Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

[dreampop]

I'd go in 3x a week for this treatment if I could find a doctor to do it. I would want it done right. Problem is I can't imagine any doctor would be game.

 

[Hutan]

Virtually everyone in my family has a history of many ear infections and tonsillitis and sinus infections. I and my son get sore throats and tender neck glands when we have PEM.

I've bought some of the BLIS K12 probiotic lozenges just now and will trial them.

 

[adreno]

Loss of smell does seem like a concern with intranasal zinc. I wonder if it depends on the dose. And perhaps something else than zinc could be used with the same effect.

Abstract
OBJECTIVE:
Commercial preparations of intranasal zinc gluconate gel are marketed as a remedy for the common cold. However, intranasal zinc has been reported as a cause of anosmia in humans and animals. Seventeen patients presenting with anosmia after the use of intranasal zinc gluconate are described.

METHODS:
The authors conducted a retrospective case series of patients presenting to a nasal dysfunction clinic and conducted complete history and physical examination on all patients, including nasal endoscopy. All patients underwent detailed odor threshold and identification testing.

RESULTS:
Threshold and identification testing revealed impaired olfaction in all patients. Inflammatory and traumatic causes of anosmia were excluded based on history, physical examination, and imaging. All patients diagnosed with zinc-induced anosmia or hyposmia reported sniffing deeply when applying the gel. This was followed by an immediate sensation of burning lasting minutes to hours. Loss of sense of smell was then perceived within 48 hours. Seven of 17 patients never developed symptoms of an upper respiratory infection.

CONCLUSIONS:
The zinc-induced anosmia syndrome, characterized by squirt, sniff, burn, and anosmia, occurs after the exposure of olfactory epithelium to zinc cation. It can be distinguished from postviral anosmia based on history.

https://www.ncbi.nlm.nih.gov/pubmed/16467707

 

[Hip]

intranasal zinc can cause a partial or complete loss of smell

Right, so it is not a good idea to spray zinc solution into the nose, because you may risk loss of smell.

It's possible that spraying zinc solution upwards into the nasopharynx via back of the mouth would be safer, though, because the olfactory bulb is located at the top of the nasal cavity, at some distance from the nasopharynx area (see the yellow-colored nerves of the olfactory bulb in the first image at the beginning of this thread). But it still might be risky, in terms of possible loss of smell.


Apparently, 130 people reported to the FDA that they lost their sense of smell (sometimes permanently) after use of Zicam nasal zinc products.

It is hard to find any precise info online about the concentration of zinc in these Zicam products, as they are sold as homeopathic products, and thus escape normal regulation. Wikipedia provides some info.

 

[barbc56]

If this supposedly cures 25 %, I really doubt the patients had me/cfs.

 

[Hip]

If this supposedly cures 25%, I really doubt the patients had me/cfs.

It is hard to say whether these patients had ME/CFS, or an ME/CFS-like syndrome.

But regardless, this treatment should be of major interest to anyone with post-vaccination ME/CFS, or a post-vaccination ME/CFS-like syndrome, or indeed any post-vaccination autoimmune condition, or even any post-vaccination disease in general, because severe chronic nasopharyngitis may be the cause of some of these post-vaccination conditions, and a treatment of zinc chloride and cotton swab ablation of the damaged nasopharyngeal epithelial cells may provide a cure, or some amelioration of symptoms.

And this should be of major interest to anyone with chronic nasopharyngitis. One of the implications of this research is that chronic nasopharyngitis (which is largely unknown and unrecognized in medicine) may be a factor in other diseases, including diseases unrelated to vaccination.

There may be patients on this forum who have severe chronic nasopharyngitis (easily tested for with a Q-Tip), and whose fatigue syndrome might be cured or ameliorated by the zinc chloride and cotton swab ablation treatment.


I think it is interesting that the study authors found an abundance of lymphocytes in the nasopharynx submucosal area, especially B-lymphocytes (B-cells), but also T-lymphocytes (T-cells), which they found were highly activated, and colocated with epithelial cells. Knowing very little about autoimmunity, I can't myself interpret the significance of this finding, but I imagine it may well have some import in autoimmune conditions.


The actual symptoms found in the 41 patients with this post-HPV vaccination ME/CFS-like syndrome were:

headache 97.6%
general fatigue 95.1%
sleep disturbance 87.8%
stiffness of neck and upper back 85.3%
photophobia 80.5%
menstrual disorder 78.0%
dizziness 75.6%
muscle weakness 75.6%
nausea 73.1%
cognitive impairment 68.3%
tinnitus 68.3%
abdominal pain or diarrhea 65.9%
generalized pain 61.0%
joint pain 58.5%
pyrexia 48.8%
restless legs 31.4%
cough 29.2%
involuntary movement 26.8%

The above would appear to qualify for the CDC definition of CFS.

 

[me/cfs 27931]

If this supposedly cures 25 %, I really doubt the patients had me/cfs.

I tend to agree. "Extreme fatigue", not headache pain and pressure, has already been shown to be the most common symptom/indicator of a sinus infection.

Fatigue strong indicator of sinus infection
http://www.mc.vanderbilt.edu/reporter/index.html?ID=1220

Prospective analysis of sinus symptoms and correlation with paranasal computed tomography scan
https://www.ncbi.nlm.nih.gov/pubmed/?term=Duncavage+sinus+fatigue

 

[Apple]

If this supposedly cures 25 %, I really doubt the patients had me/cfs.

Whenever there is a positive study or treatment or recoveries, there are comments like this. How could we possibly say they probably didn't have ME/CFS when we don't know what ME/CFS is?! We are all diagnosed based on a collection of similar symptoms. That's it. If someone has similar symptoms to me and gets better by doing x or y treatment- then i'm interested in it, not dismissive of it.

 

[rosie26]

This is something I would seriously think of trying despite the risk of losing sense of smell. Not keen to do it myself though.

I was looking at the composition of seawater here https://web.stanford.edu/group/Urchin/mineral.html
For the reason that I found that it has been the best thing so far for my sinuses and for the particular infected 'thing' that I get in the nasopharynx. It helps settle things for awhile but eventually comes back again.

I see the zinc and chloride composition of seawater is: zinc - 0.00000021 and chloride 0.536158. I don't know what strength they used of each for the Zinc Chloride in this study. Do you know @Hip ?

 

[Richard7]

0.5% ZnCl2

 

[rosie26]

0.5% ZnCl2

Excuse me for this. Does that mean 0.5% of each in solution? Or half and half of each only.

I'm wanting to know how much more concentrated this Zinc Chloride is in this study to that in seawater.

 

[Richard7]

The video shows a woman who is said to be a representative subject. She was bed/wheelchair bound for 6 mnths prior to treatment and was unable to lift her leg under her own power.

I am concerned that it does not say that they were diagnosed as having CFS under some set of criteria or other, but it seems to be looking at severly ill people and that seems promising. Its also interesting that the 9 out of the 16 who showed strong improvement still had symptoms but they were not severe enough to hinder daily life.

 

[Richard7]

@rosie26 no. I assume that it is 0.5% by weight. ZnCl2 is almost equal parts zinc and chlorine by weight 65.38 : 70.9. So it would be about .24% zinc and .26% chlorine. So it would be much more concentrated than seawater.

But Rosie the issue as I understand it is the ablation. The doctor used swabs with this solution to remove damaged infected cells. They are essentially cleaning a wound. I don't think a netti pot or nasal spray would do the job.

I think you would need a doctor.

 

[rosie26]

@rosie26 no. I assume that it is 0.5% by weight. ZnCl2 is almost equal parts zinc and chlorine by weight 65.38 : 70.9. So it would be about .24% zinc and .26% chlorine. So it would be much more concentrated than seawater.

But Rosie the issue as I understand it is the ablation. The doctor used swabs with this solution to remove damaged infected cells. They are essentially cleaning a wound. I don't think a netti pot or nasal spray would do the job.

I think you would need a doctor.

Thanks very much for explaining this Richard.

I think this treatment is something I need done. I might eventually see if an ENT specialist would do it. I definitely have an area where there seems to be damaged cells in the nasopharynx which keeps getting infected.

This all started for me about 5 years before my ME began. I often have wondered whether this caused my ME but I think personally that it really is just another sign of an immune system that was going down.

 

[Hutan]

I definitely have an area where there seems to be damaged cells in the nasopharynx which keeps getting infected.

That was an interesting comment @rosie26. I have an area inside one nostril that keeps scabbing - has done for years. I hadn't thought until now that that might indicate that there are infected areas further up the nasopharynx.

A couple of years ago I had a CT scan due to rapid and significant hearing loss that found
'Mild polypoid mucosal thickening within the medial portions of both maxillary sinuses is most in keeping with sinus disease'. The ENT consultant didn't comment on that finding.

I've bought some of the BLIS K12 probiotic lozenges just now and will trial them.

The lozenges have arrived already. Will let you know how we go with those.

 

[rosie26]

That was an interesting comment @rosie26. I have an area inside one nostril that keeps scabbing - has done for years. I hadn't thought until now that that might indicate that there are infected areas further up the nasopharynx.

Same here. If you have it in the nasopharynx part, it will feel sore when it is flaring up and you will get an infected piece coming away some part of it. I have had good years where it settled down but at the moment it has really flared up again

The lozenges have arrived already. Will let you know how we go with those.

I was put off these lozenges when I saw that they induce interferon. I felt like I experienced interferon in my severe years and I don't want to go there again, even slightly. I am very sensitive to things so I could over-react to it. I would be interested to hear how you find them and whether you felt more fatigued, heavy, exhausted etc while taking them.

 

[barbc56]

But regardless, this treatment should be of major interest to anyone with post-vaccination ME/CFS, or a post-vaccination ME/CFS-like syndrome, or indeed any post-vaccination autoimmune condition, or even any post-vaccination disease in general, because severe chronic nasopharyngitis may be the cause of some of these post-vaccination conditions, and a treatment of zinc chloride and cotton swab ablation of the damaged nasopharyngeal epithelial cells may provide a cure, or some amelioration of symptoms

The incidence of reactions to vaccinations is very low and the numbers frequently conflated. Often the only evidence is anecdotal.

Sounds like the old antivaxxer trope that vaccines cause autoimmune diseases. They don't and science studies show this.

[url]http://www.chop.edu/centers-programs/vaccine-education-center/video/do-vaccines-cause-autoimmune-or-chronic-[/URL]

 

[barbc56]

Whenever there is a positive study or treatment or recoveries, there are comments like this. How could we possibly say they probably didn't have ME/CFS when we don't know what ME/CFS is?! We are all diagnosed based on a collection of similar symptoms. That's it. If someone has similar symptoms to me and gets better by doing x or y treatment- then i'm interested in it, not dismissive of it.

I'm not advocating or dismissing anything and try to avoid a preconceived opinion when looking at an Issue like this which need to be carefully analyzed. Otherwise, it's impossible to say what is causing what and that can easily lead to erroneous conclusions.

If you want to try this treatment, that's up to you. But we can't pretend it's scientifically valid, at least at this point in time. The study is loosey goosey and is built on faulty premises. For me that raises a lot of red flags.

IMHO!!

 

[Hip]

Sounds like the old antivaxxer trope that vaccines cause autoimmune diseases. They don't and science studies show this.

I think you are mistaking or misrepresenting opinion for fact when you say vaccines don't cause autoimmune diseases. Nobody knows whether vaccines do or do not cause autoimmune diseases, in the general case.

However, in the specific case of the Pandemrix H1N1 vaccine, we know with a good degree of confidence that this vaccine can cause the autoimmune condition of narcolepsy: see this article. GSK took Pandemrix off the market as a result of the large number of cases of narcolepsy that appeared after vaccination with Pandemrix, and GSK are paying compensation claims to victims.

As for the association between the HPV vaccine and narcolepsy or ME/CFS-like illnesses, the jury is still out regarding a causal connection. Ditto for the link between vaccines such as hepatitis B and ME/CFS.

But it is certainly interesting that every single one of the 41 patients in the study with post-HPV vaccine CFS had severe chronic nasopharyngitis, compared to only 5% of the healthy controls having severe chronic nasopharyngitis.

The study is loosey goosey and is built on faulty premises.

What false premise is the study build on?

 

[Richard7]

Hi all,

I emailed Dr Osamu Hotta to clear up a few details and he allowed me to post his answers. (His answers are complete enough to make the exact wording of my questions superfluous.)

My answers to your questions are as follows,

1. We performed epipharyngeal abrasive treatment twice a day for patients in hospital. It takes at least three weeks to achieve normal condition (clear swabs). For outpatients we usually perform epipharyngeal abrasive treatment once or twice a week. In this occasion, it takes several months to achieve normal condition.

2. We encourage patients to continue treatment until the swabs come back clean as well as symptoms disappear.

3. One out of four patients who had achieved remission relapsed a few months after discharge, but a remission was obtained again due to additional epipharyngeal treatment.