem and semen quality, as the role in the vaginal ecosystem.
On 7/26/2019 at 11:58 PM, Giog said:Mainly the bolded, yes.
I agree. The crazy theories are an unfortunate side-effect of no medical researcher wanting to help people with a rare and novel medical condition caused by a pharmaceutical. We're stranded and looking desperately for a way out that doesn't involve suicide.
19 hours ago, ShivGeorge said:Just google its affects on the brain and you'll see that it promotes inflammation and does a marked decrease in brain metabolism.
Well, brain metabolism issues would point you towards looking at pituitary gland Id say ( hey I learnt that from this forum : )
HPA dysfunction springs to mind but could also be something else wrong. Heres where wed be best to consult a neurologist or endocrinologist...
Can someone remind me again of the guy who was doing an anti vitamin A diet and was seeing success? Not saying this is the solution but I just recently read a girls post a couple of days ago and everything from dry skin, dry eyes, joint pain and constipation are going away after 4 months on that diet. I dont necessarily believe its the anti vitamin A but its the foods that they are avoiding which is giving them success.
FYI...she has had side effects for 4 years.
7 hours ago, Chris16 said:Can someone remind me again of the guy who was doing an anti vitamin A diet and was seeing success? Not saying this is the solution but I just recently read a girls post a couple of days ago and everything from dry skin, dry eyes, joint pain and constipation are going away after 4 months on that diet. I dont necessarily believe its the anti vitamin A but its the foods that they are avoiding which is giving them success.
FYI...she has had side effects for 4 years.
Id be looking for more depth than just addressing dry skinto be convinced.
What about it fixing HPA dysfunction??
What about it addressing brain metabolism issues??
What about it addressing gut issues at a deeper level - breaking down biofilms and getting rid of viruses, bacteria and fungus??
Curious if its supposed to do all this and more??
On 7/28/2019 at 9:08 PM, Dubya_B said:I agree. The crazy theories are an unfortunate side-effect of no medical researcher wanting to help people with a rare and novel medical condition caused by a pharmaceutical. We're stranded and looking desperately for a way out that doesn't involve suicide.
I think all the theories over the years not just here but for PFS as well can be kept in check by self awareness. I feel for myself personally I have been pretty methodical and systematic with how I look at things, with testing and researchto go along with why im looking at a certain topic or possible treatment. Obviously ive been wrong about the later so far. Thats why you won't hear me recommend any supplements, only what Im doing at my own risk and why its being justified. The bad part is the risks become greater as I get older.My play by play approach maybe abuses the forum a little bit, but for me its my way of working through the problem and not a delusional coping mechanism.I also know not much else is going on here atm, so I continue to try to move the needle because I think I still can for now.
I personally don't need to hear that last line man, for you, me or anyone else. The struggle is real,I have over 1300 posts because it is sort of a battle for survival.
I have had a lot of tests, hundreds. I would be curious what a group of researchers would look at that we haven't already ourselves.
I would stillbet more money on a individual (one of the victims) figuring some thingsout before an outside researcher, we have alot more motivation. Not that we couldnt use their help, but they're going to need a sense of direction. Some leads.
Thats my opinion anyways.
Some very good points guitarman!!
It is also frustrating when someone comes on forum calling it out to be dumb, completely ignorant of the work people are putting in with eitherresearching things and posting findings,working with GPs and alternative practitioners and reporting back here on forum. What, that hasnt been helpful over the years??
If it werent for forum I might still just be taking Vit C which I was toldto do 20 years ago....Ive come a long way since then
Anyway, may the motivation continue and may keeping an open mind remain too.
In all seriousness- Im all for hearing more from the Anti A advocates, some positive stories on what its done for them,other than addressingdry skin. Just get your approach right though,avoidmaking ignorant comments about thethread and the info postedhere.
21 hours ago, Chris16 said:Can someone remind me again of the guy who was doing an anti vitamin A diet and was seeing success? Not saying this is the solution but I just recently read a girls post a couple of days ago and everything from dry skin, dry eyes, joint pain and constipation are going away after 4 months on that diet. I dont necessarily believe its the anti vitamin A but its the foods that they are avoiding which is giving them success.
FYI...she has had side effects for 4 years.
17 hours ago, PmcHeal said:Yeah any update fromthe people on the anti vitamin A diet
I am 9 months on zero A, still healing and seeing improvements in all issues, getting A out is a long slow process.
1 hour ago, under_tow said:
I am 9 months on zero A, still healing and seeing improvements in all issues, getting A out is a long slow process.
Ok Thanks, great to hear your seeing improvements, i might try it still not sure. Just on the topic of water fasting, i think i heard you mention it in previous posts, whats the best food to break the fast with.
18 hours ago, TrueJustice said:Some very good points guitarman!!
It is also frustrating when someone comes on forum calling it out to be dumb, completely ignorant of the work people are putting in with eitherresearching things and posting findings,working with GPs and alternative practitioners and reporting back here on forum. What, that hasnt been helpful over the years??
If it werent for forum I might still just be taking Vit C which I was toldto do 20 years ago....Ive come a long way since then
Anyway, may the motivation continue and may keeping an open mind remain too.
In all seriousness- Im all for hearing more from the Anti A advocates, some positive stories on what its done for them,other than addressingdry skin. Just get your approach right though,avoidmaking ignorant comments about thethread and the info postedhere.
She also had nausea, insomnia and bloating thatwent away and her mental issues have improved too.
I believe justdry was the other person that was seeing a lot of success with anti vitamin A.
What ignorant comment did I make TrueJustice?
20 hours ago, guitarman01 said:
I personally don't need to hear that last line man, for you, me or anyone else. The struggle is real,I have over 1300 posts because it is sort of a battle for survival.
I have had a lot of tests, hundreds. I would be curious what a group of researchers would look at that we haven't already ourselves.
I would stillbet more money on a individual (one of the victims) figuring some thingsout before an outside researcher, we have alot more motivation. Not that we couldnt use their help, but they're going to need a sense of direction. Some leads.
Thats my opinion anyways.
I'm about done with it. Almost 40y/o now and 20 years of my life trashed. Nothing but insult and injury. This is total foolishness. We have had over 35 years experience to figure this out for ourselves and no reliably reproducible treatment has been found. No common biomarker has been found.
We're not equipped to delve into studies of gene expression exclusive to PAS patients or to test obscure, but essential, neurosteroids, as the PFS research has. We can't walk into a physician's office and ask to have a spinal tap and a biopsy taken from whatever body part is malfunctioning. We're having thousands of standard medical and consumer-grade tests performed and nothing has thrown up a clear signal. Yeah, I hang around on propeciahelp and work with those guys because they are actually moving forward, albeit slowly.
The only tissue-specific study of a common PAS symptom has been that of chronic dry-eye, and they have found changes in gene expression and structural abnormalities of the meibomian gland that required an academic research setting and resulted in a proposed treatment that has yet to be widely discussed, if it has even been implemented in a controlled trial yet.
I would bet against "research" performed by patients ever bearing fruit. Hasn't happened, isn't going to happen. My opinion.
.
1 hour ago, Dubya_B said:I'm about done with it. Almost 40y/o now and 20 years of my life trashed. Nothing but insult and injury. This is total foolishness. We have had over 35 years experience to figure this out for ourselves and no reliably reproducible treatment has been found. No common biomarker has been found.
To this I would say research and test access is advancing rapidly at this point. In a few days I will go to a walk in clinic for a DEXA bone scan for a price cheaper then even visiting a doctor. The Viome testing that Im still waiting on results for, this consumer level technology was unheard of as of 5 years ago.
I wouldnt discredit this dysbiosis thought either. Weliterally just had a credible long term member on here post results from a credible test, possiblyconfirming this.As well as multiple studies both in Accutane and Fin that have shown this as a possibility as well. To me this is whats untapped still. Just think of the shear proximity of the gi and urogenital tract.This is the hottest topic in research atm. The Microbiome, what might be just as important as our own genes, if not more.
Regarding gene expression, a person can change that just by what they choose to eat from day to day.
I get it, the clock is ticking for me too. The biggest enemy is time, some things might not be reverted as we get older, and we have missed alot of good years. For me, I have enough different things going on that it might help to see the big picture. Recognize whatreal recovery might be without being clouded by mental judgement or bias.
I remember we had someone on here not long ago actually get a spinal tap for intense head pressure, they didnt find anything. Granted there could have been some other biomarkers they didnt look at.
As far as research, We have quicker access to studiesthen most Drs nowadays.
Yea I play guitar man. Im not a scholar, but I understand the main takeaways from the thousands of studies ive read.
A person just needs to be able to recognize the bias, even their own.
All the studies in the world dont mean shit though without being able to apply this in the real world. Which we as a group have fell short on.
Anyways, this is way too long, but hey did you know this one?
These experimental results support the hypothesis that finasteride may have unrecognized off-target antibiotic effects.
or this one?
Probiotic EyeDrops Treatment in Patients Affected by Vernal Keratoconjunctivitis
https://iovs.arvojournals.org/article.aspx?articleid=2394783
or this, I dont necessarily believe in these strains, but i might the concept.
Aging Eye Microbiota in Dry Eye Syndrome in Patients Treated withEnterococcus faeciumandSaccharomyces boulardii.
The administration of probiotics strains was effective in reducing DES. In light of these results, we have identified our probiotic (Saccharomyces boulardii MUCL 53837 and Enterococcus faecium LMG S-28935) activity integration with the action of tear substitutes, along with standardization of clinical parameters of the tear film and microbiological activity in restoring of the microbiota ocular surface subject with DES.
whoops that fin link was the wrong one. Here.
The human gut chemical landscape predicts microbe-mediated biotransformation of foods and drugs
Published online 2019 Jun 11
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6559788/
finasteride may have unrecognized off-target antibiotic effects.
On 7/30/2019 at 1:33 PM, PmcHeal said:Ok Thanks, great to hear your seeing improvements, i might try it still not sure. Just on the topic of water fasting, i think i heard you mention it in previous posts, whats the best food to break the fast with.
Water fasting long or short seems to be helpful due to rapid vitamin A excretion, this was my experience from them.
I think breaking fasts with low cal, low protein, low fat is probably best, lots of opinions on that topic!
On 4/23/2019 at 10:38 AM, under_tow said:I have all skin related issues; yellow discoloration, redness, excessive dryness/flaking, excessive sebum oil, plugged pores, dandruff, hair shedding, etc..
I did not get mental and sexual sides, like many have reported, I suspect that they were very minor for me. If I got those with the skin issues, I probably would not be here anymore...
To keep it all in perspective for others. Honestly if I only had the skin issues I would have never even created an account or worriedtoo much about it, but would have got on with my life. Good for you man.
The hair loss did bother me though. I wasnt expecting it to be permanent and it didnt even start happening until after treatment.
Yep, Im waiting to hear a convincing story from the Anti A advocates, something a little deeper than it fixing dry skin and dandruff issues.
I want a story on it fixing more than even just insomnia,a story on it fixing major depression or sexual sides or repairing brain issues would be great.
If this forum is dumb and the other superior with heaps of solutions than lets hear it....bring it on!!
My hairloss was after treatment as well.
Im still on the fence, retinoic acid too high or too low now?
I read Ra drops with age, one of my biggest issues is feeling old.
Or maybe it could be like insulin where you can become insulin resistant??? Retinoic acid resistance?? Thoughts?
On 8/2/2019 at 4:14 AM, Calcified said:Retinoic acid resistance?? Thoughts?
ive dabbled at two different time points with supplementing vitamin a.
At times it seemed i had better skin, better hair, better vision, better stomach, no facial flushing,better thoughts.
Followed by, I love this term (kidding) a crash.
dry skin, hair loss, worse digestion, disconnected thoughts, depression, anger
The worst was the seemingly permanent eye floaters it brought on.
id leave it alone. when you talk about resistance, I think bacterial resistance.
like this right here,
Gut microbiotacomposition was affected by finasteride treatment and its withdrawal.
https://www.ncbi.nlm.nih.gov/pubmed/30265917
now go back to @SCOTT242test result, supplementing any nutrient in excess could be a dumpster fire when he had multiple flags of bacterial overgrowth. including vitamin a.
id really like to replicate that test in a few of us, but its just a little too expensive right now.
I hope to get the viome results back soon and see how it compares.
You and me both man. It says they assessed my sample on jul 23rd so I dont know what the hold up is. I would expect this coming week.
I probably shouldnt have told them I took Accutane and thats why I was looking into this.
If this starts to amount to anything, thats a whole lot of worms for them for everyone with mystery type aliments.
3 hours ago, Calcified said:@IndigoRushReturns- good video.
@guitarman01- will be interesting to see your viome results.