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16 minutes ago, yetanotheraccutanevictim said:

@guitarman01 Concerning the possible side effects from using HPBCD, you have to decide for yourself if your accutane side effects are worth living with. I personally am going to try the HP-cyclodextrin. I'll probably do a lower dose just for extra precaution. Maybe 200mg per kg (slow drip).

And I think the above statement you posted means that IV HPBCD caused more retinoid release from the liver into the serum than could be handled by the CD (by "handled" I mean grabbed and carried out of the body). That's why the kid being treated with cyclodextrin had symptoms of vitamin A overdose for a while. Some of the stored retinoids were released into circulation and not all of them could be gathered up quickly enough. Still, this is a great method for getting retinoids out of the liver it seems. Maybe we could do even smaller dosages just spread out over longer periods of time.

Edit: Or it means that the CD could not make it water-soluble at the rate at which is was coming out. So some remained fat-soluble. (and perhaps got carried into fat-cells or lymph). Not entirely sure though


Bloody hell guys - be careful here, I wouldn't go ingesting this stuff just in the hope that it will cure you of the bad side effects. Taking this approach with supplements is one thing but do do it with potentially another powerful drug might be insane till we know more.

Arent we still unsure as to what exactly has happened to us?? Half of us still think it's stored in the body ( mainly the liver ) whilst the rest believe it's long past through and has just left its damage on the way through!!?


Until I know for sure that my liver is full of unwanted retinoids I wouldn't go taking more powerful drugs that might actually cause damage.

Maybe some of these intelligent lab scientists can shed some light on the matter?

Failing that - why don't we all just go knocking at the front door of Roche headquarters asking if they now know the exact mechanism of how Roccutane works....do they have anybody working on it??

Where is their level of responsibility during all this I ask?????

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39 minutes ago, guitarman01 said:

 

@TrueJustice

Here's a PM I just sent out that others may want to read:
Eating retinol is a great way to displace the accutane and allow for its removal. However, it can cause symptoms to reappear as it is shuttled into circulation.

provitamin A seems to also help get rid of accutane toxicity:
" However, an excessive intake of beta-carotene appears to have carcinogen effects, possibly through its promotion of the eccentric (or asymmetric) pathway of beta-carotene cleavage, which produces breakdown products that might lead to the destruction of retinoic acid through the activation of the P450 enzyme, which in turn could decrease retinoid signalling leading to enhanced cell proliferation.  Therefore dosage seems to be an important factor in beta-carotene action."

I took 36,000,000 IU of synthetic vit A from accutane: That would be MANY years of toxicity if I don't do liver flushing and things..
" Importantly, Vitamin A is a fat soluble vitamin that can be stored in the body, primarily in the liver as retinyl ester. This is highly beneficial in cases of Vitamin A deficiency: a supplement containing 200,000 IU can meet the patient’s daily requirement for four to six months"

 

More evidence that vit A can stay in the body for a LONG time
"Recently Stoltzfus et al. (1992,1993) reported that a single 300,000 IU vitamin A (equivalent of 90 mg retinol) supplement administered to mothers within a few weeks of birth was effective in raising milk vitamin A levels and in maintaining an improved level of vitamin A status in the infant for at least six months."

And to prove my argument that retinol helps get rid of accutane:
"Liver retinyl ester concentration can vary widely and still be considered to be in the normal range. In the rat, concentrations exceeding 5−10 µg retinol/g liver support a normal output of retinol on its transport protein, retinol−binding protein (RBP) (Goodman, 1984; Harrison et al., 1987). If liver retinol falls below this level, RBP synthesis continues but secretion is impaired unless additional retinol is provided (Smith et al., 1973). Thus it appears that these last retinol “reserves” are not readily mobilized for secretion into plasma. The retinol molecule is very well conserved: it is eliminated from the body only after several passages between liver and peripheral tissues (Green et al., 1985)."

 

Post by Tryingtohelp2014:
 

"Yeah, i can only prove this anecdotally...like ive said a few times before.... i know what i felt after months of extreme exercise and calorie restriction.   i felt like i was taking 4x the amount of accutane as opposed to when i was on the drug itself.... bleeding cracked lips/nose..peeling of the hands and soles of feet...extreme joint pain, hair shedding.  i just felt toxic.  now when i did this .... it was already years after having stopped accutane!  As soon as i stopped exercising, and began eating fat, putting on weight...the side effects went away by 75%.

so im kind of 100% certain theres something still there.  dont care what ANYONE says. biology 101 textbooks dont apply here... a lot of this stuff like PXR(even possible individual PXR polymorphisms)  were only just discovered in the past few years!"

-
EDIT: Here's an interesting hypothesis about another drug that I just found. Pretty interesting about its relationship to retinoids: https://www.ncbi.nlm.nih.gov/pubmed/23852388

https://www.ncbi.nlm.nih.gov/pubmed/20158952

In this nonhuman primate model of hypervitaminosis A, hepatic retinyl esters continued to accumulate with high liver stores.

Liver flushing anyone?

"We present an unusual case of intrahepatic cholestasis caused by vitamin A intoxication."
https://www.ncbi.nlm.nih.gov/pubmed/19944093

Potential way of determining if we are toxic with accutane?
https://www.ncbi.nlm.nih.gov/pubmed/19710158

Stable isotope techniques have important public health potential for the classification of VA status, including hypervitaminosis, because no other technique besides invasive liver biopsies, correctly identifies excessive liver VA stores.
Edited by yetanotheraccutanevictim

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taking more vitamin a does not help. no one should do this. I tried a few years ago and still have additional side effects from doing this. 
@truejustice this drug appears to be very safe orally at the right dosage,based on studies.

31 minutes ago, yetanotheraccutanevictim said:
Potential way of determining if we are toxic with accutane?
https://www.ncbi.nlm.nih.gov/pubmed/19710158

Stable isotope techniques have important public health potential for the classification of VA status, including hypervitaminosis, because no other technique besides invasive liver biopsies, correctly identifies excessive liver VA stores.
unfortunately this wont be a test we will be able to get done for a long time, if ever. probably just at universities for research.

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2 minutes ago, guitarman01 said:

taking more vitamin a does not help. no one should do this. I tried a few years ago and still have additional side effects from doing this. 
@truejustice this drug appears to be very safe orally at the right dosage,based on studies.

You took more synthetic vitamin A? or from food like liver?

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9 minutes ago, yetanotheraccutanevictim said:
12 minutes ago, guitarman01 said:

taking more vitamin a does not help. no one should do this. I tried a few years ago and still have additional side effects from doing this. 
@truejustice this drug appears to be very safe orally at the right dosage,based on studies.

You took more synthetic vitamin A? or from food like liver?
synthetic palaimaite. still have calluses right below my fingers and eye floaters from it and many additional wrinkles on my hands. and that was years ago. I wouldnt trust fish liver oil either based on what palaimaite did to me . I would sure as hell take this hpbcd before id take more vitamin a

https://www.lookfordiagnosis.com/cases.php?term=Hypervitaminosis+A&filter=hypervitaminosis&values=24.406706&lang=1&from=10
actual case reports of vitamin a toxicity 

and based on studies we read. its all the same. same type of toxicity. accutane was just not suppose to stay in the system. that was the whole point of it.

Edited by guitarman01

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Anyway to measure LIVER   vit A  or retinoid metabolites  ?

I had my serum measured and of course, came back normal.

 

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1 minute ago, Mike San said:

Anyway to measure LIVER   vit A  or retinoid metabolites  ?

I had my serum measured and of course, came back normal.

 

Potential way of determining if we are toxic with accutane?
https://www.ncbi.nlm.nih.gov/pubmed/19710158

Stable isotope techniques have important public health potential for the classification of VA status, including hypervitaminosis, because no other technique besides invasive liver biopsies, correctly identifies excessive liver VA stores.

And the blood will never be an accurate representation of total body retinoid levels. It's tightly regulated.

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even if they did a liver biopsy does accutane look like vitamin a or would they specifically have to look for accutane?
you could almost lie your way into getting a liver biopsy. but then be like btw look for accutane while your in there as well. lol

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1 minute ago, guitarman01 said:

even if they did a liver biopsy does accutane look like vitamin a or would they specifically have to look for accutane?
you could almost lie your way into getting a liver biopsy. but then be like btw look for accutane while your in there as well. lol

It's 13-cis-retinoic acid. But once ingested, most gets converted to all-trans-retinoic acid

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those case studies i linked the guy had vitamin a toxicity but normal liver enzymes. I wonder if a liver ultrasound would show anything. Like non alcoholic fatty liver. just no doctor will do a liver biopsy with no clinical symptoms. It is just crazy they cant find one damn thing out of all these blood test. which im still waiting for my results btw. prob all normal im sure
 We should make it a point between all of us to have every single vitamin and mineral test you can have.
vitamin a check
folic acid good
b12 good
magnesium good
calcium good 
vitamin d good
 

Edited by guitarman01

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We have clinical symptoms,  just nothing specifically that would warrant them to order a biopsy :(

Maybe we have to be more trusting of the MDs then... if our liver enzymes are in fact normal,   perhaps there wouldnt be a large store of vit A metabolites there ?

Just would be interesting to see at least some biopsy results post accutane !

 

Edited by Mike San

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12 minutes ago, Mike San said:

We have clinical symptoms,  just nothing related to liver disease true.  

The thing is, you can always find an open minded GP,  but you cant find open minded specialists and those are the guys who do this.

Maybe we have to be more trusting of the MDs then... if our liver enzymes are in fact normal,   perhaps there wouldnt be a large store of vit A metabolites there?

 

https://www.lookfordiagnosis.com/cases.php?term=Hypervitaminosis+A&filter=hypervitaminosis&values=24.406706&lang=1&from=10
liver enzymes normal but still toxic levels of vitamin a in liver. first study


any clues here? that may effect us in a much more minor fashion http://www.dailymail.co.uk/health/article-3330317/Teenager-life-wrecked-controversial-acne-drug-Rare-effect-nearly-killed-15-year-old-lost-hair-diabetic.html
they said the hair loss was from stress. F THAT!

Edited by guitarman01

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Excellent thank you... printing that off.    I wonder what prompted them to do a biopsy given normal liver enzymes AND asymptomatic.

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4 minutes ago, Mike San said:

Excellent thank you... printing that off.    I wonder what prompted them to do a biopsy given normal liver enzymes AND asymptomatic.

idk maybe told dr he took a shit load of vitamin a and had all these symptoms  Edited by guitarman01

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Ill ask my doc next time I see him about getting one done.... do you know the equivaleny of 80mg accutane to  vitamin A IU ?

Telling him in "millions of IU"   (something he can relate)     vs   'oh I took 80 mg accutane every day',   will be more alarming to him.    

Edited by Mike San

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11 minutes ago, Mike San said:

Ill ask my doc next time I see him about getting one done.... do you know the equivaleny of 80mg accutane to  vitamin A IU ?

Telling him in "millions of IU"   (something he can relate)     vs   'oh I took 80 mg accutane every day',   will be more alarming to him.    

 3  mg =  10,000 IU Vitamin A
40 mg = 133,333 IU Vitamin A (*my daily dose each day for month 1)
80 mg = 266,666 IU Vitamin A (*my daily dose each day for months 2 through 5)
 
month 1 = 1,200 mg = 4,000,000 IU
month 2 = 2,400 mg = 8,000,000 IU
month 3 = 2,400 mg = 8,000,000 IU
month 4 = 2,400 mg = 8,000,000 IU
month 5 = 2,400 mg = 8,000,000 IU
 
Total Dosage (5 months):
10,800 mg = 36,000,000 IU Vitamin A
 

Clinically it requires about 1,000,000 IU retinol per day to produce the toxic effects of 1-2 mg/kg isotretinoin
250,000 IU daily for 6-15 months can result in chronic toxicity
1,500,000 IU in a bolus can result in acute toxicity
 
Chronic Vitamin A toxicity occurs at:
4,000 IU/kg per day for 6 months
(*254,545.455 IU per day for 6 months for me)
--
If one of you guys can actually get a liver biopsy done, that might discover something amazing.
However, the liver is LARGE. They may miss the places where it has accumulated. I doubt it's perfectly equal in all parts of the liver. Vit A stores in hepatic stellate cells
Edited by yetanotheraccutanevictim

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Thanks!!

Looks like I cant really compare the 2 after all   :(

http://www.acne.org/messageboard/topic/276123-how-many-iu-s-of-vitamin-a-are-needed-to-have-an-accutane-dose/

"  when you take vitamin A it gets converted to tretinoin (acctuane),   BUT it also gets converted to a shitload of other chemicals that are even more toxic than accutane and have no effect on your skin.   Accutane is an isolated form of tretinoin, so when you take it you're body is fully absorbing what works and isn't converting it into other stuff that is toxic for your liver. thats why it is considered a vitamin A derivative. "

I doubt they do biopsy to test for isoretinoin anyway :(

Edited by Mike San

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2 minutes ago, Mike San said:

Thanks!!

Looks like I cant really compare the 2 after all   :(

http://www.acne.org/messageboard/topic/276123-how-many-iu-s-of-vitamin-a-are-needed-to-have-an-accutane-dose/

"  when you take vitamin A it gets converted to tretinoin (acctuane),   BUT it also gets converted to a shitload of other chemicals that are even more toxic than accutane and have no effect on your skin.   Accutane is an isolated form of tretinoin, so when you take it you're body is fully absorbing what works and isn't converting it into other stuff that is toxic for your liver. thats why it is considered a vitamin A derivative. "

I doubt they do biopsy to test for isoretinoin anyway :(

no youd have to lie a little bit or say it was vitamin a.its still considered surgery though but pretty safe. but i would take this hpbcd before id get a biopsy thats prob alot of money too. I believe at least me and yetanotheraccutane victim are going to try it. I will take it orally and let people know if any results.

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25 minutes ago, guitarman01 said:
31 minutes ago, Mike San said:

Thanks!!

Looks like I cant really compare the 2 after all   :(

http://www.acne.org/messageboard/topic/276123-how-many-iu-s-of-vitamin-a-are-needed-to-have-an-accutane-dose/

"  when you take vitamin A it gets converted to tretinoin (acctuane),   BUT it also gets converted to a shitload of other chemicals that are even more toxic than accutane and have no effect on your skin.   Accutane is an isolated form of tretinoin, so when you take it you're body is fully absorbing what works and isn't converting it into other stuff that is toxic for your liver. thats why it is considered a vitamin A derivative. "

I doubt they do biopsy to test for isoretinoin anyway :(

no youd have to lie a little bit or say it was vitamin a.its still considered surgery though but pretty safe. but i would take this hpbcd before id get a biopsy thats prob alot of money too. I believe at least me and yetanotheraccutane victim are going to try it. I will take it orally and let people know if any results.

 Where do you purchase this from?

Are you going to get basic bloods done before or after or just go off of feel.  

thanks for the advice.     Cant wait to hear your feedback on it.

  Edited by Mike San

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On 1/1/2016 8:25:52, IndigoRush said:

I'm really struggling at the moment. As soon as I realise all my issues were started because of this drug I get so stressed out knowing I don't have a clue what is going on. 10 years and counting. I just don't know how to go on from here. I can't deal with this chronic fatigue for the rest of my life. Happy 2016 :/

HEY PLEASE CHECK YOUR INBOX MESSAGES !!

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On 19.6.2015, 03:49:40, MonsterDiesel said:

I have. Everything is within the normal range. LH, FHS, prolactin, SHBG, DHEA, IGF-1, thyroid all normal..well, low normal. But Doctor's see nothing wrong with it. Testosterone hovers around the 200's. If there was a problem with the testicles, LH would be high. If the problem was in the pituitary or hypothalamus, LH would be very low. But everything reads as "normal." Doctors don't know what to do, other than use TRT.

I saw an endo. He went as far as to say that a total T of 230 something was perfectly normal.

Edit: I wanted to add something. People here have been asking if anyone has gotten a liver biopsy. Well, I have. I took accutane in 2001. The biopsy was done in...2008 or 2009. I was seeing a diagnostician. He called him the Doctor House of this place. Anyways, he agreed I had some sort of systemic disease because I was all fucked up. Mind you, at this time, I still didn't think Accutane had any play here, but I suspected it. Doctor was guessing hemochromatosis or maybe copper overload. All they found was Hydropic change in the hepatocytes or vacuolar degeneration. Just means something had damaged the liver but there was no necrosis or fibrosis. What did the damage? Accutane I suspect.

He has done a biopsy

http://www.ncbi.nlm.nih.gov/pubmed/14978883 Edited by vianello

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6 hours ago, vianello said:
 
Quote
A twenty year old, foreign-born sportsman visited the Out-patient Clinic of our Hospital with complaints of progressive arthralgia, hepatomegaly and increasingly abnormal liver function tests of six months duration. Tests for virus hepatitis were negative, alcohol abuse or drug addiction could be excluded. An open needle biopsy of the liver was performed and the tissue was examined with the light and electron microscope. On routine light microscopy no abnormality was recognized. Electron microscopic examination revealed changes characteristic of vitamin A toxicity: hyperplasia of the perisinusoidal (Ito) cells with evidence of their activation and transformation, increased storage of lipids and vitamin A, perisinusoidal fibrosis, damage of the sinusoidal wall, partial necrosis in hepatocytes and an increased number of lysosomes, megalysosomes and smooth endoplasmic reticulum (SER), the signs of cholestasis as well as an increased number of Kupffer cells in the lobules etc. Histochemical examination showed a high content of vitamin A in the transitional (Ito) cells and in hepatocytes. These data led to further questioning of the patient who disclosed that he had acne conglobata which had been treated with Isotretionin, 20 mg/day, for more than half a year. After the therapy was stopped, the symptoms of polyarthralgia improved and after a few months they ceased entirely, however, the laboratory data returned to normal only after a long period of time. This case indicates that electron microscopic examination of the liver biopsy may play an important role in the recognition of vitamin A intoxication. It also illustrates that symptoms of joint disease may be caused by long-term retinoid treatment. The authors have presented the latest clinical and experimental data concerning the changes in the liver, joints and skeleton caused by retinoid intoxication.




This is a really interesting study! I've often wondered what a liver biopsy results for someone post-accutane would be like (I've had a couple of ultrasounds on my liver due to 'pain under the right lower rib', like the feeling of a swollen liver, and I still get this) but nothing showed abnormal on the scans, liver panel blood tests within range too). So this liver biopsy confirms a few things would have been speculated on already, namely;
 
  • increased storage of lipids and vitamin A
  • fibrosis (excessive accumulation of scar tissue that results from ongoing inflammation and liver)
  • signs of cholestasis (condition where bile cannot flow from the liver to the duodenum)

Would be good to see some other biopsy results, but obviously this at least gives us something to go on. On the assumption we have the above conditions, and those others mentioned in the study, then taking supplements to tackle those things would seem like an obvious direction to take (many have already been touched upon, taurine, NAC, TUDCA, also SAMe - which seems to come up a lot - something I've got but have yet to try) 

And maybe liver flushes should be given more credit (I’m quick to write them off as a waste of time due to lack of firm evidence to support them, but I did try one once), but some people seem to be pretty convinced they’ve helped.. Edited by tanedout

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16 hours ago, guitarman01 said:
16 hours ago, Mike San said:

 

I believe at least me and yetanotheraccutane victim are going to try it. I will take it (HPB-cyclodextrin) orally and let people know if any results.
Email I sent out regarding oral vs IV cyclodextrin
"If you could give your thoughts on oral vs intravenous administration of HPBCD, it would be incredibly useful. Perhaps you could remark about safety, dosage, and effectiveness for treating hypervitaminosis A in the liver.
 
Currently, we are going to try the same dosage Dr. Carpenter used:
"The patient received a continuous intravenous infusion at 470 mg/kg/24hrs for a total of 30 g over 4 day period in the form of 5% aquous solution in water.. Other than generalized irritability and leg pain associated with vitamin A toxicity, no adverse events were reported, although cholesterol levels decreased by 20-30% during the cyclodextrin infusions."
 
"Clinical observations and those laboratory results which were related to the disease and which were collected at the time of infusion therapy had been published previously;6J8 the distribution of retinoids in lipoproteins was described later.15 Table 2 displays the clinical chemistry data documenting the lack of short-term adverse effects of the infusion. The data show that in spite of a badly balanced injection solution, no hemolysis was seen."
 
 
 
Some information about safety from this link:
 
"At 100 mg/Kg some minimal histological changes were found in the epithelial cells of the urinary bladder, kidney tubular cells and in the liver."
 
 
 "At 400 mg/Kg, there was a decreased body weight and food consumption, increased water consumption, decreased hematocrit, hemoglobin and erythrocyte levels, increased creatinine, total bilirubin and aspartate and alanine aminotransferase levels. Some organ weights also increase. Most of these changes were reversible after one month except for slightly elevated aspartate and alanine aminotransferase levels and histological changes in the lung and urinary tract that were only partially reversible."
 
 
"In subchronic toxicity studies, no adverse effects were found in rats treated intravenously with 50mg/Kg or in dogs receiving 100 mg/KG HPBCD. At 400 mg/Kg in dogs there were slight increases in serum alanine and aspartate aminotransferase and total bilirubin. Histological changes werefound in the lung and epithelial cells of the urinary bladder and renal pelvis. All of the changes were reversed within a month after treatment except for incomplete re- versibility of the swollen renal plevis epithelium. Teratogenicity and embryotoxicity studies have been done in rats and rabbits at doses up to 400mg/Kg per day. Slight maternal toxicity was observed in rats at 400mg/Kg but there were no primary adverse effects in the offspring. No adverse effects were observed in the rabbits."
 
 
Seems that at about 400 mg/kg per hour is about the tolerable limit. Not entirely sure, though. We may do less just as a precaution. We want to get the most bang for the buck, though.
 
I appreciate your time and kindness,
 
(Me)"
--
The response to me:
 I am not a physician, I cannot give medical advice nor do I intend to. My thoughts come from my extensive experience  with the medical use of Trappsol® HPB.
   Oral will not be efficacious. Acute treatment IV with long term continuous subcutaneous administration until the underlying cause is corrected seems to me to be the best plan.
Edited by yetanotheraccutanevictim

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17 minutes ago, yetanotheraccutanevictim said:
The response to me:
 I am not a physician, I cannot give medical advice nor do I intend to. My thoughts come from my extensive experience  with the medical use of Trappsol® HPB.
   Oral will not be efficacious. Acute treatment IV with long term continuous subcutaneous administration until the underlying cause is corrected seems to me to be the best plan.
well that is discouraging I really dont feel like iv'ing this stuff at all. I just cant image it wouldnt have a effect. will probably still try a amount orally as long as I got the stuff and knowing the safe dosages. 

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