Anyone out there on Guanfacine?

Bless your heart. I am so sorry. I'm sorry to repeat my story, but, here goes. I had Covid last August. I had horrible headaches with it and G.I. upset. In September I got worse and ended up in the ER with double pneumonia & asthmatic bronchitis & a bad sinus infection. I was put on IV antibiotics & steroids. I rebounded with asthmatic bronchitis in October and ended up on another round of antibiotic & steroids. I already had asthma before Covid, but, now I am more prone to asthmatic bronchitis since Covid. I had terrible oral thrush in my mouth from the antibiotics & steroids and was treated several times with antifungal meds. Covid left me with a thick slimy saliva that hasn't gone away. I get choked on this stuff at night. My mouth was cultured this past Feburary and it showed I no longer had thrush and had normal mouth bacteria. This is anything but normal. My acid reflux worsened, my inflammation in my body worsened and I was diagnosed with borderline Systemic Lupus this May and I am being treated for it. I already had fibromyalgia, both thyroid diseases & osteoarthritis almost all over. Covid ramped up everything I do believe. It took a couple months for my heart rate to go back to normal. I got an echo cardiogram done to make sure i had no heart damage...I am grateful I didn't. I never knew such fatigue. My chest hurt for quite a while and I had shortness of breath for a long time. I would do something.....rest....do something....rest. I slept a lot. I have never felt the same since Covid. My previous pain worsened all over along with my migraines. My faith in the Lord Jesus is what keeps me going and encourages me onward. I am so sorry that you are going through all of this. It's hard to get doctors to understand. I remind myself that they still are learning about Covid. It will take awhile before this virus is truly understood. I was diagnosed in April with long Covid. Everyone's long Covid symptoms are different. I care and I am praying for you.

I am sorry to hear what you have been through. You're right Covid stinks!

Out of curiosity, were you vaccinated? I never was and constantly think how quite possibly my life could be so different if i had been; albeit, I read n the forum that many folks who have been fully vaccinated still have Long Covid.

I do know {{{{stress}}}} definitely make our symptoms worse. That's what's so frustrating, is the Doc I saw at Mayo mentioned it and yet he is creating all this stress for me by refusing to call me back.

Are you taking any kind of medication for Long Covid?

I will pray for both us. Like you, I have faith in my Lord Jesus and he hears our prayers. I don't know how old you are, but I turned 68 next week. Some birthday 🙁

Summerof42, Bless you. I am on nothing for long Covid. I am on Plaquenil 200 mg (I only take 100 mg - senstive to meds) for Lupus which has helped my pain tremendously. I go to Covid Recovery Clinic next month. Stay tuned.... Keep looking up and hoping my friend. Happy Birthday early. It's hard not to be discouraged isn't it? BUT GOD...Praying fiercely for you.

@covidstinks - since you are part of the Covid Recovery Clinic, have they tried any medications? I'm beginning to wonder if we need to go in another direction and look into Holistic treatment. I'm told Covid creates terrible inflammation in our body to include brain inflammation; hence many folks with brain fog.

If that's the case, I wonder if we work with an integrative/Holistic MD we can look to treatments for inflammation and maybe detoxing. What are your thoughts?

The Plaquenil has helped me greatly. Yes, I have thought about the integrative route and I know that is a long and drawn out process and out of pocket, but, it may be worth it. Have a blessed Sunday!

Yes, I am on guanfacine. I now have high blood pressure as a result of my initial Covid infection in March 2020. My cardiologist prescribed Telmisartan. This past year, however, my research has found that guanfacine, which is used to treat high blood pressure, is also used to treat ADHD. Long Covid researchers have found that guanfacine combined with NAC (N-Acetyl Cysteine) helps with brain fog.
I had my PCP switch me to guanfacine for my high BP, and then got over-the-counter NAC (600mg). I have found that my general day-to-day brain fog has improved, but the brain fog I experience while in a crash/flair up seems to be the same.
Here is the article I sent to my PCP for the guanfacine prescription:

Yale School of Medicine: “Potential New Treatment for ‘Brain Fog’ in Long COVID Patients”
December 13, 2022
https://medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/
Note: I did this gradually starting with 1mg guanfacine per day for one month and then going up to my current dose of 2mg. After another month, I began 300mg of NAC and then went up to the full 600mg after an additional month.

Thanks to all for information! I hope and pray we will find a way out of this! No one had the complete picture including the medical profession . This is real , it hurts, it destroys self confidence and damages self worth . Invisible to the naked eye people just don’t understand how disabling this beast is! I keep on keeping on with my bed close by . Lots and lots of supplements seem to be making some difference. Out of the blue new symptoms strike. Everything seems okay then all of a sudden knives are stabbing the palms of my hands . And downhill we go again ! Keeping faith something will truly rid me of this problem once and for all!!

My biggest and most horrible symptom is the ANXIETY & DEPRESSION. Has anyone found medication that has helped.? Because Covid affects our nervous system, it's the worst! I tried Zoloft, then Escitalopram and remember waking up one morning feeling like my fabulous self again. It was the best feeling ever. No strange feeling in my arms or under the skin, no anxiety and actually went into work. Unfortunately, that was short lived. A couple of week later I started to get nerve pain in my upper thighs, had to go for terrible spinal tap. All turned out fine, but then newer symptoms set in. 3 yrs later, I am so much worse and barely functional.

The fast pulse and feeling like your heart is jumping out of your chest (like now as I type) is terrible and feeling all shaky, but also for me the extreme 'fight or flight' feeling 24/7. I can't sleep or even try to rest of take a nap. The minute I do, my body is jolted - like if you were dreaming and falling off a cliff and it jolted you up from rest. I know I need the appropriate medication, but docs don't know what to prescribe.

If only when I had Covid the doc gave me medication they typically use and/or monocolonal antibodies, but it wouldn't give me anything to stop this beast of a virus from invading my body and here i am today.

Besides seeing a therapist regularly since Long COVID onset September 2020, I have been on prescribed 300mg Wellbutrin XL (Bupropion - generic) since October 2022. My therapist has used the word "miracle" in describing my progress. ... I recommend both. Blessings to you and all!

Other meds:
Metoprolol 25mg/day - has significantly lowered my average heart rate from 80-90's to 70-80's and decreased my other heart symptoms racing/spiking/palpitations.
Low Dose Naltrexone (LDN) 1-4mg/day. Increasing by 1mg/day each week for first month. Shown to improve fatigue, brain fog, and pain. I am just entering my 2nd week.

[ https://www.peoplespharmacy.com/articles/should-doctors-consider-low-dose-naltrexone-for-long-covid ]

Are you taking the guanfacine in the morning or at night and is it XR or ER (extended release)? I ask because I started it last month and recovered a LOT of my brain function, but it is causing insomnia halfway through the night, which of course covid does too, but I'm thinking there may be better ways for me to take it. As far as medical care dealing with that, they are not available unless I am near death. I take the NAC also.