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30 minutes ago, guitarman01 said:you guys ever had a b1 thiamine test?
apparently whole blood is more accurate than plasma or serum.
Vitamin B1, Plasma 8nmol/L 8 - 30 nmol/L
http://www.hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/
Um, why hasn't anyone commented on my previous video, it's actually very relevant...if toxicity affected the metabolism of the brain, its very possible that it could account for most of our side effect profile..
some other useful literature:
https://www.hindawi.com/journals/isrn/2012/814795/
2 hours ago, macleod said:Um, why hasn't anyone commented on my previous video, it's actually very relevant...if toxicity affected the metabolism of the brain, its very possible that it could account for most of our side effect profile..
some other useful literature:
https://www.hindawi.com/journals/isrn/2012/814795/
If we are talking about the thyroid again I do have some thyroid antibodies indicating possible thyroid inflammation. Based on what ive read if its not significant enough to cause thyroid dysfunction, ie. clinical hypothyroidism according to blood test or elevated tsh, it does not require treatment. Chronic inflammation could eventually lead to thyroid destruction inducing hypothyroidism. So I havent forgot about this either.
For me im trying to be very straightforward in what I can test, How I can treat, and what's medically recognized that I can show to a doctor and further investigate. No more wasting money on supplements. I'll be wasting money on tests now to try to narrow things down.
Did the biopsy show anything from your endoscopy?
Speaking of tests. This one that I mentioned just a few days ago, came back completely normal. At this point I feel I have done all the testing I possibly could short of a biopsy or fibroscan to test liver function.
Mitochondrial (M2) Antibody <20.0 Units result
Negative 0.0 - 20.0
Equivocal 20.1 - 24.9
Positive >24.9
Mitochondrial (M2) Antibodies are found in 90-96% of patients with primary biliary cirrhosis.
8 hours ago, macleod said:Um, why hasn't anyone commented on my previous video, it's actually very relevant...if toxicity affected the metabolism of the brain, its very possible that it could account for most of our side effect profile..
some other useful literature:
https://www.hindawi.com/journals/isrn/2012/814795/
I got to watch first 10 min but what did it conclude after 42??
It was sounding like heading down the path of Thyroid function when he was talking about cold hands and feet etc. So get on the Iodine and cofactors or was there more to it?
On another note has anyone tried that Phosphatidyl Choline yet? That looked promising even if it just provided relief.
Anyone tried it yet?
No, not really. It's referring to hypometabolism caused by environmental factors, which in our case would be isotretinoin toxicity (and also hyper-metabolism), and how this condition affects our entire phenotype, our physiological state of equilibrium....basically the timing on your car is off. If you aren't into big stupid words and medical jargon. Alterations in metabolism can affect you on a cellular level, from the brain, to muscle, to hormone glands, even the enzyme production in your gut.
The human prefrontal cortex develops well until your mid-20's. Most people who takethis drug have developing brains.If this drug can cross the blood brain barrier, and has genetic transcription capabilities (which we know it does), and a brain isexposed to toxic substances, which we know Vit A is (for centuries), then the evidence is there to suggest everything we are experiencing.. There are so many science journals talking about this very thing.
It would explain the random suicides and neurological behaviors as well as the joint pain and digestive malfunctions. The brain enables a defense mechanism when exposed to toxicity, in some cases hyper/hypo metabolism, inflammation. It's completely absurd that no one can win a court case regarding depression and suicide, all of the medical journals regarding vitamin A toxicity suggesting this very thing isthere. Reprehensible.
2 hours ago, macleod said:No, not really. It's referring to hypometabolism caused by environmental factors, which in our case would be isotretinoin toxicity (and also hyper-metabolism), and how this condition affects our entire phenotype, our physiological state of equilibrium....basically the timing on your car is off. If you aren't into big stupid words and medical jargon. Alterations in metabolism can affect you on a cellular level, from the brain, to muscle, to hormone glands, even the enzyme production in your gut.
The human prefrontal cortex develops well until your mid-20's. Most people who takethis drug have developing brains.If this drug can cross the blood brain barrier, and has genetic transcription capabilities (which we know it does), and a brain isexposed to toxic substances, which we know Vit A is (for centuries), then the evidence is there to suggest everything we are experiencing.. There are so many science journals talking about this very thing.
It would explain the random suicides and neurological behaviors as well as the joint pain and digestive malfunctions. The brain enables a defense mechanism when exposed to toxicity, in some cases hyper/hypo metabolism, inflammation. It's completely absurd that no one can win a court case regarding depression and suicide, all of the medical journals regarding vitamin A toxicity suggesting this very thing isthere. Reprehensible.
So we need to find a way to shut off the microglial response cause that's essentially what I've been saying for like 10 posts straight now. There is no known cure for this yet.. besides steroids to help treat the symptoms. It's inflammation but regardless of how it's happening, once microglia are activated they don't have an off switch. Scientists and doctors are still exploring a way to inhibit this without the use of steroids. Hence why LDN tends to work for some. Why it doesn't for all? I have no idea.
Another weird thing that I've noticed (extremely popular in people with CFS as well)
The more sleep I get, the worse I feel when rising. And I don't really get poor sleep, like I sleep pretty soundly throughout the night. But if I were to actually get up when my body wakes me up at say 8 AM I would have much more energy (would still probably crash within the day but still). I find this sooo interesting and people with CFS have found their symptoms to be gone when depriving themselves of sleep for a couple days (terrible for you but I just find it interesting). My assumption is because it's running down the immune system.... ? Maybe? Idk..
40 minutes ago, Colinboko said:So we need to find a way to shut off the microglial response cause that's essentially what I've been saying for like 10 posts straight now. There is no known cure for this yet.. besides steroids to help treat the symptoms. It's inflammation but regardless of how it's happening, once microglia are activated they don't have an off switch. Scientists and doctors are still exploring a way to inhibit this without the use of steroids. Hence why LDN tends to work for some. Why it doesn't for all? I have no idea.
I just happened to be reading a thread yesterday that briefly touches on chronic microglial activation if you're interested: http://forums.phoenixrising.me/index.php?threads/non-standard-anti-anxiety-treatment.6432/
It mentions it in the first post.
18 hours ago, TrueJustice said:On another note has anyone tried that Phosphatidyl Choline yet? That looked promising even if it just provided relief.
Anyone tried it yet?
I know ive probably contradicted myself a thousand times on here but after learning more and more information hopefully some things will weed themselves out while others will remain constant.
im not sure about phosphatidyl choline being a good idea for someone that has phospholipid antibodies. Im referencing this article which ive posted a few times now. Ive searched myself and found zero information if supplementing would be a good or bad idea. I say this because if I have these phosphatidylserineantibodies, and it was drug induced, there is a chance you could have them too.
At this time there is insufficient evidence to determine if supplementing lecithin would be beneficial or harmful for those with acetylcholine receptor autoantibodies or antiphospholipid syndrome. More clinical research is needed to understand how lecithin supplementation influences the various autoimmune processes that may exist in these patients.
Whats interesting though is that if supplementing was beneficial and that's a big if, there is actually a phosphatidylserine supplement.
But without any knowledge if its beneficial or harmful to me and maybe you, it might be best to stay away.
8 hours ago, Recreant said:I just happened to be reading a thread yesterday that briefly touches on chronic microglial activation if you're interested: http://forums.phoenixrising.me/index.php?threads/non-standard-anti-anxiety-treatment.6432/
It mentions it in the first post.
That is good information. Prednisone is the nuke. its the last resort.They come out with many different immunosuppressive drugs that are steroid sparing because long term steroid use could carry a lot of risks. Now if your could take lets say a 3 week course of 30 mg prednisone( as referenced in medical studies for gastroenteritis ) and wipe something out and it doesnt come back, well thats a entirely different story. Unfortunately alot of these inflammatory diseases are chronic and require long term ongoing treatment or risk of relapse. In this case long term steroid use could be dangerous and it would be better to find the source of the problem and be able to use a more targeted drug. Ehol (mispelled that, sorry) was on a pretty high tapered dosage of steroids, but unfortunately it sounded like the effect was only temporary while he was on them.
34 minutes ago, guitarman01 said:That is good information. Prednisone is the nuke. its the last resort.They come out with many different immunosuppressive drugs that are steroid sparing because long term steroid use could carry a lot of risks. Now if your could take lets say a 3 week course of 30 mg prednisone( as referenced in medical studies for gastroenteritis ) and wipe something out and it doesnt come back, well thats a entirely different story. Unfortunately alot of these inflammatory diseases are chronic and require long term ongoing treatment or risk of relapse. In this case long term steroid use could be dangerous and it would be better to find the source of the problem and be able to use a more targeted drug. Ehol (mispelled that, sorry) was on a pretty high tapered dosage of steroids, but unfortunately it sounded like the effect was only temporary while he was on them.
I wonder if like you said, we could potentially wipe something out with the correct dosing. Or at least put it into remission for say a few months and then go back when we feel a flare?
On 6/7/2017 at 10:10 PM, macleod said:Um, why hasn't anyone commented on my previous video, it's actually very relevant...if toxicity affected the metabolism of the brain, its very possible that it could account for most of our side effect profile..
some other useful literature:
https://www.hindawi.com/journals/isrn/2012/814795/
Sorry, I have not had time but will take a look.
This is why I am interested in autism and gulf war syndrome - they have been poisoned by lead and who knows what else!
Autistic kids have been recovered and much research has been going on.
Gaps diet, supplements including VitB (IV) and Glutathione (IV) chelation and hyperbaric chamber.
Recovery can take up to 3 years and needs commitment.
This protocol works on gut health and hormone reboot.
We talked about hyperbaric chambers being used for PTSD and TBI before. (see Dr Mark Gordon)
Gulf war syndrome and PTSD (soldiers) are probably one and the same.
Who has the time, money and mental strength to keep up a regimen like this?
When it come to parents and their autistic kids - they are ruthless when it comes to helping their kids and they are able to control diet,
which we all know is extremely difficult, and they are prepared to sell all assets.
It must be said that not all kids recover but for the ones that do - it's amazing.
Youtube vaxxed.
Really need to get my adrenals tested. Probably going to request a saliva test. Another thing that I've noticed since the very beginning of my symptoms was the iris contraction. If I stand in a dark room and shine a flash light across my eye, the pupil will contract but then will not be able to hold its contraction and then begin to dilate in this weird type of rhythmic way.
Weak adrenals = low cortisol = systemic inflammation because my cortisol isn't there to shut it off.
Definitely checking into this.
3 hours ago, Colinboko said:Really need to get my adrenals tested.Weak adrenals = low cortisol = systemic inflammation because my cortisol isn't there to shut it off.
If I stand in a dark room and shine a flash light across my eye, the pupil will contract but then will not be able to hold its contraction and then begin to dilate in this weird type of rhythmic way.
That's one of the first things most people with post accutane symptoms thinks. But the majority of blood tests come back within range. The very very few ones who are found to be low in hormones, only just half of them respond positively to hormone replacement treatments. It took me years to figure out my lack of desire to do anything was more akin to clinical depression rather than adrenal insufficiency. Even though they feel the same. Same thing goes for the PFS users that can't get an erection anymore. Problem is upstairs, not downstairs.
As far as your eye, you should ask a neurologist to take a look at it...
This thread is starting to get pretty big and a lot of what people type about how they feel and what area they think the problem is actually repetition from previous users who have felt and said the same thing. And then theres also the random huge posts about every health ailment known to man taking up pages. We should organize and migrate the important areas of this thread to other websites while it's still small and manageable. I myself have been here for 8 years and haven't gone through every page. We need organization.
Look, we know its the brain, inflammatory, and metabolism oriented. At least imo. You should focus on mitigating these side effects.
These videos that I'm posting are well worth the investment of time. When you get through them you will have a better understanding of actual steps you can take to manage your ailments, improve quality of life, and ultimately decrease mortality.
Good video with some great insights - it goes into many things, much of which we've all taken at various times, it reinforces getting off bread and milk which I'm going to do. I'm just going to drink black coffee from now on, it's also becoming clear that I can do so much more to reduce Inflammation just by changing diet, milk for example can increase inflammation.
Not sure if this is already known amongst everyone but my local health store got me on the Active form of B vitamins this week, they said taking the normal B vitamin can be a waste of time, that you prob won't convert it or something, too early to tell if it's having an effect on energy just yet.
I also noticed that Glutamine is widely available in health food stores over Glutathione these days - does anyone know if Glutamine is better? The video talks a little about Glutathione. I'm interested in both of these for better gut health.
5 hours ago, macleod said:That's one of the first things most people with post accutane symptoms thinks. But the majority of blood tests come back within range. The very very few ones who are found to be low in hormones, only just half of them respond positively to hormone replacement treatments. It took me years to figure out my lack of desire to do anything was more akin to clinical depression rather than adrenal insufficiency. Even though they feel the same. Same thing goes for the PFS users that can't get an erection anymore. Problem is upstairs, not downstairs.As far as your eye, you should ask a neurologist to take a look at it...
This thread is starting to get pretty big and a lot of what people type about how they feel and what area they think the problem is actually repetition from previous users who have felt and said the same thing. And then theres also the random huge posts about every health ailment known to man taking up pages. We should organize and migrate the important areas of this thread to other websites while it's still small and manageable. I myself have been here for 8 years and haven't gone through every page. We need organization.
Look, we know its the brain, inflammatory, and metabolism oriented. At least imo. You should focus on mitigating these side effects.
These videos that I'm posting are well worth the investment of time. When you get through them you will have a better understanding of actual steps you can take to manage your ailments, improve quality of life, and ultimately decrease mortality.
See the thing is though... I haven't had my cortisol checked.. and the second thing is, one blood test doesn't determine a single thing about cortisol. It's the worst way to test it actually. Don't know of a single person who has gotten a saliva test on here. Regardless of you being here for 8 years, don't discourage someone out of getting tested for things that you didn't test positive for. After all, everyone has their own personal slew of several different side effects that could most definitely be coming from different places in the body. So speak for yourself when you say that we need to stop assuming it's certain ailments, because the only thing I ever see on here are your "know it all" posts (which are fine and dandy and I appreciate them). But, don't bash other people's thoughts...
There's usually one explanation for the iris contraction test and it's weakened adrenals.
oh man, i had a whole paragraph responding politely to your post until i got to the second half. if you took the time to go through everyone of these pages you'd find 10 of you, and 100 of your posts, even what you are about to type next. you know what, good luck man.
2 hours ago, macleod said:oh man, i had a whole paragraph responding politely to your post until i got to the second half. if you took the time to go through everyone of these pages you'd find 10 of you, and 100 of your posts, even what you are about to type next. you know what, good luck man.
Don't even know what that's supposed to mean. Good luck to you too
3 hours ago, Colinboko said:See the thing is though... I haven't had my cortisol checked.. and the second thing is, one blood test doesn't determine a single thing about cortisol. It's the worst way to test it actually. Don't know of a single person who has gotten a saliva test on here. Regardless of you being here for 8 years, don't discourage someone out of getting tested for things that you didn't test positive for. After all, everyone has their own personal slew of several different side effects that could most definitely be coming from different places in the body. So speak for yourself when you say that we need to stop assuming it's certain ailments, because the only thing I ever see on here are your "know it all" posts (which are fine and dandy and I appreciate them). But, don't bash other people's thoughts...There's usually one explanation for the iris contraction test and it's weakened adrenals.
Cortisol is a straight forward test. Initial blood test vey high confirmed with 24 hour urine test.
just got this lipid panel test result back. The one thing that stands out to me is the fairly low good cholesterol number. I thought I recalled some other people having lower good cholesterol as well, not for sure. If you guys are curious yourself, this test only cost me 29 dollars from walk in lab for you guys in the states.
I dont like how it shows less then 40 as a major risk factor for heart disease and im very borderline. Im not obese btw, quite the opposite actually.
On 6/1/2017 at 6:16 PM, guitarman01 said:See how your cholesterol numbers compare to the table below:
Total Cholesterol Level
Category
Less than 200mg/dL Desirable 200-239 mg/dL Borderline high 240mg/dL and above High LDL (Bad) Cholesterol Level
LDL Cholesterol Category
Less than 100mg/dL Optimal 100-129mg/dL Near optimal/above optimal 130-159 mg/dL Borderline high 160-189 mg/dL High 190 mg/dL and above Very High HDL (Good) Cholesterol Level
HDL Cholesterol Category
Less than 40 mg/dL A major risk factor for heart disease 40”59 mg/dL The higher, the better 60 mg/dL and higher Considered protective against heart disease
