Ivermectin.

bensmith

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Doctor levine said she wanted me to try ivm. It seems to be a strong herx. I am very scared but also very very desperate. I am afraid it will be so bumpy it will push me into very severe, which i think i am trending. I felt a bit better for awhile with all these meds im taking but they are not working now really.

Anyway, thoughts? I guess it could make my life better? Possible? Or i wonder if it’s just long covid, i feel now i am more cfs.

I don’t know what to do : /
 

nerd

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Do you mean as a treatment for COVID-19, for CFS, or as an anti-viral treatment?

What do you mean by "herx"?
 

bensmith

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@nerd any, i have long covid, which started mt cfs.

Herx is where you get worse before you get better. From die off. I dont think its an agreed upon term outside of specific circumstances.
 

crypt0cu1t

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Doctor levine said she wanted me to try ivm. It seems to be a strong herx. I am very scared but also very very desperate. I am afraid it will be so bumpy it will push me into very severe, which i think i am trending. I felt a bit better for awhile with all these meds im taking but they are not working now really.

Anyway, thoughts? I guess it could make my life better? Possible? Or i wonder if it’s just long covid, i feel now i am more cfs.

I don’t know what to do : /
Did you get Ill after covid?
 

Alvin2

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I'm no expert on this drug but if its treating something could they not test for the things it treats to make sure you actually need it?
Also if you want until its better tested on long covid would that be an option?
 

bensmith

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@crypt0cu1t yeah i got cfs after i got covid. So maybe this would help because of that. But it feels i got over covid awhile ago, and now its more a severe pem problem. Although my covid wasnt like most, it was neuro immediately.

@Alvin2 its for long covid so no way to test for i dont think. I know it has helped people with long covid, but my issue is more now severe mental pem.

@nerd yeah thanks, i have seen those.
 

Alvin2

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@Alvin2 its for long covid so no way to test for i dont think. I know it has helped people with long covid, but my issue is more now severe mental pem.
From what i understand its not FDA approved. Much like Hydroxychloroquine which was found to not work but was very hyped.
That said maybe it will be in time after the research is completed.

BTW any updates on that MRI you had been scheduled for?
 

bensmith

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@Alvin2 thats correct but in some studies it looks promising and in my groups its helpingn a lot of peopl. I generally trust dr levine too. Just scared of getting worse from it.
 

Alvin2

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@Alvin2 thats correct but in some studies it looks promising and in my groups its helpingn a lot of peopl. I generally trust dr levine too. Just scared of getting worse from it.
That is the unfortunate risk of experimental medicine.
On the plus side there is research going on and clinical trials on it from what i understand. That is more than can be said for experimental ME/CFS treatments.
 

bensmith

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@Alvin2 oh and i had do give up on the MRI. I tried two times and got too sick. My health is really a mess so i just can’t justify it. I am basically in crisis now 24/7 so i don’t feel safe making it worse. Very hard to hold on as it is.

yes, i hear that.
 

Alvin2

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@Alvin2 oh and i had do give up on the MRI. I tried two times and got too sick. My health is really a mess so i just can’t justify it. I am basically in crisis now 24/7 so i don’t feel safe making it worse. Very hard to hold on as it is.

yes, i hear that.
I'm really sorry to hear this :hug:
Is there any way they could make it doable, any accommodations that might work?
 

bensmith

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i don’t know what they would be? I can take gabapentin but it makes me manic, i’m already pretty badly manic from another drug i was taking. Beyond that not sure.
 

junkcrap50

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Not sure if Ivermectin will cause a strong herx in your case. In use for treatment against parasites, then yes, it surely could cause herxing. But unknown for long covid. Anecdotes from patients who have taken it for long covid is probably the only way to have any sort of idea. I believe a lot of "herxing" in me/cfs is misdiagnosied as inflammation flares and immune imbalance responses. This might be able to be managed by anti-inflammatories or steroids, if it does cause it.

I have heard of Ivermectin used in long covid cases many months ago and that it has helped many (but not all) patients. Doctors (as well as patients) have reported benefits using ivermectin for long covid. It is thought to be used more as an anti-inflammatory and immune modulator than an antiviral in long covid. So perhaps it won't cause any herxing. But it could still bring about some inflammation. as it could still be killing and disrupting intracellular infections and virus protein signaling.

Prior to covid, ivermectin was established to be a very safe drug. And there have been many studies on ivermectin and acute covid also showing it is very safe. Researchers have some idea on how ivermectin works in acute covid. So the relative risk for ivermectin in long covid is probably very low.

If I had long covid, i would be concerned with allowing covid to enter into latency and become a latent infection by not tackling it hard and early. The virus could also be spreading it's viral proteins and fragments into cells, further establishing long covid.

If you are waiting for an FDA approved drug or a unanimous research consensus on ivermectin for long covid, good luck. I doubt you will live long enough to see it.

Becauuse your main complaint is cognitive/mental pem, it seems (from very early research on covid) that cognitive issues in long covid appears to be ischemic related. The theory is that this is implying possible vascular/endothelial and neuro inflammation. COVID is well known to wreck incredible damage on the vascular/endothelial level. This appears to be similar to the hypoperfusion in ME/CFS brains (though I don't think me/cfs researches know why, just the observation). Perhaps, focusing on inflammation (neuro and otherwise) might target cognitive issues.
 

junkcrap50

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I can’t get ahold of ampligen but i would prob take it.
The relative risk between ampligen and ivermectin seems pretty far apart. How do you view the relative risk between ampligen and ivermectin? One is a not FDA approved drug, experimental, very short research history, limited understanding on it's mechanism, and only studied narrowly on a very few diseases. The other is FDA approved, very old drug with long research history, including applications outside of it's initial/main mechanism.

Now, that's not to say I wouldn't take ampligen. I probably would too in long covid, especially sooner than later after getting long covid. One proposed theory is that the interferon response and balance is disrupted in long covid due to the acute infection and that ampligen may help reset that balance. As such, it may (according to this theory) have a higher likely hood of success if done soon after the start of long covid, before any long term damage or changes may occur.

Also, I would encourage you to research more into Ampligen and it's effects in ME/CFS patients. I am not disencouraging you, but want you to have a complete understanding. As I have permanently worsened myself by trying things without a complete and deep understanding of the risks. Back when it was in vogue and popular in ME/CFS, there were many anecdotal first hand accounts of terrible reactions to it and worsened many patients. I didn't pursue it for that reason. You can read some of those stories here on PR.

@crypt0cu1t yeah i got cfs after i got covid. So maybe this would help because of that. But it feels i got over covid awhile ago, and now its more a severe pem problem. Although my covid wasnt like most, it was neuro immediately.
This is how my ME/CFS presented and I never really had physical symptoms/fatigue/pem until a failed methylation treatment (Fredd Protocol). One theory is that the ME/CFS/Long Covid mechanism can be located in different parts of the body and affect only those areas, causing the wide range of symptoms between patients.

I had permenant and significant success (but not complete) treating my cognitive dysfunction with HBOT. But I don't know of any long covid anecdotes with HBOT. But it may be something to look and ask about in the long covid support forums.
 

nerd

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Thanks, all well said. I just took first dose and it is helping. No real issues, although i am starting way under my weight.
Please consider the long half-time of IVM. Also, for antiparasitic use, lower than the recommended doses relative to weight are associated with parasitic drug resistances, just like for antibiotics when they aren't taken as prescribed.

Regarding Ivermectin's safety, it's very safe for parasitic treatment. Among billions of doses that have been distributed worldwide over the past decades, there are only a few reports of adverse effects that couldn't be attributed to the parasite (10.4269/ajtmh.17-0042). There was one death that couldn't clearly be attributed to the parasite and where the patient's case included a possible chronic fatigue diagnosis and viral positivity (in the pre-COVID-19 era). If there isn't a huge number of underreported cases, this makes it a relatively safe drug when compared to some other over-the-counter drugs such as pain killers. There is always a risk. In this case, the risk seems to be genetically inherited but no study has ever evaluated which SNPs are responsible, unfortunately. There is only one tiny study on the MDR-1 gene that couldn't really clarify this with sufficient significance (10.4269/ajtmh.2010.09-0734).
 
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