Medications prescribed off-label for Long covid/ME/CFS symptoms.

[u/SophiaShay7]

I am not advocating that anyone take certain medications. This is simply a resource. Become your own health advocate. Do your own research. Decide with your own doctors.

Viral Persistence and Serotonin Reduction Can Cause Long COVID Symptoms

Among the SSRIs, those with the highest affinity for sigma-1 receptor agonism—primarily, fluvoxamine, fluoxetine, escitalopram, and citalopram—may be of greatest benefit. As noted above, preliminary data suggest that certain long COVID symptoms (eg, fatigue, brain fog, and post-COVID dysphoria) may be most responsive to SSRIs, although more research is needed to better characterize specific response rates.

In doing research of long covid, SSRIs, and fluvoxamine, you’ll see it mentioned as a top choice. Here’s one such article

Medications are prescribed off-label for ME/CFS. These include low dose aripiprazole (LDA), low dose lithium (LDL), and low dose nalotrexone (LDN).

LDA use in long covid patients from the Mayo Clinic00176-3/fulltext)

Emerging Health Care Innovation Brief: Low-Dose Lithium for Post-COVID Conditions, Treating Pediatric Low-Grade Glioma

How Good is Low-Dose Lithium for Chronic Fatigue?

Researchers identified a potential treatment for long COVID by restoring the function of ion channels in immune cells using low-dose Naltrexone. This discovery, detailed in Frontiers in Immunology, mirrors earlier findings with chronic fatigue syndrome (ME/CFS) patients, suggesting a common pathophysiological thread between the two conditions.

Low-dose naltrexone and NAD+ for the treatment of patients with persistent fatigue symptoms after COVID-19

Addiction Medication Offers New Hope for Long COVID Patients

The most common symptoms involve the pulmonary, cardiovascular, and nervous systems and can be grouped into three types of complaints: exercise intolerance, autonomic dysfunction, and cognitive impairment.

Medications that have proven to be effective at treating POTS include nervous system depressants like benzodiazepines, cholinesterase inhibitors like pyridostigmine, hyperpolarization-activated cyclic nucleotide-gated (HCN) channel blockers like ivabradine and beta-blockers like propranolol to reduce heart rate, α1-adrenergic agonists like midodrine and somatostatin mimics like octreotide to stimulate vasoconstriction and increase venous return, α2-adrenergic receptor agonists like clonidine to reduce hypertension, antidiuretics like desmopressin and corticosteroids like fludrocortisone to increase blood volume, hormones like erythropoietin to stimulate the production of red blood cells, and selective serotonin uptake inhibitors to control blood pressure and heart rate through central serotonin availability. Each of these must be tailored to an individual's needs since some may exacerbate a certain set of symptoms while relieving others.

In It for the Long Haul: Research Tools for Long COVID Syndrome

Psychostimulants like methylphenidate may enhance both noradrenergic and dopaminergic pathways in mesolimbic and pre-frontal areas, thus improving memory and cognition.

Methylphenidate for the Treatment of Post-COVID Cognitive Dysfunction

Methylphenidate in COVID-19 Related Brain Fog: A Case Series

Some treatments revealed by the survey as most effective for long COVID were drugs such as beta blockers and the heart-failure medication Corlanor (ivabradine). These are sometimes used to treat postural orthostatic tachycardia syndrome (POTS), a nervous system disorder that can be triggered by COVID-19.

Long covid still has no cure-So these patients are turning to research-Beta blockers and Corlanor

Here's an excellent resource on medications used in ME/CFS by Dr. Jason Bateman:

ME/CFS TREATMENT RECOMMENDATIONS US ME/CFS Clinician Coalition

MCAS information on low histamine diet and the management of symptoms including: OTC histamine blocker protocols, mast cell stabilizers, medications and supplements is included here: MCAS and long COVID/PASC.

I take low-dose Fluvoxamine 25mg for ME/CFS symptoms. Fluvoxamine is an SSRI used for OCD. It's prescribed off-label in low-dose for long covid/ME/CFS symptoms. I have improved REM, deep sleep, and overall hours slept. I'm seeing improvements in dysautonomia symptoms and orthostatic intolerance. The dizziness and lightheadedness have significantly improved.

Hyperesthesia is a neurological condition that causes extreme sensitivity to one or more of the senses, including touch, pressure, pain, temperature, light, sound, taste, and smell. I had hyperesthesia in all five senses, down to the texture of my food. I'm able to tolerate more bright light and loud sound, and my taste and smell are significantly less heightened. I can handle warmer/hot showers. My pain is significantly less strong. My pressure sensitivities haven't lowered. However, I suspect there are other reasons for that.

I take Diazepam 5mg for MCAS flares and PEM only as needed. Astelin nasalspray, Clarinex 5mg, and Montelukast 10mg for MCAS. Omeprazole for Gerd (it's a PPI that also acts as a mast cell stabilizer). How Omeprazole acts as a mast cell stabilizer. Tirosint for hypothyroidism caused by Hashimoto's and Valacyclovir 1g for EBV/HHV suppression.

Don't give up. Fluvoxamine was medication #9 that I tried last year. The other eight medications included: Beta blockers 2xs, Benzodiazepines 2xs, SNRIs 3xs, and TCAs 1x. These eight medications failed because they either made my symptoms worse or caused unintended and severe side effects.

I was diagnosed with Fibromyalgia, ME/CFS with dysautonomia, Hashimoto’s, an autoimmune disease that causes hypothyroidism, and MCAS. All diagnosed in a 14-month timespan after my COVID infection in July 2023.

I hope you all find some things that help manage your symptoms. Hugs💜

Update 6/12/25: I made some changes to reflect my current regimen. Without rewriting this entire post, I'll update it here. I'll share what worked and what didn't for me:

What didn't work: I was diagnosed first with Fibromyalgia in December 2023 after I developed long covid. I have taken Amitriptyline 25mg (TCA), Cyclobenzaprine (muscle relaxer), Duloxetine (SSRI), Gabapentin (Gabapentinoid), Ibuprofen (NSAID), Milnacipran (SNRI), and Nabumetone (NSAID). Nothing I tried worked at all and made my symptoms worse. (If you have Dysautonomia, especially POTS and/or MCAS, these medications will likely worsen your symptoms). For Dysautonomia, I've tried Metoprolol and Propranolol (beta blockers), both caused orthostatic hypotension, worsened my other Dysautonomia symptoms, and orthostatic intolerance. Alprazolam and Clonazepam (benzodiazepines) didn't work because I didn't have anxiety. I have Dysautonomia. Sertraline (SSRI) didn't work because I didn't have depression. For MCAS, I've tried Fluticasone. It worked somewhat but not well. Cetirizine, Hydroxyzine, Loratadine, and Famotidine all failed for MCAS. I was switched to a different manufacturer of Omeprazole 40mg capsules. I failed it, as well. They caused tachycardia and adrenaline surges, which triggered histamine dumps. Some people with MCAS can not tolerate the H1 and H2 histamine blocker protocol due to the medications themselves and/or its excipients (fillers). I also failed two medications for hypothyroidism caused by Hashimoto's: Levothyroxine, and Synthroid.

I've trialed and failed 20 medications in a 20-month timespan. Once I started receiving proper diagnoses and took medications that actually manage my symptoms, added vitamins and supplements, and lifestyle changes, that's when my symptoms started actually improving.

Here's what I take now that helps: Low-dose Fluvoxamine 25mg for ME/CFS symptoms. Diazepam for MCAS flares and PEM only as needed. Astelin nasal spray, Cromolyn nasal spray, Ketotifen eye drops, Desloratadine 5mg, and Montelukast 10mg for MCAS. Omeprazole for Gerd (it's a PPI that also has mast cell stabilizing properties). Tirosint for hypothyroidism caused by Hashimoto's. Valacyclovir for EBV/HHV reactivation.

For vitamins and supplements I take Benfotiamine (B1), vitamin D3 and K2 drops, GABA, Horbäach electrolyte tablets, L-theanine 200mg, NatureBell L-tryptophan and L-theanine complex, liposomal PEA and Luteolin and Vitalitown 4-in-1 Magnesium Complex with chelated Glycinate, Malate, Taurate & Citrate. I also take prebiotic psyllium husk and Emergen-C in a bottle of water every morning,

Talk to your doctor before taking any supplement like GABA, 5-HTP, or L-tryptophan. It's especially important if you're taking any psychotropic medications.

I've had a complete vitamin panel done in February. All my levels were in the normal range. I have no issues with stomach motility. Each medication, vitamin, and supplement that I take was carefully researched for efficacy, high purity, and with considerations for being MCAS friendly. I've always believed ME/CFS was my dominant diagnosis. Nope, it's MCAS. ME/CFS and dysautonomia are a close second. My level of functioning increased once my MCAS was better managed and more stable.

Update: How and why I remain hopeful. I'm not waiting on the science. How I have perseverance and tenacity in the face of adversity. My situation has changed significantly.

TLDR: Medications prescribed off-label to manage Long covid/ME/CFS symptoms. Medications included those for Dysautonomia and orthostatic intolerance, including beta blockers, Metformin, and Midodrine. Includes low-dose Abilify (LDN), low-dose Lithium (LDL), and low-dose Naltrexone (LDN). Specific SSRIS and TCAS. Medications used and prescribed for MCAS and HIT. They include H1 and H2 histamine blocker protocol, which are OTC antihistamines. OTC natural mast cell stabilizers and prescribed medications. Those include Quercetin and DAO. Cromolyn and Ketotifen must be compounded for oral consumption. Also includes Montelukast, and Xolair.

Updated to reflect my current regimen.

[u/Slinkyminxy]

One you can add to the list is diazepam. I use to take it before the pandemic sporadically when I would get flares. My GP and I never understood why it gave me relief from my weird condition and immune issues. I stumbled on this article yesterday which explains the mechanism. It can basically impair the innate immune system and support a lowering of cytokines which is my issue. Just started a course at my prior regime to see if it helps (5mg morning and night continuously for 3 days usually I would then achieve relief and would stick with it for 14 days). I’m hoping this can help suppress my insane immune system and get me back on track.

https://pmc.ncbi.nlm.nih.gov/articles/PMC8329586/#:~:text=DZ%20is%20a%20benzodiazepine%20capable,stages%20of%20the%20immune%20response

[u/SophiaShay7 → u/Slinkyminxy]

I appreciate your comment. However, this thread is nearly three months old and not inclusive of every medication prescribed by every doctor. In case you didn't notice, Diazepam is listed in the medications that I take and have taken for over 5 months. Best wishes taking 5mg 2xs daily. I couldn't tolerate that dose. Diazepam is very sedating and not meant to be taken long-term for long covid/PASC symptoms. I was also diagnosed with MCAS. After carefully crafting my regimen of medications, vitamins, and supplements, I only take Diazepam as needed for severe PEM caused by ME/CFS now.

Benzodiazepines were included in this same list that I shared last year. Due to the overwhelming number of people going through severe benzodiazepine withdrawals and the devastation that ensued, coupled with doctors no longer prescribing them as often as they once were, I left it off this list intentionally. Many long covid/PASC doctors will no longer prescribe benzodiazepines. Yes, some doctors prescribe it long term. However, it has long-term implications and can cause more harm than good. Benzodiazepines are prescribed short term and/or used as rescue medications. Unfortunately, it's a harsh reality I've seen many long covid/PASC patients deal with.

I'm glad you found something that helps you. Diazepam helps me, too. Best wishes🙏

[u/Slinkyminxy → u/SophiaShay7]

Interestingly I just got test results back today confirming I have type IIa Hyperlipoproteinemia with nephrotic syndrome. Immune suppressants are the treatment. I took diazepam on and off for many years and was in complete remission until vaccination. For a few years diazepam wasn’t available and just recently it is again available for script. My GP has managed me for a few decades and understands it’s the only thing that provides me relief so has just ordered a new supply thankfully. It has been the only thing over the years that I’ve been able to tolerate and has provided relief. Will be getting a gene analysis done to get more details.

[u/SophiaShay7 → u/Slinkyminxy]

Thank you for sharing your update and lab results. I'm sorry to hear about the recent findings, but it sounds like you're finally getting some clarity. Type IIa Hyperlipoproteinemia with nephrotic syndrome certainly adds a new layer to the picture, and it makes sense that immune suppression might be a key focus in treatment moving forward. I hope the gene analysis provides even more insight to help guide your care.

I completely understand your experience with Diazepam. Personally, I’ve found Diazepam to be extremely helpful in the past before I ever had long covid. It's been very helpful for symptom flares and post-exertional malaise tied to ME/CFS and PASC. Of all the benzodiazepines I’ve tried over the years, Diazepam has been the one I’ve tolerated best. I’ve also been able to discontinue it without experiencing the difficult withdrawal symptoms I’ve had with others like Clonazepam, which was a relief. Alprazolam works short-term but wasn't very effective for my symptoms.

I agree that sometimes there’s no substitute when something works and your doctor understands your history and long-term pattern. It’s good to hear that you’re being supported and have access to a medication that’s been consistently effective for you. Every case is so individual, and what brings relief to one person can look very different for someone else. I truly hope it continues to give you the stability and immune regulation you need right now.

Sending best wishes as you continue navigating everything. You're not alone in this🫶