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Repairing the long-term damage from Accutane

 
MemberMember
5
(@francisco-blanquez)

Posted : 06/08/2019 7:43 am

On 5/30/2019 at 11:08 AM, TrueJustice said:

Just an update for anyone interested in the kinesiologist approach

currently on a select ratio of Iron and Vit C, another bacteria has been discovered that although I dont have is associated with MS and Alzheimers

My specialist said to look up Fenton Reaction its to do with oxidative stress amongst other things. I think it has Copper implications too, finally might have some answers on the Copper overload detected 400 years ago.....

 

For me its 3 drops of Iron with a Pharmaceutical grade Vit C - 2 times per day.

After a week - hair noticeably softer and facial skin softer too.

We work on clearing fungus next after this bacteria clearing

What about activated carbon? I have been having this for about 3 month and I fell much better. I have no arthritis pain already. Having no meds or suplements. No gluten and no sweet flavors diet (sometimes is dificult....)

As an update, my low level in B12 and folic acid was confirmed, as in every one who had roaccutane. B12 around 300 (250 to 900), folic acid around 5 (4 to 40)

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MemberMember
5
(@francisco-blanquez)

Posted : 06/08/2019 8:01 am

On 5/16/2019 at 12:48 PM, TrueJustice said:

After stopping Accutane 17 years ago, one thing I have noticed is I have never had the cold or flu, the worst case will be, I will have the sniffles for a few hours (symptoms before a cold or flu) and then it dissapears.

I have not had e flu shot the last 17 years and I have stayed next to many people with the flu and cold plus kiss my girfriend many times while she has a cold, yet never got it. Has anyone ever experienced this ?

It happend to me as well but in my case it started around 20years after roaccutane. My last flu was the A influence, i was sick for one month but since then... I get a flu today... and tomorrow Im fine, after sweating it whith fever at night

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MemberMember
397
(@calcified)

Posted : 06/08/2019 8:27 am

22 minutes ago, Francisco..Blanquez said:

What about activated carbon? I have been having this for about 3 month and I fell much better. I have no arthritis pain already. Having no meds or suplements. No gluten and no sweet flavors diet (sometimes is dificult....)

As an update, my low level in B12 and folic acid was confirmed, as in every one who had roaccutane. B12 around 300 (250 to 900), folic acid around 5 (4 to 40)

Thanks for update. Low B12 so common.

 

Prevent h.pylori and raise B12. Lactobacillus reuteri?

 

Anyone tried it? Success? Opinions?

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MemberMember
1804
(@truejustice)

Posted : 06/08/2019 11:04 pm

My thoughts are, get a hold of both the bad bacteria and fungus first.

After that hit the good bacteria and replenish the body.

Thx for raising though as I need to ask my kinesiologist about a goodprobiotic

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MemberMember
1803
(@guitarman01)

Posted : 06/08/2019 11:25 pm

14 hours ago, Calcified said:

Anyone tried it?

Hey what's going on with your calcification? Where is this located at? What test diagnosed this?

Thanks

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MemberMember
397
(@calcified)

Posted : 06/09/2019 3:55 am

Truejustice -

Yes, eliminate bad and replenish with good.

 

Guitarman01 -

Tendon insertion calcification. Xray.

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MemberMember
6
(@owen2000)

Posted : 06/09/2019 4:39 pm

Has anybody who been on this drug that experienced hair loss, thats on head, eyebrows and eyelashes. Did any of youse lose your hair all over your face all together? Or did it eventually grow back.

So far my experience from this, even 3 months post accutane is its given me a receding hairline which still has not stopped receding, Im losing hair on my eyes brows and eyelashes too.

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MemberMember
397
(@calcified)

Posted : 06/09/2019 10:31 pm

I'm sure most people still have eyebrows, eyelashes and beard hair, maybe talk to your dermatologist, how high was your dosage?

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MemberMember
6
(@owen2000)

Posted : 06/11/2019 6:21 am

On 6/10/2019 at 4:31 AM, Calcified said:

I'm sure most people still have eyebrows, eyelashes and beard hair, maybe talk to your dermatologist, how high was your dosage?

It was 30mg. I only took it for three weeks, but my eyebrows are slowly thinning and Im loosing hair on eyelashes too.

Theres nothing my dermatologist is doing, shes shrugging it off as an coincidence. I have submitted a yellow card form

https://yellowcard.mhra.gov.uk/ its where you report side affects on medications. (UK) maybe everyone should do it. This drug should be removed from the table.

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Dubya_B, Dubya_B and Dubya_B reacted
MemberMember
1803
(@guitarman01)

Posted : 06/11/2019 5:46 pm

On 6/9/2019 at 10:31 PM, Calcified said:

I'm sure most people still have eyebrows, eyelashes and beard hair, maybe talk to your dermatologist, how high was your dosage?

mine thinned and the thickness never came back.

 

11 hours ago, Owen2000 said:

Theres nothing my dermatologist is doing, shes shrugging it off as an coincidence.

Same with mine. he told me to go see the dr that invented rogaine and said its not the accutane.

someone on here not too long ago was all concerned about copper.

Powerful research tool uncovers link between gut microbiota and copper

https://www.ucalgary.ca/utoday/issue/2019-03-18/powerful-research-tool-uncovers-link-between-gut-microbiota-and-copper

Scientists at the University of Calgary have found that the gut microbiota can change how animals metabolize copper, a trace nutrient vital to everything from normal development to cell function, as well as many metabolic processes.

Strong evidence was found that interactions between microbes and the host regulate the entry of copper into the cells of the large intestine,

Although copper is an important micronutrient in the body, it is also potentially toxic to cells, so the body tightly regulates it,

There are many more bacterial cells inhabiting every human body than there are human cells, says Vicentini. There is a lot of research focusing on microbiota now, and how the bugs in our gut are regulating our physiology, involving every aspect of our body, he says.

i think we finally broke the forum

 

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MemberMember
1804
(@truejustice)

Posted : 06/12/2019 7:08 am

Thx Guitarman for that copper study - great info that Ive emailed to my kinesiologist today.

Many of us have copper issues, Im curious where my levels are at after all the work Ive done on HPA axis - I may have to get another hair mineral analysis test to be sureas the copper blood tests were never conclusive done a few years ago!!

I do know that theres a big relationship between copper/zinc/Iron - Ive been hitting the Zinc & Iron pretty hard over last 3-4 months in clearing bad bacteria and fungus etcso curious if its stabilised the copper issue or not.

After clearing bacteria and fungus I believe we look at viruses next - who knows what theyll find.......

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MemberMember
1803
(@guitarman01)

Posted : 06/12/2019 5:56 pm

I wouldnt think this is too far off from what some of us might be dealing with, and no Im not saying a persons brain fog is early onset alzheimers.

https://www.forbes.com/sites/robinseatonjefferson/2018/07/25/evidence-mounts-that-germs-may-cause-alzheimers/#ffa20294fc96

In the end it will be microbesbacteria, viruses and fungusfound to be at the root of all disease and aging, and specifically Alzheimers, contends geneticistDr. Rudolph Rudy Emile Tanzi. [Edited link out]

The two biggest threats to healthy aging have had to do with dealing with infection, said Tanzi, who specializes in Alzheimers and the brain at Massachusetts General Hospital (MGH) and Harvard Medical School. Think about it. When we increased the lifespan from 35 to 50, it was by covering the sewers. When we increased the lifespan from 50 to 75, it was with the use of antibiotics. Now we are looking for viruses in all of the major life-threatening diseases of our timeAlzheimers, cancer, Parkinsonsand guess what? Infection is now cropping up in all of them.

Its one of the reasons scientists in Tanzis lab at MGH are mapping the microbiome of the brainthe population of microorganisms, some helpful and some pathological, that exists inside the brain

Named in 2015 as one of TIME100 Most Influential People in the World, Tanzi has published nearly 500 research papers and has received the highest awards in his field, including the Metropolitan Life Foundation Award and Potamkin Prize and the 2015 Smithsonian American Ingenuity Award.

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MemberMember
1803
(@guitarman01)

Posted : 06/13/2019 8:39 pm

Really important possibility right here.

2/3rds of what you take in...

https://www.google.com/amp/s/www.forbes.com/sites/daviddisalvo/2019/06/10/study-our-gut-bacteria-may-be-dismantling-the-pills-we-take-what-you-should-know/amp/

Jun 10, 2019,12:12 am

Study: Our Gut Bacteria May Be Dismantling The Pills We Take - What You Should Know

Researchers tested 271 oral drugs, including the antidepressant Fluoxetine (brand name Prozac), the blood-pressure med Diltiazem hydrochloride(brand name Cardizem), and a cancer drug called Imatinib (brand nameGleevec). They exposed the drugs to 76 dominant bacterial strains from the microbiome, including the common strainsClostridiaandBacteroides, in lab culture tests.

The results showed that the bacteria metabolized two-thirds of the drugs. Small groups of bacteria targeted some of the drugs, while bacterial armies devoured others.

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MemberMember
397
(@calcified)

Posted : 06/14/2019 2:30 am

5 hours ago, guitarman01 said:

Really important possibility right here.

2/3rds of what you take in...

https://www.google.com/amp/s/www.forbes.com/sites/daviddisalvo/2019/06/10/study-our-gut-bacteria-may-be-dismantling-the-pills-we-take-what-you-should-know/amp/

Jun 10, 2019,12:12 am

Study: Our Gut Bacteria May Be Dismantling The Pills We Take - What You Should Know

Researchers tested 271 oral drugs, including the antidepressant Fluoxetine (brand name Prozac), the blood-pressure med Diltiazem hydrochloride(brand name Cardizem), and a cancer drug called Imatinib (brand nameGleevec). They exposed the drugs to 76 dominant bacterial strains from the microbiome, including the common strainsClostridiaandBacteroides, in lab culture tests.

The results showed that the bacteria metabolized two-thirds of the drugs. Small groups of bacteria targeted some of the drugs, while bacterial armies devoured others.

I saw a documentary a while back and the difference between a overweight twin and a thin twin was bacteria. Like the bacteria was dismantling the food.

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MemberMember
10
(@fighback)

Posted : 06/16/2019 5:57 am

If Albert can be this honest the least everyone else they can do is report your side effects.

20 Isotretinoin deaths reported to MHRA just in April alone.

https://yellowcard.mhra.gov.uk/

 

http://www.adrreports.eu/en/

 

[Edited link out]
Helen Wright
3 June at 15:02 Ripon

Please help me by sharing this post about the dangers of taking ISOTRETINOIN (or ROACCUTANE) for acne.
As most of you will know, our beautiful daughter, Annabel, took her own life a month ago. She was 15 years old. We have struggled to make any sense of this as she was a happy go lucky teenager with no signs of depression. However, she was taking the anti-acne drug Isotretinoin where one of the side effects we were told to look out for was low mood and depression which canin very rare cases can lead to suicide. Annabel did not have depression nor did she have low mood. What they didnt tell us to look out for are suicidal impulses that can come out of nowhere. Since this tragedy happened we have read of many cases of similar tragedies following use of Roaccutane/Isotretinoin. If we had known that these suicidal impulses can come out of nowhere we would never have agreed to her taking these tablets, which we have since discovered were developed initially as an anti-cancer chemotherapy drug. We will never get our Annabel back but if we can ask you to share our story maybe it can help to save a life. Our hearts are broken. We dont want anyone else to go through the tragic waste of a beautiful young life. PLEASE SHARE

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MemberMember
1803
(@guitarman01)

Posted : 06/16/2019 3:50 pm

They updated my file. Im able to view this now. I thought some might be curious, you did have another person that took accutane test positive for this same test.

Mayo.png.394d0310b039f6874ac43d26db479fcf.png

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Dubya_B, Dubya_B and Dubya_B reacted
MemberMember
359
(@dubya_b)

Posted : 06/17/2019 7:22 am

Results of the propeciahelp post-drug symptoms survey are now available for viewing here.

 

The report is regenerated daily as surveys are completed.  There will be more reports coming in the future to describe these conditions in greater detail. Stay tuned.

 

Not a surprise that there appears to be a strong overlap in the main symptoms and their level of severity for PAS, PFS, and PSSD, indicative of a single condition. They turned out to be even more similar than expected, which may be due to a standardized survey removing the bias toward discussing certain side effects within each community of patients. For instance, PSSD was considered to only include sexual symptoms until recently.

 

Participation from the PAS community has been very poor considering how many people have taken the drug.

 

We need at least 50 PAS respondents to yield results with sufficient statistical power to be worthwhile.

 

Can anyone who regularly reads this thread and has yet to complete the symptoms survey please explain why they have chosen to not participate?

 

Thanks.

 

A preview of the first page of results:

 

image.png.e0f71ab7671a0be7690f458fe42a0947.png

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MemberMember
397
(@calcified)

Posted : 06/18/2019 7:31 am

On 6/17/2019 at 6:20 AM, guitarman01 said:

They updated my file. Im able to view this now. I thought some might be curious, you did have another person that took accutane test positive for this same test.

Mayo.png.394d0310b039f6874ac43d26db479fcf.png

 

Have you noticed any improvements with bifido probiotics?

 

I have been taking a probiotic with only lactobacillus types and does seem to help.

I'm not sure if it's the bacteria, maybe immune suppression ?

Anyone tried lactobacillus only?

I had a few nights of terrible acid reflux, it was brutal. 

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MemberMember
1803
(@guitarman01)

Posted : 06/19/2019 6:53 pm

On 6/17/2019 at 7:22 AM, Dubya_B said:

Can anyone who regularly reads this thread and has yet to complete the symptoms survey please explain why they have chosen to not participate?

 

Thanks.

I will absolutely have this done by this weekend. Even though I post on here frequently, Im really only spending a few minutes. I know the survey said to set aside an hour. While I think alot of us know about the similarities, it's good to have actual numbers and documentation to back this up. Looking at the activity of this thread, I might look into the pfs forum more so when I have the chance as well.

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MemberMember
1803
(@guitarman01)

Posted : 06/19/2019 7:09 pm

On 6/18/2019 at 7:31 AM, Calcified said:

 

Have you noticed any improvements with bifido probiotics?

 

I have been taking a probiotic with only lactobacillus types and does seem to help.

I'm not sure if it's the bacteria, maybe immune suppression ?

Anyone tried lactobacillus only?

I had a few nights of terrible acid reflux, it was brutal.

here's the thing. To look at this properly these strains need to be looked at on a individual basis. So you got some acid reflux. Was this the body's defense mechanism to what might have been considered a foreign invader? Could good bacteria play a positive role in acid secretion? could over abundance lead to atrophic gastritis that lowers acid production? Ive seen all possibilities unfortunately.

Are we suppose to keep all bacteria at bay, even good bacteria?

I can say this much. I have tried numerous antibiotics over the years.

amoxicillin, amoxicillinclavulanate, zpac,Levofloxacin,ciprofloxacin?

I never felt better on any of them. id be curious to try a strictlyantifungal drug ( i have candidaantibodies) to rule that out as well

Ive seen it mentioned in a study, despite nutrient repletion,it did notcorrect malnutrition.

B. longum was the first to go.

On bifido, I can site numerous examples why this all needs to be looked at on a individual basis.

Serotonin Transporter Deficiency is Associated with Dysbiosis and Changes in Metabolic Function of the Mouse Intestinal Microbiome

https://www.nature.com/articles/s41598-019-38489-8

Bifidobacterium longumCCM 7952 Promotes Epithelial Barrier Function and Prevents Acute DSS-Induced Colitis in Strictly Strain-Specific Manner

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0134050

Effects of fourBifidobacteriaon obesity in high-fat diet induced rats

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2904885/

CONCLUSION: The response of energy metabolism to administration ofBifidobacteriais strain dependent. Different strains ofBifidobacteriamight drive different directions of fat distribution.

 

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MemberMember
397
(@calcified)

Posted : 06/22/2019 12:25 pm

Thanks guitarman01 , I think your onto something.

I'll let you know how my probiotic journey goes.

I choose lactobacillus as my folliculitis drives me nuts and it is helping.

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MemberMember
1803
(@guitarman01)

Posted : 06/22/2019 3:19 pm

On 6/17/2019 at 7:22 AM, Dubya_B said:

We need at least 50 PAS respondents to yield results with sufficient statistical power to be worthwhile.

ok completed the survey. Main takeaways. Yeah alot in common, way too much to not be able to figure this out.

most of my symptoms/health have been a slow burn. There was only a few I could really recall shortly after stopping the drug. This includes diffuse hair loss and headaches, along with facial flushing, some type of inflammation.

The slow burn includes running the gamut of alot that was on that survey, from lack of ability to tan, to eye floaters, and gum inflammation/recession.

 

3 hours ago, Calcified said:

I'll let you know how my probiotic journey goes.

I choose lactobacillus as my folliculitis drives me nuts and it is helping.

Check it out. Same thought process. strains of human origin. notice they only recommend 100 to 200 MILLION for their strains that colonize the upper gi tract (small intestine, stomach), oral cavity.

https://www.biogaia.com/

 

Speaking of in common. none of these drugs work by themselves. I saw a couple of things here worth mentioning.

Induction of ceruloplasmin synthesis by retinoic acid in rats: influence of dietary copper and vitamin A status.

Ceruloplasmin, a copper-containing acute phase plasma protein, has been shown to be regulated by 13-cis retinoic acid in rats. Ceruloplasmin activity was significantly increased within 24 h and remained elevated for at least 72 h after a single injection of 13-cis retinoic acid. With daily injections of retinoic acid, the ceruloplasmin activity continued to increase for at least 4 d. After 4 d, the activity was four times control levels. In copper-deficient rats, the ceruloplasmin activity did not increase in response to retinoic acid unless copper was also given to these rats 8 h after retinoic acid.

Retinoic acid-induced HL-60 cell differentiation is augmented by copper supplementation.

The burst activity of retinoic acid-induced cells was increased by copper supplementation, Supplementation with copper resulted in more cell-associated copper in both noninduced and induced cells; however, the induced cells accumulated three times more copper than the noninduced cells.

Copper Deficiency a New Reason of Androgenetic Alopecia?

https://cdn.intechopen.com/pdfs/46661.pdf

I dont want to talk about any toxicity or deficiency. A better way to term it would be regulation. just like so many other things going on, and what could get repurposed with some of these drugs.

possibly.

 

 

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MemberMember
1804
(@truejustice)

Posted : 06/22/2019 9:24 pm

As I continue to clear things with my kinesiologist namely:

Bacteria,Fungus,Viruses

I quizzed him on Copper last week, suggested Id like to look at another hair mineral test - now about 8-9 years since the last which showed high copper.

He said its hard to comprehensively test these things as it doesnt truly indicate where the copper overload might be, like which organ or even at a cellular level what exactly is going on - where is it occurring exactly??

He said all you can do is test Outputs how does your body react to copper now, is it stressed by it etc etc.

Anyways - the body goes through huge highs & lows clearing the bacteria and viruses - theres a big one coming up where apparently we look at Lyme disease bacteria Im told. Im not sure how one would have these bacteria without having Lyme disease itself - Ill have to quiz himon that. I think theres a couple of bacteria associated which you can look up -some people will have all bacteria in them,some none Im told.

In way of probiotics- hes all for replenishing by using thembut wants to get rid of thenasty stuff first - instinctively I feel the same way too!!

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MemberMember
1803
(@guitarman01)

Posted : 06/23/2019 2:59 pm

I might have found a good blood test. Im going to get this tomorrow. It could be a marker of chronic inflammation or a malfunctioning immune system.

@Dubya_BDo you know anyone that has had this test?

chronic inflammation modulated by cytokines such as TNF- is the common denominator of all age-related disease.

"a direct impact on circulating inflammatory cytokines in the serum, perhaps inducing an inflammatory response by altering the microbial composition"

Serum TNF- could be the chief responder

http://ltd.aruplab.com/Tests/Pub/0051539

Tumor Necrosis Factor-alpha

Aliases

  • Cachectin
  • cytokine
  • cytokines
  • TNF Alpha
  • TNF-alpha
  • TNFa
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MemberMember
1
(@geralt)

Posted : 06/23/2019 5:15 pm

Hey guys, any advice on how to deal with the guilt and suicidal depression.

I find it hard to try to focus on repairing my body since getting hurt by this drug... i drink alcohol everyday, abuse xanax, and smoke cigarettes, and end up hating myself more.

I feel im very close to ending my life, and i just can't come to acceptance and make the best with what i have left so i ruin myself more..

Any advice would be much appreciated.

 

 

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