Survey of Anosmia treatments - IVM or other treatments - share your experiences reversing covid19 anosmia (taste/smell loss) esp. if reversal was immediately after treatment start (i.e. looks like treatment helped immediately) (April 21, 2022)

submitted by stereomatch from self.Ivermectin2

Anosmia treatments - pre/post-covid19

I am trying to bring together the information on pre/post-covid19 anosmia (taste/smell loss) treatments.

Post-covid19 anosmia happens in 10-25 percent of covid19 patients - where it typically lasts for 1 to 3 weeks post-day8. However it can persist for months in some patients.

However, pre-covid19 cases of anosmia also exist - and some have anosmia from childhood and thus for very long times (I mention a case of childhood anosmia reversal after 40 years below).

This highlights the lost opportunity to address some longstanding anosmia cases - which may respond to new treatments that have emerged due to the covid19 experience (and the very many more cases of anosmia).

 

Anosmia treatments emerging from covid19 experience

I have some experience with IVM as an anosmia treatment. Most early treatment doctors have also seen this effect - just that there are some caveats (IVM doesn't necessarily work to prevent anosmia appearing - but it works post-day8 quite reliable to reverse it within 1-2 days). This day1-7 detail may have caused some early treatment doctors to think that anosmia may not reliably work to reverse anosmia. However post-day8 and long haulers seems to respond well to IVM.

I have advocated to early treatment doctors that anosmia reversal is the best way to mainstream IVM (much more effective than arguing about mortality benefit). Mortality benefit is a trap you cannot get out of (because the effect is small - most of the mortality benefit depends on how much steroids were given at day7-8 onwards).

 

Surveying the anosmia reversal treatments (anecdotal)

What has been your experience with reversing Anosmia using treatments - for example:

  • Ivermectin (dosing/duration - how fast was response?) - I have some experience with this (NOTE: usually IVM being used day1-7 does not always prevent anosmia appearing - which may mislead some into thing it will not be useful later - however post-day8 IVM works reliably at right dose in reversing anosmia in 1-2 days - long haulers anosmia also seems to respond in many such cases i.e. some reversal apparent within 12 hours)

  • Bee Propolis (I am aware of one such anecdotal case - 1 case promising but not conclusive since could be coincidental) - see: https://www.reddit.com/r/CovidVaccinated/comments/oqfwdd/sudden_hearing_loss_after_first_moderna_vaccine/h6cb30y

  • LSD (not recommending) - one case in a substack article - see: https://www.reddit.com/r/anosmia/comments/p457x6 - UPDATE: (April 22, 2022) - and one in a comment there which reports anosmia since birth reversing at age 40 (which he now has trouble understanding - brain not been trained to understand smell/associations) - see: https://www.reddit.com/r/anosmia/comments/p457x6/comment/h90gdpy/

  • Steroids (with standard steroids-at-day8 protocol, usually that does not reverse anosmia - I am not aware if with other dosing protocols if it helps) - see Steroids note below for some more

  • Zinc (some mention this can help) - but no direct anecdotal cases I am aware of

  • Magnesium (some mention this can help) - but no direct anecdotal cases I am aware of

 

UPDATE: (April 22, 2022)

 

UPDATE: (April 25, 2022)

 

UPDATE: (May 17, 2022)

  • Camostat Mesylate reduced incidence of anosmia when given early during covid19 disease - see twitter thread:

https://twitter.com/VirusesImmunity/status/1515367841498861574

Prof. Akiko Iwasaki

Apr 16, 2022

This randomized double-blind placebo-controlled phase 2 trial gave patients (within 3 days of testing PCR+) either oral camostat mesylate or placebo pills, 4x/day for 7 days. Note the lower smell/taste scores (meaning better ability to smell and taste) in camostat group (2/)

 

UPDATE: (May 17, 2022)

Hi! Like other users I too ended up in the world of anosmia after concussion and brain hemorrhage (hit by a bus,lucky but lol). The anosmia was complete but after a couple of months I acquired a phantom odor that changes in intensity. At that time I did not think it was related to anything, but besides the sense of smell I partially lost my balance and at that time I had been taking betahistine medication for a few days. The balance problem comes and goes, and a week ago I started taking the medication again following a crisis (probably due to low blood pressure) and suddenly the phantom smell has become stronger and stronger and I'm starting to feel variations based on what I'm smelling, although they are not at all related to what I'm smelling. I used to work in a wine shop so I had a particularly developed sense of smell. Did any of you happen to experience something similar? A big hug to all of you

NOTE: betahistine has been used for vertigo (is thought to improve blood supply to inner ear) and tinnitus:

https://www.sciencedirect.com/science/article/pii/S1808869415306844

Betahistine in the treatment of tinnitus in patients with vestibular disorders

 

UPDATE: (May 18, 2022)

  • Olfactory training/smell training - see the section below on officially recognized treatments

 

UPDATE: (Sept 16, 2022)

Ok it's not perfect but definitely can taste and smell with repeated use of the product now. Sudafed blocked nose - 0.5% xylometazoline hydrochloride

Thankfully got it back - still go through phases of loss, but works pretty well if I remember to use it

Criticism seems to be that this product should not be used for very long - as tends to require higher and higher doses over time.

 

UPDATE: (Sept 17, 2022)

Paxlovid

I have been meaning to find some information on Paxlovid and anosmia reversal.

With the rise of use of Paxlovid in the mainstream - there should be many more cases Paxlovid use and it's impact on anosmia reversal.

Here is the first data point - a user reports Paxlovid use while suffering from anosmia.

Here is his report and timeline:

 

  • day1 - tested positive rapid test

  • day2 - PCR positive test

  • day3 - smell gone - got PCR results - got prescribed Paxlovid

  • day4 - started Paxlovid-day1

  • day5

  • day6 - night smell improved

  • day7 - smell improved more - some smells still gone - taste still altered (yes "Paxlovid mouth" also - infamous "metallic taste") - rapid test still positive

  • day8 - Paxlovid-day5

  • day9 - ...

 

UPDATE: (Jan 7, 2023)

Stellate Ganglion Block (SGB) doesn't seem to always work - but when it has worked it has been as fast as Ivermectin in reversing anosmia.

This is intriguing and may point to mechanisms behind the anosmia.

Is anosmia explained by viral persistence, inflammation, or dysautonomia?

 

https://www.qeios.com/read/0SSOBL

Stellate ganglion block for anosmia and taste disturbance due to Long-COVID

Gaurav Chauhan1

Jun 11, 2022

The patient underwent a right-sided stellate ganglion block under ultrasonographic guidance, with 4 ml of 0.25% Bupivacaine. The patient reported a partial return of her sense of smell within 24 hours. The patient underwent the left-sided SGB after 72 hours and reported a complete resolution of anomia 24 hours after the second SGB. The patient commented that her altered taste sensation resolved a few days after the last block.

 

Discussed here:

https://twitter.com/Dysautonomia/status/1571513601181065216?t=irWXSdYP2XhbwspVqQS5wA&s=19

University of Pittsburgh doctors report the successful treatment of anosmia (loss of smell) and dysgeusia (disturbed taste) in a #LongCOVID patient after a stellate ganglion block. They theorize that the loss of smell/taste is due to #dysautonomia. 1/

https://www.reddit.com/r/longhaulresearch/comments/wvsby6/stellate_ganglion_block_for_anosmia_and_taste/ Stellate ganglion block for anosmia and taste disturbance due to Long-COVID

https://www.greenvillebusinessmag.com/2022/04/11/397116/procedure-restores-taste-smell-to-patients-who-had-covid-19

Procedure Restores Taste, Smell to Patients Who Had Covid-19

By David Dykes

Apr 11, 2022

And after talking with her and researching the Texas procedure, called a Stellate Ganglion Block, Loudermilk performed it on her in March. 

“Within minutes, I could smell spearmint, I could taste chocolate, and Diet Coke no longer tastes like nail polish remover,” she said. “And I had pizza for lunch that day, and it was just as good as I remember.”

He uses fluoroscopy to visualize the structures in the neck, he said, and then injects a local anesthetic into a cluster of nerves called the stellate ganglion.

“It resets the olfactory nerve,” he said. 

So far, based on results from Texas, the results are long term and hopefully permanent, he said.

But as with any medical intervention, there are some risks associated with the block, including bleeding, infection, and nerve injury, he said. And those performing it need specialized training, he said.

 

SGS procedure and risks

SGS is usually performed by a skilled doctor:

https://my.clevelandclinic.org/health/treatments/17507-stellate-ganglion-block Stellate Ganglion Block

SGB is a surgical procedure where anesthetic is injected into the neck area around the stellate ganglion - usually takes 30 minutes and can go home the same day.

But there can be risk of nerve damage - and possibly seizures.

So the more experienced the doctor, the better.

 

Commentary:

With arrival of Omicron, anosmia cases became rarer.

But with Omicron BA.5 etc., anosmia seems to have returned.

Now nearly as many symptomatic Omicron BA.5 case seem to have anosmia, as did in the pre-Omicron period.

 

Shorter anosmia duration with Omicron BA.5

The difference is that, if in pre-Omicron period, there was anosmia reversal in typically 3-4 weeks, now with Omicron BA.5 the reversal seems to happen faster - typically 1 week.

And in some cases within a few days (on it's own i.e. without treatment for anosmia).

This makes it harder to associate time-sensitive changes in anosmia - with the drug treatment in use.

As with shorter anosmia reversal time period, the likelihood of coincidental reversal becomes larger. And spontaneous anosmia reversal a less rare/surprising event.

 

What would be more telling is if a Paxlovid user fails to reverse anosmia partially in a time-sensitive manner after starting Paxlovid.

If this happens, it would make Paxlovid perform poorer than Ivermectin on this front - since Ivermectin seems to reverse anosmia palpably with 12 hours - and fully reverse within 1-2 days (if partial, repeat after a week).

And if with Paxlovid, one sees a pattern of time-sensitive anosmia reversals - every time - that should be interesting.

 

 

Officially recognized treatments for post-covid19 anosmia

Officially Ivermectin is not even close to being on the radar for anosmia reversal.

Olfactory training/smell training seems to be the default treatment strategy with the greatest brand awareness.

Even if there is benefit - the time required for recovery seems to be much longer than a few days (usually weeks to months) - and is probably costlier due to the guidance/training of the patient required over a longer period of time until recovery.

 

Dr Roger Seheult (MedCram) examines Olfactory Training for post-covid19 anosmia in a YouTube video - as discussed in this Twitter thread:

 

https://twitter.com/RogerSeheult/status/1518717182091272192

Roger Seheult, MD

Actually olfactory training has much better evidence:

It starts at minutes 25

https://www.youtube.com/watch?v=vkSI87l8eqc

 

https://twitter.com/stereomatch2/status/1518739729046462464

stereomatch

@RogerSeheult Thanks for the reminder:

Actually olfactory training has much better evidence:

at the 25:20 minute mark:

Link to section on olfactory training:

https://www.youtube.com/watch?v=vkSI87l8eqc&t=1520

 

https://twitter.com/stereomatch2/status/1518739805013696512

stereomatch

Partial transcript of that section of your video on olfactory training etc.:

https://www.reddit.com/r/covidlonghaulers/comments/nsw11d/comment/h1fxrsv/

 

More on olfactory training/smell training:

https://www.news-medical.net/news/20210118/Treating-post-infectious-smell-loss-in-COVID-19-patients.aspx Treating post-infectious smell loss in COVID-19 patients Interview conducted by Emily Henderson, B.Sc. Jan 18 2021

 

 

Other studies about anosmia treatment alternatives

This study suggests a 15-day course of steroids with nasal irrigation with steroids/mucolytic/decongestant solution - gives reasonably good results:

 

https://search.bvsalud.org/global-literature-on-novel-coronavirus-2019-ncov/resource/pt/covidwho-1320058 Interventions for the treatment of persistent post-COVID-19 olfactory dysfunction.

RESULTS:

We included one study with 18 participants, which compared the use of a 15-day course of oral steroids combined with nasal irrigation (consisting of an intranasal steroid/mucolytic/decongestant solution) with no intervention.

Psychophysical testing was used to assess olfactory function at baseline, 20 and 40 days.

Systemic corticosteroids plus intranasal steroid/mucolytic/decongestant compared to no intervention Recovery of sense of smell was assessed after 40 days (25 days after cessation of treatment) using the Connecticut Chemosensory Clinical Research Center (CCCRC) score.

This tool has a range of 0 to 100, and a score of ≥ 90 represents normal olfactory function.

The evidence is very uncertain about the effect of this intervention on recovery of the sense of smell at one to three months (5/9 participants in the intervention group scored ≥ 90 compared to 0/9 in the control group; risk ratio (RR) 11.00, 95% confidence interval (CI) 0.70 to 173.66; 1 study; 18 participants; very low-certainty evidence).

Change in sense of smell was assessed using the CCCRC score at 40 days.

This study reported an improvement in sense of smell in the intervention group from baseline (median improvement in CCCRC score 60, interquartile range (IQR) 40) compared to the control group (median improvement in CCCRC score 30, IQR 25) (1 study; 18 participants; very low-certainty evidence).

Serious adverse events andother adverse events were not identified in any participants of this study; however, it is unclear how these outcomes were assessed and recorded (1 study; 18 participants; very low-certainty evidence).

 

Article theorizes that steroids may help - and smell training may help:

https://consultqd.clevelandclinic.org/treating-smell-loss-in-covid-19-patients/ Treating Smell Loss in COVID-19 Patients A Rhinologist offers advice for managing one of the predominant symptoms of positive COVID-19 cases.

“One study used objective smell testing and found that only 15% of COVID-19 patients experience a loss of smell for more than 60 days and less than 5% experienced it for longer than six months. That’s is really comforting news,” Dr. Sindwani notes.

 

This study suggests post-covid19 or residual anosmia is more common in "mild covid19" than more severe covid19.

I wonder if there is either survivor bias (in the severe group) - or difficulty in evoking a response in the more severe segment regarding anosmia (given the severe group is suffering from far greater issues of oxygen insufficiency etc.).

It should be recalled that for large US hospitals that disregard FLCCC or similar early treatment protocols and continue to insist on a low dose Dexamethasone 6mg dose + Remdesivir - usually have a 22-25% death rate overall - and an 80% death rate among ICU patients.

Compare this with hospitals using the FLCCC protocols for treating early - which half both those numbers.

It could be asked if 80% of the ICU patients are dying - could it be that we never found out about anosmia status because patients were suffering from far greater issues, or likely to die before being interrogated on their condition?

 

https://onlinelibrary.wiley.com/doi/10.1111/joim.13209 Prevalence and 6-month recovery of olfactory dysfunction: a multicentre study of 1363 COVID-19 patients 05 January 2021

A total of 328 patients (24.1%) did not subjectively recover olfaction 60 days after the onset of the dysfunction. The mean duration of self-reported OD was 21.6 ± 17.9 days.

Objective olfactory evaluations identified hyposmia/anosmia in 54.7% and 36.6% of mild and moderate-to-critical forms, respectively (P = 0.001).

At 60 days and 6 months, 15.3% and 4.7% of anosmic/hyposmic patients did not objectively recover olfaction, respectively.

The higher baseline severity of objective olfactory evaluations was strongly predictive of persistent OD (P < 0.001).

Conclusion

OD is more prevalent in mild COVID-19 forms than in moderate-to-critical forms. OD disappeared in 95% of patients regarding objective olfactory evaluations at 6 months.

 

This article discusses:

  • olfactory training

-intranasal sodium citrate ("which is thought to modulate olfactory receptor transduction cascades")

  • intranasal vitamin A ("which may act to promote olfactory neurogenesis")

  • omega-3 supplementation

 

https://jamanetwork.com/journals/jama/fullarticle/2766523 Olfactory Dysfunction in COVID-19 Diagnosis and Management May 20, 2020

Olfactory training involves repeat and deliberate sniffing of a set of odorants (commonly lemon, rose, cloves, and eucalyptus) for 20 seconds each at least twice a day for at least 3 months (or longer if possible).

Studies have demonstrated improved olfaction in patients with postinfectious OD after olfactory training.9 Olfactory training can be considered for patients with persistent COVID-19–related OD because this therapy has low cost and negligible adverse effects.

Oral and intranasal corticosteroids have been used to exclude an inflammatory component in patients with postinfectious OD.

However, corticosteroids are not currently recommended for individuals with postinfectious OD because evidence of benefit is lacking and there is a potential risk of harm.

Other medications that have shown promise in postinfectious OD include intranasal sodium citrate, which is thought to modulate olfactory receptor transduction cascades, intranasal vitamin A, which may act to promote olfactory neurogenesis, and systemic omega-3, which may act through neuroregenerative or anti-inflammatory means.9,10

The latter 2 medications may serve as adjuvant therapies in olfactory training. However, to date, there is no evidence that these therapies are effective in patients with OD related to COVID-19.

 

This article mentions the above supplements - and also:

  • Zinc

  • steroids

 

https://www.sciencedirect.com/science/article/pii/S2590257121000225 Pathophysiology and possible treatments for olfactory-gustatory disorders in patients affected by COVID-19

In general, evidences show that there is no specific treatment for olfactory-taste disorders induced by SARS-CoV-2, even though some treatments have been used and have shown some promising results, such as olfactory training, intranasal application of sodium citrate and vitamin A, as well as systemic use of omega-3 and zinc.

Corticosteroids have also been used as a pharmacological approach to treat patients with olfactory dysfunction with some contradictory results.

 

 

Anosmia treatment possibilities

Please try to provide as much info on dose/duration and how anosmia reversed in terms of days.

If you tried some treatments with intent/expectation of reversing anosmia, but they didn't work (or worked partially) - also report those (dose/duration and response over time).

Also indication how long ago you had covid19 (i.e. how long you have had the anosmia - and if there has been any change in it over time).

 

You are welcome to post reference to this post on other forums - so we have the widest reach.

If you have some suggestions for forums on which to post this, please comment below.

I have already posted to the links below.

Thanks.

 

Range of post-covid19 anosmia symptoms

Symptoms in covid19 anosmia patients:

  • Burnt smell

  • food tastes low salt (as a result if cook has it the food turns out too salty for others)

  • Food smelling rotten

  • some taste but not smell

  • complete absence of taste/smell

 

References:

Originally posted at:

https://old.reddit.com/r/ivermectin/comments/u90dje/survey_of_anosmia_treatments_ivm_or_other/

Mirrors:

https://saidit.net/s/Ivermectin/comments/96gd/survey_of_anosmia_treatments_ivm_or_other/

https://saidit.net/s/Ivermectin2/comments/96ge/survey_of_anosmia_treatments_ivm_or_other/

https://saidit.net/s/covid19anosmia/comments/96k7/survey_of_precovid19_and_postcovid19_anosmia/

Cross-posted here:

https://www.reddit.com/r/ScienceUncensored/comments/u90rrp/survey_of_postcovid19_anosmia_treatments_ivm_or/

https://www.reddit.com/r/vaccinelonghaulers/comments/u90u57/any_cases_of_postvax_anosmia_related_survey_of/

https://www.reddit.com/r/anosmia/comments/u9dh8p/survey_of_precovid19_and_postcovid19_anosmia/

https://www.reddit.com/r/covid19anosmia/comments/u9gcsr/survey_of_precovid19_and_postcovid19_anosmia/

 

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[–]Amirr010 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (0 children)

Anosmia, or loss of smell, can significantly impact quality of life. Treatments are evolving, with some emerging options showing promise. Among these, the use of 100 units of botox has been explored for its potential to alleviate symptoms by targeting nasal and olfactory nerve pathways. While still under investigation, Botox injections may offer a novel approach for patients who have not found relief through conventional methods. Ongoing research will determine the efficacy and safety of this treatment.