Info for AussieNeil: Hi Neil, You have asked... - CLL Support

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Info for AussieNeil

danimal7777 profile image
20 Replies

Hi Neil,

You have asked repeatedly about ivermectin reports, so here are two links that should provide information.

journals.lww.com/americanth...

pubmed.ncbi.nlm.nih.gov/?te...

From the Pubmed link, you can chose those among the 300+ reports that interest you.

As important as ivermectin may be, it is not a monotherapy. Doctors that prescribe it tailor a drug and supplement regimen to the specific patient.

A regimen of supplements should be used to enhance the immune system against Covid, if one's condition permits. These items show up often in recommendations: zinc, quercetin, vitamin D3, vitamin K2, vitamin C, aspirin and an antiviral gargle. Those who take supplements along these lines tend to better weather the Covid. Note that the supplements, especially zinc and vitamin D3, require a couple of weeks to become effective, so they should be taken early, and for as long as there is a meaningful threat of disease in the community.

Those who have comorbidities (including advanced age) should take a Covid vaccine, if they haven't already, to reduce the risk of hospitalization or worse. Those who have a choice should take the Pfizer or Moderna vaccine. The other current vaccines don't appear to remain as effective over time.

Before long, virtually all of us will contact and probably contract the Omicron strain. Vaccines, especially after they fade, don't appear to be effective against it, and natural protection from the earlier Covid infections are likewise, not very effective in resisting this mutated strain.

As a footnote, I don't know if any of these supplements are nullified by a BTK inhibitor. Quercetin uses the same enzyme that metabolizes the BTK inhibitors, which may be of interest to one's cancer pharmacist.

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20 Replies
AussieNeil profile image
AussieNeilPartnerAdministrator

Hi Danimal,

I'm disappointed that you couldn't provide better evidence than a search list from Pub-Med for "ivermectin covid-19" without even including a date filter for recent, more reliable research, along with just one paper published in May-June of this year. Just as I have repeatedly warned you with respect to providing reliable evidence, your referenced paper from American Therapeutics relies on withdrawn study data from a faked trial (cited paper 45) which unfortunately happened to be the largest ivermectin 'study' and which also claimed extraordinary patient recovery results. That cited paper was unfortunately not peer reviewed and sadly resulted in the commitment of a great deal of misdirected research which could have been far better invested elsewhere, perhaps into nutritional supplements.

From your American Therapeutics reference:

Data are also now available showing large and statistically significant decreases in the transmission of COVID-19 among human subjects based on data from 3 randomized controlled trials (RCTs) and 5 observational controlled trials (OCTs) with 4 of the 8 (2 of them RCTs) published in peer-reviewed journals. (40–46)

Elgazzar and colleagues (45) at Benha University in Egypt...

Any meta-analysis excluding that withdrawn paper finds negligible evidence for ivermectin providing any statistical survival benefit.

With further respect to supplements, you previously mentioned, without referencing it, the paper from Ohio doctors, but as I also pointed out previously, healthunlocked.com/cllsuppo... the study was performed by one doctor and "The study was obviously conducted neither double-blinded nor even blinded". There may be some benefit from taking supplements, but as you say, they probably need to be taken for a couple of weeks before an infection.

Given you have not provided reliable evidence for ivermectin being beneficial for COVID-19, again, please refrain from referring to the I-MASK+ protocol and ivermectin as if it were scientifically evidenced to be helpful.

Neil

danimal7777 profile image
danimal7777 in reply toAussieNeil

I provided a list of over 300 papers, but I didn't sort them for you? And in one paper, 1 out of 84 references apparently had a problem with medical integrity. When 300 papers don't contain enough information for you to question your campaign against ivermectin, the problem isn't with the papers or the medication, in my opinion.

I'm not promoting ivermectin. I've mentioned it as part of a whole list of items with the intention of sharing potentially life-saving recommendations that have been broadly utilized by doctors and governments all over the world, despite your preferences.

I won't mention the I-MASK+ protocol, etc. I shared it because it has a great reputation among those who have used it. I know a lot of people who have used it, or something similar to it. They are all alive, and none were hospitalized. They obviously weren't harmed by it. But it's your right to censor what people can mention on the site, and I'll abide by that.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply todanimal7777

If you are recommending something, why is it my responsibility to do your research to confirm or disprove your recommendation?

I've provided here a list of 2,246 PubMed papers reporting water and COVID-19: pubmed.ncbi.nlm.nih.gov/?te...

Should I use that result to recommend drinking water to treat COVID-19?

Anecdotal reports are not proof of an effect. You ideally need random assignment and a double blind arrangement to determine whether an intervention is worthwhile.

Neil

cajunjeff profile image
cajunjeff in reply toAussieNeil

Further to your point Neil:

WASHINGTON, DC – The American Medical Association (AMA), American Pharmacists Association (APhA), and American Society of Health-System Pharmacists (ASHP) strongly oppose the ordering, prescribing, or dispensing of ivermectin to prevent or treat COVID-19 outside of a clinical trial.

ama-assn.org/press-center/p...

And:

2 fringe doctors created the myth that ivermectin is a 'miracle cure' for COVID-19 — whipping up false hope that could have deadly consequences

businessinsider.com/why-ive...

cajunjeff profile image
cajunjeff in reply todanimal7777

Danimal, that set of 300 papers was previously discussed on here. I think posting the link is akin to promoting ivermectin. Maybe I just misunderstood.

And you do mention the controversial I mask protocol in the same sentence where you say you won’t mention it. So again, it seems as if you are promoting that protocol while at the same time saying you are not.

I am not pro or anti ivermectin as such, I am just more inclined to follow the advice of mainstream organizations like the American medical association as opposed to a few doctors, some of whom lost privileges at their hospitals.

Anecdotal evidence that one took ivermectin and a bunch of supplements and survived Covid proves little in the absence of double blind studies.

If you gave me a random hundred newly diagnosed Covid cases and I gave them all peanut butter sandwiches to treat them, 98 or 99 of them would recover from Covid. That doesn’t prove peanut butter treats Covid.

If ivermectin ever gets broad approval among mainstream scientists, I would take it. Right now it’s mostly fringe doctors supporting it, that’s the issue for me.

neurodervish profile image
neurodervish in reply tocajunjeff

Well said Jeff. May I add that most of these fringe doctors are profiting financially from their "cures" whereas the vaccine is free to the public. Hmmm... 🤔

cajunjeff profile image
cajunjeff in reply toneurodervish

That is true with some of these doctors. They look like they are non profits but upon further investigation some of these guys are prescribing ivermectin online by doing up to $300 telemedicine doctor visits.

time.com/6092368/americas-f...

neurodervish profile image
neurodervish in reply tocajunjeff

Every single one I looked at profits in some way. Many have "functional" medicine practices. Others have subscription memberships. Some make money off youtube. What they all have in common is spreading disinformation, while profiting from selling treatments that are inferior to a scientifically proven superior (FREE) vaccine.

Vlaminck profile image
Vlaminck in reply tocajunjeff

No one is mentioning the once highly touted hydrochloroquine. Poor forgotten hydrochloroquine. (Guess the bleach idea just never caught on at all, thank goodness.)

neurodervish profile image
neurodervish in reply todanimal7777

Unfortunately, you've provided an outdated haystack and asked us to find the needle in it. That's not exactly how proof of hypothesis is supposed to work.

PSP52 profile image
PSP52

Ivermectin is an antiparasitic drug. It is used in humans to treat parasitic diseases. I am a retired medical librarian. I know how to do research. What I found is that there is not enough information from clinical trials to provide guidance for CoVid patients taking the drug.

Please look at this site covid19treatmentguidelines....

As a side note I have experience with Ivermectin...for my dog. I live in the woods and my Pomeranian dog contracted mange probably from a mangey looking fox that was roaming the neighborhood. My vet prescribed Ivermectin. It took about a month for the mange to clear up. I asked the vet if I could put a meatball out with an Ivermectin pill in it for the fox to eat. He said no because in the wrong dose, it could seriously harm other animals. My point is Ivermectin needs serious study before it is given to humans for illnesses other than parasitic infections.

Thanks to Neil, Cajun Jeff, Neurodervish and others for your responses.

Can we please move on to other issues facing CLL patients like myself and their caregivers?

SofiaDeo profile image
SofiaDeo

Until the (numerous) trial results are in, ivermectin is NOT recommended :

pubmed.ncbi.nlm.nih.gov/347...

When one dismisses "studies" that are unscientific/biased, there currently isn't enough valid evidence to recommend an ivermectin dose that will be helpful with Covid infection prevention and/or treatment.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toSofiaDeo

Thank you SofiaDeo,

Also from the PubMed list provided by Daminal, from September 2021, with my emphasis: pubmed.ncbi.nlm.nih.gov/345...

"Three OSs and 14 RCTs were included in the review. Most RCTs were rated as having some concerns in regards to risk of bias, while observational studies were mainly rated as having a moderate risk of bias. Based on meta-analysis of RCTs, the use of ivermectin was not associated with reduction in time to viral clearance, duration of hospitalization, incidence of mortality and incidence of mechanical ventilation. Ivermectin did not significantly increase incidence of adverse events. Meta-analysis of OSs agrees with findings from RCT studies."

Even from June 2020

pubmed.ncbi.nlm.nih.gov/341...

" Conclusions: In comparison to SOC or placebo, IVM (ivermectin) did not reduce all-cause mortality, length of stay or viral clearance in RCTs in COVID-19 patients with mostly mild disease. IVM did not have an effect on AEs or severe AEs. IVM is not a viable option to treat COVID-19 patients."

Daminal, this is not about censorship, baiting, or anti-therapeutic political circuses. It is about caring that people with CLL have access to reputable information, as encapsulated in our community guidelines cllsupport.org.uk/informati...

so that we can make all make informed choices to help us live well with CLL.

The relevant community guideline clauses, with my emphasis, are:

22. Please show a clear distinction between personal experience or opinion and evidence-based information. Theories or supposition which are not supported by evidence – i.e. a link to that evidence, must be made clear that it is personal conjecture and not fact.

13. Please do not promote the use of alternative treatments, as opposed to complementary therapies. Alternative treatments may deter members from seeking appropriate professional medical assistance.

I appreciate that you will no longer mention I-MASK+ or ivermectin again, so that as PSP52 said earlier, "Can we please move on to other issues facing CLL patients like myself and their caregivers." Ivermectin sadly was made into a political issue, which is why it is even more important to base our supportive suggestions on reputable sources, as you have acknowledged in providing that list of papers from PubMed.

Neil

avzuclav profile image
avzuclav

To ivermectin promotors and detractors: let's encourage everyone to help us find out who's correct?

If you or someone you know tests positive, join an at-home COVID treatment trial. Phone the clinical trial team within 10-14 days of testing positive and 7-14 days of experiencing symptoms. They will ship you treatments (possibly ivermectin) and will follow-up with questionnaires.

USA: activ6study.org/ UK: principletrial.org/

AussieNeil any similar trials in Australia?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toavzuclav

The interest in ivermectin as a potential prophylaxis and treatment for COVID-19 came out of an encouraging Australian laboratory (in vitro) study of human cells, which was looking into repurposing drugs approved for other illnesses to fight the pandemic prior to vaccine availability. We know from CLL research that it is very difficult to translate laboratory studies into proven effective human patient (in vivo) treatment, usually because of the difficulty of (a) getting a sufficient serum concentration without causing unacceptable side effects and adverse effects and (b) biological processes that counter the drug's effects. The beauty of repurposing approved drugs is that we know their safety profile, provided the effective dose is the same or less than that approved. Unfortunately, even with a slightly higher than recommended dose than when used for worm treatment in humans, well constructed and executed human clinical trials have been disappointing, as the PubMed abstract SofiaDeo referenced above summarised: healthunlocked.com/cllsuppo...

Here's the latest update on Australian ivermectin COVID-19 research from 17 August 2021, with my emphasis:-

Monash University research into Ivermectin as a potential treatment for COVID-19 is being undertaken by Dr Kylie Wagstaff from the Monash Biomedicine Discovery Institute.

Since her team's initial publication showing that Ivermectin could prevent SARS-CoV-2 infection in cells in the laboratory, funding has been secured to undertake additional preclinical tests to better understand the dosing regimen most effective under laboratory conditions.

The findings from this work are now being prepared for submission to a peer-reviewed scientific journal. Monash University is not in a position to communicate on the outcome of this work until it has been subject to rigorous peer review. The pre-clinical laboratory-based findings will be communicated when the research is peer-reviewed and accepted for publication.

Alongside this work, Dr Wagstaff has been working to establish a blinded and randomised clinical trial. The low numbers of COVID cases in Australia in 2020 meant the planned trial in Australia had to be paused. The establishment of a trial depends on Australian and overseas circumstances, and will be communicated when we are in a position to do so.

Dr Wagstaff remains committed to undertaking a trial that will provide a definitive answer to whether or not Ivermectin is a potential treatment for COVID-19.

monash.edu/discovery-instit...

With respect to Australian Health recommendations on the use of ivermectin with COVID-19:-

"The Australian National COVID-19 Clinical Evidence Taskforce has issued a strong recommendation against the use of ivermectin outside of randomised clinical trials.

The Taskforce found that there is a current lack of available evidence for or against the use of ivermectin, and more robust, well-designed randomised controlled trials are needed to demonstrate whether or not ivermectin is effective."

covid19evidence.net.au/faqs...

Australia's Therapeutic Goods Administration (TGA) strongly discourages self-medication and self-dosing with Ivermectin for COVID-19 as it may be dangerous to your health. There is insufficient evidence to validate the use of Ivermectin in patients with COVID-19.

tga.gov.au/media-release/ri...

Neil

SofiaDeo profile image
SofiaDeo in reply toAussieNeil

And I will add, this "repurposing of older drugs for newer uses" has been used in the past for other disease states, and continues to be done, even with CLL specific indications. There is (relatively new) software developed that has the 3 D molecular profile of thousands and thousands of drugs and chemicals being entered in a database. As we learn more about various disease states, and identify the receptor sites of molecules active in key parts of a disease process, a 3D model of a receptor site is also entered into a computer. Then the computer will "search" known compounds to see if any "fit" various parts of the receptor for a disease state. For Covid, the spike protein structure is generating a lot of interest because it's fairly unique to coronaviruses, large (relatively speaking), and unlike other parts of common molecules.

This is a gross oversimplification of the process, of course, but the outline is valid.

LeoPa profile image
LeoPa

Not only those with comorbiditiess and advanced age should take the vaccine. This guy thought he did not need it either. In 4 weeks from perfect health to the cemetery.

dailymail.co.uk/news/articl...

Vlaminck profile image
Vlaminck

Hi, Danima, in the FWIW department, want to say that I had been taking baby aspirin nightly -- anti-inflammatory, heart stuff and why not? And then doing research on epstein barr, which is my CLL's sponsor and always lurking, I came across reference of using for research aspirin as a trigger turning EBV from latent to lytic. So no more aspirin for me as I feel I am fighting two intertwined diseases of equal importance (actually EBV maybe more important as I believe it gave me CLL and will continue its effort.) In contrast, some nutriceuticals like apigenin and luteolin, among other supplements, tend to work toward preventing the reactivation. (I do wonder how many of us actually have active or recent epstein barr off and on, from what I've read.)

Lavinia-Blue profile image
Lavinia-Blue

Man whose wife won a lawsuit to treat his COVID-19 with ivermectin has died - usatoday.com/story/news/hea...

Vlaminck profile image
Vlaminck in reply toLavinia-Blue

He died after being poisoned by the ivermectin. Sad there is so much misleading propaganda out there.

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