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On 9/9/2017 at 1:19 PM, Colinboko said:@guitarman01didn't you have a Mayo Clinic appointment..? Any update on that?
It was at a university not too far from me. Mayo turned me down. I tried going directly through their neurology department. maybe getting a referral to a internal medicine doctor there would be the better route to go and thats probably how you get routed to what they feel are the appropriate specialists. idk. I might try again at some point.
So the neurologist I went to was going to give me the tilt table test for POTS, but now he wants me to see a different specialist before this test.
Unfortunately he didn't seem to have much or any knowledge of the achr ganglionic neuronal antibody, which was disappointing, but this next specialist might. he did spend about 2 hours with me though.
Got some more blood tests while I was there.
One that stands out is Lupus anticoagulant work-up
Maybe this can detect lupus type symptoms even with a negative ANA antibody.
I should get this result in a few days.
2 minutes ago, guitarman01 said:It was at a university not too far from me. Mayo turned me down. I tried going directly through their neurology department. maybe getting a referral to a internal medicine doctor there would be the better route to go and thats probably how you get routed to what they feel are the appropriate specialists. idk. I might try again at some point.So the neurologist I went to was going to give me the tilt table test for POTS, but now he wants me to see a different specialist before this test.
Unfortunately he didn't seem to have much or any knowledge of the achr ganglionic neuronal antibody, which was disappointing, but this next specialist might. he did spend about 2 hours with me though.Got some more blood tests while I was there.
One that stands out is Lupus anticoagulant work-up
Maybe this can detect lupus type symptoms with even a negative ANA antibody.
I should get this result in a few days.
Interesting!
Stands out in what sense? Like you actually had a questionable result from it?
4 minutes ago, Colinboko said:Interesting!
Stands out in what sense? Like you actually had a questionable result from it?
I meant a test I havent had yet that im pretty curious about the result, because I could see this making sense.
LAC is found in, but not limited to, patients with systemic lupus erythematosus; LAC is associated with other autoimmune disorders and collagen vascular disease
3 minutes ago, guitarman01 said:I meant a test I havent had yet that im pretty curious about the result, because I could see this making sense.
LAC is found in, but not limited to, patients with systemic lupus erythematosus; LAC is associated with other autoimmune disorders and collagen vascular disease
Gotcha!! Well keep me updated. Pretty interested in the autoimmune side of this...
let us just agree that it's complicated. and we need to just keep progressing. it's the only way. trial and error until we succeed.
24 minutes ago, macleod said:let us just agree that it's complicated. and we need to just keep progressing. it's the only way. trial and error until we succeed.
We just have too many people wanting others to figure it out for them. If we were all testing weekly/monthly, I'm sure we'd find a lot more out at a faster rate. Can we just shut up about the damn supplements already. Like come on people.. this is WAY deeper than that.
@tanedoutI think this conversation will be of interest :
Why Sulfation phase is important for leaky gut :
10 hours ago, TrueJustice said:You have no concern with telomere shortening??That angle doesn't add up for you?
Too any of us feeling prematurely aged with more problems than just liver which leads me to believe liver isn't the source of problems, it's more cellular and wide spread.
Thats not to say don't work on your liver but just don't think that's the end of it all!!
Telomere's can be 50% shorter in people who are stressed than people who aren't - maybe ours are shorter because we're so stressed about everything else accutane caused in us rather than the actual accutane shortening them!?
You can lengthen telomeres so it isnt doom and gloom if accutane has in fact shortened them.
Many things in life shorten them dramatically, people who smoke absolutely hammer their telomeres, however, you see people live into their 90s having smoked for decades.
I think saying that telomere shortening from accutane will age us all prematurely is a very dangerous statement to be making to people who are already worried about what the drug did to them. The sceince on telomeres is very new and there is still doubt about how shortening affects aging anyway.
It is probably the amount of stress, anxiety and depression from accutane that is causing what feels like premature aging rather than anything at all to do with telomeres.
32 minutes ago, Justdry said:Telomere's can be 50% shorter in people who are stressed than people who aren't - maybe ours are shorter because we're so stressed about everything else accutane caused in us rather than the actual accutane shortening them!?You can lengthen telomeres so it isnt doom and gloom if accutane has in fact shortened them.
Many things in life shorten them dramatically, people who smoke absolutely hammer their telomeres, however, you see people live into their 90s having smoked for decades.
I think saying that telomere shortening from accutane will age us all prematurely is a very dangerous statement to be making to people who are already worried about what the drug did to them. The sceince on telomeres is very new and there is still doubt about how shortening affects aging anyway.
It is probably the amount of stress, anxiety and depression from accutane that is causing what feels like premature aging rather than anything at all to do with telomeres.
Well im only commenting based on that study. Commonsense must tell us by now and I'm guilty of this as much as anyone but given the multitude of problems, from basic stress to liver to brain to fatigue to thinning hair, our problems must be cellular??
Our problems are too widespread in my opinion to be stemming from liver or gut.
I'm also going to agree here with Colinboko and say we need to continue with more testing but at the same time we need to acknowledge all the hard work and patience getting to where we are today - we're only at a point now where we are looking at deeper and more obscure tests after exhausting everything from MRI, liver ultrasounds, full body scans, colonoscopy, endoscopy, eye tests, massive amounts of blood testing from everyone....the list goes on, credit must be given for the years it's taken to eliminate so much shit!!!
I agree - time now to look at autoimmune issues at a deeper level.
Still If I believe it's cellular and widespread I'm also open to perhaps finding something in one particular area that we can latch on to - even if it's something that just mimics a disease i.e Lupus or Sjogrens... that would be something.
8 hours ago, Justdry said:maybe ours are shorter because we're so stressed about everything else accutane caused in us rather than the actual accutane shortening them!?
Although that is possible, that is not what the study I posted indicated. The study identified two different pathways Accutane's metabolite acts on, which directly lead to telomerase downregulation. It was a biological (mechanism of action) study. Again, this entirely unsurprising for a drug that treats cancer.
8 hours ago, Justdry said:I think saying that telomere shortening from accutane will age us all prematurely is a very dangerous statement to be making to people who are already worried about what the drug did to them.
So this is the second time someone implied I should watch what I (scientifically) say on here because it may make people lose hope. I am only here to discuss science and evidence-based treatments. I'm not putting any slant to this stuff, nor am I complaining.
Note that it is not hysteria or pseudo-science to say Accutane causes pro-aging effects. That is exactly how it is so effective at treating cancer and acne. Cancer is essentially cellular division run amok, and Accutane effectively halts cellular division in several places in the body (brain, skin, intestines, muscles, etc.) through different pathways (telomerase downregulation, FoxO upregulation). Good for cancer (short term), bad for healthy aging. All of the evidence is there. And like other chemo drugs, Accutane also leads to issues like hormone deficiency and cognitive impairment. It's all related.
I don't look at this and feel hopeless. Like you, I agree we can still manipulate our health. But even I did believe things were hopeless, that wouldn't stop me from sharing factual information. I have shared several supplement regimens that have helped me during these post-Accutane years. At this point, that is a more interesting conversation to me.
Since someone asked what I take:
N-acetyl-cysteine (1-2 grams), Acetyl-l-Carnitine (1 gram), Shilajit (250 mg), Coenzyme Q10 (200 mg). Additionally, I take Ashwagandha, Pregnenolone (100 mg every other day), vitamin D, Magnesium, and Caffeine. Sarcosine with N-acetyl-cysteine will help address blank mind, emotional blunting, and anhedonia. Many of these supplements have secondary effects on inflammation.
My apologies. I guess its hard for me to understand as i dont have any effects that make me feel like ive aged. No mental or cognitive issues, no ED, just had a baby, all fine in that sense. Its my skin thats f'ed up 7 years after taking it.
I keep telling everyone who has dryness rashes flushing
and similar issues as me
get igg4 related disease testing
go to Boston mass general they study igg4
no one ever checked this allergist did and said it can attack eye glands saliva mimic sjorgens
and can attack vital organs and lymph nodes
im seeing top rheum in Boston soon
On 9/11/2017 at 10:30 PM, ACCUiTy_drANE said:Although that is possible, that is not what the study I posted indicated. The study identified two different pathways Accutane's metabolite acts on, which directly lead to telomerase downregulation. It was a biological (mechanism of action) study. Again, this entirely unsurprising for a drug that treats cancer.
So this is the second time someone implied I should watch what I (scientifically) say on here because it may make people lose hope. I am only here to discuss science and evidence-based treatments. I'm not putting any slant to this stuff, nor am I complaining.Note that it is not hysteria or pseudo-science to say Accutane causes pro-aging effects. That is exactly how it is so effective at treating cancer and acne. Cancer is essentially cellular division run amok, and Accutane effectively halts cellular division in several places in the body (brain, skin, intestines, muscles, etc.) through different pathways (telomerase downregulation, FoxO upregulation). Good for cancer (short term), bad for healthy aging. All of the evidence is there. And like other chemo drugs, Accutane also leads to issues like hormone deficiency and cognitive impairment. It's all related.
I don't look at this and feel hopeless. Like you, I agree we can still manipulate our health. But even I did believe things were hopeless, that wouldn't stop me from sharing factual information. I have shared several supplement regimens that have helped me during these post-Accutane years. At this point, that is a more interesting conversation to me.
Since someone asked what I take:
N-acetyl-cysteine (1-2 grams), Acetyl-l-Carnitine (1 gram), Shilajit (250 mg), Coenzyme Q10 (200 mg). Additionally, I take Ashwagandha, Pregnenolone (100 mg every other day), vitamin D, Magnesium, and Caffeine. Sarcosine with N-acetyl-cysteine will help address blank mind, emotional blunting, and anhedonia. Many of these supplements have secondary effects on inflammation.
That's interesting to see that you take an almost identical stack of supplements to what I'm currently taking! Although I use progesterone cream rather than pregnenolone.
Regards telomeres, the herb Astralagus is one of the few things you can take to lengthen them, although it's likely you'd need to take large amounts to have a significant affect. It's also said to activate t-cells, which again should be a benefit to us. I've got some in my sups cupboard, but have yet to try it;
QuoteAstragalus is a fundamental herb used in Traditional Chinese Medicine and is primarily used for longevity, to fight inflammation, and for kidney support. It can also reduce levels of c-reactive protein, one of the inflammation markers that you can drive down with the Bulletproof Diet. Astragalus has 126 useful components, mostly flavonoids, saponins and polysaccharides.[31]
Astragalus is particularly interesting in that its the only natural substance that contains cycloastragenol, a molecule that can lengthen telomeres by activating telomerase production by 2-3x.[32, 33] Telomeres are structures on the end of chromosomes that, the shorter they become, the closer that cell is to dying. By lengthening telomeres, you could essentially delay cell death. Telomeres could be a key to aging gracefully.
You may have heard of TA-65. This is the branded and patented form of cycloastragenol. While studies do show that this substance is effective in increasing telomerase activity, but many of those studies were also conducted by the manufacturer of TA-65. It doesnt make them irrelevant, its just something to keep in mind.
For the last two years, Ive been taking up to 200 mg/day of cycloastragenol, which takes about 100 pounds of astragalus to make. Its freaking expensive, so I stopped. Really hoping my telomeres are grateful, and wishing Id measured them beforehand. My telmere measuring kit is on its way.
Astragalus also has immune-boosting properties and can activate T-cells even more than echinacea.[34]
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If you look at the long term side effects of say a stomach cancer / liver cancer patient who was treated with traditional chemotherapy you get pretty much thesame long term side effects as what we have , only difference is NONE of us actually HAD cancer only a few red spots I find that disgusting and criminal .
You know the worst part is I still get mild acne loljust like I had before treatment so my question is , what was the point of it all other than being a guineapig for a pharmaceutical company with their new miracle drug . I took this drug 22 years ago butI had no idea of what I was getting into I was just an inocent young adult who was naive enough to trust allopathic medicine.
Btw chemotherapy has a dismal 2 to 3 % success rate heck your better off to do NOTHING if you have cancer at least your quality of life won't be affected . Your hair won't fall out and you won't feel like crap.
Better yet look into german new medicine if you know ANYONE with cancer please direct them to this.
German new medicine has an over 90 % success rate treating cancer that's the highest I have ever found and it's way higher than even herbal medicine or hemp oil treatments forcancer .
21 hours ago, Colinboko said:We just have too many people wanting others to figure it out for them. If we were all testing weekly/monthly, I'm sure we'd find a lot more out at a faster rate. Can we just shut up about the damn supplements already. Like come on people.. this is WAY deeper than that.
I agree. Supplements are complete shit for me and I've taken a ton only to find the only effect is different colored urine. I have an appointment with Mayo in Rochester later this month. I'll push for every test known to human and for them to find some abnormalities and focus on those then go from there.
I'm with you on this one. It's only been 9 months since post accutane and I don't know how people can live with this. I have to get answers and treatment soon.
36 minutes ago, Jorcruz24 said:I agree. Supplements are complete shit for me and I've taken a ton only to find the only effect is different colored urine. I have an appointment with Mayo in Rochester later this month. I'll push for every test known to human and for them to find some abnormalities and focus on those then go from there.I'm with you on this one. It's only been 9 months since post accutane and I don't know how people can live with this. I have to get answers and treatment soon.
Literally don't know how @TrueJusticeand @guitarman01have done it...
I'm a year post tane and I'm DYING.
I just found something that ties in with Tanedout's previous post about poor absorbtion of fats and fat soluble vitamins since accutane.
This relates to those of us who have dry skin years after accutane.
I was reading about GLA and was very interested in this exert from an article:
''Dietary deficiency of these fatty acids results in a characteristic scaly skin disorder, increased epidermal turnover rate, weak cutaneous capillaries that rupture easily, decreased wound healing and increased transepidermal water loss (TEWL) leading to xerosis (dry skin)''
This describes EXACTLY what has happened to my skin since accutane, it has gotten progressively worse over the 7 year period. This leads me to think that maybe the whole thing about not processing fats and fat solublevitamins correctly may be right.
Seems like the best thing to try is Taurine to help process fats, as well as taking borage oil and increasing dietary fat intake. If this doesn't hold the key for my issue then I guess i'm just f'ed.
4 hours ago, Colinboko said:Literally don't know how @TrueJusticeand @guitarman01have done it...I'm a year post tane and I'm DYING.
16 years post accutane here.
14 hours ago, Justdry said:My apologies. I guess its hard for me to understand as i dont have any effects that make me feel like ive aged. No mental or cognitive issues, no ED, just had a baby, all fine in that sense. Its my skin thats f'ed up 7 years after taking it.
Yes - same here. It is my skin, that makes most of my problems. Dryness, extreme sensitivity to sun light and weather conditions in general. also dry eyes are a serious issue.
15 hours ago, ACCUiTy_drANE said:Since someone asked what I take:
N-acetyl-cysteine (1-2 grams), Acetyl-l-Carnitine (1 gram), Shilajit (250 mg), Coenzyme Q10 (200 mg). Additionally, I take Ashwagandha, Pregnenolone (100 mg every other day), vitamin D, Magnesium, and Caffeine. Sarcosine with N-acetyl-cysteine will help address blank mind, emotional blunting, and anhedonia. Many of these supplements have secondary effects on inflammation.
Thanks for the info. Would you say, that some of the supplement had a specific impact on your skin? I am mostly suffering from skin dryness and skin sensitivity.
I'm sure you guys are all suffering and we're all living through some sort of hell post Tane, but at least for those of you living with just dry skin I would consider yourselves very lucky. I have dry eyes and scalp but in no way does that compare to the constant head pressure, aching muscles and joints and horrendous digestion issues. I seriously feel like I might slip into a coma or just become brain dead because this constant pain in my head can't be good long-term and is destroying something. So for those of you who don't have to deal with this, at least consider yourself a little bit lucky in that sense.
Constant head pressure I can relate mine comes and goes , I also have the dry eyes , mouth massive hair loss and my cognitive functioning has been reduced since tan exposure. I was able to get rid of my severe back pain by increasing water intake .
These are all well documented chemotherapy side effects . I'm pretty sure that this drug has shortened my life span considerably.