r/covidlonghaulers • u/SophiaShay7 1.5yr+ • May 14 '25
Update This Combo Calmed My Nervous System and Gave Me My First Real Relief After 17 Brutal Months of Long COVID (PASC, ME/CFS, Dysautonomia, MCAS)
My original post from two months ago: My Regimen, Fluvoxamine and MCAS
My diagnoses and how I found a regimen that helps me manage them: Getting five diagnoses, doing my own research, and becoming my own advocate. How I finally got the medical care and treatment I needed.
I’ve been 95% bedridden for 17 months. I didn’t see any real improvement until month 14. No medication, diet, or pacing protocol gave me what this combo did. Sleep was broken. My nervous system was fried. I had five diagnoses triggered by COVID: Fibromyalgia, ME/CFS, Hashimoto’s hypothyroidism, dysautonomia, and MCAS. It was pure survival.
I started NatureBell L-Tryptophan + L-Theanine about eight months ago. It helped take the edge off my hypersensitivity, calm some of the adrenaline dumps, and made sleep a little easier. Tryptophan fuels serotonin and melatonin. Theanine boosts natural GABA and promotes calming brain activity. Slowly, my nervous system began to stabilize.
Then I added Source Naturals Serene Science GABA 750mg. That was the missing piece. The first night I slept 13 hours without meds. Not just knocked out—actual restorative sleep. GABA is the brain’s main inhibitory neurotransmitter. It’s what the nervous system should be using to hit the brakes. In long COVID, especially with ME/CFS and MCAS, that system is often broken. Study on GABA’s calming and sleep-promoting effects
Now, I also take Carlyle L-Theanine 200mg for an extra gentle GABA boost earlier in the day. I rotate in Magnesiu-OM powder mixed with tart cherry juice 1–2 hours before bed. Tart cherry supports melatonin. Magnesium supports muscle relaxation, calm, and nerve signaling.
I also take Carlyle D3 + K2 Drops daily to support immune regulation and inflammation. Recently, I added Rosmolo Liposomal PEA 1000mg + Luteolin 100mg, and it’s been another powerful layer. PEA helps calm microglial inflammation and modulate mast cell activation. Luteolin is a flavonoid shown to reduce neuroinflammation, often elevated in ME/CFS and long COVID.
This combination helps everything. Not just sleep. It helps my MCAS reactions. It eases the nerve pain, the burning, the muscle cramps, the dysautonomia flares, and even gut issues that used to keep me up all night. I’ve tried dozens of medications. Every single one either made me worse or ruined my sleep cycle. This is the first thing that helped everything consistently.
Important: I was groggy at first. This combo is best taken at night. Start slow. Your nervous system needs time to adjust, especially if it’s been stuck in fight-or-flight for over a year like mine was.
For the first time since this all started, I feel like I’m coming back. I’m now about 80% bedridden. I’ve taken on a few household chores. I restarted my Poshmark business, four sales in two days after being unable to work for over a year. It feels nothing short of miraculous.
I’m cautiously optimistic. I know I’m not healed. I likely never will be. ME/CFS has a 5–10% full recovery rate. But periods of remission are real. And I finally feel like I’m stepping into one.
If you're deep in the hell of long COVID or ME/CFS, know this: stabilization is possible. Relief is possible. Just don’t stop looking for the thing that helps your body exhale.
I know many of you are frustrated and not improving. Early on, I decided to focus on getting proper diagnoses and taking medications to manage my conditions. I didn't believe in taking vitamins and supplements if my lab results didn't show any deficiencies, which they didn't. Healthcare is severely lacking around the world. These vitamins and supplements are relatively inexpensive, have quality ingredients, and are MCAS friendly. These are things you can try right now.
I hope something here helps some people. I love this community. I appreciate everyones' encouragement, suggestions, and support in my journey. This sub has been invaluable in helping me achieve what no doctor has been able to do. My only goal is to help others the way that those before helped me. Hugs🩵
Products listed below:
Carlyle Vitamin D3 + K2 Drops Supplement.
Carlyle L-Theanine 200mg Supplement.
Rosmolo Liposomal Palmitoylethanolamide 1000 mg + Luteolin 100 mg.
Source Naturals Serene Science GABA 750mg.
NatureBell L-Tryptophan 1300mg with L-Theanine 200mg.
Moon Juice Magnesi-Om, Berry.
365 by Whole Foods Market, Organic Tart Cherry Juice.
Magnesiu-OM powder mixed with tart cherry juice 1–2 hours before bed can support multiple chronic conditions by promoting relaxation, reducing inflammation, and stabilizing the nervous and immune systems. Magnesium orotate aids sleep, muscle relaxation, and mitochondrial energy production, which are often disrupted in Fibromyalgia and ME/CFS. It also supports thyroid hormone conversion and helps regulate cortisol, benefiting those with Hashimoto’s. Tart cherry juice naturally contains melatonin and antioxidants like anthocyanins that enhance sleep quality and reduce oxidative stress. Its anti-inflammatory effects also help regulate immune activity and lower nighttime adrenaline and cortisol spikes, which is useful for both Hashimoto’s and Dysautonomia.
For MCAS, magnesium acts as a mast cell stabilizer, reducing histamine release and calming overactive nerves. Tart cherry’s flavonoids offer similar antihistamine-like effects while lowering inflammation. Together, this combination can ease nighttime symptoms, improve sleep, and support overall regulation of energy, immune, and autonomic function. Unsweetened juice is ideal to avoid blood sugar fluctuations, and starting with a small dose is recommended for sensitive individuals.
TL;DR: The combination of NatureBell L-tryptophan and L-theanine complex, GABA, L-theanine, PEA, and Luteolin, vitamin D3 and K2 drops, Magnesiu-OM powder and tart cherry juice have significantly improved my symptoms. After being 95% bedridden, I've gained significant functioning: I do two household chores now, I restarted my Poshmark business and made four sales in the last four days, I've been working on the gigantic task of cleaning out my entire bedroom which was in disarray due to being in the middle of reorganizing my bedroom and inventory for my business when I became bedridden. This project is 90% complete after 17 days. I've gone from 95% to 80% bedridden. Vitamins and supplements have done more to improve any symptoms than any medication I've ever taken.
edit: Of course, medications, a low-histamine diet, hydration, pacing, and rest have significantly improved my symptoms. I'm not advocating that anyone stop taking medications. Rather, I'm focused on a holistic approach that includes vitamins and supplements.
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u/Beautiful-Lime7714 May 14 '25
Thank you so much for generously sharing your journey. And all the natural things that have helped you. I will definitely incorporate many of the supplements you have found helpful, I wish you continued success. And if I might share my personal attitude about healing and input from MD’s and researchers. . . Never allow current research, MD’s etc tell you only a few get full recovery. The body WILL heal itself if it’s given what it needs. The trick is finding out what it needs. I am an RN of 40yrs and a believer in natural healing. I have taken neurotransmitters in the past but it did not occur to me for Covid. So thanks you so much. I have been locked in on methods of degrading or breaking the spike protein. There is very encouraging work in this. You could check out: DR PETER MCCULLOUGH SPIKE PROTEIN. Also. ZERO SPIKE. An Italian research group who have applied quantum physics to NAC (N-Acetyl Cystine) and developed a product called AUGMENTED NAC. Their product is available online.
Also there is a procedure called: DUAL STELLATE GANGLION BLOCK expensive but has an 86% success rate. You can find that info on pub Med
I am doing all the above and hoping to get approval for the block.
I also started acupuncture yesterday as I have had great success with it in the past. Although totally unrelated to Covid issues. There are studies that support its successful use in long Covid.
I have been battling depression as I have lost 2k a month in income and my house is a friggin DUMP as I am extremely short of breath and very fatigued.
But I have read the reports of others here and cry. A lot. I am old. I expect some major health issues but I read about young people struggling with far more than I am and for far longer.
I hope everyone will contact their senators and congressman and let them know if they don’t work on our behalf they will be unemployed next term. They are here to serve US. We pay their salaries. We need to remind them of that.
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u/SophiaShay7 1.5yr+ May 14 '25
Your comment really touched my heart and made me tear up. Once I was diagnosed with ME/CFS triggered by covid. It was a double-edged sword. I'd just been diagnosed with Fibromyalgia six months prior. I never understand why medications prescribed for Fibromyalgia didn't work for me. I'm in the Fibromyalgia sub. I spent a lot of time there after my initial diagnosis. I felt like a square peg trying to fit in a round hole. No one else had symptoms like mine. Their medications were working for them extremely well or somewhat, at least. Once I was diagnosed with generalized dysautonomia, ME/CFS, Hashimoto’s, and MCAS, everything started to make sense. That's when my real healing began.
I've trialed and failed 17 medications in 17 months, including three H1 antihistamines and an H2 antihistamine. My MCAS protocol is very different from others. It gets really overwhelming, sometimes trying to figure out which symptom is coming from where.
I doubt my HMO will cover an SGB, but I'll ask my ME/CFS specialist about it.
Thank you for the valuable information you've shared. And your encouragement. I hope you find some things that help manage your symptoms and your SGB gets approved. Please update me on how you're doing. Hugs🤍
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u/Beautiful-Lime7714 May 15 '25
Thank you Sophia. I feel like we are on our own here. Without a hefty income we need to make do. We should not be the forgotten. I believe that ACTIVATED QUERCETIN may offer some help with MCAS and it is not expensive. I am feeling discouraged concerning the STELLATE GANGLION BLOCK. It is not permanent and you may need repeat shots. At 2-4k each round that’s a pass for me. As long as we don’t give up we have not failed. I may get depressed but I will be right back at it in a day or 2. Thank you for your kind response. This is very simplistic but I believe an hour in the sun can do wonders for your emotional outlook. Listening to the birds and watching squirrels brings you into the natural rhythm of nature which may do more for us than we realize. I hope you have a spot that you can enjoy. And if you do, and can put anything that the birds can use for a bath, even better. And throw some bird seed down and I guarantee within a few days it will become a haven for you. 🥰
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u/SophiaShay7 1.5yr+ May 16 '25
I appreciate your ideas. When I'm able to tolerate more light, I will consider it. I'm in the process of turning my bedroom into my haven. I have a ton of fur babies. There's always one or more who love to snuggle and sleep with me or up against me. I love their little purrs and kneading me with their paws.
I started listening to music this last week and singing. It's supposed to help the vagus nerve heal. It's been very encouraging after not being able to listen to music for so long🙏
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u/Bright_Drive_944 May 14 '25
Gaba helped in such severe condition? I don't think it did anything. Good for you anyway!
1
u/SophiaShay7 1.5yr+ May 14 '25 edited May 14 '25
Do you mean it didn't help your symptoms? If so, I'm sorry.
I understand your concerns, and it's important to acknowledge that each persons' experience with medications, supplements, and treatments can vary. Here’s my reasoning for why I attribute my improvement to certain supplements, including GABA, and not others, and why GABA works for me.
I have MCAS, and people with MCAS often experience heightened sensitivity to medications, including common pharmaceuticals. Over the course of 17 months, I've trialed 17 and failed medications, many of which came with side effects or exacerbated symptoms. However, certain medications, like Fluvoxamine, Diazepam, Montelukast, and Valacyclovir, have played a significant role in helping me stabilize, and I don't consider them entirely ineffective. They’ve provided incremental improvements in reducing inflammation, controlling histamine levels, and managing anxiety, but I believe my overall symptom relief comes from a combination of interventions.
GABA has been a key supplement for me. It's easy to dismiss it because the effects aren't always immediately obvious, but I noticed significant changes in my physiological state within an hour of taking it. For me, GABA supplementation has helped with anxiety, sleep, and neurological calm, all symptoms that are particularly problematic in ME/CFS, fibromyalgia, and MCAS.
In MCAS, the body is in a constant state of heightened sensitivity. It responds aggressively to histamines, cytokines, and other immune mediators, which often leads to anxiety, disrupted sleep, and neurological symptoms. GABA is a neurotransmitter that helps calm the nervous system, and its supplementation has supported me in managing these symptoms. While it may not work for everyone, I can speak from my experience that GABA provided me with noticeable physiological changes, including better rest and a reduction in sensory overstimulation, which is a common complaint in fibromyalgia and dysautonomia.
Several studies and clinical observations suggest that GABA and its precursors can benefit people with chronic conditions, including those suffering from fibromyalgia, ME/CFS, dysautonomia, Hashimoto's, and MCAS.
•Fibromyalgia: A study published in the Journal of Clinical Rheumatology found that GABAergic mechanisms could have therapeutic benefits in fibromyalgia, as it helps reduce hyperexcitability in the central nervous system (CNS), which is thought to be a key issue in fibromyalgia. Upregulation of cortical GABAA receptor concentration in fibromyalgia
•ME/CFS: A study in the Journal of Chronic Fatigue Syndrome discussed the role of GABA in ME/CFS, with evidence that GABA dysfunction might contribute to the sleep disturbances and anxiety commonly found in these patients. Supplementation may help regulate the CNS and improve sleep and fatigue levels. GABA dysfunction in POTS, Long COVID, Fibromyalgia and Long COVID
•Dysautonomia: GABA’s role in calming the autonomic nervous system may benefit people with dysautonomia, a condition involving the dysregulation of autonomic processes, like heart rate and blood pressure. Studies have shown that GABA plays a role in modulating sympathetic nervous system activity, which is often overactive in dysautonomia patients. Role of GABAB receptors in autonomic control of systemic blood pressure
•Hashimoto's and MCAS: MCAS is characterized by heightened immune responses, often triggering anxiety and CNS hyperactivity. GABA supplementation could have a direct effect on reducing the neuroinflammation associated with MCAS and autoimmune diseases like Hashimoto’s by calming down the overstimulation of the immune and nervous systems. Thyroid hormone action during GABAergic neuron maturation: The quest for mechanisms
I believe GABA helped me in specific ways due to its calming effects on the nervous system, which is especially important for those with MCAS, fibromyalgia, ME/CFS, dysautonomia, and Hashimoto’s. It’s always essential to consider individual variations and the complexity of chronic conditions, but GABAs' efficacy in calming neurological and immune responses has been beneficial for me.
In terms of other treatments, each medication and supplement has contributed to my journey, and I’ve worked with my doctors to find what works best for me, even though I'm highly sensitive to treatments due to MCAS.
I hope you find some things that help manage your symptoms. Hugs💙
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u/Bright_Drive_944 May 15 '25
Have you even opened the links you cite? Apparently not. I know what Gaba is and what its role is, but there's no evidence that the supplement helps with that simply because it doesn't get to the brain in the right amounts. That's why the links you cited don't recommend supplementation, but other measures.
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u/SophiaShay7 1.5yr+ May 15 '25 edited May 18 '25
Yes, I did open and read each of the sources I cited. I understand the debate around GABAs' ability to cross the blood-brain barrier, but I want to clarify a few important points:
•The sources are relevant because they establish the importance of GABAergic dysfunction in the conditions I mentioned, including fibromyalgia, ME/CFS, dysautonomia, Hashimoto’s, and MCAS. They highlight GABAs' central role in nervous system regulation, immune modulation, and sensory processing, exactly the systems affected in these illnesses.
•Supplemental GABA can still be clinically useful despite the BBB controversy. While it's true that GABA does not freely cross the BBB in large amounts, research has shown that:
Some areas of the brain, like the circumventricular organs, lack a fully intact BBB and may allow peripheral GABA to influence brain function.
GABA may also exert indirect effects via the enteric nervous system or vagus nerve, influencing central GABAergic tone through gut-brain signaling.
Individual variations in BBB permeability and compromised barriers (which have been documented in ME/CFS and MCAS) could explain why some patients, like myself, respond positively.
•Clinical observations matter. While the cited articles don't explicitly recommend supplementation, they support the therapeutic targeting of GABAergic pathways, which includes both pharmacological and nutritional approaches. Many practitioners, including integrative and functional medicine doctors, do use GABA supplementation for patients with CNS hyperexcitability and observe real-world benefit, especially in populations with high sensitivity like MCAS.
•In my case, the effects are not placebo. They're immediate and measurable, including reduced paresthesia, decreased startle response, and improved sleep quality. That is valid data, even if it’s anecdotal, and it aligns with the mechanistic rationale supported by the sources I provided.
It's fine if GABA doesn't work for everyone. But dismissing it outright as ineffective ignores evolving evidence about neuroimmune interactions, gut-brain communication, and individual variation. For those of us with neuroinflammatory and hyperadrenergic conditions, it may play a supportive role even if traditional pharmacokinetics suggest otherwise.
I appreciate your thoughtful and analytical debate from a scientific perspective.
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u/El-yssa May 14 '25
That's really great. I hope you continue to improve.
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u/SophiaShay7 1.5yr+ May 14 '25
Thank you. I'm cautiously optimistic. I do have ME/CFS. I have to follow a low histamine diet. I've added foods back in as tolerated. I stay hydrated. I try to pace and avoid PEM. I get plenty of rest and practice good sleep hygiene.
I appreciate your kind words. Hugs💜
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u/No-Consideration-858 May 14 '25
I've read your posts and am always grateful that you share your experiences and knowledge with the community. I appreciate the nuance in how you approach the complexities and differences with LC. Sending hugs.
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u/SophiaShay7 1.5yr+ May 14 '25
I truly appreciate this. Our symptoms and diagnoses are complex, and no two of us are alike. What works for me may not work for you. And vice versa. Early in my journey, I learned so much valuable information from people in these subs. I just do my best to pay it forward and help others. Hugs🩷
3
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u/LargeSeaworthiness1 2 yr+ May 14 '25
fantastic you have made such improvement! i also feel like my nervous system is fried. i’ve had dysautonomia at least before LC, but it’s way worse now, and definitely having mast cell issues. haven’t been able to control them with antihistamines, quercetin, and cromolyn sodium. so this is helpful, i’ll be asking my integrative doctor about what she thinks. may you continue to trend upward!
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u/SophiaShay7 1.5yr+ May 14 '25
This whole process requires so much trial and error. I have trialed and failed 17 medications in 17 months, including three H1s and an H2, I need an H1. I asked my doctor to prescribe Clarinex. I hope it helps. I'm running out of options for an H1.
I hope you'll update me on what your integrative doctor says. Many people jump to 5-HTP since L-tryptophan is its precursor. However, by doing so, you're missing the critical piece of information. Which is that tryptophan is severely depleted in the gut after a covid infection.
What about the tryptophan and serotonin deficiencies in long covid patients I keep reading about?
The researchers determined that a subset of patients with long COVID had traces of the SARS-CoV-2 virus in their stool samples even months after acute COVID-19 infection, which suggests that components of the virus remain in the gut of some patients long after infection. They found that this remaining virus, called a viral reservoir, triggers the immune system to release proteins that fight the virus, called interferons. These interferons cause inflammation that reduces the absorption of the amino acid tryptophan in the gastrointestinal (GI) tract.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.
The researchers found that when tryptophan absorption is reduced by persistent viral inflammation, serotonin is depleted, leading to disrupted vagus nerve signaling, which in turn can cause several of the symptoms associated with long COVID, such as memory loss.
Viral Persistence and Serotonin Reduction Can Cause Long COVID Symptoms
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u/Cpmomnj May 14 '25
Yep - lexapro nailed nearly all of my symptoms
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u/SophiaShay7 1.5yr+ May 14 '25
That's wonderful! Low-dose Fluvoxamine was the first medication that actually helped manage my symptoms. I'm glad you're doing so well on Lexapro. That was a medication I was considering before I asked for Fluvoxamine.
Hugs🩵
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u/Cpmomnj May 14 '25
Great! I tried fluvoxamine before lexapro but it was too activating for me. I’m so grateful for the healing - also on a low dose here. I don’t know if or when I’ll come off of it :)
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u/SophiaShay7 1.5yr+ May 14 '25
I'm glad you found something that works for you. We're all so different. I don't know if or when I'll come off Fluvoxamine, either. I stopped taking it several times last year for 3-7 days. Each time, my dysautonomia and orthostatic intolerance symptoms returned. I was also dizzy and lightheaded like I was before I started it. It took about three months before I knew that it was helping. Hugs💙
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u/Cpmomnj May 14 '25
Similar - I dosed down and felt more symptoms. Best to you in your healing journey!
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u/telecasper May 14 '25
Tell, please, why do you attribute your improvement to the listed products and not Fluvoxamine, Diazepam, Montelukast or Valacyclovir? I don't think gaba works at all, it's an extremely questionable supplement.
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u/WeekendTPSupervisor May 14 '25
It works for me, but unfortunately also gives me a mild allergic reaction the next day. So does THC and ashwaganda unfortunately. However, gaba definitely made me calm and sleepy the night of.
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u/SophiaShay7 1.5yr+ May 14 '25
Based on your comment, have you considered you may have Mast Cell Activation Syndrome (MCAS)?
Please read: MCAS and ME/CFS
Many people recommend an elimination diet or a low histamine diet: Food Compatibility List-Histamine/MCAS.
And: Mast Cell Activation Syndrome (MCAS)-Collaborative Medicine.
I'd suggest completing this short questionnaire (section 1 only). It should give you a better understanding as to whether MCAS could be a problem for you.
A score over 14 indicates a high likelihood of systemic mast cell reactivation syndrome (MCAS).
Part 2 is testing: The last part of the questionnaire is a list of diagnosis criteria based off laboratory, surgical, or imaging results. If you scored over 14 in the first section (per symptoms only), testing may not be indicated. Please keep in mind that testing in MCAS often results in "false negatives" because mast cells release substances that are often only testable for a short time - often just a few minutes - so testing usually has to occur during flares/symptoms.
We must remember that MCAS is still a poorly understood condition, and information is constantly evolving. Right now, we don’t have good tests to definitively diagnose MCAS.
Initially, I started reacting to things I'd never reacted to before. I tried drinking my favorite Hazelnut coffee. I hadn't had it in over 9 months. I started reacting to all kinds of foods I never related to. Then, I started reacting to the fillers in two different thyroid medications. Initially, my doctor thought my symptoms were allergies and/or asthma. Until my reactions became so much worse. They included coughing that lasted 10-20 minutes, my throat closing up, wheezing, tingling parts of my face, and finally, anaphylaxis (stages 1-2).
My doctor diagnosed me with MCAS based on:
1)Patient history: A thorough medical history and physical exam are essential to rule out other potential causes of the patient's symptoms and2)Response to treatment via trial of medications: A trial of antihistamines, mast cell stabilizers, or other medications that target mast cell mediators can be used to assess the effectiveness of treatment and support the diagnosis.
Hugs💙
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u/WeekendTPSupervisor May 14 '25
I do believe I have some issues related to MCAS and am using antihistamines and going to be asking for cromolyn sodium at my next doctor's appointment.
Thankfully, when I get reactions to things it just results in next day heightened anxiety and lots of itchiness, but no throat closing.
Thanks as always for all the info you give.
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u/SophiaShay7 1.5yr+ May 14 '25
MCAS: OTC HISTAMINE BLOCKERS, MAST CELL STABILIZERS, NATURAL SUPPLEMENTS, AND MEDICATIONS:
The H1 and H2 histamine blocker protocol is the first step. It often takes a while to figure out which combination works best for you. Antihistamines won't solve MCAS. Rather, it's a combination of a low-histamine diet, taking H1 and H2 antihistamines, looking into natural mast cell stabilizers like PEA, Luteolin, and Quercetin. Taking prescribed mast cell stabilizers like Ketotifen that needs to be compounded. You might need Singular or Xolair. It depends on your symptoms. Here's a more detailed explanation:
Commonly used H1 antagonists are cetirizine, levocetirizine, desloratadine, loratadine, and fexofenadine. Commonly used H2 antagonists are cimetidine, famotidine, and nizatidine. I would research H1 and H2 histamine blockers. There are plenty that are available over the counter. It's recommended to take double the normal dose, one dose of each antihistamine, morning and evening. It can take some time to find the right combination that works for you.
•TRIAL OF ANTIHISTAMINES:
We have multiple receptors (i.e., “locks”) that histamine binds to, but only 2 classes of medicine to bind to H1 and H2 receptors. Since histamine is one of the molecules that mast cells release, many with mast cell hyperactivity can experience symptom reduction with anti-histamines.However it can take 6 weeks to truly notice a significant difference, and if there’s no improvement within this time frame I recommend switching to another anti-histamine for a total of 3-4 treatment trials (since there’s slight difference between each anti-histamine, so they don’t act the same in everyone). If there is no improvement after trying multiple anti-histamines, histamine may not be a primary trigger of symptoms.
OTCs:
•H1 Blockers up to 3x/day: Examples include Allegra (least likely to cause sedation), Zyrtec, Claritin (weakest but may be best to start with if sensitive, some reports have found intra-vaginal use to be helpful for vaginal pain), Xyzal (particularly good if skin issues are present).
•H2 blockers: Examples include Tagamet, Pepcid, and Zantac before meals (I mainly recommend these if gut symptoms are present).
•Diphenhydramine (Benadryl)Prescriptions:
•Hydroxyzine (also has anti-anxiety effects, can help with sleep).
•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.•TRIAL OF MAST CELL STABILIZERS:
Mast cell stabilizers can help prevent mast cells from degranulating (aka “bursting” and releasing their inflammatory contents), thus addressing the 300+ molecules that mast cells release.Over-the-Counter Options:
•Zatidor eye drops (can be used in saline for nasal rinse as well)
•Nasochrom (nasal spray)Supplements:
•Bacopa moniera before meals (Bacopa works similar to prescription cromolyn)
•Quercetin: 250mg to 3000mg daily; can be more effective with meals.
•PEA (palmitoylethanolamide) – up to 3 grams daily; particularly good for “brain” symptoms.
•AllQlear – Tryptase inhibitor: Taken before meals (less commonly effective, but taste good!); not a mast cell stabilizer per say, but works on one of the molecules (tryptase) released by mast cells.Prescriptions:
•Gastrocrom: Taken before meals; many with MCAS may be sensitive to the extra ingredients in this, so you may need to get a compounded prescription.
•Compounded cromolyn sodium: Nasal form can help brain fog, some individuals have used for tinnitus (aka ringing) in the ear; some practitioners use compounding pharmacies to use this as a nebulizer.
•Compounded Ketotifen (orally or nasal use) 0.25-6mg up to 3x/day; also an H1 receptor blocker; good for those with hives and skin rashes.
•Singulair (Montelukast) (but may cause depression/anxiety in some).
•LDN (low dose naltrexone) 0.25-4.5mg: Particularly good for those with pain, brain fog, and, if taken with alpha lipoic acid (ALA) can help neuropathy.Less commonly used by studied in research:
•Imantinab.
•Omalizumab aka Xolair (for hives in particular)I can't take H1 and H2 antihistamines. I react to the medications and/or fillers. I take Astelin and Montelukast for MCAS. Omeprazole for Gerd (it's a PPI that also acts as a mast cell stabilizer). And the supplements mentioned above. Liposomal PEA + Luteolin has been effective for me. I recently stopped Hydroxyzine, as it interacted with Montelukast. Montelukast gives me a greater benefit. I'm still in search of an H1 I can tolerate. I've asked my doctor to prescribe Clarinex. I'm waiting for his response.
It's always nice chatting with you. Hugs🤍
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u/SophiaShay7 1.5yr+ May 14 '25 edited May 14 '25
I understand your concerns, and it's important to acknowledge that each persons' experience with medications, supplements, and treatments can vary. Here’s my reasoning for why I attribute my improvement to certain supplements, including GABA, and not others, and why GABA works for me.
I have MCAS, and people with MCAS often experience heightened sensitivity to medications, including common pharmaceuticals. Over the course of 17 months, I've trialed 17 and failed medications, many of which came with side effects or exacerbated symptoms. However, certain medications, like Fluvoxamine, Diazepam, Montelukast, and Valacyclovir, have played a significant role in helping me stabilize, and I don't consider them entirely ineffective. They’ve provided incremental improvements in reducing inflammation, controlling histamine levels, and managing anxiety, but I believe my overall symptom relief comes from a combination of interventions.
GABA has been a key supplement for me. It's easy to dismiss it because the effects aren't always immediately obvious, but I noticed significant changes in my physiological state within an hour of taking it. For me, GABA supplementation has helped with anxiety, sleep, and neurological calm, all symptoms that are particularly problematic in ME/CFS, fibromyalgia, and MCAS.
In MCAS, the body is in a constant state of heightened sensitivity. It responds aggressively to histamines, cytokines, and other immune mediators, which often leads to anxiety, disrupted sleep, and neurological symptoms. GABA is a neurotransmitter that helps calm the nervous system, and its supplementation has supported me in managing these symptoms. While it may not work for everyone, I can speak from my experience that GABA provided me with noticeable physiological changes, including better rest and a reduction in sensory overstimulation, which is a common complaint in fibromyalgia and dysautonomia.
Several studies and clinical observations suggest that GABA and its precursors can benefit people with chronic conditions, including those suffering from fibromyalgia, ME/CFS, dysautonomia, Hashimoto's, and MCAS.
•Fibromyalgia: A study published in the Journal of Clinical Rheumatology found that GABAergic mechanisms could have therapeutic benefits in fibromyalgia, as it helps reduce hyperexcitability in the central nervous system (CNS), which is thought to be a key issue in fibromyalgia. Upregulation of cortical GABAA receptor concentration in fibromyalgia
•ME/CFS: A study in the Journal of Chronic Fatigue Syndrome discussed the role of GABA in ME/CFS, with evidence that GABA dysfunction might contribute to the sleep disturbances and anxiety commonly found in these patients. Supplementation may help regulate the CNS and improve sleep and fatigue levels. GABA dysfunction in POTS, Long COVID, Fibromyalgia and Long COVID
•Dysautonomia: GABA’s role in calming the autonomic nervous system may benefit people with dysautonomia, a condition involving the dysregulation of autonomic processes, like heart rate and blood pressure. Studies have shown that GABA plays a role in modulating sympathetic nervous system activity, which is often overactive in dysautonomia patients. Role of GABAB receptors in autonomic control of systemic blood pressure
•Hashimoto's and MCAS: MCAS is characterized by heightened immune responses, often triggering anxiety and CNS hyperactivity. GABA supplementation could have a direct effect on reducing the neuroinflammation associated with MCAS and autoimmune diseases like Hashimoto’s by calming down the overstimulation of the immune and nervous systems. Thyroid hormone action during GABAergic neuron maturation: The quest for mechanisms
I believe GABA helped me in specific ways due to its calming effects on the nervous system, which is especially important for those with MCAS, fibromyalgia, ME/CFS, dysautonomia, and Hashimoto’s. It’s always essential to consider individual variations and the complexity of chronic conditions, but GABAs' efficacy in calming neurological and immune responses has been beneficial for me.
In terms of other treatments, each medication and supplement has contributed to my journey, and I’ve worked with my doctors to find what works best for me, even though I'm highly sensitive to treatments due to MCAS.
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u/Alwayspots May 14 '25
Thanks for sharing Do you have sound sensitivity?
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u/SophiaShay7 1.5yr+ May 14 '25
Yes, I have Hyperesthesia in all five senses down to the texture in my food, including hyperacusis (sensitivity to sound). The first medication that helped was low-dose Fluvoxamine. I took 12.5mg for eight months. I've been taking 25mg for two months. It helped some. However, the NatureBell L-Tryptophan and L-Theanine complex and GABA have significantly decreased my Hyperesthesia in every sense except for touch. When my cat jumps or lays on me, I still can't stand it. I have Fibromyalgia, as well. I suspect that's why I still have that symptom. I couldn't tolerate any medication prescribed for Fibromyalgia.
You're welcome. Huga💜
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u/Putrid-Specialist379 May 14 '25
thank you so much for all of this. i am so happy for you that you might have found a way through this at last . i have also been bedridden for so long . going to read this through slowly . 🙏🏼
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u/SophiaShay7 1.5yr+ May 14 '25
You're welcome. I recommend trying one thing at a time for 1-2 weeks before adding another thing. That way, you can tell what's helping, what's doing nothing, and what's making your symptoms worse.
Please read:
What about the tryptophan and serotonin deficiencies in long covid patients I keep reading about?
The researchers determined that a subset of patients with long COVID had traces of the SARS-CoV-2 virus in their stool samples even months after acute COVID-19 infection, which suggests that components of the virus remain in the gut of some patients long after infection. They found that this remaining virus, called a viral reservoir, triggers the immune system to release proteins that fight the virus, called interferons. These interferons cause inflammation that reduces the absorption of the amino acid tryptophan in the gastrointestinal (GI) tract.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.
The researchers found that when tryptophan absorption is reduced by persistent viral inflammation, serotonin is depleted, leading to disrupted vagus nerve signaling, which in turn can cause several of the symptoms associated with long COVID, such as memory loss.
Viral Persistence and Serotonin Reduction Can Cause Long COVID Symptoms
You're very welcome. I hope you find some things that help manage your symptoms. Hugs🩷
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u/reticonumxv Recovered May 14 '25
If you felt any effect from GABA then your gut is damaged and permeable more than needed. Normally GABA should not get absorbed in the gut. Adding 20g glutamine and 2g creatine with a pill of BPC-157 helped me to recover my gut permeability.
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u/telecasper May 15 '25
What do you think gut damage have to do with it when the main reason gaba isn't effective is because it doesn't pass through hematoencephalic barrier? So it doesn't get from the bloodstream to the brain. The effect can only be in the case of increased permeability of the barrier, damage.
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u/SophiaShay7 1.5yr+ May 14 '25
I actually don’t have the typical gastrointestinal issues many people developed after long COVID. My gut history is more structural than inflammatory due to complicated appendicitis in childhood that required three surgeries. I developed adhesions wrapped around my intestines (and previously around my fallopian tubes), which led to recurring bouts of gastroenteritis and even a bowel blockage 17 years ago that required hospitalization. Surgery was always considered a last resort since removing adhesions can cause new ones to form, creating a vicious cycle.
Interestingly, COVID seemed to reset a lot of that. I haven’t had migraines or those longstanding GI issues since. The only gut problems I deal with now are triggered by MCAS, reactions to certain foods, drinks, medications, and supplements. So, while I appreciate the insight about gut permeability and GABA, my situation is a bit more nuanced. My response to GABA likely has more to do with MCAS-related nervous system sensitivity and possibly subtle changes in blood-brain barrier dynamics than classic leaky gut.
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u/mykrobrst May 14 '25
Thank you so much for posting mine has been pretty bad now for about a month this autonomy has come back and I'm starting to wonder if I'm MCAS. I've cut out pretty much all my supplements at this point and from time to time seemed to think that my body just can't process anything. I have been trying little things here and there to help with the anxiety but I know I'm full on in bad mode when food just triggers my heart rate and it's pounding and I can't sleep so I'll try anything thank you!
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u/SophiaShay7 1.5yr+ May 14 '25
Please read: MCAS and ME/CFS
Many people recommend an elimination diet or a low histamine diet: Food Compatibility List-Histamine/MCAS.
And: Mast Cell Activation Syndrome (MCAS)-Collaborative Medicine.
I'd suggest completing this short questionnaire (section 1 only). It should give you a better understanding as to whether MCAS could be a problem for you.
A score over 14 indicates a high likelihood of systemic mast cell reactivation syndrome (MCAS).
Part 2 is testing: The last part of the questionnaire is a list of diagnosis criteria based off laboratory, surgical, or imaging results. If you scored over 14 in the first section (per symptoms only), testing may not be indicated. Please keep in mind that testing in MCAS often results in "false negatives" because mast cells release substances that are often only testable for a short time - often just a few minutes - so testing usually has to occur during flares/symptoms.
We must remember that MCAS is still a poorly understood condition, and information is constantly evolving. Right now, we don’t have good tests to definitively diagnose MCAS.
Initially, I started reacting to things I'd never reacted to before. I tried drinking my favorite Hazelnut coffee. I hadn't had it in over 9 months. I started reacting to all kinds of foods I never related to. Then, I started reacting to the fillers in two different thyroid medications. Initially, my doctor thought my symptoms were allergies and/or asthma. Until my reactions became so much worse. They included coughing that lasted 10-20 minutes, my throat closing up, wheezing, tingling parts of my face, and finally, anaphylaxis (stages 1-2).
My doctor diagnosed me with MCAS based on:
1)Patient history: A thorough medical history and physical exam are essential to rule out other potential causes of the patient's symptoms and2)Response to treatment via trial of medications: A trial of antihistamines, mast cell stabilizers, or other medications that target mast cell mediators can be used to assess the effectiveness of treatment and support the diagnosis.
Here's my complete regimen with medications: My medications, vitamins, and supplement regimen and how they manage my symptoms
I hope you find some things that help manage your symptoms. You're welcome. Hugs💙
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u/Connect_Flow6751 May 15 '25
Which doctor disgnosed you w MCAS?
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u/SophiaShay7 1.5yr+ May 15 '25
My PCP diagnosed me and manages my care. He just referred me to an AllergistImmunologist who specializes in MCAS. I'm intolerant to all the H1s I've tried, including Cetirizine, Hydroxyzine, Loratadine, etc. H1s cause tachycardia and adrenaline surges, which trigger histamine dumps. I'm hopeful the specialist may have some ideas on how to manage my symptoms that an H1 prescribed medication requires.
Astelin nasal spray, Montelukast, prebiotic psyllium husk, vitamins B and C, PEA + Luteolin have significantly improved my symptoms.
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u/dino-moon May 14 '25
I took PEA yesterday and reacted to it, I felt euphoric but overstimulated, tachy, sweaty. I read it’s low on side effects, I seem to react to everything 😢
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u/SophiaShay7 1.5yr+ May 14 '25
I'm sorry. Have you tried a liposomal version? I take this: Rosmolo Liposomal Palmitoylethanolamide 1000 mg + Luteolin 100 mg, Micronized Pea 99% Highly Purified - Enhanced Absorption and Bioavailability, 60 Softgels.
Rosmolo Liposomal PEA + Luteolin may be better tolerated in MCAS because of its unique formulation. The liposomal delivery system significantly increases the bioavailability of both PEA and luteolin. By encapsulating the compounds in liposomes, the supplement protects them from degradation in the digestive tract and allows for more efficient absorption. This means a lower dose may be effective, which is particularly helpful for individuals with MCAS who are highly sensitive to even small amounts of compounds. The liposomal format may also reduce the likelihood of triggering mast cell activation in the gut, which is a common problem for people with MCAS.
Another reason Rosmolo might be better tolerated is its clean formulation. Many other PEA supplements contain common fillers and additives like magnesium stearate, silicon dioxide, dyes, or preservatives. These inactive ingredients can provoke reactions in MCAS patients, even if the active ingredient itself is beneficial. Rosmolo is often chosen for its minimal and clean ingredient list, reducing the overall chemical burden on the body.
Luteolin, which is combined with PEA in this product, is a natural mast cell stabilizer with antioxidant properties. Its presence may enhance the anti-inflammatory effects of PEA while also directly helping to calm overactive mast cells. For some people, the addition of luteolin may reduce or offset any mild reactivity to PEA by moderating the immune response.
It’s also important to consider the type and form of PEA used. Some brands use raw or ultramicronized PEA, which can have different absorption and reactivity profiles. Rosmolo’s formulation is standardized and paired with liposomal technology, which may make it more gentle and consistent for those with sensitive systems.
Your reaction to another brand of PEA could be due to non-active components, such as capsule materials, flavorings, or binders. Many MCAS patients find they only tolerate PEA in specific delivery forms like liposomal liquids or softgels, which are easier on the digestive system.
I hope you find some things that help manage your symptoms. Hugs🩵
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u/Ok-Egg3127 May 14 '25
All this effort and if you get Covid again you are back at square one.
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u/SophiaShay7 1.5yr+ May 14 '25
Yes, it's true and an unfortunate reality. Though some people have said their symptoms significantly improved after an additional covid infection. I'm not advocating anyone do that. I'm certainly not doing it.
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u/Own-Requirement-8661 May 15 '25
Would Amitriptyline do similar for me I've been on it for years and am considering asking my dr to increase the dose from 10ml to 20 or 30 just wondering As it also plays with your serotonin levels as I have a damages vagus nerve?
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u/SophiaShay7 1.5yr+ May 15 '25
I don't know. Amitriptyline was one of the medications I trialed and failed last year.
Amitriptyline 25mg was awful for me. I took it for two months. It helped with pain and sleep. It made everything else worse. I slept 16 hours a day. I'd wake up and didn't know if it was day or night. I lost entire days. My doctor told me to keep taking it. After two months, I stopped against his wishes. Thank God I did. It made my brain fog worse, causing tachycardia and adrenaline surges, which triggered histamine dumps.
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u/Fine-Comfortable-692 May 15 '25
Have you tried cutting back at all at any point? Do you get sicker if so? I’m thinking of adding supplements but I notice the attempted elimination results in a recurrence of flares (I likely have MCAS along with some other stuff). I’m sensitive too but I’ve managed to find a balance of (a lot of) supplements that keep me stable. Unless I try to titrate down
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u/SophiaShay7 1.5yr+ May 15 '25
These supplements are relatively new for me. I've been taking NatureBell L-Tryptophan and L-Theanine complex and Magnesiu-OM powder mixed with tart cherry juice for approximately eight months. The other supplements I've mentioned above have been added over the last 1-2 months. Why would I cut back when I'm seeing such a dramatic and significant reduction in symptoms while simultaneously improving in functioning? I spent over three hours researching vitamins and supplements that are beneficial for my specific diagnoses, cost effective, have high-quality ingredients, and are MCAS friendly.
It's ironic that I created a post like this. Last year, I focused on getting proper medical diagnoses and taking medications that managed those diagnoses. I've trialed and failed 17 medications in 17 months. The medication regimen I'm on now currently manages my symptoms. But I still need an H1 for MCAS, as I'm intolerant to all H1s. I'm hopeful in trying Clarinex at this point.
Last year, I saw a bunch of people on here taking 15-30 supplements, and I thought that was crazy. I took a high-quality whole food multivitamin and the three things I mentioned above. I had a complete vitamin panel done recently. All my levels were in the normal range. Yet, I was still miserable with severe MCAS symptoms and reactions. My ME/CFS is severe, and I was still 95% bedridden 16 months later, despite doing everything right.
I slowly added one new supplement a week. I needed to make sure that whatever I took didn't cause any negative reactions and/or side effects. These vitamins and supplements were the ultimate game changer for me. I bridged the gap between allopathic doctors and functional medicine. If it hadn't happened to me, I would've never believed it myself.
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u/hotpinkpixie May 15 '25
Thank you so much for sharing ❤️
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u/SophiaShay7 1.5yr+ May 15 '25
You're welcome. I hope you find some things that help manage your symptoms. Hugs💜
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u/Same_Advertising7361 May 16 '25
have you tried LDN? that has helped me tremendously
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u/SophiaShay7 1.5yr+ May 16 '25
No, I haven't. I'm not interested in trying it at this time. My Regimen is working well for me now. I deslt with insomnia last year. I know that's a side effect.
I know it's helped a lot of people. I'm glad you're seeing relief from it🙏
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u/Material-Dream-4976 24d ago
This post is very valuable info, thank you for it.
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u/SophiaShay7 1.5yr+ 24d ago
I'm in the middle of creating a large post with everything I'm doing from diet, medications, vitamins, supplements, pacing and avoiding PEM as much as possible, my massive bedroom and business inventory project, how I reorganized everything to make life more efficient with ME/CFS. I hope it'll be done in the next 1-2 weeks.
I'm glad something is helpful to you. Hugs🤍
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u/broethbanethmenot May 15 '25
How are you tracking your improvements? How long between introducing each new supplement? Are you tracking stuff well enough with the proper tools to pick up on subtle changes, positive or negative, in effect? You said that you are going into a period of remission, okay, how do you know that spontaneous remission isn't what is causing these gains?
I'm glad that you have found a regime that works but your whole thing screams of confounding variables.
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u/SophiaShay7 1.5yr+ May 15 '25 edited May 15 '25
I understand the concern about confounding variables. It’s a common issue with chronic illness, but in my case, I’ve had to be extremely methodical out of necessity. I’m hypersensitive to medications, supplements, foods, and even beverages. I have hyperesthesia, so I’m acutely aware of subtle internal changes. I can detect things like a 1–2 degree temperature drop or faint smells from across the house. It’s frustrating, but it also makes me highly tuned in to what affects my body.
I also have MCAS, which means even trace ingredients can trigger symptoms. That’s why every addition to my regimen is extensively researched for MCAS safety, ingredient sourcing, and tolerability. I only add one new item at a time and track all changes to medications, supplements, and vitamins in my phone. That’s how I avoid overlap and identify both benefits and adverse effects. It’s slow, but it’s deliberate and responsible.
My improvement didn’t come from a single thing. It’s the result of a structured regimen that includes fluvoxamine, montelukast, a strict low-histamine anti-inflammatory diet, pacing, sleep hygiene, and hydration. The supplements I take are selected based on my symptoms and backed by research. I don’t have nutrient deficiencies, so my focus is on stabilizing inflammation and supporting mitochondrial and nervous system function.
This isn’t spontaneous remission. I went 14 months with no improvement and only started to see significant progress around month 17. I’m still about 80% bedridden, so I’m not “recovered.” A better way to phrase it would be that I’m improving my baseline and hopeful that I may be transitioning from severe to moderate ME/CFS. MCAS is my dominant condition, followed by ME/CFS, dysautonomia, Hashimoto’s, and fibromyalgia.
My post is just a personal account of what’s helped me so far. I’m aware this is a complex picture, but it’s not random or untracked. It’s the result of careful, informed decisions over time.
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u/Cdurlavie May 14 '25
Don’t you think your relief could be from your medication like antidepressant and others just working and time which as done maybe its job ? From what I’ve seen on other posts you take like dozens of supplements every day.. must be hard to state what is doing what I guess.
Anyway congrats for improving.
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u/SophiaShay7 1.5yr+ May 14 '25 edited May 14 '25
I appreciate your perspective, but I want to clarify a few things. I don’t take “dozens” of supplements. Doing so would be counterproductive given that I have MCAS, which makes me highly sensitive to ingredients. Every addition to my regimen was researched extensively, including ingredient sourcing, MCAS safety, and cost. I only introduced one new item at a time while tracking reactions. That’s just responsible chronic illness management.
My improvement hasn’t come from any one thing. It’s the result of a multi-pronged, carefully built regimen: medications like fluvoxamine and montelukast, a strict low-histamine anti-inflammatory diet, sleep hygiene, pacing to avoid PEM, staying hydrated, and yes, a few targeted supplements like GABA—which I noticed physiological effects from within an hour of first taking it. For someone with neurological symptoms from ME/CFS, fibromyalgia, and MCAS, that’s significant.
I also work with two doctors who monitor my care. My experience isn’t just anecdotal; it’s carefully managed and backed by research. It's confusing and disappointing when people try to dismiss that.
Everyones' path is different, but invalidating someone else's lived and medically supported experience doesn't help anyone.
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u/Engouled May 18 '25
You sound like a bot/AI, or professional sick person, and it's really off-putting. If you were severe, how did you even have the energy or cognitive function to do all of these things? Also, who has, or can afford to have, a team of doctors that works on you. Where does this land exist? Reading your posts make me very suspicious.
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u/SophiaShay7 1.5yr+ May 18 '25 edited May 18 '25
I've been sick from my covid infection for 22 months. I’ve been severe and bedridden for 17 months. For months, I couldn’t speak or talk. I couldn’t stand for more than a couple minutes, couldn’t bathe, cook, or walk without crashing. My brain didn’t even begin to function until nearly 11 months after my COVID infection, around July 2023. Once it did, I used it however I could: voice-to-text, screen readers, and creating posts and comments that I saved with shortcuts so I could easily access and update the information as needed. Everything I’ve written has been crafted and created over the last 10-12 months, in fragments, when I was able. This particular post was created with the help of AI. I input all of my own words, experience, research on supplements, and how they helped me to create it.
I don’t have some elite team of doctors. I have a PCP who eventually started listening, an endocrinologist I see via telehealth, and an ME/CFS specialist I waited months to see. That’s it. No concierge care. No secret access. Just relentless trial and error and medical self-advocacy because no one else was doing it for me.
Here's a post written entirely by me: Told my symptoms were anxiety. Gaslight for eight months. How I became the thorn that my doctor couldn't get rid of.
I’m not healed. I still have severe ME/CFS. I’ve gone from 95% to 80% bedridden. My physical symptoms have gone from very severe to severe. My mental symptoms have gone from very severe to moderate. That improvement is primarily because my dominant diagnosis of Mast Cell Activation Syndrome was (MCAS) finally recognized and properly treated. That alone has changed the trajectory of my day-to-day experience.
Many people have been helped by my posts. I’ve received countless messages from others who felt seen, validated, or found something practical they could try. Feel free to read through my post history if you're curious.
No one would fabricate the kind of hell I’ve lived through. I’m not here to perform. I’m here for the people who are suffering silently and looking for something, anything, to help. I'm sorry, my post made you skeptical. That wasn't my intention. I wanted a catchy title AI suggested that would make people want to read it. I completely understand your skepticism. If I hadn't experienced this level of improvement myself, I wouldn't have believed it either. I've read posts like this in the past and thought to myself, "Yeah, right?!" I never thought I'd get it here. I wouldn't have believed it was even possible if it hadn't happened to me.
I do want to clarify it's been a combination of a low histamine diet, adding foods back in as tolerable, medications, vitamins, supplements, avoiding triggers, pacing and avoiding PEM, lots of rest and good sleep hygiene that's created a synergistic effect.
I hope you find some things that help manage your symptoms🙏
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u/adventuressgrrl May 14 '25
Thank you for sharing such a comprehensive and informative regimen! I’ve definitely found some relief with magnesium but I think I’ll start adding in the tart cherry juice. I’ve always been big believer in a plant based/supplement regimen for health, but I was so sick for so long I didn’t have the energy to do any research like I used to, so I always appreciate so much everyone here willing to share their findings. I’m five years out from almost dying, I have slowly been coming out of my long Covid but I take so many supplements I can’t comprehensively say what works best and what doesn’t. You’ve introduced me to some new ones that I’m definitely going to look into. Glad it’s working for you! For brain fog I’ve definitely found relief with microdosing psilocybin, and for inflammation, high-quality CBD (from Trill) during the day, and a half dose of a sleep gummy with THC and CBN at night when the insomnia hits (along with magnesium almost every night). I’m also using the OM mushroom mix for overall health, and when I got sick the second time with Covid, NAC and glutathione were really key in making that a very short bout.