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Anyone out there on Guanfacine?

Post-COVID Recovery & COVID-19 | Last Active: Jan 29 1:24pm | Replies (60)

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@maynard02

Can you provide a copy of the Mayo Clinic protocol? Where did you have your primary doctor call the prescription to ? I'm hoping for the same good results for my husband as you experienced. You've given me great hope; thanks.

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Replies to "Can you provide a copy of the Mayo Clinic protocol? Where did you have your primary..."

I am so sorry that you are going through this. Stay hopeful, long Covid is
a very new illness and as more information and research comes in, I am
confident that we will have more effective treatments.

My symptoms were cognitive issues, short term memory loss, word recall,
concentration, extreme fatigue, insomnia, joint pain, balance problems.
I had pre-existing depression with anxiety for which I take lamotrigine 200
mg, as a mood stabilizer. Until I started low dose naltrexone, I took
Ambien for chronic insomnia. My depressions did not respond well to SSRI
like Efexxor and Prozac at all. There was no difference until I started
taking lamotrigine (Lamictal) that my mood stabilized and I feel normal
now.

The protocol for naltrexone is straightforward. The starting dose is 1.5 mg
for 2-3 weeks, then the full dose is 4.5 mg once daily. It is one tenth of
the dose of naltrexone used for opiate addiction treatment. It is very safe
and well tolerated.
It appears to have an anti-inflammatory effect through modulating cytokine
activity and providing support for glial cells that supply the neurons with
nutrients and oxygen.

I am a veterinarian , so it was easy for me to research and scan through
medical studies that mention “low dose naltrexone” LDN. There are numerous
papers relating to its use in chronic fatigue syndrome, fibromyalgia and
pain management using LDN. Most of the research for post Covid was done at
Mayo Clinic and Stanford University. These are preliminary research studies
that are in the process of acceptance for publication. Mostly pilot
studies. They combine naltrexone with NAC (a supplement available over the
counter)

My doctor agreed to try a therapeutic trial based on my requests and
called in a prescription to the Mayo Clinic in Minnesota main hospital
pharmacy. They shipped the medication directly to me. It is also available
in compounding pharmacies nation wide and inexpensive.

Depression is really hard to live with. There is no simple answer. Mine
were chronic and recurrent and worse during the winter months. Very
profound and debilitating. Part was a genetic predisposition and part
circumstantial life experiences. I have always been sensitive to sound and
light with a marked startle reflex. What helped me most was mild exercise,
just a 25-30 minute walk - recently read about the importance of
lengthening stride rather than walking faster for full benefit of cardio
and joint motion. I use an app for meditation / relaxation on my phone
called Insight Timer. It helps me relax and sleep, which has always been a
challenge for me. Now I focus completely on the breath and I’m able to
eliminate racing thoughts and anxiety by just becoming completely aware of
breathing. It’s a skill that took me a month or two to get better at, but
it does work. Walks in nature. Social gatherings with friends, activities
you enjoy. A gratitude journal. Minimal alcohol. Every small part
contributes.

Be cautious with tranquilizers especially Xanax . Highly addictive even
when used as directed, trying to get off them causes profound rebound
anxiety far worse that what I started. If necessary use a longer acting
sedative benzodiazepine like diazepam.But they are all likely to induce
tolerance and dependence so use with caution. Getting much better sleep
with naltrexone helped with my concentration, energy and mood, sleep is
such a crucial restorative function and that has improved greatly since I
started naltrexone 4.5 mg and NAC. Every little step counts, so the more of
these things your can incorporate the better. I also Eat healthy food, a
Mediterranean diet with fresh vegetables (all different colors for the anti
oxidative effects) green leafy , fruit, avocados, berries, salmon, lean
chicken, nuts almonds and walnuts, olive oil, legumes ie beans, lentils, no
processed foods minimal starches. I’m also pre-diabetic so this type of
eating helps. It’s not a ‘diet’ it’s just the way people in the
Mediterranean eat.

All these things combined help. Do what you can. Pace yourself. Preserve
your energies. Give yourself grace. Try to find supportive positive people
around you who understand and empathize, and most of all, maintain hope.
Find a primary care who is attentive, and listens to your concerns and
works collaboratively with you.

I wish you all the best in your journey towards recovery.

Thanks so much for the answer on the Mayo Clinic protocol you are using. I'm unsure, and others have also asked, about the dosage for NAC. You said "combined with supplement NAC". Do the pharmacists compounding the LDN add that supplement to the same capsule? Or do you buy the NAC over the counter and take it separately? And in either case what's the dosage and what is its mode of action in helping with long Covid.

Thanks so much for the research into the published research ongoing at Mayo and Stanford. Also, your words of encouragement keep up our spirits -- another step toward recovery.