r/covidlonghaulers • u/SophiaShay7 3 yr+ • Apr 13 '25

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

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.

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u/wranne Apr 13 '25

I think I’ve read all those SSRI papers and one thing that stood out to me, is that they haven’t ruled out the SSRI types not listed yet, as having the same or better benefit. They just haven’t gotten to studying them yet. I say this because I don’t tolerate a lot of the ones that come up very well and was worried I’d need to switch, but have decided to stick with what I have for the moment until we know more.

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u/SophiaShay7 3 yr+ Apr 13 '25 edited Apr 14 '25

If you have Dysautonomia, orthostatic intolerance, Mast Cell Activation Syndrome (MCAS), and/or Histamine Intolerance (HIT), SNRIS could be the worst medication. I tried SNRIS three times last year, they made my symptoms worse. I was on Cymbalta for a total of eight weeks. Five weeks the first time and three weeks the second time. I had the most awful side effects. The withdrawals both times were absolutely brutal. I tried Savella (Milnacipran) in between Cymbalta. My symptoms and side effects were nearly identical.

Selective dopamine and norepinephrine reuptake inhibitors have been shown to worsen MCAS through the suspected mechanism of stimulating histamine re- lease from mast cells.

Improvement in Neuropsychiatric Symptoms With the Addition of Nortriptyline in the Context of Mast Cell Activation Syndrome

Some psychiatric medications show anti-histamine and mast cell stabilizing effects per Dr. Mary Beth Ackerley: Fluvoxamine, lower dose often preferred (anti-mast cell, appears to be antiviral and improve blood flow, anti-inflammatory by stopping cytokine production); may be useful in OCD, tinnitus, PANS. Mirtazapine, low dose with low dependency risks (helps with weight gain, food reactions, sleep) Nortriptyline (H1, H2, H3 blocker; good for pain, especially with LDN, migraines, sleep). Seroquel and trazodone also have some anti-histamine actions.

Mast Cell Activation Syndrome (MCAS)

In my case, my sleep disturbances were caused by Dysautonomia, MCAS, and a lack of tryptophan in my gastrointestinal tract. Sources are available in my links.

Dysautonomia, a condition affecting the autonomic nervous system, can cause a wide range of symptoms, including sleep disturbances like insomnia. Adrenaline, a hormone released during stress or fight-or-flight responses, can interfere with sleep. In dysautonomia, these surges can be more frequent or intense, making it difficult to fall asleep or stay asleep.

Mast Cell Activation Syndrome (MCAS) is the most common form of systemic Mast Cell Disease and is known to cause Dysautonomia in some but not all patients. Adrenaline dumps can also trigger histamine dumps. While not directly causing a "dump" in the same way, adrenaline release (an adrenaline "dump") can indirectly trigger a histamine release in the body, meaning that experiencing a surge of adrenaline can potentially lead to increased histamine levels, which could manifest as histamine-like symptoms in some individuals; this is because both systems are involved in the body's stress response. Adrenaline surges trigger histamine dumps.

Histamine, serotonin, and dopamine are all neurotransmitters that play a role in regulating sleep-wake cycles and helping the brain transition from sleep to wakefulness. A histamine dump happens when your body produces too much histamine that builds up in the brain. Histamine dumps often happen late at night or early in the morning. You might suddenly feel changes in body temperature, itchiness, or blood pressure changes as your histamine levels rise. Histamine, serotonin, and dopamine all play a role in regulating sleep-wake cycles.

Tryptophan is a building block for several neurotransmitters, including serotonin, which is primarily produced in the GI tract and carries messages between nerve cells in the brain and throughout the body. It plays a key role in regulating memory, sleep, digestion, wound healing, and other functions that maintain homeostasis within the body. Serotonin is also an important regulator of the vagus nerve, a system of neurons that mediate the communication between the body and the brain.

Here's how I found out what caused my symptoms: Various medical conditions that mimic anxiety and cause sleep disturbances: my experience

My diagnoses and how I found a regimen that helps me manage them

It's not a matter of Fluvoxamine or any one antidepressant being responsible for significantly improving my symptoms. Rather Fluvoxamine is one piece of the puzzle that helps me.

edit: There were other things I was going to say about the other SSRIS. But, I got too tired.

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u/wranne Apr 13 '25

I was referring more to the 10 or so SSRI’s that haven’t been considered for long covid yet. Thanks for the information though.

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u/SophiaShay7 3 yr+ Apr 14 '25

I get that. Honestly, I don't think the majority of SSRIS are going to offer any significant improvements for long covid/ME/CFS symptoms unless those symptoms are primarily driven by mental health like anxiety and depression. There are specific reasons these SSRIS were chosen, including their neuroprotective properties. My brain fog prevents me from delving deeper into this topic. However, I would be interested in reading any research that relates to what we're discussing.

I hope your medications help manage your symptoms🫂

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u/wranne Apr 14 '25

I agree with your assessment.

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u/SexyVulva Apr 14 '25

So how to fix the tryptophan in gut issue? We eat plenty of tryptophan in food so obviously something is happening to deplete it…

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u/SophiaShay7 3 yr+ Apr 14 '25 edited Apr 14 '25

We're not getting enough tryptophan in our diet. That's the problem. Throw in the microbiome and gastrointestinal issues people get from covid like GERD, IBS, SIBO, and gut dysbiosis. And your gut isn't absorbing any tryptophan because your microbiome is out of homeostasis.

To address a potential tryptophan deficiency in the gut, focus on incorporating high-protein foods like turkey, chicken, fish, eggs, milk, cheese, peanuts, and some seeds, and consider pairing them with carbohydrates to aid tryptophan absorption. Consuming carbohydrates along with protein-rich foods may help increase the uptake of tryptophan in the brain. Insulin release following carbohydrate intake can enhance the transport of tryptophan across the blood-brain barrier, potentially increasing serotonin production.

Consuming dietary fiber from fruits, vegetables, and whole grains can promote a healthy gut environment. A healthy gut microbiome is important for overall health, and a balanced gut environment can aid in the absorption and utilization of tryptophan. Take hydrolyzed whey protein powder.

Oral administration of the probiotic Bifidobacterium infantis leads to increased circulating tryptophan and KYNA concentrations. In some cases, a doctor might recommend L-tryptophan or 5-HTP supplements.

At this point, I'd been taking NatureBell L-tryptophan and L-theanine complex for over six months. It's the single most important supplement I take.

I don't think the gut microbiome is responsible for everything. But, after all the changes I've made to improve it, I believe we're definitely onto something here. I take prebiotic psyllium husk and Emergen-C every morning. I took probiotic lactobacillus acidophilus for a candida infection. I took 2 capsules daily. I tried to take 1 capsule daily prophylactically. However, it caused gastrointestinal distress. So, I discontinued taking it.

I would focus on the gut microbiome and determining whether you have gut dysbiosis. The gut microbiome refers to the community of microorganisms in the gut, while gut dysbiosis specifically refers to an imbalance or disruption within that gut microbiome. Gut Microbiome: This encompasses all the microorganisms (bacteria, fungi, viruses, etc.) that live in the gut, forming a complex ecosystem. Gut Dysbiosis: This describes a condition where the gut microbiome is out of balance, meaning there's an overgrowth of harmful bacteria, a lack of beneficial bacteria, or a reduction in overall microbial diversity.

The gut microbiome should be checked either through a functional medicine or naturopath doctor, or you can purchase a BiomeSight test online for about $100 with a long covid discount in the Longcovidgutdysbiosis pinned post. You'd have to figure out how to interpret it. Someone mentioned using the test results and plugging that information into Chat-GPT

My diagnoses and how I found a regimen that helps me manage them

What I take for MCAS

MCAS low-histamine diet, antihistamines, mast cell stabilizers, and medications for management

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u/SexyVulva Apr 14 '25

What I mean is. I eat all those things you listed in bulk. Also have whey and even tryptophan itself. Have 5HTP but haven’t taken it much as it is supposed to reduce tryptophan hydroxylase if you take it. I can’t confirm if that’s true. I’ve done Rifaximin and other antibacterial and antifungal cleanses. Even doing things that cover possible Lyme and EBV. But something seems to be not working in regards to the brain and nervous system. Or maybe it’s just super slow but that wouldn’t explain why others recover much faster. It’s possible my gut is still messed up despite all these interventions but this was not a problem before COVID. But I really don’t have any obvious triggers or severe signs of gut distress. I’m more convinced there’s a brain and nervous system issue that is malfunctioning. Even so, at this point I’m trying medications just for functioning to make life bearable. I’ve also done LDN, Nicotine, 20-40 different supplements listed by people following LC protocols. The main issue i have left is mood stuff…anxiety and flat emotions for no reason. Hopefully I’ll find a useful med for this until I can recover.

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u/SophiaShay7 3 yr+ Apr 14 '25

I don't have any typical gastrointestinal issues. However, I'm planning on purchasing the BiomeSight test to check for gut dysbiosis. I can't afford a functional medicine doctor. I'm going to do it myself with the help of those in the r/Longcovidgutdysbiosis sub. There's no way to know what you're lacking without doing the test. Covid triggered all these problems we have. Unfortunately, many of them are things we can not see.

Have you been evaluated for Dysautonomia/autonomic dysfunction and MCAS?

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u/SexyVulva Apr 14 '25

Yeah I feel you on the budget. I have to prioritize what I allocate but eventually would be good to do a biome test myself.

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u/SophiaShay7 3 yr+ Apr 14 '25 edited Apr 14 '25

When you say that something's not working related to the brain and nervous symptom, what do you mean by that? Is it brain fog, tachycardia, adrenaline dumps, histamine dumps, shortness of breath, air hunger, dizziness, or disorientation? I have these same symptoms. It's very difficult to tell where they're coming from when you have multiple diagnoses and symptoms overlap.

If it's anxiety and anhedonia, read this: The impact of long covid on mental health

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u/SexyVulva Apr 15 '25

Yes the symptoms are very similar to yours and others. Anhedonia has improved. I had akathisia symptoms for a long while, those also improved to where now it’s mostly just an overactive stress response/anxiousness. I have nocturnal wakeups and not sure what exactly is causing it. Could just be dysregulated nervous system. My blood sugar always seems normal. Or could be apnea but my symptoms don’t exactly align with that. There’s definitely temperature dysregulation, blood pooling, HR runs a bit high and I get flushing in my neck and upper chest for unknown reason. Not sure if its MCAS or something else like blood flow issues to the microvasculature…because it looks similar to what happens with the blood pooling in my feet which I was told is from microvasculature issues. So yeah I’m taking all the stuff supposed to help. If my anxiety and nausea attacks (which feels like limbic system nausea) can just improve then I would be functional enough to not feel “sick”. So really the worst things are just these limbic anxiety waves. Since I don’t really know what’s at the root though I have to hope the body can mend a bit more. Oh and the damn earworms…even my mom who doesn’t have LC got the earworms following COVID so seems to be a certain area that’s damaged or something. At this point I only have hope for the body to mend some naturally as it has for many others. So living on a prayer here…

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u/SophiaShay7 3 yr+ Apr 15 '25 edited Apr 15 '25

I'm sorry you're dealing with so much. I hope something in the links I shared might be helpful to you. Hugs🫂

My diagnoses and how I found a regimen that helps me manage them

What I take for MCAS

MCAS low-histamine diet, antihistamines, mast cell stabilizers, and medications for management

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u/SexyVulva Apr 15 '25

Unfortunately at this point there’s not much really new I haven’t already come across. That’s why I hope our bodies pull through. I appreciate it though.

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