Is Your Brain on Fire? the Younger Video Series

[Victor Maalouf]

Ok, ok. So it's not entirely a joke. Finding what supplements or even drugs can actually be helpful is of course... helpful. Yes, diet does matter for recovery. But you can't rely on these things. And they're not going to get to the root cause.

Rant over... I need to get something done.

 

[IslandGirl]

I took six of these on a regular basis for one year: curcumin, resveratrol, reishi, luteolin, pycnogenol and boswelia. Today, I only take curcumin. It does help ... until it doesn't.

Then I have to lay off it for a week or few before starting back up. It was most effective for me at 8g/day, 2g/4xday. However, consistent effectiveness only lasted a few months. It has never been consistently effective since then. I tried numerous brands including a curcuminoid oil. The oil was effective, but hurt my stomach. Of the dozen others I tried, one brand, Physician Naturals was far and away the best.

I tried the five other supplements alone and in various combinations over a six to eight week period before taking them all in combo for one year, but found them of no benefit. No supplement has produced enough positive effect to allow me to go off my meds. All in all, it was a significant expense for naught. Except the curcumin. I chose those supplements and others I took for their purported anti-inflammatory and/or energy production properties.

Today I take high quality multi-vitamins, magnesium, ATP, ubiquinol, curcumin, B12 and my prescription meds including LDN. From the start and to this day, the most effective medication I take for brain inflammation is clarithromycin, which has powerful anti-inflammatory properties that aren't well understood.

Curcumin runs a distant second, but still better than anything else I've tried. The LDN is doing something, it's helped with the brain fog and pain, but I've only been on it three plus months, upping my dosage by 1mg when I feel the benefits beginning to fade.

I wish there were a simple answer, such as a supplement, but i sincerely doubt there is.[/
.

I took six of these on a regular basis for one year: curcumin, resveratrol, reishi, luteolin, pycnogenol and boswelia. Today, I only take curcumin. It does help ... until it doesn't.

Then I have to lay off it for a week or few before starting back up. It was most effective for me at 8g/day, 2g/4xday. However, consistent effectiveness only lasted a few months. It has never been consistently effective since then. I tried numerous brands including a curcuminoid oil. The oil was effective, but hurt my stomach. Of the dozen others I tried, one brand, Physician Naturals was far and away the best.

I tried the five other supplements alone and in various combinations over a six to eight week period before taking them all in combo for one year, but found them of no benefit. No supplement has produced enough positive effect to allow me to go off my meds. All in all, it was a significant expense for naught. Except the curcumin. I chose those supplements and others I took for their purported anti-inflammatory and/or energy production properties.

Today I take high quality multi-vitamins, magnesium, ATP, ubiquinol, curcumin, B12 and my prescription meds including LDN. From the start and to this day, the most effective medication I take for brain inflammation is clarithromycin, which has powerful anti-inflammatory properties that aren't well understood.

Curcumin runs a distant second, but still better than anything else I've tried. The LDN is doing something, it's helped with the brain fog and pain, but I've only been on it three plus months, upping my dosage by 1mg when I feel the benefits beginning to fade.

I wish there were a simple answer, such as a supplement, but i sincerely doubt there is.

I'm interested in your comments about LDN. I've been diagnosed with FMS officially since 2007, had symptoms for years before. Waking up every hour or two even prior to 2007. In 2012, I crashed, had 2 sleep studies, ruled out apnea, documented other issues which result in me not being able to get down to restorative sleep levels. Nothing has helped with that, due to the pain. In 2013, I had 2 CPET's at Workwell documenting severe PEM. Tried many different drug combinations. Last June I started LDN at 2 mg, upped to 3.5 mg in September, was not expecting much. My sleep doctor had also made me realize haven't remembered any dreams for years and years. About the only side effect talked about with LDN is excessive dreaming which usually only lasts a week or so. Still no dreams and I didn't think I noticed much change and debated going off it, but decided to up dosage to 5 mg last December. Immediately I was still waking many times all night, but I was dreaming. Would fall to sleep sooner, still wake up multiple times, was remembering my dreams, would wake from one dream, then go back to sleep and the dream would continue. Weird and continues to this day. I'll take that as I stay in bed for 9, 10 or 11 hours per normal night, but still wake unrefreshed and still have a night or two here or there where I can't stay in bed...related to pain.

I feel the LDN is working for the FMS pain, but not pain from comorbid conditions, nor the cognitive, comprehensive or memory which seems to be there every day, just varies as to what I do and to what extent. Sigh! In addition, I also take 2 Advil PM at night with Flexeril and/or Valium with the LDN every night. I have a little more energy during most days, but must limit myself, pace, and lay down each afternoon for at least a couple hours even though I rarely sleep. (Pre 2012, I was napping and could not stay awake, would fall to sleep sitting on the toilet at work, haha. Haven't been able to work since 2012. Have also been diagnosed with CFS.

 

[Cort]

Ok, ok. So it's not entirely a joke. Finding what supplements or even drugs can actually be helpful is of course... helpful. Yes, diet does matter for recovery. But you can't rely on these things. And they're not going to get to the root cause.

Rant over... I need to get something done.

Thanks for taking back the proposition that one of our leading researchers is a joke!

 

[Issie]

I'm interested in your comments about LDN. I've been diagnosed with FMS officially since 2007, had symptoms for years before. Waking up every hour or two even prior to 2007. In 2012, I crashed, had 2 sleep studies, ruled out apnea, documented other issues which result in me not being able to get down to restorative sleep levels. Nothing has helped with that, due to the pain. In 2013, I had 2 CPET's at Workwell documenting severe PEM. Tried many different drug combinations. Last June I started LDN at 2 mg, upped to 3.5 mg in September, was not expecting much. My sleep doctor had also made me realize haven't remembered any dreams for years and years. About the only side effect talked about with LDN is excessive dreaming which usually only lasts a week or so. Still no dreams and I didn't think I noticed much change and debated going off it, but decided to up dosage to 5 mg last December. Immediately I was still waking many times all night, but I was dreaming. Would fall to sleep sooner, still wake up multiple times, was remembering my dreams, would wake from one dream, then go back to sleep and the dream would continue. Weird and continues to this day. I'll take that as I stay in bed for 9, 10 or 11 hours per normal night, but still wake unrefreshed and still have a night or two here or there where I can't stay in bed...related to pain.

I feel the LDN is working for the FMS pain, but not pain from comorbid conditions, nor the cognitive, comprehensive or memory which seems to be there every day, just varies as to what I do and to what extent. Sigh! In addition, I also take 2 Advil PM at night with Flexeril and/or Valium with the LDN every night. I have a little more energy during most days, but must limit myself, pace, and lay down each afternoon for at least a couple hours even though I rarely sleep. (Pre 2012, I was napping and could not stay awake, would fall to sleep sitting on the toilet at work, haha. Haven't been able to work since 2012. Have also been diagnosed with CFS.

Look into pyrolori. (Threads on this forum.http://www.healthrising.org/forums/threads/herbal-combo.3701/page-2#post-13074 And here - http://www.primalbody-primalmind.com/do-you-have-pyroluria/) may need B 6, zinc and carrier oil - they suggest EPO. Seems too high copper can can cause issues with sleep and CNS issues. Also B6 (P5P) helps with dream recall. That along with addressing methylation is helping me. Finding R5P and P5P to be helpful. If pain won't release, have to take a Tramadol. But have found turmeric and malic acid to be helpful. Also, avoiding all grains. Figured out nightshades do add to pain. The liver detoxing takes place at night. Sometimes it can cause issues with sleep. Make sure to maintain liver health. Detoxing along with juice fasting (with fiber of veg and fruits) proved to be helpful for me. Made me super aware of my reactions - both to food and environmental. Very enlightening.

Issie

 

[Awfultruth]

[QUOTE=" greatly improve their symptoms by avoiding triggering things like foods (gluten, dairy, and sugar for example) or environmental things like strongly scented or chemically products or environmental things like toxic molds.[/QUOTE]

Hey JWest I totally agree. As a person with extreme food sensitivities and multiple chemical sensitivities and other more exotic over reactions such as just touching the wrong object, I have often wondered if some people with ME/CFS might perhaps have unrecognized chronic reactions to things contributing significantly to their fatigue. I have fatigue issues which can be quite strong if I react too often. Say one reaction is exhausting but 2 or 3 reactions within 2-3 days leaves me totally drained. I don't label myself as ME/CFS (I don't have PEM) but the fatigue and other consequences can be extreme. And I do not have any triggers that are both strong and constantly occurring. For instance I don't live in a house with mold or with new carpet. And I have foods I can eat that I don't react to. If I did not have ways to avoid the reactions or perhaps more to the point if I was not recognizing that I was reacting to these things - well I imagine I I could easily have fatigue as severe as a "true" ME/CFS diagnosed individual.
And how would any supplement (or drug) ever overcome all that whether it was helpful or not?

 

[Brenda Flippen]

"In order to successfully treat fibromyalgia we are going to have to drastically change our approach to this disorder" Jarred Younger​

In 2015 Jarred Younger gave a presentation arguing that FM treatments mostly have it all wrong. FM is not, he rather boldly stated, about dopamine, serotonin or norepinephrine. Nor is about hyperactivated nerves. It's not about any of the pathways that that the approved drugs for FM effect. It's about neuroinflammation.

That neuroinflammation can be produced in several ways. In the Self-Hacked interview Younger proposed two ways it's produced in ME/CFS: by low level infections that are still present, and by infections that were defeated but sensitized the nervous system in the process:



In order to get at FM we're going to have to develop treatments that can get to the microglia in the brain and turn them off. Younger, though, is thinking much bigger than FM. The same processes, he believes, are occurring in many other diseases including chronic fatigue syndrome, multiple sclerosis, Alzheimer's, depression, IBS rheumatoid arthritis, autism and traumatic brain injury...

[fright]

[/fright]Develop an effective treatment for fibromyalgia and Younger declared you'll have an effective treatment for ME/CFS, IBS, GWS and a lot of other "multisymptom illnesses" as well as adjunctive or add-on treatments for disease like arthritis, RA and MS. All these diseases he believes are driven by inflammatory processes in the brain in some cases and in the body and brain in others.

(The huge array of symptoms that can be produced in ME/CFS, FM, GWS and other diseases has dogged advocates efforts at legitimacy. Researchers simply have not understood how to explain them other than in psychosomatic or psychological terms but Younger believes that microglial activation can cause all of that. In fact he believes that the presence of many unexplainable symptoms is a sign that microglial activation may be present.

The implications of this treatment approach, are, of course huge and the field is wide open.

Younger emphasized that all of the potential treatments for the microglia he was going to talk about were experimental and then the video cut off...but next up we have a video of Younger talking about specific treatments he'd been funded to explore in Gulf War Syndrome.

Court, I may have missed some post, no definatly, missed post. Do you think Jared Younger is on the right road with this study. I live about 2 1/2 hrs. from the clinic in B'ham and am interested in his study of ME/CFS and FMS. I am so tired of being sick and tired and would be interested in your opinion. I do not feel I have the energy to do this,but I feel like I have,to try. I would be interested in your feed back since we have had so many wrong turns in getting to the base of these problems already. I sure don't want to be part of" just another bad study". Thatnks Brenda

 

[Seasprit]

Treatments

In an earlier video Younger talked about the Fast Track Clinical Trials center he hopes to open up later this year. This study, which features nine treatments being assessed at once - something he called unheard of in the medical world - appears to be a trial run for that endeavor. Younger, in fact, wants to take this study design and apply it to chronic fatigue syndrome and fibromyalgia as soon as possible.

This study is on Gulf War Syndrome (GWS). Younger believes the immune systems of Gulf War vets were hit in so many different ways - by vaccinations and an extraordinary array of toxins including the oil fires - that they became sensitized and ready to go off at the slightest provocation. They're still stuck 25 years later.

There are no drugs for GWS and Younger and he didn't want to wait ten years to go through animal studies and then human trials. He wanted to get some answers as soon as possible - and this is how he proposes to do that.

[fright]

[/fright]

Younger has identified dozens of potential microglial treatments but he wanted something that could help now. He went through dozens of herbal and botanical options and picked nine which research studies suggested could calm down the microglia and which were available for use. All have anti-inflammatory and neuroprotective effects; they include

• Curcumin - long time anti-inflammatory derived from tumeric
• Resveratol - recently successful in an FM mouse study
• Reishi mushrooms - neuroprotective
• Epimedium - old time botanical
• Stinging nettle
• Luteolin - used by Theorharides as well
• Pycnogenol -
• Boswellia (frankincense) - old time anti-iniflammatory
• Fisetin - anti-inflammatory from strawberries

It's a nine-month study. Each participant will try at least three of these supplements and will track their symptoms on a smartphone. Check out the clinic - see our Resource page - for more.

See the Jarred Younger Neuroinflammation, Pain and Fatigue Lab ME/CFS and FM Resource page on Health Rising for more on Younger's work.

Anyone have info on the protacol dosages? Just watched the video and hope Mr. Younger shares the dosages for those who want to try this. He made a statement that you need a concentrated dosage that is not available from simply eating the related food. I am already using some of these but may not be taking an effective quanity.

 

[Sarah R.]

I've read that curcumin (or turmeric) is poorly absorbed by humans unless it is micronized (particles made smaller) or is added to piperine (a type of pepper). This coincides with my own experience taking curcumin. I don't know what causes my foot and leg cramps, but it's been a problem since I've been ill (about 11 years now). I'm wondering if it's inflammation of my blood vessels.... I discovered when having these cramps that if I washed down a tablespoon full of mustard with water, within about 10 minutes, the cramps would abate. Since I don't like mustard, I started taking a curcumin supplement, but I didn't get relief from that. Then I read about absorption problems. (Apparently most of curcurmin or turmeric taken orally gets processed out of our systems in the gut and not much of it reaches the blood.) Here's an NIH Library article that discusses this: http://www.ncbi.nlm.nih.gov/pubmed/25994138

For about a year I've been taking Theracurmin-Pro 600, one a day in the afternoons, and most of the time I don't have foot and leg cramps. If I feel one coming on, I take an additional capsule, and that takes care of it relatively quickly.

I can't say whether this stuff helps my brain, but I'm convinced it helps with circulatory problems. And many studies on PubMed.gov show other benefits as well.

Thanks to Dr. Younger for doing this important work. And thanks to you, Cort, for your usual great reporting.

 

[temple88]

Court, I may have missed some post, no definatly, missed post. Do you think Jared Younger is on the right road with this study. I live about 2 1/2 hrs. from the clinic in B'ham and am interested in his study of ME/CFS and FMS. I am so tired of being sick and tired and would be interested in your opinion. I do not feel I have the energy to do this,but I feel like I have,to try. I would be interested in your feed back since we have had so many wrong turns in getting to the base of these problems already. I sure don't want to be part of" just another bad study". Thatnks Brenda

Hey Brenda,

I have been in two studies with Dr. Younger and his staff are very professional and courteous. The studies were good experiences for me. I work in research myself at UAB and could probably spot a "bad study" from a mile away but that is not the case with Dr. Younger's work. Will his research lead to the answers? No idea. If we knew, we wouldn't need research. Even if his hypotheses turn out to be wrong though, it isn't a loss. The more that is ruled out as the cause of ME/CFS and fibro, the more we can turn our focus and research to other areas and hypotheses.

There are several studies being done at Younger's lab and more on the horizon. Some of the studies are easier as far as frequency of visits so you should be able to find a study that fits your level of functioning.

I hope this helps!

 

[temple88]

Today I take high quality multi-vitamins, magnesium, ATP, ubiquinol, curcumin, B12 and my prescription meds including LDN. From the start and to this day, the most effective medication I take for brain inflammation is clarithromycin, which has powerful anti-inflammatory properties that aren't well understood.

This really resonates with me. The one and only thing that has ever taken away every single symptom I have is Clarithromycin. It is dose dependent at the full 1,000mg dose but if I take it for a few days- it's like I was never ill and I'm completely back to normal for 5-7 days. Of note, Azithromycin never had this effect at any dose. I wish I could take high doses of Clarithromycin every day for always but I can't. My gut can't handle it.

Interestingly, low dose naltrexone and pine bark extract both made me much, much worse. Horrible crash. Neuroprotek is currently giving me some surprising benefits though.

Sorry for two posts in a row

 

[Who Me?]

@temple88 I was seriously considering neuroprotek but just got quercetin and rutin and am taking those alone. I have some luteolin too but don't know how much that helps. I do notice huge benefits with quercetin.

BTW. I found to places to get it with free shipping. Autism sites. If you want the link let me know I'll dig them out.

 

[Cort]

Hey Brenda,

I have been in two studies with Dr. Younger and his staff are very professional and courteous. The studies were good experiences for me. I work in research myself at UAB and could probably spot a "bad study" from a mile away but that is not the case with Dr. Younger's work. Will his research lead to the answers? No idea. If we knew, we wouldn't need research. Even if his hypotheses turn out to be wrong though, it isn't a loss. The more that is ruled out as the cause of ME/CFS and fibro, the more we can turn our focus and research to other areas and hypotheses.

There are several studies being done at Younger's lab and more on the horizon. Some of the studies are easier as far as frequency of visits so you should be able to find a study that fits your level of functioning.

I hope this helps!

Glad you were able to get in there Temple - and thanks for passing your experience on.

 

[Cort]

This really resonates with me. The one and only thing that has ever taken away every single symptom I have is Clarithromycin. It is dose dependent at the full 1,000mg dose but if I take it for a few days- it's like I was never ill and I'm completely back to normal for 5-7 days. Of note, Azithromycin never had this effect at any dose. I wish I could take high doses of Clarithromycin every day for always but I can't. My gut can't handle it.

Interestingly, low dose naltrexone and pine bark extract both made me much, much worse. Horrible crash. Neuroprotek is currently giving me some surprising benefits though.

Sorry for two posts in a row

"We found that both clarithromycin and dexamethasone up-regulated the production of anti-inflammatory mediators (Clara cell 10-kDa protein and interleukin (IL)-10), whereas down-regulated the production of Th2 response and eosinophilia promoting molecules (thymic stromal lymphopoietin, IL-25, IL-33, CD80, CD86, OX40 ligand, programmed cell death ligand 1, CCL17, CCL22, CCL11, CCL5, IL-5, IL-13, and eosinophilic cationic protein) and Th1 response and neutrophilia promoting molecules (CXCL8, CXCL5, CXCL10, CXCL9, interferon-γ, and IL-12), from sinonasal mucosa from distinct phenotypic CRS."

Some antibiotics have microglial inhibiting properties. I wonder if Clarithromycin is in that category?

 

[temple88]

@Who Me? I'll look around for it, thanks! Let us know how the new supplements work out. Neuroprotek is pricey!

@Cort Very interesting. If only I could harness the effective properties of Clarithromycin without destroying my gut in the process. Long term steroids aren't a road I want to go down either. Odd how they have an effect on microglia yet LDN causes me to crash. And the mystery continues...

 

[Who Me?]

@temple88 Ive been taking the ingredients and feeling ok but maybe a month on it will Kickstart something

Here's the links

http://www.ourkidsasd.com/products/?s=NEUROPROTEK&x=13&y=20

http://www.spectrum-supplements.com/neuroprotek-60-softgels.html

 

[temple88]

@Who Me? Thanks! I noticed a kick from the Neuroprotek by day 2. Better energy (not the jittery kind), clearer thinking, better focus, and I've been better able to find words when I'm talking. Nothing has changed though regarding exertion intolerance.

Wondering if I should add more quercetin.

 

[Who Me?]

@temple88 i noticed that from rutin but really noticed it when I added the quercetin.

@Veet said neuroprotek really helped her to start, then she was just using quercetin I think.

She also used mangosteen which is on my list.

I was planning on using 2 a day. How many are you taking? I know it sayd 1 for every 44 lbs.

I'm having some subtle results with PEM from LDI but I noticed today in just walk across the room and in huffing and puffing. But I also think I have lung inflammation. Why I want to try the neuroprotek.

And I would like some of my brain fog cleared up

 

[temple88]

I'm up to 3 a day. One at breakfast, one at lunch, and one with an early evening dinner. I can't take it after about 6pm or it will interfere with sleep. I tried taking an extra one last week but didn't really notice a bigger benefit from it so I'll keep to 2-3/day.

I also huff and puff when I walk and my muscles give out. I would really love something (besides an antibiotic) that will make that go away!

I think I will order additional quercetin. Is there a brand you recommend @Who Me? These supplements are notoriously difficult to absorb.

Side note- I did notice a benefit from Curcumin in the past but after a few days my acid reflux was horrendous!

 

[Who Me?]

I was just gonna stick to two and see. Oh I read in some austism forums that I think the rutin can cause and excitory response so maybe that's what you're feeling. I'll see if I can find it.

I've just been using some basic quercetin and I so notice a difference but @Remy might know a specific one.

I am getting fermented curcumin or is it tumeric from Swanson. I usually don't have reflux so we shall see.

I started with each component of neuroprotek separately to see if I could tolerate it so I'm hoping I'll be ok

I'm like you with the walking. And the muscles. I sit to wash my dishes and use a can if I go farther than around my house

 

[Remy]

Is there a brand you recommend @Who Me? These supplements are notoriously difficult to absorb.

This is the one I use, from Thorne.

https://www.thorne.com/products/exclusive/dp/quercetin-phytosome