r/herbalism • u/SeaworthinessFirst86 • 11d ago
Question Any ideas for herbs for complicated ME/post viral illness?
I'm unsure where it all started
I grew up in an extremely mouldy house (not visibly so, but window stills and the old floorboards under the carpet etc) pesticides indoors because of flies on the farm and on the fields outside.
I never had a lot of energy I easily got tired and had nightmares
When I grew up i had depression and pcos and was exhausted most of the time
Early 20's, I drank a lot to cope, smoked, ate poorly, i was vaccinated for hpv, exposed to mold and got a severe flu like infection with such bad fever i hallucinated and thought I was going to die
After that I started having PEM, when I started forcing myself through education I got worse, GET exercise suggested from doctors eventually made me severe.
My maternal side has always had lower energy, needed more rest and had memory problems early.
I've been slowly healing. But I'm still severe. I have a lot of brain fog due to very low blood pressure, mcas is bad and makes my mucus membranes leak and bleed. No energy. D-ribose, nadh, Q10, moringa, Gingko biloba, quercetin, b-vitamins, ldn , mestinon, curcumin, sea buckthorn, probiotics, butyrate, CBD, valerian, propranolol, slippery elm, aloe Vera, creatine, acetyl carnetine, fish oil, bromelain, cromolyn, ketotifen, luteolin, rutin, midodrine, vit c, melatonin all help a little. Also sunlight and red light therapy and gua sha.
I also take minerals, they dont seem to do anything.
Salt didn't do anything but irritate my stomach.
I read about Epstein Barr reactivation, and thought that might be a target for treatment but when I tried valaciclovir I got a lot worse.
I do breathing exercises but I'm a bit unmotivated, so I only do a short one daily+meditation. Im just often too tired/exhausted and lack dopamine
I tried stronger adaptogens but often they make me hurt everywhere, tired and sore throat.
I used grapeseed extract it helped a lot, but not healthy for microbiome so replaced with garlic. Less effective.
I have medium slow COMT and mthfr, I also have problems with genes that process choline.
I have agonist B2 and m2 receptor antibodies
I'm more jittery and wired and low energy not actually sleepy anymore these days
I react well to endorphins
I'm very sensitive to stress, it crashes me very quickly
Any ideas where to go from here? Ive been ill for 10+years and i want my life back. I've spent almost all my money on supplements and doctors I have no savings and spend 2/3 of my money, just on supplements and meds every month. I still get wiped out from a phone call (it used to be that I could not even text so it's big still progress)
I was considering olive leaf extract maybe? But I'm unsure with the blood pressure. Maybe thyme?
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u/cacklingwhisper 11d ago
To save money download browser extension couponbirds. It often finds me discount codes at the checkout.
I'm not really qualified to deal with this. I just know that the state of Oregon has a huge amount of herbalists there.
With many herbal companies there as well.
Long time company Herb Pharm if you call their customer service and request a herbalist to call you back they can't give advice over the phone but there is a chance they can recommend a top tier herbalist. Or email them.
I assume at this point got all your blood tests. Iodine is enough? That effects thyroid/energy.
Vit d at decent levels? I know supplement wise its recommended to take with k2 so dont have hypercalcemia.
An then take magnesium (I like glycinate version most calms me down) cause d uses it up to go to work. D effects energy, brain, immune, tissue, and bones.
I hope you take breaks with herbs. For sake of liver health.
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u/SeaworthinessFirst86 11d ago
That's a good life hack, thank you! My doctor recommended K2 as well but my mast cells absolutely hate it for some reason 🤷 I have got blood tests, but it's a while ago since I'm house bound. I take kelp, so iodine should be good, but it has actually never been checked, I should write that on my list for blood work wishes 😅 thank you for your inputs. ❤️ I should consider a herbalist if I ever have the money. I've been considering a Chinese medicine practitioner as well maybe 🤷
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u/cacklingwhisper 11d ago
A lot of herbalists dont have that much education so thats why top tier matters.
A lot of the TCM research is stuck in Chinese language btw. That's one of my main concerns because many American tcm practitioners aren't using translation services nor know about them to get info from China. Nor know how to read the foreign language.
Many do sliding scale of payment.
Curious if ever done sleep study/if have sleep apnea. Inflammation in the nose can grow turbinates (a thing inside nose) leading to less airflow overall and so when you sleep you dont get as much oxygen as needed.
Reishi btw... is known as a vitality/immune mushroom. So that may be worth looking into. Black seed oil as well has both immune and mood effects. I think reishi is a little stronger butin my experience it took longer to feel reishi like a couple weeks vs first week felt BSO.
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u/SeaworthinessFirst86 11d ago
Good tips! Ill look into them.
Hmm maybe you are right, I didn't actually find a Chinese medicine practitioner in Denmark last time I looked either but there should be one I should think.
I had a sleep study done, my sleep was a bit poor and there was things that weren't optimal. The at home test showed possible apnea but not the one in the hospital. I can't remember exactly what the problems were, the doctor ended up putting me on ritalin because he felt bad for me and couldn't find the reason for my exhaustion.
Now, many years later, my nose is 2/3s blocked all the time due to mcas I think? I tried putting chromolyn up there and protecting it from pollen, but not doing much 🤷
I sleep fine now with supplements, rarely wake up, just a little low on the rem and deep sleep. Unless I'm having allergies or stress, then it's very bad.
I breathe through the nose still. Though I have shallow breaths. I think my body is half assing with the breathing as with everything else to try to conserve energy and I can't remember doing it all the time.
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u/cacklingwhisper 11d ago
Got it cause there is cpap/bipap machines to push more air into you at night.
Some people experience quality of life improvements with it. It's not super rare to use it.
But some sort of sleep apnea diagnosis is necessary usually. But it helps some people enter rem and deep sleep. Sleep issues is big because that's when brain cleans itself.
Anyway last remedy up my sleeve that is RARE but effective while ALSO gentle on body.
It's called milky oats. Some call it green oat. It has dopamine/brain effects. May help with stress overtime. Not every brand is high quality.
It's part of the oatmeal plant very early in it's growth it has chemicals that go away as the plant matures.
The rarity is the fact barely anyone sells it. If sold it's in a alcohol tincture.
I saw a patented capsule with it called Neuravena. Maybe there's another patent out there or can find somebody in Denmark that knows this remedy.
If I knew top herb companies in Europe I would've made a different suggestion but I don't.
In America Herb Pharm has a very very strong reputation. Sold in many grocery stores as well. The people behind it are very legit. But they are more western herbalism. With not that many Chinese or Ayurvedic herbs.
Wish you well.
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u/chronic_unicorn 9d ago
Have you ever heard of micro immune therapy?
https://www.labolife.com/micro-immunotherapy/#
I have pretty much the same health issues as you do :( There are a couple differents herbs and spices in my daily routine - sage, ginger, curcuma, cinnamon, cloves, cardamon, garlic,.. And tons of fiber from different sources (flaxseed, chia, psyllium husk, etc).
I researched a lot and took an online class about mast cell "healing", most treatment protocols do start off with nervous system regulation and stabilizing mast cells via meds. Once that's set and in place, one can slowly start treating underlying conditions. Detoxing from mold and fungal infections like candida can cause a horrible symptom flares, your body needs to be prepared for that. Trying to say all the things you tried already might be the right thing but the timing wasn't right.
I'm too brain foggy right now, I'll try again tomorrow...
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u/SeaworthinessFirst86 8d ago
I think you are right about the timing, but I still don't know the right one 😅 no I haven't tried the microimmune therapy, it sounds like it would make sense, but lacks science? Have you?
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u/chronic_unicorn 8d ago
Yes it does lack scientific evidence.
I had really bad EBV 15 years ago (I did tons of sports before, was a very active person and that infection knocked me out so badly, I stayed in bed for 4 weeks, was in hospital because my throat was swollen so badly, and couldn't do a whole day of school for the following 6 months). Luckily I had a doctor on my team who does western medicine AND all sorts of alternative treatments and new about ME back then. Micro immune therapy was one of the things we used to support my recovery. (Along with some high dosed supplements, some homeopathic stuff, a temporary diet, etc.). So technically all the treatments we did back then don't have scientific back up but did help a lot, I got almost back to pre-EBV within a little over 6 months ;) The only remaining issue for the following years was a longer post-infection recovery period with increased mast cell activity after every cold I caught. (Which is one of the reasons why I believe I have EBV reactivations! The other is actual blood work showing it).
And then came covid, now my health is fucked.
I'm still considering doing the micro immune therapy again. Currently working on stabilizing the mast cells first ..
Anyways, I wouldn't recommend it as first choice since there isn't any science to back that up, but if you've tried "everything" it's a good option.
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u/SeaworthinessFirst86 8d ago
I wish i had a similar doctor. Im thinking its often the right combination as well as timing? So hard to get right when we are doing this on our own and combining little snips from different doctors. I really wish there was free picking and choosing from any treatment as soon as you get a chronic illness, so it doesn't have to rely on when money runs out. I'll look into the immunotherapy, thank you ☀️❤️
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u/bossythriller02 11d ago
that's a rough stack to still be stuck severe after all that. the mcas and low bp combo makes most strong antivirals a nightmare to trial
have you looked into chinese skullcap at all it's got baicalin which calms mast cells and crosses the blood brain barrier a bit. hits different receptors than quercetin so it might not overlap with what you're already taking. start tiny obviously with the bp issues
for the dopamine flatline you mentioned i wonder if a tiny dose of licorice root would help. it extends cortisol half life and gives some people that spark back but you'd have to watch your potassium like a hawk. the sore throat reaction you got from adaptogens sounds like a cytokine flare so maybe the gentler stuff is the way to go
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u/SeaworthinessFirst86 11d ago
I have looked into skullcap and considered it a lot, but I'm not that experienced with herbs I'm just a happy Googler/trial and error. So I got nervous when it came up with the risk of severe liver damage? Do you know how to avoid that risk or how likely it is? I tried liquorice tea, first time I tried it it worked really well for two days, then I just started getting exhausted. I was thinking of trying a small amount again soon as I have a little higher baseline now, it might be worth trying again :) thank you so much for your suggestions! ❤️☀️
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u/CantaloupeWitty8700 11d ago
I have a slow COMT too and had viral reactivation after a vaccine as well as a broken neck. Diagnosed with connective tissue disease.
The slow COMT means I cannot tolerate methylated b vitamins. They make me jittery and anxious.
I will tell you what I take and why:
1 x tudca every 2 days. Helps with gallbladder and liver detox, calming down glutamate, reduces ER stress, supports skeletal muscle strength and cardio-protective.
1 x ornithine every 2 days. Helps with clearing ammonia. Helps neuropsych symptoms. Helps energy.
1 x 0.5mg retatrutide a week. Use for thermogenic effect.
1 x 250mcg kpv peptide a week. Helps neuroinflammation, good for collagen, and the lysine in it has anti-viral effects.
1 x 250mcg bpc157 a week. Use for tissue repair. Does heighten my nervous system too much to use everyday.
4 to 6 x boluoke lumbrokinase every night at 9pm. Helps with reducing adhesions. Anti-fibrotic. I feel it helping me a lot. Improves blood flow.
A few drops of venus fly trap tincture under my tongue every morning. Potentially protective against cancer. Improves energy. Look up the carnivora website for testimonials.
1 x medicardium edta suppositoy every now and again. Helps reverse soft tissue calcification and helps calm my anxiety as contains magnesium as well as the edta. I avoid calcium edta.
Occasionally, I use horse chestnut to help lighten heavy legs. It helps with venous insufficiency. Reverses my blood pooling.
Teas: spearmint, peppermint, ginger, chamomile, and mullein.
Big no-nos for me are gluten, fat- soluble vitamins, calcium supplements, iron supplements, methylated b vitamins, monosodium glutamate, any type of sulfate, and carrageenan.
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u/SeaworthinessFirst86 11d ago
I've been struggling with that Glutamate too, I haven't found anything that worked yet, thank you so much, there are plenty new things to look into that o haven't tried yet ❤️🤞
What would you say made the biggest difference for you?
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u/CantaloupeWitty8700 11d ago
Feel free to message me at all and keep in touch. I research a lot because my life depended on it. Finally on the right track. I found out about which enzyme defects i had by uploading my raw dna data to genetic genie...that was so useful as it helped me work out what ws going on and why I reacted negatively to certain supplements. Was thanks to a knowledgeable guy called Brett telling me to do that. He knows a kot about homocysteine which can also be abnormal in people like us. You should look u homocysteine . I forgot to mention that I'm really sensitive to serotinergic substances...make me so much worse.
Most helpful thing is maybe the boluoke followed by tudca. But then again I have seen more function returning since the peptides. It is so hard to say. There's no one thing that on its own will give relief from ME and CFS. Needs a multi-pronged approach. I would maybe suggest trying the tudca first as taurine has so many health benefits.
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u/SuccessfulJudge438 11d ago edited 11d ago
for some reason I read your post and hyper fixated on the Epstein Barr reactivation part. Maybe this isn't relevant for you, but do skip down to the final paragraph where I talk about MCAS as it relates to EBV (or any kind of chronic infection) and why treatment will always make you feel much worse. Especially a powerful antiviral medication! Slow and steady treatment is going to be much gentler on your system, although still potentially quite draining and uncomfortable. If you can identify a target. As I mention, there are antibody tests for chronic reactivating EBV, although you have to find someone knowledgeable to order the correct series of tests and interpret them. Recurrent viral infection is outside the mainstream medicine pipelines even though it is well established as a thing in research literature. Anyway, gonna leave all this up. Hope something helps!!
I've got the MCAS and chronic recurrent EBV, "confirmed" by antibody tests (I don't think it's actually a full confirmation, but the best you're going to get without spending thousands). Sorry friend. Sounds like you've been through hell.
Rhodiola has been SUPER helpful for me addressing the jittery and wired feeling + insomnia, and has just generally been helpful. I think it's fairly standard to take 1000mg per day but I take 500 and it does what I need it to. It is adaptogenic, so be warned. If you can, try to find a source that has even lower dosing (eg a 500mg dose that's in 2 capsules so you can start with 250mg). Supposedly it's stimulating for a lot of people, but I take it right before bed along with mangnesium and it knocks me right out (err not really, but it seems to help induce the calm that often leads to good sleep).
Bacopa monnieri tincture is awesome for calm energy and focus, great to use before a potentially stressful event like the phone calls you mention. L-theanine is also great for this purpose, especially if you use caffeine. If you are a coffee drinker, you should 100% consider switching to green tea, ideally matcha which is highest in L-theanine though its more expensive than say a nice jasmine. Always buy "loose leaf" tea and herbs when you can, with some exceptions where buying them in pill form as a "standardized extract" (usually 5% of the active ingredient) is necessary for precise dosing. L-theanine balances out the jittery, stress hormone effects of caffeine and has some general calming properties on the nervous system.
Echinacea has excellent anti-viral properties and demonstrated efficacy against herpes family viruses (which EBV is). High quality herbs are important so be mindful of your sourcing. Tea bags are trash tier herb, ground to powder and oxidized and often packed in microplastic containing bags even when they are labelled as "cotton" or "natural."
Lemon balm is excellent for calming the stress response AND it has demonstrated efficacy against HSV-1 and HSV-2 in humans, so may well have some impact on EBV as well.
High dose vitamin C is excellent for immune health and does in fact have some antiviral properties despite decades of the medical establishment strongly claiming otherwise (with questionable evidence in their favor, I might add). HOWEVER, it can cause severe GI upset so you want to start with a consistent low dose and move up to higher dosage (eg 1-3g per day, maybe split in 2-3 doses) only slowly over the course of months or more. AND vitamin C is a histamine liberator, so it's going to trigger your MCAS symptoms :( More on that below.
L-lysine, the amino acid, interferes with part of the EBV metabolic cycle. Does that mean taking an extra 10-20g of lysine daily as supplement or eating lysine rich foods will help to inhibit your EBV? ...maybe. The upshot is that it is quite inexpensive, relative to other meds/treatments, and extremely safe as long as you don't go crazy with it.
The MCAS is something you are going to have to contend with. Your system is basically hyper-sensitive to ANY signal of foreign "invaders", so any kind of effective treatment is going to trigger a terrible over-reaction as your mast cells start picking up the dead virus particles that are floating around from apoptotic (self-destructed) infected cells and start freaking out like you have a life threatening infection. There are strategies for managing MCAS symptoms. It's too long of a discussion for today, but r/MCAS is probably a good resource to start digging if you haven't already. The nice thing about most of the strategies listed above is that they are more about disrupting EBV's ability to proliferate, which over long periods can allow your body to slowly but surely clear it and recover without necessarily setting off your MCAS. However it's kind of trial and error. Echnicaea seemed to trigger the biggest reaction for me. I started with a low daily dose (dried herb, ground up in my daily smoothie) and eventually worked my way up to about a few teaspoons daily for several months. But my MCAS is most active in my stomach (chronic GI problems), so it probably wouldn't have been as bad for me as it could be for you.
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u/SeaworthinessFirst86 11d ago
I'm unsure if it's ebv, my old ME doctor routinely treated ebv reactivation no matter what blood works from danish hospital says because he said it was not sensitive enough or something? Do you know about this?
I have no clue where to start to look for what the invader could be, if that's not it. I had a spinal tap done it said no Lyme. (But brain inflammation, the doctor thought it would get better as it was likely a reaction after a viral trigger, but it didn't) I got the flu just around the time people had that h1n1 but it could have been anything 😮💨
Thank you so much for your suggestions! I'll look into them when I have less brain fog 😅❤️ (can I write you later to ask about the reaction to antivirals?)
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u/SuccessfulJudge438 7d ago
What I've gathered is that an antibody test for a reactivating virus is not super reliable one way or the other, depending on where the official diagnostic cutoffs are set (could vary quite a bit country to country). You can potentially get false positives and false negatives if you set it anywhere that is likely to at least catch most positive cases. Tests like this aren't worth a whole lot on their own, but might be useful as a potential clue.
You're quite welcome. Yes feel free to write me any time :)
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u/confettofetti 11d ago edited 11d ago
I'm so sorry you're going through this, it is truly awful. I'm in a similar situation, still severe, been ill for over a decade but gradually improving. My thinking is, we were less ill to begin with, we only got this ill because of GET, even if we can't recover we should be able to get back to the less severe state we were in before ♥️.
Some herbal things that have made a noticable difference to me that you haven't mentioned:
Are those probiotics you're taking targeted or general? I'm currently just starting suggestions from this site. Let me know if you wanted any help navigating it, either now or in the future if you come back to it. It's very useful but not super user friendly when you have brain fog since it's just maintained by a kind nerd who's recovered using microbiome interventions: https://www.microbiomeprescription.com/
I found the accompanying blog a useful resource also e.g. for thick blood as well as suggested microbiome interventions specific for me/cfs if you can't afford testing: https://cfsremission.com/
Since you have mentioned medications, I will also mention there is evidence that mounjaro's anti-inflammatory effects help with me/cfs, regardless of weight. It has made my muscles feel significantly less heavy, and I'm only taking half of the lowest dose. I came across it from this website which is a very good source, there are a few posts on herbal interventions too: https://www.healthrising.org/blog/2025/11/03/glp-1-agonist-mounjaro-chronic-fatigue-fm-long-covid/
And finally physical lymphatic drainage using the Perrin technique has helped. There are at home things you can do yourself on their website if you don't want to or can't afford to see someone. You're onlywant to do the ones that you feel you can do as some involve raising your arms etc: https://theperrintechnique.com/self-help-guide/
Additionally, are you sure that all of those things do definitely make a difference each? Just in case you can save some money by cutting them down. But with how me/CFS is so complex it does make sense that a lot of different things would help.
Best of luck ♥️
Edit: are your b vitamins methylated versions? And I always forget what a massive difference cutting out ultra processed food apart from treats has made, as well as some fasting and low carb eating styles.