10 hours ago, Colinboko said:

10 hours ago, TrueJustice said:

Are you saying you only feel 100% better when you're on it?

What happens when you're off it? Do you go back to feeing crap again? If that's the case it's not curing anything yeah, just masking the side effects!

Im just asking so I can gather all the info.

It's not masking anything. It's significantly reducing the constant inflammation accutane has set upon our bodies. If you think there is some magic pill that will ultimately and permanently reduce the inflammation that this pill has caused then by all means chuck up some options. But if prednisone is going to make me feel better, you can bet your ass I'm going to take it regardless of what it may bring down the road. I have a life to live. I have things I wish to accomplish. And I sure as hell don't want to have a life dependent on constantly checking an out dated blog.

I hope it isn't, trust me I want nothing more than to see this have success, reduce inflammation and improve our lives!!
But if Roaccutane has taught me anything it's to look into side effects that can come with taking drugs/medicine. In our case we're all prob willing to take a few more risks with trying out new drugs etc as we're sick of living with tane side effects, I get that but I still want to know stuff about everything I take - that's only normal.

If Im going to take it, I wan't to know say the difference between being on it for 3 months vs 6 months, that sort of thing.
Asking if the benefits are long lasting is also important to me, helps me understand if this is the way to go or to take LDN or to even continue pursuing the Iodine angle in trying to aid immune system.....

I'd love to see a study like this done on accutane sufferers! Clearly methylation is screwed up, just like with similar conditions such as CFS, PFS etc.

Some great results though, and I think many people could improve accutane sides with a similar regime. I've had some success and continue to take an active B-vit daily, but I do have issues with some of the supplements required;

Quote

Reporting on an important trial to determine whether FM and CFS patients are affected by compromised methylation ability, and whether nutrients the body employs in methylation might support improvements.

Dr. Neil Nathanis a noted specialist in integrative treatment of complex medical illnesses such as fibromyalgia, chronic fatigue syndrome, and Lyme. In addition to his clinical work with Gordon Medical Associates near Mendocino, CA, he is a respected educator, and author of the new book,On Hope and Healing: For Those Who Have Fallen Through the Medical Cracks.

Note: Dr. Nathan initially invited reader questions regarding the protocol he describes below. To review his answers to these questions, see"Q&A on the Simplified Methylation Protocol with Neil Nathan, MD."

______________

I suspect that the words "methylation protocol" are, at first glance, intimidating. But if you will hang in with me for a few paragraphs, I would like to make this both understandable and useful.

First of all, what is most important is that we have recently shown that the use of tiny doses of very specific combinations of vitamin B-12 and folic acid has resulted in significant improvement in patients with fibromyalgia and chronic fatigue syndrome. That's the bottom line.

So, if you are suffering with chronic fatigue syndrome and/or fibromyalgia, you may be interested in learning more about our research, and what we learned.

Let's start with the word "methylation" and de-mystify it.

In chemistry, a methyl group is simply a carbon atom surrounded by 3 hydrogen atoms, which chemically looks like this:

H
C - H
H

This grouping acts as aunitand if we tack this unit, this methyl group, on to another molecule, that is what we mean by methylation.

You dont need to be a chemist to understand that this process of methylation is absolutely critical to a host of the most important chemical reactions in our bodies.

Most important is that we need methylation to:

Create glutathione (the body's 'master' antioxidant and detoxifier),

Produce energy,

Impact brain chemistry,

Repair DNA,

And make melatonin from serotonin.

These are only a few of the essential reactions that require our ability tomethylate.

Genetically a Bit Compromised

What we have recently begun to understand is that many of us are genetically a bit compromised in our ability to methylate

And that when we get sick that adds another dimension of difficulty to our illness, one that we can no longer compensate for.

What we have also begun to understand is that we can fix this. By taking a combination of what are essentially vitamins, we can bypass these genetic blocks to methylation, and restore the bodys normal chemistry.

This concept was pioneered byAmy Yasko, PhD,who was working primarily with autistic children.

She found that with treatment of methylation blocks many autistic children recovered to a remarkable extent. She suspected that other illnesses, such as chronic fatigue syndrome, fibromyalgia, Parkinsons disease and other neurodegenerative diseases had a similar problem.

Rich Van Konynenburg, PhD, a biochemist, picked up on her concept andapplied it to chronic fatigue syndromeand fibromyalgia.

In a series of papers, he demonstrated that virtually every known biochemical imbalance known to occur in fibromyalgia and chronic fatigue syndrome could be explained by this inability to methylate properly.

Hearing Richs lecture in 2007, and having a huge practice of fibromyalgia and chronic fatigue syndrome patients, I was excited to try out this hypothesis on some of my sickest patients. These patients had not fully responded to the treatment program pioneered by Jacob Teitelbaum, MD, which I have utilized for over 15 years now.(1)

As soon as I got back to my office, I gave 50 patients this combination of B-12, folic acid, and vitamins(2) recommended by Dr. Van Konynenburg, which was based on recommendations from Dr. Yasko.

To my delight, 70% of my patients had improved within 3 months, and 20% reported that they were much better, occasionally to the point of feeling cured.

This was exciting news. I was fortunate enough to obtain a private research grant to do a more formal study. With the assistance of Dr. Van Konynenburg and Dr. Yasko, along with input from Dr. Teitelbaum, who helped design the data collecting research tools, andDr. Richard Deth, a well-known expert on methylation chemistry, we put this together.

The Project Went as Follows

I took 30 patients (none of whom were part of the first pilot project), all of whom I had treated with Dr. Teitelbaums program, all of whom had made some progress (ranging from 30% to 70% improvement) but were still not where they needed to be health-wise.

All had their methylation chemistry measured prior to the start of the supplements(3), and all took the supplements for the next 6 months, while we measured their chemistry and they reported on their health status throughout. All patients took exactly the same supplements.

After six months, we individualized the patients treatment program based on their chemistry results, and continued to follow their progress and monitor their chemistry.

The Results Are Exciting(4)

Several important questions are addressed and answered:

1. First of all, do we find that fibromyalgia and chronic fatigue patients do, indeed, have abnormal methylation chemistry? YES

The initial methylation testing showed that:

Every single patient had abnormal results.

The average starting value of glutathione in our patients was 3.2 mmol/L (normal being 3.9-5.5 mmol/L)), and the average starting value for SAM (S-Adenosyl methionine, aka SAM-e, the major methylator) was 218 mmol/L (normal being 221-256 mmol/L).

83% started with low glutathione levels.

2. Can we demonstrate that taking these supplements raises those numbers into the normal range? YES

After 3 months, the average glutathione level was 3.8 mmol/L

After 6 months, the average glutathione level was 4.3 mmol/L

After 9 months, the average glutathione level was 4.7 mmol/L, which represents a 47% improvement, and ALL patients now had a normal level.

After 3 months, the average SAM level was 227 mmol/L

After 6 months, the average SAM level was 238 mmol/L

After 9 months, the average SAM level was 241 mmol/L, with only one patient not up into the normal range.

3. Does this rise in glutathione and SAM correlate with clinical improvement? YES

We had our patients rate 5 important areas of function on a 1-10 scale. This included energy, sleep, pain, cognitive function (memory, focus, concentration, and brain fog), and overall sense of well being.

We can demonstrate progressive improvement in all of these areas in most patients, over the 9 months of the study:

Sleepimproved from an initial score of 4.7 to 6.0, with 73% of patients reporting improvement.

Energyimproved from an initial score of 3.9 to 6.6, with 86% of patients reporting improvement.

Painimproved from an initial score of 5 to 6.6, with 80% of patients reporting improvement.

Cognitive functionimproved from an initial score of 5.0 to 6.3, with 73% reporting improvement.

Overall sense of well beingimproved from 4.3 to 6.8, with 79% reporting improvement.

4. How much better were our patients? A LOT!

It took an average of 5 to 6 weeks before the supplements started to work, and we can clearly show that the longer patients stayed on this program, the better they got.

Not everyone got better, but the vast majority (86%) improved.

The average improvement was rated by our patients as 48%.

And notably, 27% reported so much improvement that they now felt essentially well! Several who had not worked in over 5 years were able to resume full-time employment without difficulty.

In doing a study of this sort, we must look at how many patients completed the study so that we know whether these numbers are valid. (The data for improvement in glutathione and SAM has a p value of <.05, which is quite statistically significant.)

Of the original 30 patients, all 30 completed the first three months; 29 completed the first six months; and 25 of 30 completed the full 9 month program.

http://www.prohealth.com/library/showArticle.cfm?libid=16138

Details of the supplements used in the above trial

Quote

Q: Specifically what are the vitamins that you mention in the article?

Dr. Nathan: The supplements we used in the trial are:

Actifolate: tablet (200mcg) daily

Folapro: tablet daily

General Vitamin Neurological Health Formula: start with tablet and work up, very slowly, to 2 tablets daily

Activated B-12 Guard: 1 sublingual lozenge daily

Phosphatidyl Serine Complex: 1 softgel capsule daily (we feel this is helpful, though not as central to the protocol as the others)

http://www.prohealth.com/library/showArticle.cfm?libid=16338

Has anyone been tested for glutathione or SAM levels before? I think this would be extremely interesting, and I'd expect them to almost certainly come back low.

Much more in depth info on methylation protocols here;

http://howirecovered.com/active-b12-therapy-faq/

18 minutes ago, tanedout said:

Has anyone been tested for glutathione or SAM levels before? I think this would be extremely interesting, and I'd expect them to almost certainly come back low.

Well if you want to drop the money on this, here you go. Im considering it myself, just looking into how viable it might be.
https://www.doctorsdata.com/methylation-profile-plasma/

Analytes Tested

Click any analyte name for additional clinical information, including reference ranges, specimen collection, stability and rejection criteria.

https://www.walkinlab.com/methylation-profile-blood-test-kit-doctor-s-data.html
244 bucks.

or would you spend that same amount of money on something like this instead,

20 hours ago, guitarman01 said:

if you were looking between ldn and a oral steroid I would say ldn would be the safer option long term. Prednisone is a immune suppressant but its also one of the most powerful anti inflammatories you can take. LDN is a immune stimulant or regulator but it also has central nervous system anti inflammatory properties. So it would be hard to say what part of the drugs were having the greater effect. Taking a immunosuppressant for a long period of time is probably not a good idea. I have also had various immune type blood tests or markers of systemic inflammation that have all come back normal. If it was me I would definitely trial LDN before prednisone. Both of these might just be masking a underlining issue, but for people that just want relief I definitely understand.

so LDN is no longer NEAR the panacea some people were claiming it was.

1 hour ago, cnb30 said:

22 hours ago, guitarman01 said:

if you were looking between ldn and a oral steroid I would say ldn would be the safer option long term. Prednisone is a immune suppressant but its also one of the most powerful anti inflammatories you can take. LDN is a immune stimulant or regulator but it also has central nervous system anti inflammatory properties. So it would be hard to say what part of the drugs were having the greater effect. Taking a immunosuppressant for a long period of time is probably not a good idea. I have also had various immune type blood tests or markers of systemic inflammation that have all come back normal. If it was me I would definitely trial LDN before prednisone. Both of these might just be masking a underlining issue, but for people that just want relief I definitely understand.

so LDN is no longer NEAR the panacea some people were claiming it was.

LDN is up there on the to do list. It's worth a shot. A big shot. Try it. When I did mention it to my doctor he said, "yea another guy with 100 problems came in here asking for that, and now with his Placebo LDN, he's doing a lot better." So, you may want to source your own. And be skeptical, because I suppose selling placebo's could be a possibility. If there is such a chemical try your best to get the real thing.

Also, Zinc like the person was mentioning on here for your depression. Proper nutrition and exercise. Any antioxidant you can get your hands on (I eat every fruit imaginable daily). Vitamin C (1,000 - 2,000mg a day) & D (500mg). Get plenty of sunlight. Experiment with Vitamin A (10,000iu) to see if your retinoid receptors are lacking and need to be leveled out or if they are fried and you need to stay away.

I think if you want to see big neurological improvements you're gonna want to try hyperbaric o2 therapy. Hard to convince a doctor to recommend this, if you have subjective neurological issues, they'll just want to refer you to a psychiatrist that'll just want to prescribe you drugs. So, just build your own chamber, it's not difficult if you get the right mechanical or engineering guy. Two 55 gallon drums, weld them together, cut out a window, screw in some pressure valves, buy an air compressor, get your hands on medical grade o2 tank and mask, then you're set.

You'll also want to try EEG biofeedback/neurofeedback. This is a new type of treatment, it's not covered by insurance companies, so you'll have to pay out of pocket.

It's tough man, if you really want to see change you're gonna have to get your hands on a decent amount of money and do it all yourself. It's like building an airplane from scratch, and 5% of the people will be able and willing to help you.

4 hours ago, cnb30 said:

so LDN is no longer NEAR the panacea some people were claiming it was.

I was just comparing the differences and maybe long term safety of the two. I haven't personally taken either one, so its not really a review.

Just got my Mra results back, here is the full report. Obviously I will be pursuing the part that says degenerative disease of central nervous system. Other then that, nothing here. Also there is always the chance this isnt related to accutane, but going forward that will be my main focus when talking with doctors. I'll probably be seeking second opinions at more local universities or possibly mayo. One thing I'd still like to rule out thats still been in my mind is lyme disease. Accutanes modulation of the immune system and making it less responsive to the acne bacteria could possibly make it less responsive to other bacteria it would normally deem a threat. So in the case of lyme the body might not mount a full defense and generate antibodies like it normally would, which could result in false negatives on testing.

Again why are there so few of us? This thread should be lit up with thousands of people with long term sides. what do we have in common? Methylation/detox patterns? Variationsare pretty common in the general population. just the right combination of genes to trigger long term effects? Maybe we can start to look at some other markers to see if accutane is "still working" which so far there has been no indication that it is.

7 hours ago, guitarman01 said:

I was just comparing the differences and maybe long term safety of the two. I haven't personally taken either one, so its not really a review.

Just got my Mra results back, here is the full report. Obviously I will be pursuing the part that says degenerative disease of central nervous system. Other then that, nothing here. Also there is always the chance this isnt related to accutane, but going forward that will be my main focus when talking with doctors. I'll probably be seeking second opinions at more local universities or possibly mayo. One thing I'd still like to rule out thats still been in my mind is lyme disease. Accutanes modulation of the immune system and making it less responsive to the acne bacteria could possibly make it less responsive to other bacteria it would normally deem a threat. So in the case of lyme the body might not mount a full defense and generate antibodies like it normally would, which could result in false negatives on testing.

Again why are there so few of us? This thread should be lit up with thousands of people with long term sides. what do we have in common? Methylation/detox patterns? Variationsare pretty common in the general population. just the right combination of genes to trigger long term effects? Maybe we can start to look at some other markers to see if accutane is "still working" which so far there has been no indication that it is.

Study Result

Impression

1. Normal MRA of the head.

Narrative

PROCEDURE: MR ANGIO HEAD WO IV CONTRAST

CLINICAL HISTORY: Degenerative disease of central nervous system

TECHNIQUE: 3-D time-of-flight MRA of the head was performed without
intravenous contrast.

COMPARISON: MRI head, 3/17/2017

FINDINGS:

Noncontrast 3-D time-of-flight MRA of the head was performed, with MIP
reconstructions of the circle of Willis.

Intracranial segments of both ICAs are patent, and are normal in
caliber. No dissection or stenosis or occlusion identified.

Intracranial segments of bilateral vertebral arteries are patent.
Basilar artery is patent. Caliber is within normal limits. Bilateral
posterior communicating arteries are present. Anterior communicating
artery is seen.

No focal stenosis or occlusion of proximal branches of circle of
Willis noted.

Component Results

There is no component information for this result.

General Information

Resulted:

04/27/2017 10:51 AM

 

Thx for posting.

So my thoughts are, gut health that's out of whack is going to have a big impact on brain and mental health - more so than the other way around.

So who can help us with gut health, which specialist? You'd think gastroenterologist but my experience is unless you've got something sinister going on ie polyps or worse cancer they don't want to help. This is prob why they have these "gut thrive in 5" programs which you undertake yourself - order products online and follow the procedures. Specialists are just too busy to help us restore gut health.

Its crazy to think that many of our problems might disappear by getting our gut bacteria back to healthy but it could be true.

8 hours ago, guitarman01 said:

Again why are there so few of us? This thread should be lit up with thousands of people with long term sides. what do we have in common? Methylation/detox patterns? Variationsare pretty common in the general population. just the right combination of genes to trigger long term effects? Maybe we can start to look at some other markers to see if accutane is "still working" which so far there has been no indication that it is.

 

I think there are tens of thousands of Tane Brains out there. Being here on this forum for 8 years I've talked to hundreds of random people (most stumble on this forum to find out more information on what they suspected, or felt, confirm thoughts, and leave). Some of us who were fortunate (lol) that our symptoms onset was within weeks or months after Accutane, so it was easier to connect the dots. Most people don't get problems until years later down the road (tendonitis, irritable bowel, etc.) and its usually just One or Two things for the lucky ones. It's crazy because the people I personally know who took Accutane in my little circle of 100 or so acquaintances have some sort of issue, but it's usually one thing. One girl had to play soccer with gloves on because after Accutane her hands would turn bright pink. One guy can't drink Alcohol anymore because he has abnormal reactions. One girl had poor digestion for years that eventually led to her IBS, she thinks at least. Those people can move on with their lives. It's us with the handful of side effects and neuro ones that frequent here hoping for some new ideas or strategize some sort of game plan.

Quote

Its crazy to think that many of our problems might disappear by getting our gut bacteria back to healthy but it could be true.

The gut plays a part. But it's not the end all. And I hope everyone is taking the right steps. I know I am. I drink kefir smoothies I make myself almost daily. I have a whole jar of kefir grains that I feed with milk and keep growing. Search youtube for instructions. Fruits + veggie diet. Smoothies with powder I buy from all over the world (Reishi mushroom, goji berry, Ginseng, Acai). And if you still have trouble digesting, then a digestive enzyme like VeganZyme can help. You have the tools to improve your digestive health, what more do you want?

If you want to kill some unconfirmed suspected fungal issue with antibiotics or transplant the fecal matter of a healthy host into you then I cannot support your theory. I just don't know what you expect a doctor to tell you other than change your diet and prescribe you some Creon. If you want some cutting edge new anti-inflammatory medication that alters your immune system more then good luck, but fruits and plants can provide all the anti-inflammatories you'll need. Not all, at least for us, but internally, it helps a lot. Vegan diet can't hurt.

38 minutes ago, macleod said:

I think there are tens of thousands of Tane Brains out there. Being here on this forum for 8 years I've talked to hundreds of random people (most stumble on this forum to find out more information on what they suspected, or felt, confirm thoughts, and leave). Some of us who were fortunate (lol) that our symptoms onset was within weeks or months after Accutane, so it was easier to connect the dots. Most people don't get problems until years later down the road (tendonitis, irritable bowel, etc.) and its usually just One or Two things for the lucky ones. It's crazy because the people I personally know who took Accutane in my little circle of 100 or so acquaintances have some sort of issue, but it's usually one thing. One girl had to play soccer with gloves on because after Accutane her hands would turn bright pink. One guy can't drink Alcohol anymore because he has abnormal reactions. One girl had poor digestion for years that eventually led to her IBS, she thinks at least. Those people can move on with their lives. It's us with the handful of side effects and neuro ones that frequent here hoping for some new ideas or strategize some sort of game plan.

The gut plays a part. But it's not the end all. And I hope everyone is taking the right steps. I know I am. I drink kefir smoothies I make myself almost daily. I have a whole jar of kefir grains that I feed with milk and keep growing. Search youtube for instructions. Fruits + veggie diet. Smoothies with powder I buy from all over the world (Reishi mushroom, goji berry, Ginseng, Acai). And if you still have trouble digesting, then a digestive enzyme like VeganZyme can help. You have the tools to improve your digestive health, what more do you want?

If you want to kill some unconfirmed suspected fungal issue with antibiotics or transplant the fecal matter of a healthy host into you then I cannot support your theory. I just don't know what you expect a doctor to tell you other than change your diet and prescribe you some Creon. If you want some cutting edge new anti-inflammatory medication that alters your immune system more then good luck, but fruits and plants can provide all the anti-inflammatories you'll need.

What more do I want from a specialist?

well for one with that research into acne bacteria in gut being altered by Accutane, as a specialist who you'd think would be at the top of their game, wouldn't it stand to reason that other good bacteria in gut might be altered??
Why do we have learn about this through the forum? My opinion is that specialists/doctors aren't all over this stuff when they should be. I mean if a gastroenterologist isn't all over this stuff who the hell is?

What else could they offer? Well they put me on Rifaximin and Vancomycin, that didn't work so what else can we try? The very fact that he's gone for these over say suggesting I get on the kefir and up the probiotics suggests there's gut conditions that require this sort of medication, so what else is out there??

I just expected more from seeing this specialist, I'm grateful nothing sinister was found with colonoscopy etc and if it wasn't for seeing this guy I'd still be living with horrendous reflux so I'm grateful I'm now on top of that. I'm not the only one with reflux from tane and I totally agree there's a lot we can do for our own gut health but there's also more that the medical community can do to help us to, that's my opinion.

I'm well aware. I have an endoscopy for pancreatitis tomorrow afternoon.

You've probably done all of the tests that they normally do. h.pylori bag test. blood tests. colonoscopy. Do you want more done? like a biopsy? Say you are lacking in healthy gut bacteria, how do you suppose they would get them back in there? I dunno, seems like they'd just prescribe you a reflux med and do periodic checks. Doctors try and maintain homeostasis. It'd be nice if we were full on projects for them, but unless it's dire I don't see them setting up the microscope. I guess keep looking, you'll find a gut doctor that knows his stuff, but you also run the risk of finding one that is enthusiastic about taking part in a controlled study and looking to try new meds on willing patients..,

They're interesting questions you're asking, I don't know how they'd ever know just how healthy ones gut bacteria is other than to put you on something and if you report back feeling better than it's a success i.e poo transplant or in my case those antibiotics I suggested so Ido empathise with specialists in that sense, it's hard to know for sure!

What I would like to know with this methylation issue that some of us are digging around with is, in our case with taking Accutane how did this bring on a methylation issue? Other than if you have that faulty gene did it somehow interfere with gut health, how else would it interfere with methylation processes??

Everything from brain fog to stiff joints, I still think it wreaked havoc on the gut first and foremost, get the gut health right and some of these other ongoing side effects might disappear I reckon.

I mean that research on tane altering the acne bacteria, you don't have to be a scientist to know if it can do that it can also effect other strains of vital bacteria that effects our health!

Gut health is almost certainly a consequence of other issues, most likely impaired methylation being the main one. Look at all the articles on methylation and MTHFR - gut health is impacted, but the practice is to try and optimise gut health in addition to a methylation protocol, not instead of.

@TrueJusticeyou've had every test under the sun - have you had glutathione and SAM tested? I'd be amazed if everyone on here didn't have low levels of both. Would be amazing to get a trial done like the one I posted further up this page, but on accutane sufferers.

On 4/24/2017 at 6:45 PM, macleod said:

Yes, gray hairs are common after Accutane treatment. Started when I was 20, months after accutane, around the time of the other side effects, it was just a couple hairs that I noticed, 8 years later and now its at about 30 or 40 gray colorless pigment hairs. Talk to any doctor about it and they'll just tell you its normal aging going into your 30's.

It's really not that complex, Accutane when it reaches its toxicity threshold in an individuals body probably shuts down the Pituitary gland and ceases GH production abruptly, earlier than say a naturally declining state.

Would be interesting to add into an orthopedic surgery list of questions whether the person/athlete had taken Accutane prior to injury (ligament, tendon, muscle tear) I think we'd all be surprised at the results.

The thing is.. a LOT my hairs have taken on a shine in i see like 30-40 or so greys that have popped up in only 5 months. I may even think some of these may be new growth given their size and place. My hair has an overall very brittle and dry feel to it. 57 days off ISO right now and I am hoping this fades away as the drug leaves my system. Any input on what a possible timeframe may be?

21 hours ago, Quinn3 said:

The thing is.. a LOT my hairs have taken on a shine in i see like 30-40 or so greys that have popped up in only 5 months. I may even think some of these may be new growth given their size and place. My hair has an overall very brittle and dry feel to it. 57 days off ISO right now and I am hoping this fades away as the drug leaves my system. Any input on what a possible timeframe may be?

I feel your situation. What's odd in my case is that the majority of the greys are on the right side of my head, about 25, and only 2-5 on the left side. A bit odd, but worth noting. I don't think its the active drug that's causing them, my uneducated guess is that Accutane halts Growth hormone production and we just age a tiny bit faster from here on out. It was only a couple greys a few years ago now its up there in the 30's. Sorry, wish I had a better prognosis.

Quote

True Justice:
They're interesting questions you're asking, I don't know how they'd ever know just how healthy ones gut bacteria is other than to put you on something and if you report back feeling better than it's a success i.e poo transplant or in my case those antibiotics I suggested so Ido empathise with specialists in that sense, it's hard to know for sure!

What I would like to know with this methylation issue that some of us are digging around with is, in our case with taking Accutane how did this bring on a methylation issue?

So, just got done with the endoscopy. Pancreas is OK, but some slight signs near the ducts indicating the very beginning stages of scarring, but nothing major. AND to confirm your theory, I got a diagnosis of gastritis in the stomach. I have to wait for a biopsy results in 2 weeks to confirm if its bacterial and will require antibiotics. So, you're on the money.

And the myelination issue sometimes does ring true with me as I do have random weird heat burning sensations sometimes in my leg or arm as well as the fatigue and cognitive brain fogs, etc etc.

We are all relatively close to putting this pattern together, the similarities are there.

17 hours ago, TrueJustice said:

So my thoughts are, gut health that's out of whack is going to have a big impact on brain and mental health - more so than the other way around.

There are actually plenty of neurologic disorders that can definitely affect the stomach and digestion. for instance b12 deficiency can cause constipation as a example, this could lead to bloating, acid reflux. If there is muscular weakness on the outside due to accutane(also possibly neurologic), this could be going on inside as well. Say the larynx for example or throat muscles, this could cause a weak voice, throat irritation, further reflux problems that might in turn affect the sinuses. Even looking at other muscles in the jaw, brain or sinuses, muscle weakness here could be triggering headaches or head pressure, a full sinus or ear feeling because the muscles are weak and sort of almost collapsing abit. If i could draw a picture id be looking at the brain muscles just above the temple. This possible weakness could be whats triggering spasms in different parts of the body in some people.

^just a theory. I had a muscle biopsy scheduled once and i cancelled it. Im going to reschedule it. might be another piece of the puzzle.

As far as probiotics, I wouldnt mess with them period maybe. if the liver is already having difficulties post tane,( methylation,fatty liver, lack of bile flow?) adding bacteria good or bad probably isnt a good idea. You can look at real liver diseases as a example some of these people go on antibiotics because the liver is too weak to properly deal with normal processes.

as far as healthy gut bacteria being wiped out by accutane alot of this bacteria should come back. at least thats what a infectious disease doctor told me.

14 hours ago, TrueJustice said:

I mean that research on tane altering the acne bacteria

I dont know if it really altered the bacteria itself. It altered the body's response to it. Like the body ignored it.

actually looking at liver issues and studies people with liver disease are more likely to produce less stomach acid. not suggesting coming off reflux meds though, because ive never heard of a legit doctor treating scarring acid relux with more acid.

10 hours ago, tanedout said:

you've had every test under the sun - have you had glutathione and SAM tested? I'd be amazed if everyone on here didn't have low levels of both. Would be amazing to get a trial done like the one I posted further up this page, but on accutane sufferers.

well we can do our own trial. if you get these tests and they are abnormal, I 100 percent will order the same test, no question.(i might do this regardless) Haven't seen any test for glutathione though. Heres another test to maybe look into
5-Methyltetrahydrofolate
http://www.mayomedicallaboratories.com/test-catalog/Overview/57101

3 hours ago, macleod said:

So, just got done with the endoscopy. Pancreas is OK, but some slight bright whites near the ducts which does indicate the very beginning stages of scarring, but nothing major. AND to confirm your theory, I got a diagnosis of gastritis in the stomach. I have to wait for a biopsy results in 2weeks to confirm if its bacterial and will require antibiotics

every time i had white stuff in my esophagus it ended up being eosinophils and ive been diagnosed with eosinophilic esophagitis twice now after biopsy. not sure if this is similar or if you just got some reflux going on. Id be curious about the gastritis diagnosis and how severe this was, normally this is a indication of something, it shouldnt just happen for no reason. Overproduction of stomach acid can cause this as well as too little stomach acid. Or maybe you do got some infection going on. keep us posted.

6 hours ago, macleod said:

I feel your situation. What's odd in my case is that the majority of the greys are on the right side of my head, about 25, and only 2-5 on the left side. A bit odd, but worth noting. I don't think its the active drug that's causing them, my uneducated guess is that Accutane halts Growth hormone production and we just age a tiny bit faster from here on out. It was only a couple greys a few years ago now its up there in the 30's. Sorry, wish I had a better prognosis.

So, just got done with the endoscopy. Pancreas is OK, but some slight bright whites near the ducts which does indicate the very beginning stages of scarring, but nothing major. AND to confirm your theory, I got a diagnosis of gastritis in the stomach. I have to wait for a biopsy results in 2weeks to confirm if its bacterial and will require antibiotics. So, you're on the money.

And the myelation issues does ring true with me sometimes as I do have random weird heat burning sensations sometimes in my leg or arm as well as the fatigue and cognitive brain fogs, etc etc.

We are all on the money and deal with the same issues. Crazy.

Well my gastroenterologist put me on Rifaximin and Vancomycin which for me didn't do anything - no change to energy or general wellbeing, they may work for someone else though.

The other one's thrown around on forum isMetronizadole and Paromomycin???

Ive yet to investigate these two!!

On 5/1/2017 at 9:49 AM, ehohel said:

Guys, another thing I noticed.... gross I know  but may help further our research...

I used to get tonsil stones ALL the time. I rarely get them anymore and if I do they're super duper tiny in comparison to what they used to be. I really think this has something to do with our immune systems. We need to dig in on this more.. we need more people at least sampling steroids (prednisone/hydrocortisone) because if we all report back feeling better, that is definitely a big sign. 

Hello to everyone

My first message. 

I follow this forum since some months and I™m trying to find a way to heal as you.  Even I, unfortunately, took Accutane when I was young.

I don™t want to bother you with all the many common symptoms due to Accutane that I have.

Various tests have confirmed that I have these problems:

• -          Low Testosterone
• -          Adrenal Fatigue
• -          Few beneficial bacterial flora in the gut

I™ve tried to fix this problem but nothing has worked. I think these are just symptoms and not the main cause.

I follow a strict Paleo Diet.

---------

Recently, I did some test on my cellular and mitochondria.  They have been performed by a laboratory similar to Acumen Lab.

Short summary of the results:

·  Low production of energy in the cellular, low intra cellular magnesium.

·  High heavy metals such as Copper, Nitrosamine, Cadmium and Aflatoxine B

·  Toxic DNA situation.

·  General situation of vitamin and nutrient deficiency - despite all the supplements I take “

·  High level of glutathione

·  Other problems

I did these exams following the advice of a doctor working in a clinic specialized in mitochondrial and in the PK protocol invented by Patricia Kane.

Vitamin A and Retinoids as Mitochondrial Toxicants.

https://www.ncbi.nlm.nih.gov/pubmed/26078802
 

They have never had a patient with Accutane™s problems. But in their opinion, based on exam™s results, I have 90% of chances to heal completely following their protocol.

More informations on the protocol here [Edited link out]
 

     -------

Did you know this protocol? Did you have any experience about that?

Here attached the results from the exams that I did. Hope to help all of you.

Sounds like a good idea. We need more people trying things like Prednisone. If we get a bigger sample of the population of people trying this then we can make a better observation.

Also, I don't know why this thread was designed this way. We should have separate threads of discussion. Needless to say, it would be a lot easier to collect the data we need to get better.

Everyone has different problems and it's all strung together in one thread. I feel very frustrated reading through all this. A real forumshould have separate threads. We need a better forum design.

To be completely honest what I plan to do is set up an appointment with my ENT complaining about my voice loss/weakness... hopefully get prescribed prednisone for the inflammation (if visible). Try it out.. and if I feel better I'm going directly back to my GP who I've complained to heavily about chronic fatigue and tell him that prednisone made me feel EXTREMELY better. I'm not going to mention accutane anymore and I don't think anyone should. Once we find the best way out of this mess should we then blame accutane. But for right now it is only going to make doctor's scratch their heads and deem us as crazy.

54 minutes ago, Riondaz said:

Hello to everyone

 

My first message. 

 

I follow this forum since some months and I™m trying to find a way to heal as you.  Even I, unfortunately, took Accutane when I was young.

 

I don™t want to bother you with all the many common symptoms due to Accutane that I have.

 

Various tests have confirmed that I have these problems:

 

• -          Low Testosterone

   

• -          Adrenal Fatigue

   

• -          Few beneficial bacterial flora in the gut

   

I™ve tried to fix this problem but nothing has worked. I think these are just symptoms and not the main cause.

 

I follow a strict Paleo Diet.

---------
 

 

Recently, I did some test on my cellular and mitochondria.  They have been performed by a laboratory similar to Acumen Lab.

 

 

Short summary of the results:

 

·  Low production of energy in the cellular, low intra cellular magnesium.

 

·  High heavy metals such as Copper, Nitrosamine, Cadmium and Aflatoxine B

 

·  Toxic DNA situation.

 

·  General situation of vitamin and nutrient deficiency - despite all the supplements I take “

 

·  High level of glutathione

 

·  Other problems

-------
 

 

 

I did these exams following the advice of a doctor working in a clinic specialized in mitochondrial and in the PK protocol invented by Patricia Kane.

 

Vitamin A and Retinoids as Mitochondrial Toxicants.

 

https://www.ncbi.nlm.nih.gov/pubmed/26078802
 

 

They have never had a patient with Accutane™s problems. But in their opinion, based on exam™s results, I have 90% of chances to heal completely following their protocol.

 

More informations on the protocol here http://www.neurolipid.org/our-focus/pk-protocol-membrane-stabilizing-therapy/
 

     -------

 

This sounds like it could be very promising! I'm guessing you will go ahead with this protocol based on their recommendations?! 
 

Quote

Our treatment protocol includes an oral targeted lipid therapy (targeted phospholipid based dietary therapy) and in some cases an intravenous infusion of phenylbutyrate, phosphatidylcholine, leucovorin, and glutathione to clear bioaccumulation of toxins impacting gene expression and stabilize cellular architecture. We have documented significant clinical neurological improvement in our patients, including cessation of seizures, along with marked normalization of cellular function (via laboratory analysis) following six months of an oral and intravenous lipid regime.

Thanks for posting Riondaz!!

How did you find out about all this testing? Did your GP help you find this specialist testing?

As you might of read on forum, too many doctors are fucking clueless and ignorant in how to help out Roaccutane victims, sounds like you got some good help - well done!

It looks very promising!

2 hours ago, Nicholas Ross said:

Also, I don't know why this thread was designed this way. We should have separate threads of discussion. Needless to say, it would be a lot easier to collect the data we need to get better.

Everyone has different problems and it's all strung together in one thread. I feel very frustrated reading through all this. A real forumshould have separate threads. We need a better forum design.

The guy that posted all his blood work and that is halfway across the country is a prime example of what ive been saying everytime this comes up. You never know whos going to pop on here that might have some insights or testing that might lead to a breakthrough. Subdividing a forum might just make this more confusing where to post this information and where its going to be seen by the most amount of people.

The main takeaway unfortunately is no one has been able to pin any of their side effects yet to accutane, clinically, medically or legally speaking.
Dubya has created a separate forum if you want to check it out.
If anyone has the time and organizational skills to create a another forum feel free. But then who goes where?
People from years and years ago still pop on to this very forum to see if any progress/new insights has been made. I cant think of a bigger one on the internet.

I do understand organizing things like blood tests or other tests,dosage,duration,age and side effects per member to be able to access quickly, this helps greatly to continue to make the connections, and try to find something, anything. Some of us have too much in common, I hope we'll hit on something soon.

2 hours ago, Riondaz said:

Recently, I did some test on my cellular and mitochondria. They have been performed by a laboratory similar to Acumen Lab.

Im definitely not familiar with all these tests and their legitimacy, but a few key words that really pop out at me are
SOD1, metallothionein, atox1 all having to do with abnormal metal trafficking and binding.
Definitely some interesting stuff here, thanks for posting.