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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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To those who believe their ME/CFS began w/ EBV.....

nerd

Senior Member
Messages
863
Uh uh. Ivermectin can cause liver issues, and it can be toxic at higher doses in patients with certain genetics (veterinary example: collies and similar-breed dogs)

I don't want to get off-topic, but the incidence of liver complications with Ivermectin isn't different from natural coincidence, it might even be lower. The only thing that can happen with all apoptosis-inducing drugs such as Ivermectin is that liver enzymes are slightly elevated, but this isn't pathological. It's just the liver doing its job.

The toxicity margin of Ivermectin is in the 50x to 100x range. This means it's possible to take ten times the recommended dose without cytotoxicity in theory. There's has also been a small trial using this dosage without complication incidence.

The genetic issue is just a theoretical one. It's a theoretical one in that a patient would be multi-drug sensitive because many drugs rely on the MDR-1 gene. These dog breeds are affected by this issue that the therapeutic options are generally limited. But this is just a sensitivity to a drug, it doesn't necessarily mean that the drug reaches toxic concentrations in the brain. But it's possible with Ivermectin.

In general, there are barely any reported serious incidents after billions of doses. Most OTC pain killers perform worse than that. This is why I spoke of it as an example of a safe drug. At least safer than other antivirals that come to mind for ME.

And that it’s cheap is also not accurate… it’s quite expensive in Germany and Austria

The drug itself is cheap, but the European brand is expensive.
 

nerd

Senior Member
Messages
863
Do you know if pharmacies can import cheaper brands ?

I'm not sure but I don't think this is generally possible, like it is in the US or UK. But this might come down to national legislation. I haven't looked into why Ivermectin needed a separate approval process in the EU in the first place. The EU doesn't seem to recognize WHO medicine until a company invests in their own EMA approval.

European Stromectol is only approved for one indication among all the parasites against it is used outside the EU.

Even odder is the fact that the EMA also has one approval mechanism that only works for countries outside the EU. This was the case with the approval for the new therapy against the sleeping sickness. So it's still not approved within the EU.
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
I'm not sure but I don't think this is generally possible, like it is in the US or UK. But this might come down to national legislation. I haven't looked into why Ivermectin needed a separate approval process in the EU in the first place. The EU doesn't seem to recognize WHO medicine until a company invests in their own EMA approval.

European Stromectol is only approved for one indication among all the parasites against it is used outside the EU.

Even odder is the fact that the EMA also has one approval mechanism that only works for countries outside the EU. This was the case with the approval for the new therapy against the sleeping sickness. So it's still not approved within the EU.
Hm I'm not sure. I can import Rexulti for example from Canada or Switzerland...
 

sometexan84

Senior Member
Messages
1,235
I'm positive for CoxB4
Might have told you this before... but if you're not already on these, I think you should give them a shot as there's really nothing to lose...

I'll share what I was taking after 6/2/20, but before Aug 2020 that may have contributed to my CVB4 titer decrease

1628376007271.png


Also, I may have stopped taking some of these between 8/5 and 11/14, I just know my start dates. In case you're wondering why my titers did not continue to fall in 11/14/20.

Most of this I started in July, 2020 (not necessarily for CVB)

LDN - Low Dose Naltrexone
L-Lysine (SuperLysine+) Amino Acid
Vitamin C (Ultra Potent-C 500 by Metagenics)
L-Glutamine
Magnesium Malate
Garden of Life Critical Care 80 Billion CFU Dr Formulated Probiotics (15 Probiotic Strains; Colon Health, Immune System)
Azithromycin (Zithromax)
Quercetin (flavonoid)
Extract of Ginkgo biloba (EGb), Standardized Extract
 

sometexan84

Senior Member
Messages
1,235
Thank you @sometexan84 for this clarification :) tho' your statement "VGA IgG and Nuclear Antigen IgG don't matter much at all" is frustrating because I'm trying to interpret a situation where the EBV VGA IGM was negative and the VGA IGG was 166.0 (normal range: negative <18.0; equivocal 18.0-21.9; positive >21.9). Unfortunately, no EA IGG was run.
You really need to know EA levels for an interpretation. Maybe you can get just EA done, if that's easier/cheaper?

I will say though, it seems to be more typical in ME/CFS to have VCA IgG levels that are much higher than that.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,098
Location
australia (brisbane)
Antibiotics come with great risks of destroying the microbiome and causing resistencies, which can worsen ME. Antivirals come with genotoxicity risks and risks for harming the tubular cells, impairing the filtration rate, causing CKD. Not everything is safe like an Ivermectin pill.



It's normal for IgM to disappear a few weeks after the initial infection or vaccination. IgM can only reemerge under special circumstances.

The only things that have improved my cfsme are antivirals, antibiotics and some help with a couple of immune modulators.

Abx resistance i think is way overstated. Its probably been 30yrs plus since theres been a new abx a gp can prescribe. Using good probiotics and occassional courses of natural anti candida supps or meds can also help with preventing gut issues.

Toxicity of antivirals i guess is the war that goes on with the toxicity of chronic viral infections. Dammed if ya do or dammed if ya dont.
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
Most of this I started in July, 2020 (not necessarily for CVB)

LDN - Low Dose Naltrexone
L-Lysine (SuperLysine+) Amino Acid
Vitamin C (Ultra Potent-C 500 by Metagenics)
L-Glutamine
Magnesium Malate
Garden of Life Critical Care 80 Billion CFU Dr Formulated Probiotics (15 Probiotic Strains; Colon Health, Immune System)
Azithromycin (Zithromax)
Quercetin (flavonoid)
Extract of Ginkgo biloba (EGb), Standardized Extract
@sometexan84 Thank you!! and did you improve?
 

DrUniverse

Godfather
Messages
154
I was on 500mg twice daily - Quercetin

and Vitamin C (Ultra Potent-C 500 by Metagenics), twice daily

But it should also be noted that despite the CVB4 decrease during this time, I actually had substantial CVB2 increase during the same time frame...

Thanks. Sorry for dumb asking, what exactly is CVB4 and CVB2?
 

DrUniverse

Godfather
Messages
154
Coxsackievirus B4, and B2

Ah okay thanks. So you discontinued Quercetin and Vitamin C?
Im currently taking it and after feeling and Research it seems to be a wombo combo.
I have like 200 ea igg and 450 vca igg. It feels like its supressing the EBV, need to check titers in a few weeks.
 

sometexan84

Senior Member
Messages
1,235
Ah okay thanks. So you discontinued Quercetin and Vitamin C?
Im currently taking it and after feeling and Research it seems to be a wombo combo.
I have like 200 ea igg and 450 vca igg. It feels like its supressing the EBV, need to check titers in a few weeks.
Well, I have discontinued everything... it's complicated.

But I will say that I specifically took that combo for Enterovirus, and not EBV. Just sayin