A colleague sends an inquiry about a LongCovid patient who is now immobilized due to progressiv weakness. She shows us lab values with significantly increased G-Protein-Receptor Antibodies that are typical for ME/CFS.
We have to learn from improved cases – more than from studies
this is why
- I have collected more than 150 answers of severly ill ME/CFS and LongCovid patients, many of them suffering a long time (6-15 years)
- these answers show what “really improved them, what was their breakthrough”,
- I try an comparative analysis of this remedies and present a modell what and why they brought on the breakthrough
- in addition I try to dissect the various subgroups of patients that are all labelled ME/CFS and LongCovid
My reply to my colleague
Dear colleague: with this antibody development you show, this is a genuine LongCovid or ME/CFS case.
This means that the symptoms will get worse with every infection that the patient has to suffer and they can’t get back on their feet at the moment.
Currently these cases are incurable – although I’m sure we’ll get a solution in 2024! The whole world is looking, especially those affected!
Whoever treats such cases has only moderate response.
I am reading up every day on these patients – they share their stories in X and Facebook – and have subscribed there to numerous ME/CFS doctors and LC patients, in addition to pubmed research and our own trials.
Actually: these patients lost their lives despite being completely healthy befor – it’s heartbreaking!
There is currently no cure
The worst thing for those affected is actually the ignorance of the medical system.
But – in the last 2 years we have come a lot further:
Basic mechanisms that we have recognized so far
It’s important to take it apart so you don’t poke around blindly and try things out
1) Autoimmune disease with antibodies against vegetative and energy receptors
Covid (also vaccination) under the additional influence of the always very high EBV then make autoimmune KH with the G-protein antibodies (= fatigue) and the ß-symp-recip- AB
Abbreviation: GPRAB (G-Protein-Receptor-Antibodies)
This then leads to the typical symptoms of ME/CFS:
Fatigue, PEM, Fatigue, Brain Fog, POTS/Pons, FMS, IBS, Raynould, …..
I don’t think pain is part of it, if it’s there too (except muscle pain after overexertion) then it’s more likely an additional infection (2)
2) Immunosuppressiv state leads to secondary infections
In Case of LongCovid or Vaccine-Damage:
Covid and also the vaccination cause immunosuppression, the killer cells disappear, secondary infections (similar as in HIV) can come to the fore: e.g. Lyme, Bartonella, Babesia, Toxo, EBV, VZV and others pop up and cause corresponding complaints, which are now attributed to the “trigger” Covid or the vaccination:
–> My mother was completely shot down by the vaccination and was a pain-stricken patient for many months – until we discovered that post-vaccine latent Lyme disease had activated and triggered the most extreme neuralgia.
With hyperthermia from Friedrich Douwes she got back on her feet
–> In some patients with weakness/pain after Covid we have found HERPES SINE HERPETE – enormous burning pain on the body – at the same time zoster antibodies over 2000 – which respond to NOTHING except for months of VALACICLOVIR + antidepressant
–> possibly also with activation of CRPS (Complex Regional Pain Syndrome), which we then successfully treat directly with tDCS on the brain.
But those cases cited here improved rather quickly after we have identified the real cause. These cases weren’t real ME/CFS cases – they lacked the autoimmune-part with GPRAB – that’s why it’s important to pick it all apart.
3) Mast cell activation
PostCovid –> Maybe this is due to a previously latent Bartonella infection that everyone has anyway – also likes to do MCAS –> Independent histamine symptoms problems: Migraines, POTS, IBS, cardiac symptoms, …..
The fact that antihistamines are helpful is mentioned so often on Twitter, so it’s almost obligatory.
4) Brain inflammation
Microglia activation due to virus persistence in the brain leads to brain inflammation: Fatigue, Brain Fog, FMS, Depression, Brainstem Symptoms, Dizziness, Memory Loss, –> Brain atrophy, dementia
is probably triggered or processed particularly by vaccination and leads to DIC and thus also PEM and then probably worsens (2) – here we have the one from Prof. Arne Burkhardt as the first discovered aortitis and carditis which then also lead to infarction and aortic rupture (in athletes) or sinus vein thrombosis deaths (Astra-Zeneka) –> “Died suddenly” is a typical Twitter term and there is also the film where rows of people dropped dead, which is all attributed to the vaccination – which I can NOT understand in my Ordi: many turbo cancer patients are unvaccinated and many LC and ME/CFS too.
Measureable via D-Dimer
Did I miss anything else?
maybe 6) Mitochondriopathy
I see this more as a persistent cell danger response according to Prof. Naviaux –> The extracellular G proteins (activated by autoantibodies) simulate a “danger” to the inside, the cell now switches from the energy-providing metabolism to an oxidative metabolism “oxidative shielding”:
where the mitos are uncoupled and produce lots of free radicals to kill bacteria and viruses.
For me, this belongs more under point 2 – but some of those affected below had really good improvements with Mito-NEMs, so perhaps you can consider that as a separate point
The effective remedy for this is suramin. When it became apparent that it could improve autism in a very short time, it was completely taken off the market in a large, concerted effort WORLDWIDE. This will definitely come back very expensive in 5-10 years, currently everything that could relieve the burden of care on families is being hindered and prevented, because an autistic person keeps at least 5 people trapped and busy and they don’t have a head free to think about contradictions to deal with climate change or heating or financial flows etc.
It will be similar with ME/CFS – otherwise the BC0007 would have been there a long time ago (the vaccination was on the market after 3 months – if you wanted that it would have been tested and available for a long time).
7) Adrenal glands and other hormone insufficiencies
because some kind of adrenal medication is often mentioned as a “breakthrough” in the disease
I hope I’ve structured it well enough – if anyone has any ideas, please let me know
In any case, several or even all of these pathomorphological mechanisms can be present and active in a patient
Treatments that work – why do they actually work
You have to pick apart the individual pathophysiological factors of the patient via anamnesis and laboratory – actually this should be possible with a good 1-page questionnaire – this would be time and cost saving!
Perhaps someone has a questionnaire like this?
ad 1) predominantly autoimmune disease – GPRAB
- Immunoadsorption apharesis is probably helpful in terms of understanding, but most people can’t afford it.
HELP-Aphares and Martin’s IMHO and Innuspheresis are, in my opinion, only secondary helpful because they have different main thrust directions – banal immune adsorption is relatively cheap and effective the antibodies out. HELP especially with DIC, with inuspheresis I have seen more deterioration than improvement so far (but the improvements don’t come to me, so that doesn’t mean that this doesn’t help).
To be tried out again in Berlin – especially by LEO HABETS
- B cell depletion with Rituximab or apharesis
- probably also the prednisolone, hydrocortisone, DHEA therapy
- ev. even the re-vaccination, several have stated that things have improved since Novavax – or that was simply pharmaceutical trolls on Twitter
- Nicotine Test – Protocol from Marco Leitzke I would put it in here, there are too many who really benefit from it (about 70% – 30% of them even very strongly – I have it anyway wrote an article about it) – is of course suppressed by the “real doctors” at the university because it doesn’t cost anything.
- Here, LDN can certainly be classified correctly
- Immuno D from Herwig / Greilberger should be effective here and therefore also helpful for autism.
- Magnesium – not for nothing the most important NEM in Autoimmun-disease according to Prof. Cicero Coimbra
- whether Nattokinase also has an effect here “antibody degradation?”
- Whether a banal Wobenzym therapy could have an effect? The enzymes may clear away antibodies –> This is just an idea of mine
- Autologous blood / urine nosode: quite banally 1 drop of blood in 7ml of 20% alcohol potentiates a few drops daily
does not work
- Coimbra Protocoll – at least on the few patients we tried until now
if anyone has different experience or ideas, please take up contact!
To use it as Multiple Sclerosis Therapy Rituximab was rebranded / renamed in EU from to Ocrelizumb.
Price increased from 3000,- to 30.000,- per Year
1b) treatments that mitigates effects of GPRAB
- Beta blockers or other vegetatively active agents.
- Ivabradine – calms hyperkinetic heart – but also internal tremors, not just the sinus node
- Mestinon = Pyridostigmine
- Nicotine – gets bothSpike as the antibodies go down from the receptors, “normalizes the receptors” –> it seems that in parts of the patients this also leads to improvement of the autoimmune disease
ad 2) predominantly virus / spike persistence
Patients suffer of immunosuppression, so they actually need immune activation – but that would worsens the autoimmune disease if present!
every immunological activation (e.g. re-infection …) worsens an autoimmune disease that flares up non-specifically and then produces increased AK and thus the autoantibody-induced components (PEM, POTS, fatigue .. .) boots up –> That’s why the ME/CFS gets worse in the long term
That is also my explanation as to why some people have stated that they felt better after another vaccination because, as we know, it is immunosuppressive.
You have to pick apart the typical combination of symptoms and treat them accordingly – this explains the individual “miracle cures” below.
- Virus persistence (EBV, Covid, HERV, HHV6, Zoster ……): Improvements with Acyclovir, Valaciclovir, Truvada, Ivermectin, Paxlovid< /li>
Virus particularly likes to be active in the brain –> Hence the mention so often that these remedies were good against BrainFog.
- Black cumin oil – broad spectrum antiviral – also cured HIV and was great against bad Covid
- Pygnogenol – pine needle extract, was the first thing that helped particularly sensitive friends of mine against SHEDDING from vaccinated people, so it binds / eliminates spike
- Nattokinase – binds and eliminates Spike, which is almost permanently formed and secreted by the mRNA – out
- ALA – I don’t understand why lipoic acid is antiviral, but there are studies that it has even cured HIV
Spike binds to the ACE receptor. Anti-spike antibodies could therefore also act like ACE antibodies –> Blood pressure drops or is extremely high, depending on what is triggered. Ivermectin, Nattokinase and Pycnogenol are powerful SPIKE detoxifiers, perhaps this is the basis for the game changer effectiveness that some have attributed to these substances.
3) Mast cell activation syndrome
- the antihistamines: especially ketotifen, cromoglycin (especially nasal spray!!), famotidine, desloratadine …..
is often mentioned below by those affected
4) Microglia activation – brain inflammation
- Low Dose Abilify (=LDA) – Aripiprazole (neuroleptic) – Brain Fog
- Floxyfral = Fluvoxamine
- all anti-inflammatory NEMs such as glutathione, ACC = N-acetyl-cysteine, NMN, curcumin, boswellia, ……
- ev. also Immuno D – certainly also ornithine-alpha-ketoglutarate – but unfortunately it came out last year that it was anti-cancer and – hey presto – it was gone and banned.< /li>
- Magnesium – especially magn-threonate – strong anti-inflammatory and therefore strong anti-depressant
- SSRI –Cipralex, Fluvoxamine
5) Endothelitis and DIC
- certainly also interesting, which is why many people have stated below that they were treated with LMW heparin and triple anticoagulants – therapy after Dr. Jordan Vaughnhad the breakthrough
- Aspirin is also mentioned several times.
- Nattokinase is extremely often mentioned
- Piracetam, Clopidogrel
6) some people just had a breakthrough with mitochondria remedies
- Q10 for example
7) Hormone insufficiency
- Pregnenolone, DHEA, progesterone, hydrocortisol, iodine, …..
What therapies do I expect little from?
Ozone therapy: when administered in high doses, it has an immunosuppressive effect – therefore initially helpful, at the same time I oxidize a lot of blood proteins and thus create a non-specific inflammatory stimulus or a non-specific immune stimulation in the long term. This can be quite eye-catching.
DUCEST vagus stimulator: we have seen NOTHING so far, in several patients (who were seen by Petros in Vienna) we even did 6 weeks of therapy in a row, this is more of a hyperparasympathetic disease and therefore further stimulation of the vagus is not helpful . Petros says the same thing: he has no success with these patients.
Which therapies could be helpful, though?
Photodynamic haemlaser therapy – which is certainly immunomodulating to immunosuppressive – is therefore good for rheumatism, but at the same time kills viruses
IHHT, HBO – optimize mitochondria, that can only be a good thing and was mentioned to me several times by Twitter patients
Twitter as a reference medium
OK, I’ve been collecting/bookmarking ME/CFS and LongCovid tweets for many, many months, which shows that for most of those affected, time is worth it:
- Those with virus persistence – they are slowly getting healthier
- Those with autoimmune disease – they are slowly getting worse
Long Twitter thread that I searched all the way through
Here’s a typical thread that I collected and also tracked all the subtweets – a huge amount of effort – about 4 hours – because Twitter doesn’t support it well. I am collecting bookmarked tweets regarding LongCovid and ME/CFS now for nearly 2 years – this one thread is perfect to show what is all about
Here are the individual answers
Every answer is a whole thread – I only saved the relevant stuff, not every question
“what was my breakthrough”
- Post H1N1 pandemic fatigue- Nattokinase Post COVID symptoms- Novavax
- Hydrocortisol , as i was flatlining on cortisol and as it primed the rest of my remission.
- Ivabradine 2 x 5 mg. My pulse is a little lower (still not consistently good), I feel a little more energetic. But unfortunately nothing more.
- Pentoxyfilline – My legs were really heavy and ached a lot. Now, they don’t hurt and are a lot less heavy. I can rest a lot more comfortably now.
- LDN + antihistamine (desloratadine) + ALA = most important combination at the moment. AlA improved: Pain in the legs, more after exertion. In my opinion there is a link to cortisol, it is more in the muscle than in the nerves. The pain disappears faster with ALA for me. The general amount of pain was reduced by LDN, ALA helps in case of overload. I feel its ALA that may help lower the amount of (days and weeks long) vertigo attacks I get.
- For my cousin with Long Covid: DHEA – Dose? – Im not sure what dose she takes, but she told me that her doctor checked her cortisol levels and they were too low, so he prescribed her DHEA supplements. She really went from not being able to walk more than a few meters to being able to work again
- Prodrome Glia – what improved – It literally feels like the myelin on my nervous system is rebuilding, and my body can “hold” charge longer (which is what Prodrome is meant to do). So this has helped fatigue, stimulus sensitivities, etc. I’ve often described what is happening in my body as… if the insulation on my nerves has frayed or eroded making them glitchy and prone to wire tripping or outages. It now feels like it’s getting better. …Also when I do tVNS, my BB on my Garmin is more likely to charge during that exercise (and also when I am at rest) whereas before that would not happen as often. Hope that helps explain!
- Memantine or SSRI . I got both at the same time, I don’t know which was the game changer – Cipralex 10mg. After 1st withdrawal weakness came back. Nowadays we have studies with low serotonin levels in LC patients. Makes sense!
- I’m just noticing a lot of improvement with Dr. Wolz Thromboflow capsules . It promotes normal platelet aggregation and contributes to healthy blood flow. I’ve noticed an improvement so far in that my body feels lighter (that’s how I would describe it) and I can walk better.
- Black seed oil –
- Liposomal vitamin C 1g of vitamin C per day – it took 48 hours to start feeling a tiny bit better
- NAD+ changed the playing field, not just the game. I’ve seen increases in HRV, activity levels, cognition, & decreases in fatigue, PEM, brain fog, vision disturbances. Both short term & long, be careful w short tho it’s a house of cards for a while at first
- Nattokinase, 2,000 I.e. per day , I could get rid of Longcovid with it. – .5CC 2x/wk typically, sometimes a 3rd if I have smth particularly stressful to my body, Christmas parties for ex. Archway Apothecary in Louisiana will compound & ship in the US if you don’t have a compounding pharmacy that will do it locally, will need an rx for IM – The first really minor effects were after a few days. It took about 3 months to get rid of PEM. And additional half a year ago I could discontinue Nattokinase and had no side effects anymore. And for how long did you have long COVID before you started with Natto? In the first weeks I also took Lumbrokinase alternately, 2,000 i.e., and switched the dose of Nattokinase to 4,000 for some time. I had Long-Covid for about nine months before I started with Natto. As always with these experiments, some can help it, some not. Depends on the cause of Long Covid. If the cause is in the direction of micro clots or endothelial damage, Natto may help. – Endothelial damage is a diagnosis that I got. So I will try it again – Is it Safe to Combine it with blood thinners like Edoxaban? –
- (Long thread about interactions due to bleeding risk between different medications): – you don’t need to read it, I just included it for the sake of completenessLots of questions regarding drug & supplement interactions with nattokinase. I will address those questions in an upcoming thread. Stay tuned! So far, I’ve had Qs on: SSRIs Fish oil (DHA + EPA) Curcumin Aspirin Any more questions re: interactions, please ask here. SSRIs: slight additive risk; monitor for abdominal cramps or blood in stool The SSRIs with highest bleeding risk (still relatively low) are paroxetine, fluoxetine, & sertraline. GI bleeding is most common. FISH OIL (EPA, DHA): probably safe; negligible risk A systematic review (2017) of 52 studies (many RCTs) found that while fish oil does decrease platelet aggregation in healthy subjects, it did not increase risk of bleeding in surgical pts. Nattokinase appears to inhibit P-gp which can lead to fatal interactions with colchicine! Do not take NK with colchicine! https://pubmed.ncbi.nlm.nih.gov/18570158/ NIACIN: slight bleeding risk with NK , LK In adults with vascular disease, Niacin ER 2 g + laropiprant 40 mg significantly increased risk of bleeding by 0.7% compared to placebo. Niacin also showed no cardiovascular benefit. FLUVOXAMINE: absorption of Fluvox may 1) Additive bleeding risk w NK (moreso w LK) 2) NK = P-gp inhibitor; Fluvoxamine = P-gp substrate according to several studies. P-gp transports drugs out of cells, so inhibition by NK could fluvoxamine absorption, efficacy, &/or side effects. Watch out for CNS side effects with these drugs. Nattokinase may help increase transport of these drugs across the blood brain barrier via inhibition of a transporter protein P-gp. 1 report of adverse effects.MESTINON (pyridostigmine) From chemical structure of Mestinon, it does not appear that NK would cleave bonds or inactivate Mestinon. It also does not appear to be any P-gp interaction. From info available, no red flags. IVABRADINE: The information available does not suggest an interaction between ivabradine and NK. This doesn’t mean there is no interaction; just that I didn’t find one. (Note that large amounts of green tea/EGCG supplements may increase ivabradine’s effects via cyp3a4 inhibition.) PEA (Palmitoyl-Ethanol-Amide) Nattokinase breaks amide bonds, and PEA is an amide. Thus NK may degrade PEA and inhibit its effects. Therefore, it seems prudent to separate these two supplements by 12 hrs to maximize PEA efficacy. Nattokinase, serrapeptase, bromelain (in fresh pineapple), lumbrokinase are all ones put forward to use with one another. Would like to know of interactions considering some people are using all of them! Tollovid is something others have started using frequently. What about pycogenol, also curious about statin. “After 3 months, the endothelial function (flow-mediated vasodilation) was significantly improved by 189% in the Pycnogenol group compared to the beginning of the study and only by 22% in the control group.” #LongCovid https://wholefoodsmagazine.com /columns/vitamin-connection/preventing-post-covid-symptoms-with-pycnogenol-a-new-clinical-study/ Not sure re pycogenol. Re: statins, not any actual studies with statin + NK, but historically, PRAVASTATIN tends to be the best tolerated statin with fewer drug interactions. Rosuvastatin = only statin GI bleed when combined w/ warfarin (anticoagulant). https://ncbi.nlm.nih.gov/pmc/articles/PMC4936673/
- Glutathione – I prefer Seeking Health formulas, start lower than suggested serving size and work up. Might need cofactors if depleted (info on website). I can feel clarity of mind upon administration. Also love their adrenal cortex .
- Pycnogenol for endothelial dysfunction angina – Up to 150mg a day, helped within a week or 2
- Nicotine patches https://linktr.ee/thenicotinetest
- For those mentioning Ivabradine , you need to start asking for drug repurposing. Can’t take it with Paxlovid.
- Impossible to pick just one! Lion ‘s mane mushroom extract for brain fog/aphasia, bovine colostrum for gut dysbiosis, desloratadine and NAC for shortness of breath, Mg L-threonate for migraines, I could go on and on
- Methylene blue, out of 200+ I have tried
- Triple anti-coagulant therapy – aspirin, clopidogrel, apixaban
- Nicotine strips – The brain fog was away nearly one hour after I started Nicotine patches. While a longer time energy improved, I started to get out of bed (before I was bedbound).
- Mestinon – I saw a lot of encouraging comments, but what stops me is that this is a possible cause of the “syndrome of the war in the Persian Gulf” do you have a comment?what dosage? – I use the 180mg ER and it’s been very beneficial to me I take a single 180mg extended release dose daily. I had trouble ramping to three 60mg doses but have had fewer side effects with the extended release.. don’t want to sound annoying but you should be extremely careful with Mestinon, it has a tendency to improve almost everyone but significantly and permanently worsen them long term… It has been known now that it is the cause of the Gulf War Illness, and in a study that looked at a group of soldiers that didn’t take it, I think the mestinon group had a 37x increased risk of heart attack and most of us injured. Some changes it seems to be permanent, please look it up I don’t want people to do further harm for a small recovery time
- I’m 3.5 yrs in. I am getting better. I’ve tried a lot of things . NMN -half cap in am, sometimes half cap citicoline around noon. Along with vit.C, collagen mushrooms, stuff like that. NMN was most incredible and immediate.B-nicotanamide mononucleotide
- Low dose abilify and nicotine patches . Both helped a lot with PEM, energy level and brain fog (esp. nicotine for brain fog). Vitamin C infusions for energy. – I went from being able to walk slowly for about 20 min only on good days to walking at normal speed for an hour and no PEM within 3 weeks of starting the patches. It felt like a miracle. Concentration also got way better, I started reading books again. I still have PEM and brain fog but my baseline always stays way above what it was before starting the patches, also during the times that I don’t use them.
- Piracetam I take it daily – I had the biggest improvement with Piracetam too. Impressive improvement in POTS, brain fog. How is it helping you? -Piracetam mainly helps with my brain fog, and, to a certain extent, with my energy levels
- Paxlovid 15 days. Cleared the brain fog only, but significantly Did you get it long after your initial infection was gone? Yes! Infected Dec 2020, paxlovid 2022!
- Beta blockers – Midodrine
- Ashwaganda has dropped my cortisol and POTS like issues so I’m able to function more. – 30% reduction in cortisol (according to blood test)dropped pulse rate from 100bpm to 85 when standing up and dizziness/nausea happens far less frequently.
- My one time favorite is ubiquinol 50mg daily . NADH 20mg works as well. Both together are amazing (there are even studies to back my experience). Not healing though.
- The only helpful drug of over 50 I’ve tried is Diazepam (Valium ), I don’t take it regularly, only when needed. Here’s a list of drugs and therapies someone might find helpful for symptoms relief in ME/CFS, Long Covid, POTS…
- Here is an extremely long list of around 300 remedies, what they work and how to give them/dose them: https://manualofmedicine.com/me-cfs-fm-long-covid/essential-drugs-therapies -me-cfs-long-covid-fibromyalgia-symptoms-relief/
- LDN 1.5 mg
- Mestinon + LDN + natokinase (Combination this moment, Mestinon biggest game changer) – Similar but Gingko biloba instead of natokinase (allergic to soy).
- clopidegrel – I’m not cured, but yes it helped dramatically with brain fog and my ability to stay upright. i used to only be able to stay up for a few minutes at a time before I’d lose my ability to think clearly, and rush to lie down before I passed out…
- Well, the most important medication now, are: antihistaminic , antianginous’s cardiac,MG,B1,B6,B12.
- LDN – I’m on year 8. Doesn’t give me my old life but my new life is >>>>worth living.
- Piracetam – My experience too, effects are amazing. What effects did you have? And how much did it improve you
- NAC (1200mg per day) but it takes months to really kick in. So consistency is required, but after the 4 month mark I really noticed that I had more energy & was able to work out again.
- Apolactoferrin -250mg to 500mg.
- All of these shown here plus propranolol . I feel better than I have in a very long time
- ALA, Alpha Lipoic Acid. Turkey Tail Mushroom. Nattokinase and Serrapeptase . NAC . Amino acids. Calcium (plant based).
- Magnesium but you have to take as many different forms of magnesium as you can tolerate in as many doses across the day as possible to get the full effect . 8-9 forms, 6-7 doses – I’ve been noticing great effects from taking magnesium glycinate + topical magnesium, what forms do you take ?
- Nothing for energy/PEM
Famotidine desloratidine: nausea
Melatonin sleep (bit)
Glutathione, q10, bloodthinners: no effect
Ssri: made worse
Prednisone: helped little with malaise
Esomeprazole macrogol: stomach
Benzo: sleep incidentally
- # TheNicotineTes t not a magic pill but clearly improved the baseline
- Candesartan for headache and cognitive problems, NAC and LDN
- Fluvoxamine for anything brain related such as dizziness, some fatigue, light sensitivity, etc…although Fluvoxamine itself has its own side effects which can be uncomfortable.
- Low Dose Abilify (aripiprazole)
- LDN … Low Dose NALTREXONE
- Wow! Very informative thread! I don’t tolerate any new drugs or supplements for 3 years except for sodium cromolyn! I’ve been on it for a couple of months and I’m hoping it will allow me to tolerate other drugs/supplements that I need. Very good ideas!
- Nattokinase would have to be at my top if I had to say just one as I feel it saved my life.
- Low-Dose Abilify
- Ivabradine .
- Gutron tablets have significantly improved my life this year. No more dizziness, no more syncope, brain functions a little better.
- LDN plus Antihistamine plus Vitamin C infusion Pain relief, cognitive improvement, mast cells slightly more stable, crashes shorter
- Immunoadsorption got me out of the woods. Pacing, Low histamine Diet, Losing weight (!), H1 antihistamines, Nicotine patches had the greatest effects next to IA.
- A protocoll of Dr. Aguirres,which helped me a lot: https://twitter.com/Aguirre1Gustavo
- Modafinil 200mg morningd afternoon. Cannot function without it
- Aripiprazole / Abilify
- Low Dose Naloxone (LDN )
- High dose CBD . Eases inflammation, aids sleep and stops the crying fits of despair.
- LDN for nerve inflammation
- Ketotifen -> Beta blockers -> Cannabis
- Selank – in 3 weeks got rid of anxiety and improved cognitive functions
- Hydroxyzine brought MCAS under control or at least a tolerable level of discomfort. Propanolol got me out of constant fight or flight. Modafinil gives me continuity of consciousness, although I can’t take a full dose because I don’t have the energy to be that alert.
- Nattokinase and olive leaf extract/ashwaganda Nattokinase resolved 9 years of shortness of breath. Not sure how quickly but it was within a month. 2000fu 2x a day. I don’t want to b without it. Olive leaf and ash for antiviral. Seem to have less brain fog after 3 mos on it.
- Low-dose naltrexone . I use it for nerve pain.
- PEA . PEM is reduced. More feeling of being alive Bell from 9 to 12. Not much, but relevant
- sars-cov-2 causes microglia activation, astrocyte activation and in excess harms brain. increasing NAD+ in brain helps neutralize; what does that mean? Apigenin supplement
- 1st place LDA Also important: Nattokinase , anticoagulants including HELP Apheresis , Truvada AH
- Nothing so far Ssri a bit, magnesium and nattokinase very little. I can’t cope with medication
- Smoking tobacco ( Nicotine ) cured my brain fog
- Ivabradine 1x5mg; I can sit again for more than 5 minutes
- Natto felt like it actually was the one thing that helped a bit.
- ~ small bowl of cubed watermelon pieces before bed. temperature and hydration improved.
- Bloodthinners (Triple Therapy)
- Antihistamines (h1/h2)
- Ivabradrin 1x 5mg/day, H1+H2 blockers Ketotifen+Famotidine
- Dipyridamole . Taken long term after COVID and even before getting sick if in midst of outbreak
- Tavor (Atvian)
- Floxyfral against brain fog
- Paxlovid for 10 days (without having a Covid infection)
- Cbd oil
- Beta blockers .
- My doctor has put me on fibromyalgia medication for my nerve pain caused by long Covid and it saved my life!!!! If you have nerve pain ask about fibromyalgia medication!!!!! ??? did not answer which means
- Memantine for headaches and it helps somewhat with brain fog.
- Gabapentin, AH 1+2, histamine diet
- Clopidorel . Arms and legs are less heavy and less tingling and vibration
- Note: almost no one is answering a supplement. We need doctors and pharmacists to get it, prescribing and dispensing.
- Kijimea K53 and at the same time I stuck nicotine patches . Raised my baseline and stabilized mast cells. Hardly any diarrhea since then
- Magnesium gummies.
- Injectable anti-coagulants . Cleared most symptoms immediately.
- Natto Serra!
- Low Dose Abilify
- After 11 years have started LDN to treat the fatigue has helped a lot also Ivabradine </b > for heart rate
- NK Stim by KAL (??)
- Ivabradine, D-Ribose, L-Lysine
- YourGutPlus probiotics. Helped with my overall well-being not specifically gastro issues
- Sounds sad but only lorazepame and clonazepame . Didn’t try out ldn.
- my partner has improved a lot in the last 4 weeks by resting 30 seconds after being active for 30 seconds (in german)
https://youtu.be/LdkSdAOsfWg – Great video!
- Antihistamines . And…good thing you asked for just one, because that’s all I got.
- Desloratadine, IHHT
- Nope, don’t have one. Several workingtogether improved things a little.
- Aspirin 100mg/ nattokinase/ serrapeptase, Ginger, ketogenic diet
- Metformin Nattokinase Novavax Creatine
- Cannabis very high dose round the clock
- Magnesium taurate
- I am really sensitive to medications, so it is difficult to find ones that help w/o issues. Baclofen has been very helpful for the severe stomach cramps I get with eating and helps w my GERD. As a bonus, considered off-label use, it has helped my migraines, too.
- Ivabradine, cromolyn, antihistamines, glutathione, i can sit
- Beta blocker
- Mestinon Heparin
- Oral cromolyn sodium for MCAS gi
- Vitamin D and Ginger shots
- Triple therapy and Metformin
- Vitamin K2 Fixed a bunch of stuff including plantar fasciitis & other wound healing. Was able to resume walking without pain.
- Nicotine patch for brain fog, fatigue, apathy, and neuropathy Zi Cao tea (Arnebia Root) for appetite, digestion
- Supplements or pharmaceutical meds has in majority slim to no effect</ span>. From our experience strategic use of compounds make serious, stable improvements. Risky unfortunately.
- Amitryptiline 50mg. Purely to calm the nerve pain and allow me to sleep through pain but still be ok to get up with the kids when needed x
- Despite trying many of the things listed in the comments (natto, ldn, bisoprolol, turmeric, antihistamines, aspirin, probiotics, statins) I have found nothing to arrest my decline over the past 30 months. That said I don’t know where I’d be without them , possibly much worse.
- Collagen powder, taken once a day with vitamin C between meals, has made a small but noticeable difference in my ME fatigue and body aches.
- Isosorbide mononitrate -prescribed for prevention of angina and helped reduce some symptoms
- Natto . Even with MCAS I use it. Because it helps.
- Famotidine + desloratadine, Trimbow
- Nothing. Not one damned thing.
- Low dose, as needed methylprednisolone
- ASPIRIN 300MG/D + Acetylcysteine 3×500 combo
- Paroxetine 10mg + Diazepam 6mg for a week.
so what can you do for your patients:
This is diagnostically clear ME/CFS
–> Apharese, LDN, everything you know against autoimmunity, magnesium, definitely NICOTINE patches, the non-immune-activating antivirals against EBV / HHV if it is elevated because the autoimmunity worsens: black cumin, Iver, Vala, low dose prednisolone, autologous blood. Nosode, homeopathic rheumatism complex, enzymes.
Hopefully BC007 will be successful in the Vienna study, or Suramin will come back onto the market.
Comments are very welcome as comments, anything that is helpful.