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Jarred Younger lab Feb 2016 Newsletter - live Q&A March 3rd

Sasha

Fine, thank you
Messages
17,863
Location
UK
From an email to newsletter subscribers:

Jarred Younger said:
Dear all, It has been a while since I last posted an update from the lab. We have been very busy this year. We’ve added eight new lab members: a graduate student, a full time research coordinator, four undergraduates, and two nursing students.

You can see some of the new faces in the lab picture above. I couldn’t get everyone together at the same time, but most of the team was there. We have an excellent group of researchers and trainees for 2016!

Our ongoing projects are going well. We are currently in the middle of our third group of daily blood draw participants. We’ve had difficulties with the traffic around Birmingham, but Kate, the team, and the participants have been incredible in their dedication to the project. I thank everyone involved and I’m very excited to see what results we get from the study.

We are also making good progress on our brain scan studies. We have a new scan that shows us brain temperature, and higher brain temperature indicates neuroinflammation. We have run a few individuals and are already seeing higher brain temperatures in people with pain and fatigue.

This scan may help with treatment development. We have ambitious plans for 2016. We will be adding several new clinical trials, and you will hear about those soon. There isn’t room to list everything, but here are a few of the things starting this year:

● A clinical trial of low dose naltrexone for chronic fatigue syndrome (ME/CFS).

● Online, live question and answer sessions. The first one will be held on March 2nd at 3pm Central Time. You can submit your questions in advance, or during the sessions. More info coming soon.

● A series of online videos where I explain our projects, and give new information on pain, fatigue and neuroinflammation.

● Two new studies for individuals with Gulf War Illness. One study involves daily blood draws, and one study is a clinical trial testing botanicals and herbal supplements that can decrease neuroinflammation.

● I am co-directing a large pain conference at UAB on October 14th and 15th of this year. All the major researchers and clinicians in the region should be there, and registration will be open to the community. The focus of the conference will be on pain, but there will be interesting information for people with ME/CFS and neuroinflammatory conditions.

I have two major goals for this year. The first is to conduct several high-impact research studies that will give us important information about the diagnosis and treatment of neuroinflammatory conditions. The second goal is to spend as much time as possible getting information out to the community, so you can see what were are doing in the lab.

My longer-term goal is to develop a “fast-track” clinical trial center for pain, fatigue and neuroinflammation that will test new treatments much faster than through the conventional routes. This center would give many of you access to the newest possible treatments.

I will talk about the center in a later update. There is much more to talk about, but I’ve run out of room. Keep an eye on email and facebook for more news soon!

Sincerely,
Jarred Younger
Director: Neuroinflammation, Pain and Fatigue Laboratory
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just received a correction:

Younger said:
The Q&A session will be held on March 3rd, 3pm central time. The attached
newsletter has the corrected date. We look forward to hearing your questions.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Yeah. I know 7 or 8 patients who've all tried it and none benefited.

I have heard second hand that it is helpful for fibro pain though.

I didn't benefit either but I think that some people here on the forum have done so. I think it needs a trial, and one with good measurements of biochemistry to identify probable responders.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Yeah. I know 7 or 8 patients who've all tried it and none benefited.

I have heard second hand that it is helpful for fibro pain though.

Yea pain benefit seems to be the only reasonably consistent response reported
 

viggster

Senior Member
Messages
464
Yep, LDN definitely helps my pain, but it took a month or so to work. I know it's working because when I go off it, after 2-3 days really bad leg pain returns.
 

Justin30

Senior Member
Messages
1,065
I like the idea of neuroinflamation and figure this is huge component to the overall dysfunction:

I would like to see experiments with drugs that work on issues on the CNS,SNS and ANS that are directly correlated to neuroinflamtion. Ie does neuroinflamtion cause Dyautonomia, blured vision and disturbances of vision, twitching of muscles, muscle wasting, numness and circulatory issues, etc.

I like the neuroinflamtion hypothesis but would like it to expand on more than just pain....and what we call "Fatigue" how about reffering to it as Post Exertional Neuro Immune Malise....I dont like everyone calling this fatigue...FATIGUE...it goes far beyond fatigue for the vast majority of peole with ME/CFS.

The reason we are not seeing great results out is that patient screening using strict criteria CCC and ruling out and treating coinfections and comorbidities. And LDN on its own only hits one part of the multisystem disease MECFS is. This is why we desperately need more funds rwsearch and training to get experts to issue staged PROTOCOLS.

I met a guy that was bedbound for 6 plus months out of bed using LDN and Oxymatrine. He could literally walk through the hospital without a wheelchair i was in awe....i was so messed up at the time though...i we didnt have long to talk.
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
I have been helped by LDN. Been on it over 6 years now. It stuffed aroundith my sleep but it didn't matter because at the time sleep didn't help jot. Do't give up on it if it effects sleep -that means its working!
What it did for me was enable me to feel more resilient to stress, especially in the morning. Prior to it, I had to move very slowly and was never awake before 10 am. The was no chance of me beoing able o make appointments inth mornings. That was my pattern for years - 15 years. I'd hv maybe 3 good hours 11-3, then up again in the evening. LDN changed all that. I actually have morning now. I still have crashes and relapses but LDN and voltatern are the only things to have moved the illness in any way for me.
A gp locally gives people an injection of naloxone and if the injection helps he uses that as an indicator as to whether tabs will help them.
I buy from Canada and mix 50mg tab in 50ml water, and draw up 4.5 mg into a syringe to take it. Take it about 9pm.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I have been helped by LDN. Been on it over 6 years now. It stuffed aroundith my sleep but it didn't matter because at the time sleep didn't help jot. Do't give up on it if it effects sleep -that means its working!

I buy from Canada and mix 50mg tab in 50ml water, and draw up 4.5 mg into a syringe to take it. Take it about 9pm.

I should consider this. It would cost me $150 dollars to get LDN, that would last me 3 months. But think making it would be much cheaper! Have a website you order from?

GG
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
I should consider this. It would cost me $150 dollars to get LDN, that would last me 3 months. But think making it would be much cheaper! Have a website you order from?

GG
Hi there,
I order naloxone from River Pharmacy in Canada. When it arrives is been shipped from india, Sometimes customs here in NZ open it and require that my GP signs a form that its kosher. Our com[pounding pharmacist is such a rip off. Charges about 1$ a capsule. Its about 30c if you draw up 4.5 mg into a syringe. Someone has done a utube clip onhow to make LDN. I don't even use distilled water anymore
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
the other thing ive personslly found that helps is diclofenac 75mg slow release. Yiu'd know in 3 days of trying it. HElps my pain a lot. I'm still up and sown like a yoyo but the pain is tonnes better. Can't gt anyone to listen - no surprises there. Just had an email from a friend tonight saying he's been helped by another slow release nsaid and did I know of anything else he could try. Maybe I'm not wrong....
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Hi there,
I order naloxone from River Pharmacy in Canada. When it arrives is been shipped from india, Sometimes customs here in NZ open it and require that my GP signs a form that its kosher. Our com[pounding pharmacist is such a rip off. Charges about 1$ a capsule. Its about 30c if you draw up 4.5 mg into a syringe. Someone has done a utube clip onhow to make LDN. I don't even use distilled water anymore

Thanks, I know how to make it. Former Chemist here, so no problem there, well versed in all that. Did you set up an account or just order from the site?

Tried getting to their Facebook page as well, but that wouldn't load, wonder if I need to have an account to see what they post?

GG

Edit: So it would appear that Naltima or Nodict is ok to order? I would lean towards Naltima, thinking Nodict might be changed to make it harder to compound?

Edit: I was wrong, looks like Nodict is the version I want to order. So is there a cheaper source for this? Looking at geting 60-50mg tablets for $177, no charge for shipping. Would be 3.54 per tablet.
 
Last edited:

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Thanks, I know how to make it. Former Chemist here, so no problem there, well versed in all that. Did you set up an account or just order from the site?

Tried getting to their Facebook page as well, but that wouldn't load, wonder if I need to have an account to see what they post?

GG

Edit: So it would appear that Naltima or Nodict is ok to order? I would lean towards Naltima, thinking Nodict might be changed to make it harder to compound?

Edit: I was wrong, looks like Nodict is the version I want to order. So is there a cheaper source for this? Looking at geting 60-50mg tablets for $177, no charge for shipping. Would be 3.54 per tablet.


Hi there, Nodict is the one I ordered. Sorry I was quoting NZ prices - duh.
Your price would be 3.54 per tablet, that provides you with 50mg tabs (50mg dissolved in 50 ml), so you have 4.5ml to draw up per dose (so over 10 doses per tab) , so 0.354$ US per dose.
Hope that makes sense and clarifies?