My Covid experience.

[fishnman]

I write this as only the facts. I don’t intend to make any political statement, nor want to argue. Just the facts:

On 7/7/22 my wife and I hosted two young families for a cookout. By the end of the evening, I felt pretty tired but chalked it up to a day of hustling around smoking meats, husking corn and other preparations. The next morning I was dragging and by evening had a temp of 100F, and tested positive. (Of course I called those I had infected right away.)

My background is 10.5 years on W&W. When first diagnosed, the local oncologist scheduled me for FCR the next week but fortunately I asked for a second opinion and went to a CLL specialist who said “NO!!!” I know that some day I may need an experimental drug that may well lengthen my life. But I have never experimented with drugs and when the Covid vaccine came out and I learned that it had not been tested on CLL patients, I declined. Neither my specialist nor PCP would tell me that my body would develop antibodies from it and although they both recommended it, neither pushed really hard.

I followed the CDC guidelines, quarantined for 5 days and hoped for the best. I wasn’t real sick but didn’t have much energy. Mornings I had no fever but by night it was hovering near 100F daily. My wife said “you need to call the Dr.” The PCP prescribed Paxlovid, which my wife picked up in the afternoon of 7/11 and I took the first dose of the two meds. That night I awoke and stood in my dark room to what seemed like I was in the middle of a fireworks display. I don’t know whether I was hallucinating or whether it was affecting my eyesight, but NO more Paxlovid for me! (I’m also allergic to insect stings and radioactive iodine.) The next day I found I had lost most of my sense of taste and smell, but was it due the Paxlovid or the Covid?

The daily fever bounce continued, I felt tired and developed a cough. Once again my wife said “do something because you are not getting better.” I contacted my CLL doc, was referred to their Covid team and cleared for Betlovimab infusion on the 7/21 but they made it clear I was outside the usual treatment window so it may not help. I didn’t feel up to the three hour drive (each way) for a treatment that may not help so I did not go. The symptoms continued: laziness, fever by evening and the cough worsened. Still tested positive.

On 7/25 my wife (don’t I love her) said “your cough is worse and you are not getting better.”

I thought I had used up the conventional treatments, so I called a physician who offered some hope. She listened closely to my saga and prescribed 18mg/day Ivermectin for 5 days, (which I had to pay cash of $179 for at a small compounding pharmacy near my house) a good cough medicine, prednisone and something for the post nasal drip.

On 7/27 I awoke feeling great and have had no fever since. It took a week for my cough to go completely away and my energy has almost completely returned. I now feel nearly myself.

At 69 years of age, I’ve had pretty good health overall and I thank God for it. (My wife’s been pretty terrific too!)

Dan

[fishnman]

On 7/27 I tested negative.

[DawnRedwood in reply to fishnman]

Good to hear you tested negative!!! AND..............whatever works for you...........is what you should do!!! Glad you found a doctor who treated you well and you got better. That's ALL that matters!!! Stay well!!!!

[Newdawn Administrator]

You’ve had a rough time Dan and thank goodness you had access to treatments. I do think it unlikely however that you contracted Covid the day of the cook-out (b-b-q to us). There’s every chance you already had it if you were displaying symptoms by the end of the day.You may be unusual in that regard but it took me 3 days from infection to start of showing any signs at all.

Yes your wife was there guiding you all along! 👍

Newdawn

[fishnman in reply to Newdawn]

Yes, I'm sure I was the Typhoid Mary of the cookout. Most of them got it.

[AussieNeil Partner Administrator]

From theconversation.com/regress...

Making sham treatments look good

Regression to the mean is unwittingly exploited by quacks who often see patients when they are at their lowest. As many diseases have a natural ebb and flow, seeing patients when they are at their worst is the best time to exploit regression to the mean, because any treatment will appear to cause improvements in enough patients to make it look broadly effective.

Neil

[Paxtonroadend in reply to AussieNeil]

Hi Neil! Isn't the efficacy of medication somewhat dependent upon "mind over matter"? Even quack "remedies" [sic] can be efficacious for those who believe in them...

[AussieNeil Partner Administrator in reply to Paxtonroadend]

I've been meaning to write a post about the placebo and nocebo effects. These are the ways how our mind can influence our response to treatments. The effects can be very powerful in changing how we feel, but from what I've read, the effects don't extend to reversing cancer.

Neil

[Poodle2]

I'm very happy you have recovered well. Perhaps you also had a bit of luck and someone else would not have had the same journey. I think it's important to remember that. What matters most is that you are well🙏🏻

[AussieNeil Partner Administrator]

Sorry for my brief earlier reply, which was done well after midnight. I'm glad that you recovered.

Given we endeavour to maintain an evidence based ethos for our community, what you've shared is worthy of some review with regards to what likely happened.

You noted that you were feeling great after starting 2 days earlier on ivermectin, "a good cough medicine, prednisone and something for the post nasal drip". Importantly. this was after you thought that you "had used up the conventional treatments". It's a pity that you seem to have had a bad side effect from Paxlovid.

With respect to prednisone, per the Authors' conclusions of Systemic corticosteroids for the treatment of COVID‐19, from the Cochrane Library, published August 2021.

cochranelibrary.com/cdsr/do...

Moderate‐certainty evidence shows that systemic corticosteroids probably slightly reduce all‐cause mortality in people hospitalised because of symptomatic COVID‐19. Low‐certainty evidence suggests that there may also be a reduction in ventilator‐free days. Since we are unable to adjust for the impact of early death on subsequent endpoints, the findings for ventilation outcomes and harms have limited applicability to inform treatment decisions. Currently, there is no evidence for asymptomatic or mild disease (non‐hospitalised participants).

There is an urgent need for good‐quality evidence for specific subgroups of disease severity, for which we propose level of respiratory support at randomisation. This applies to the comparison or subgroups of different types and doses of corticosteroids, too. Outcomes apart from mortality should be measured and analysed appropriately taking into account confounding through death if applicable.

If only we could clone patients then see how the clones fared on different treatment arms. Given we can't do that, we try to approach that theoretical standard with double blind random assignment clinical trials. The random assignment helps us to approach similar patient populations in arm(s), for the experimental drug(s). The blinding of the medical staff also assists here. They aren't able to (perhaps subconsciously) assign patients where they think they will do best. Blinding the patient counters the influence of the placebo effect.

With respect to ivermectin, large, well constructed clinical trials have not found the large, statistically significant differences in survival that those who favour ivermectin claim. Sadly, many trial reports claiming to show meaningful benefits from ivermectin have been withdrawn after evidence was found of fake data being used or even that a trial wasn't run. See healthunlocked.com/cllsuppo... for more information.

Neil

[81ue]

Just the reminder to anyone reading about covid treatments: when you take cholesterol meds (statins), then kidneys may be too damaged to also take ivermectin and taking that drug becomes dangerous in that situation. As long as the doctor prescribed a treatment and it's not self-medicating, then we are safer in treatment decisions. Each person's health history is different, and each patient really should work with their doctor especially if other medications are being taken.

[CLLCalifornia-USA]

Thanks so much for sharing your experience. I think the combination of Ivermectin, your wife and a guardian angel pulled you through. I enjoy hearing positive outcomes. Stay strong. Sally

[BeckyLUSA]

My CLL specialist is no longer using Paxlovid, but is using Monoclonal Antibody Infusions. Due to the possibility of a rebound of the COVID.

[Wishing1202]

My last covid was in the middle of July. I had over 103 temperature, cough, congestion, headache, fatigue. High fevers were at night, but that's normal for me. My spouse had the same symptoms with lower temperatures, but still at 101. We took children's Mucinix, cough drops, zinc, & advil. Nothing relieves the headache.

It took 2 weeks to fully recover and test negative.

[fishnman in reply to Wishing1202]

Thanks for the reply and I'm glad you're through it. It's so strange how we are all affected differently by virus. I had only a minor headache but it took a long time to get through altogether.

[skipro]

So another success in a CLL patient with Ivermectin?

I’ve heard it’s almost impossible to get because of all the nay sayers in government agencies?

Do you mind telling me which city you reside in?

Thx

Snowshoe

I’m in Salt Lake

[fishnman]

I'm in Beaufort NC. My pharmacy is 2 miles from my house but I got the script from FLCCC in Fla via phone conference. You can order from India as they ship to the US but it takes a long time to get it. They don't ship to Australia because their government experts KNOW it does not work!

[fishnman in reply to fishnman]

By the way, others have reached out to me privately to say how it work great for them and their family members.

[AussieNeil Partner Administrator in reply to fishnman]

That's to be expected as I explained to you in my first reply. It's because they are not aware of the well known statistical property known as Regression Toward the Mean: en.wikipedia.org/wiki/Regre...

Per the above Wikipedia reference, with my emphasis; "Take a hypothetical example of 1,000 individuals of a similar age who were examined and scored on the risk of experiencing a heart attack. Statistics could be used to measure the success of an intervention on the 50 who were rated at the greatest risk. The intervention could be a change in diet, exercise, or a drug treatment. Even if the interventions are worthless, the test group would be expected to show an improvement on their next physical exam, because of regression toward the mean. The best way to combat this effect is to divide the group randomly into a treatment group that receives the treatment, and a group that does not. The treatment would then be judged effective only if the treatment group improves more than the untreated group."

This is why alternative medicine practitioners (like the FLCCC) stay in business. People exhaust the usual treatments and look into alternative treatments. Coincidentally, enough have approached the stage where they are about to recover from their illness due to this statistical property. They think the alternative medicine worked and the alternative practitioner does well out of positive anecdotal referrals.

Pierre Kory is president and co-founder of the Front Line COVID-19 Critical Care Alliance (FLCCC) and has been a major promoter of ivermectin as a prophylactic and treatment for COVID-19

en.wikipedia.org/wiki/Pierr...

It didn't stop him from getting COVID-19

menshealth.com/health/a3828...

One of the drug's biggest promoters, Dr. Pierre Kory, a critical care doctor based in Wisconsin, claimed to take the drug weekly last December during a U.S. Senate hearing. Eight months later, he contracted Covid-19, the Milwaukee Journal Sentinel reported on Wednesday. Kory has not publicly stated if he is vaccinated against the disease.

Kory has testified twice to the U.S. Senate in support of ivermectin, stating that it is a "wonder drug" with "miraculous effectiveness" against COVID-19. The Journal Sentinel reports that he has since doubled down on taking the drug as treatment.

If ivermectin worked as well as the FLCCC claim, it would be obvious in well constructed clinical trials, but they all show little to no statistical advantage.

See: healthunlocked.com/cllsuppo...

Neil