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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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OH GOODY !!!! …. ANOTHER POSSIBLE TREATMENT FOR LONG COVID …. AND STILL NONE FOR M.E. …. SHOULD WE (YAWN) BE EXCITED?? …. HMMMM. POSSIBLY ……

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We must accept finite disappointment,
but never lose infinite hope — Martin Luther King, Jr
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We’ve lived thru the exuberant hope that with the advent of Long Covid, treatments for both it and, by extension, M.E. couldn’t be far behind, given the global reach and grasp of Long Covid, and the numbers and diversity of the people affected …. surely something good could come out of that for our community, no?


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Well, in a word, no. At least, not so far .....


After that buoyant moment of happy hope and misty dreams, there followed what I’d sadly predicted would probably come …. the medical community started down the well-trod and all too-familiar to so many of us path of “ …..all in their heads …..", “ …..psychological reaction …..”, “ ….unreliable anecdotal evidence …”, yadda yadda yadda, blah blah blah.


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So it was a pleasant surprize to come across this redacted report on a study that seems to have produced beneficial effects for an, admittedly, small group of patients, but results nonetheless, and something’s better than what we’ve been given so far, and more substantial ….


Here it is, see what you think, and by all means, please do send all complaints to …

COMPLAINTS ABOUT WHATEVER
OPEN 24 HOURS

PO Box H1-55Y,
Whining River Falls,
Northwest Territories,
Canada


Potential New Treatment for “Brain Fog” in Long COVID Patients
https://neurosciencenews.com/covid-brain-fog-treatment-22099/


“Guanfacine, developed in the lab of Amy Arnsten, PhD, Albert E. Kent
Professor of Neuroscience and professor of psychology, was approved
by the Food and Drug Administration (FDA) for the treatment of ADHD
in 2009, but clinicians have also used it extensively off-label for other
prefrontal cortical disorders such as traumatic brain injury (TBI) and PTSD.


Now, Arnsten has joined forces with Arman Fesharaki-Zadeh, MD, PhD,
assistant professor of psychiatry and of neurology, who has been treating
long COVID patients with a combination of guanfacine and N-acetylcysteine

(NAC), an anti-oxidant also used for the treatment of TBI.”

Comments

You’re right. A big nothing burger.
Im not entirely sure yet. Some members here had some results from NAC, and some found it to be ... yeah. Nothing. Who knows

Maybe someone here can take the article to their Dr, who can get the information from the article's Drs on dosing, issue a prescription for guanfasine, and get back to us.

Then again maybe not.

Everything about this tedious little rot-pile of an illness is a " .... maybe yes, maybe no, probably no, who knows ...." sort of proposition. It's very tiresome ....


Sorry. Preaching to the choir, I'm guessing ....
 
Im not entirely sure yet. Some members here had some results from NAC, and some found it to be ... yeah. Nothing. Who knows

Maybe someone here can take the article to their Dr, who can get the information from the article's Drs on dosing, issue a prescription for guanfasine, and get back to us.

Then again maybe not.

Everything about this tedious little rot-pile of an illness is a " .... maybe yes, maybe no, probably no, who knows ...." sort of proposition. It's very tiresome ....

Sorry. Preaching to the choir, I'm guessing ....
Ugh. It’s true. I actually agree with you.
Btw, I took Guanfacine on its own, prescribed by Dr. David Kaufman. Alas, no benefit to me.
 
Btw, I took Guanfacine on its own, prescribed by Dr. David Kaufman. Alas, no benefit to me.
The benefits the study claims to hvae achieved came from the combo of guanfacine AND NAC .... maybe your Dr will give it another go with you? At least you'd now with dead certainty that, in your case, it's total crepe ....

I'm not in my happy place this morning, wherever the fluck that is anymore, so I'm grumpy .... and Sleepy, Sneezy, Pissed-Off, and Go-To-Hell. The last two are some of the dwarves you dont get to meet in the Disney version ..... :wide-eyed::wide-eyed::wide-eyed: :meh::meh:
 
The benefits the study claims to hvae achieved came from the combo of guanfacine AND NAC .... maybe your Dr will give it another go with you? At least you'd now with dead certainty that, in your case, it's total crepe ....

I'm not in my happy place this morning, wherever the fluck that is anymore, so I'm grumpy .... and Sleepy, Sneezy, Pissed-Off, and Go-To-Hell. The last two are some of the dwarves you dont get to meet in the Disney version ..... :wide-eyed::wide-eyed::wide-eyed: :meh::meh:
I saw that. I just wanted to appear relevant to the convo by mentioning I'd taken at least one of them.

It's a dreary, droopy day here in Boston. I'm in need of a mood booster myself.
 
I just wanted to appear relevant to the convo by mentioning I'd taken at least one of them.
You're ALWAYS relevant to the convo .... never doubt it !!!!
It's a dreary, droopy day here in Boston. I'm in need of a mood booster myself.
It's dreary here, as well (wherever that is, and I'll never tell).

Luckily, I'm wired oddly, and I truly love grey, overcast days and dramatic or drizzly skies. Ive actually found several others in these threads who feel the same, which is always heartening. You dont feel so alone and ..... weird ....

Well cheer up. The Winter SOlstice as a friend of mine reminded me, is just around the corner, days will get slowly longer and then brighter (shudder) and after that, hot as hell, and I'll have to grind thru another shitty summer ....

There's no cheering me today.

If I do find something, I'll share it with you instanter ...
 
- hello-

I am to see my GP on Monday. I got caught when my husband called them.

Not seen my GP in two years/COVID etc.

I have failed to follow up on 1)NEUROLOGY REFERRAL 2) some test (ANA)

What am I doing seeing my doctor? What can I get out of the deal? Can I get help for SOMETHING?

I looked up Sjorgrens Treatment and found: there is no treatment.

OK. CHeck

So thank you fo this suggestion. Maybe this IS something. Maybe I can try it? Maybe I might get some Brain Action?

(I have taken NAC in the past, who knows if it helped) I stopped all the mito stuff oh two years ago,.
 
Maybe someone here can take the article to their Dr, who can get the information from the article's Drs on dosing, issue a prescription for guanfasine, and get back to us.

I'm taking the assignment. I'll see if I can get anywhere with my GP on Monday.

Something that improves attention.

The big question I have is: whats the cost of increased attention?
 
I looked up Sjorgrens Treatment and found: there is no treatment.

You do want to find out if you have this though if doctors are willing to dig deeper. It can cause other organ damage...better to catch that before it can escalate.

Also this was from a post I left a long time ago:
...this article says: Sjogren's syndrome (SS) was found to be associated with a 1000 fold increase in the risk of parotid gland marginal zone lymphoma and a 6.5 fold increase in the risk of NHL overall1.

and this article says: A strongly significant elevated risk was found for non-Hodgkin lymphoma associated with chronic fatigue syndrome, and in particular, associations for 2 specified non-Hodgkin lymphoma subtypes (diffuse large B cell lymphoma and marginal zone lymphoma).

So it seems as though there could be some unresearched connection between them all. Plus, so far I don't think I've read anywhere where they've labeled Sjorgrens psychosomatic. That at least could be an paradoxical positive if you were diagnosed with it.

~~
Anyway on that topic:
Why do they have to throw the word "psychiatric" in so many of these papers? https://www.news-medical.net/news/2...e-for-observed-sequelae-in-PASC-patients.aspx:mad:

And this one where he linked "mental illness" in the same sentence with ours and similar conditions.
https://rob-obrien.medium.com/me-cf...-fight-people-about-what-it-isnt-7837d0db3324

"...Why are these conditions not catching people’s attention?
It’s an awful, awful predicament that ME/CFS patients find themselves in. You’re not dying and you’re not living. You face daily demands to explain yourself, constant stigma and isolation. It’s horrendous. That is one of the problems with these types of conditions — we know cancer, we know diabetes and we know heart disease. But not conditions like ME/CFS, Chronic Lyme disease, Fibromyalgia, POTS and a whole spectrum of mental illnesses."


Phrasing it that way will stick in people's minds as though they belong in the same family of conditions. Yikes.
 
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if doctors are willing to dig deeper

I am concerned with all that.

A good friend of mine with Non Hodgkins lymphoma has resurfaced. He might actually speak to me after four years. We may have lunch.

I debate if I am even allowed to ask him What Happened?

I've got issues with my lymph system.
 
we know cancer, we know diabetes and we know heart disease. But not conditions like ME/CFS, Chronic Lyme disease, Fibromyalgia, POTS and a whole spectrum of mental illnesses."

People just write things. Not thinking. Clearly none of that has anything to do with mental illness.
 
better to catch that before it can escalate.

but what is it we are catching? What is the treatment? some eye drops?

Most of my current focus is on moving lymph, talking to aching lymph glands, applying topical b-caryophyllene which CURES cancer. And chinese herbs for lymph.

Maybe I am making some progress.
 
but what is it we are catching?

I've heard of people who it caused severe gallbladder damage to. I believe I also heard of damage to the kidneys.

Edit: Here's one website that talks about the kidneys: https://www.reasonablywell.net/2008/06/sjogrens-syndrome-and-kidneys.html

This next site says, "SS as a disease of exocrine glands affects many parts of the gastrointestinal system." You've mentioned a lot of gastrointestinal issues.

https://pubmed.ncbi.nlm.nih.gov/22157220/

I'm still looking for the gallbladder story I heard. It's been several years and I think it was on youtube but they kinda get shuffled down the stack. Anyway, what I can remember is that it involved a military nurse with years of undiagnosed Sjorgrens. Before they figured out what she had it had eaten away at her gallbladder. I'll try to remember to keep looking in a couple days if I can.

Edit #2: This page does list some treatments as well: https://www.sjogrens.org/understanding-sjogrens/treatment (Though I didn't look through much there. Sorry.)
 
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YippeeKi YOW !!
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