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

[me/cfs 27931]

Sometime in the 1990's my regular GP recommended Zicam to me as a way to shorten my colds, and he based this on clinical trials. It has to be used right at the start of the cold. I think I was able to shorten a few colds because of it, and I recommended it to my friends/family.

Zicam is listed as a homeopathic remedy, composed of the active ingredients zinc acetate (2X = 1/100 dilution) and zinc gluconate (1X = 1/10 dilution) and the homeopathic ingredients galphimia glauca, histamine dihydrochloride (homeopathic name, histaminum hydrochloricum), luffa operculata, and sulfur.

I find significant relief to my chronic sinus congestion by taking Zicam dissolvable tablets twice a day as needed. I also experience relief from Valtrex (2g), LDN (9mg), and a nasal wash at bedtime.

All together, these treatments have reduced my sinus congestion and inflammation dramatically, perhaps 80%. I used to lie awake at night with what seemed like endless streams of mucus down my throat. It was unbearable, and neither my primary care nor the ENT I was referred to appreciated how much it affected my quality of life.

But now, I'm breathing better at night than I have in 20 years. It's such a relief to be able to breath through my nose again.

But despite the improvement in sinus congestion and quality of life, I still have SEID and am 90% homebound. My PEM remains unchanged.

 

[Richard7]

@Jon_Tradicionali

I have been doing it, but

1) you probably need something much longer than a Q tip. A Q tip is about 7.5 cm long. I am using 15 cm single ended cotton tipped applicators (basically long one ended Q tips) and I have to go in about 10cm to reach the far end of my nasopharynx. Yours may be a different length, but I do not think it would be possible to reach it without using a longer swab.

2) The blood may be a poor indicator. When the ENT specialist looked into my nostrils he note that one of them should be OK. That any blood I got from swabbing it would be from the nasopharynx, and I do get a lot of blood. It is not running with blood, but the swab comes back bloody, and if I blow my nose shortly afterwards there is blood in my phlegm.

The other nostril is too narrow at one point, so I am still to swab it, but need to pay attention to ensure that the swab is going as deeply into that nostril as the other. The ENT was concerned that I might stop too soon for this nostril and swab the wrong area. I am also to ignore the blood from the narrower nostril, because it will bleed from the area of constriction when the infection is gone.

I have been doing it now for 10 days (ish, I ran out of mouth swabs and am waiting to get some more) and I am not a great experiment as I am also doing other things (Osamu Hotta's research subjects stopped all other treatments) but I will report back if I get better or worse.

I was kind of surprised that the ENT just saw the ZnCl2 solution as being normal, good, sensible unremarkable treatment. It was clearly in some sense standard from his point of view. He was at first a bit confused by the use of the term epipharyngitis (nonstandard in the english speaking world). He did not think the research was there to show it as a solution to CFS: he wants larger studies. But as a treatment regime for nasopharyngitis he seemed to think it sensible and unremarkable.

I was worried, as I was doing it that it might be crazy and ill advised. So his response was welcome.

I find using the large mouth swabs in the throat difficult, it does trigger the gag reflex, and I am concerned that I may not be swabbing it as thoroughly Dr Osamu Hotta would wish, so I am also gargling from time to time during the day (whenever I notice a build up in the back of my throat) in the hope that it will help overcome any weaknesses in my technique.

 

[Richard7]

@Webdog I have had those extreme drowning in phlegm issues too, but not recently.

Osamu Hotta noted that only 19 patients had mild pharyngeal symptoms all 41 had severe epipharyngitis. The paper does not include phlegm production or sinusitus in its list of symptoms.

At the moment I know that

a) if I do nothing I have often, but not always have a slight irritation in my nose, a sense that I need to blow it, or touch/ rub it, but it is not stuffed and I do not produce any phlegm.

and b) that when I went to the ENT the inflamation in the nasopharynx was clear to visual observation with one of those long flexible probes that they send down your nose (whatever they happen to be called).

So I seem to like 22 of the 41 japanese patients in this respect.

Once I started treating my nose this changed a bit, but I am also using nasal flushes with saline that are increase phlegm production as a matter of course, and I am also using dental probiotics which I know clear my head and vastly inbcrease mucous production, and L sakei. I am not conducting an experiment I am just trying to get well.

 

[Hollyb]

@Hip wrote:



That vaccines cause autoimmune diseases. ASIA does not exist and statistics bear this out. An interesting hypothesis at one time that just didn't pan out.

Narcolepsy, as far as I know is not an autoimmune disorder.

There are some statisticians who claim that the incidence of Narcolepsy may not be that much greater than what you would expect in the general population with or without vaccinations. But as you say, the jury is still out about this issue and tbh, I have not followed this issue closely enough to know if the thinking on this has changed or not.

The study design is lacking in quality. No control group, self report, etc. as well as authors who are biased that a nonexistent condition exists.

I'm not saying reactions don't occur with vaccines, pardon the double negative, but they are few and far between. I feel for those who do experience a reaction and wouldn't wish it on anyone.

If this theory was backed by good scientific evidence, I would go with that.

Narcolepsy is a confirmed Autoimmune Disorder - Dr Emmanuel Mignot -

 

[barbc56]

Narcolepsy is a confirmed Autoimmune Disorder - Dr Emmanuel Mignot -

Thanks. I just looked him up.His work is fascinating. Quite intriguing.

 

[Manders]

Very interesting thread, thanks Hip for posting it.

I wonder if the blood serum of the recovered patients compared with the patients who did not improve could help with Ron Davis's research into the dauer trigger, even if the trigger in PWME is not vaccine or adjuvant associated.

Having the serum of recovered patients prior and post full recovery may be informational as well, if another study is done.

Also, did Dr. Hotta have any radiologic evidence of nasopharyngeal inflammation or Adenoiditis?

Reading the NIH Cancer page regarding HPV vaccines: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4484615/#!po=14.1509

The vaccine stimulates the production of antibodies to HPV, or specific strains. Is it possible the nasopharynx of these patients are already populated by HPV?

The prevalence of HPV in Japanese women 20-25 is described in this paper from 2011: https://www.ncbi.nlm.nih.gov/m/pubmed/21251162/

This study describes HPV positive infant rates (not in Japan): http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0066368

If the virus is already present in the nasopharynx, and the vaccine creates an antibody, seems reasonable you might see a post-vaccine reaction in the nasopharynx.

Personally, I was unable to get a good contact to the nasopharynx through either nostril, and do not have access to nasopharyngeal swabs. I also do not have zinc chloride. I did use a sterile cotton tipped applicator to rub as high up as possible at the back of the throat, but did not get blood.

I would suspect the mucous lining of the nasopharynx means zinc chloride (or similiar mucus degrading agent) would be necessary to actually create contact between the cotton swab and the epithelium.

 

[Richard7]

@Manders

I was wondering why it had to be zinc chloride. It was hard to find online, most places were selling it for aquariums and industrial purposes, I wanted (and got) pharmaceutical grade.

If it is a mucus degrader it would of course be useful for the reason you give, but looking around online I can see that it is used in wound healing, and that some other forms of zinc (Zinc oxide but not zinc sulphate) help regrow skin when applied to wounds.

In Osamu Hotta's paper he clearly states that nasopharyngitus was assessed by swabbing with ZnCl2 on a cotton tipped applicator and seeing if it came back bloody.

He mentions assessment by examining the the vasculature through an endoscope using band limited light. Nothing about radiology.

re swabbing, from what I read about nasopharyngeal swabs you need to reach back to about half the distance between your nostril and ear. In my case about 9 cm. Of course one reaches back till one can go no further, but the distance told me to go for the 15cm swabs and not the 7.5cm ones.

Also I did not get back so far the first couple of times. I find that when there are clods of phlegm the swab gets impeded/stuck earlier. I was rather timid at first and stopped at the first sign of resistance. Now I twist the swab as I insert it, and if I feel it impeded by a clod I bring the swab out and wipe the clod off on the inside of the sterile container that the swab came in. I buy them in 2 packs, and obviously use two at a time, so the surface is sterile.

 

[Manders]

@Richard7

Thank you, it seems I'll be tracking down some pharmaceutical grade zinc chloride.

You're about 3 weeks in at this point? Any updates?

I appreciate the detailed info about your methods. I've been swabbing with a manuka honey mixture, but I'm not seeing/feeling any clods. Maybe the zinc will break things up more.

 

[Hip]

I did use a sterile cotton tipped applicator to rub as high up as possible at the back of the throat, but did not get blood.

Dr Osamu Hotta said that if you prod the mucous membranes of your nasopharynx approximately 20 times with a cotton swab, seeing blood on the swab (and often feeling pain on prodding) is diagnostic for nasopharyngitis. If you don't see any blood, then you don't have nasopharyngitis.

I would suspect the mucous lining of the nasopharynx means zinc chloride (or similiar mucus degrading agent) would be necessary to actually create contact between the cotton swab and the epithelium.

In his email to me, Dr Hotta did not say anything specifically about needing zinc chloride on the swab in order to perform this test. Although in the study, it does say that in cases of nasopharyngitis, the nasopharynx is "prone to bleeding on abrasion with a 0.5 % ZnCl2-soaked cotton swab". So I am not sure if zinc chloride is necessary or not just in order to test for nasopharyngitis.

But my guess is that if the nasopharynx is going to bleed under the pressure of a swab prodding, it would bleed even on a dry swab.

If the virus is already present in the nasopharynx, and the vaccine creates an antibody, seems reasonable you might see a post-vaccine reaction in the nasopharynx.

Interesting idea. I don't know enough about the antibody response to comment on its feasibility though.

 

[Richard7]

@Manders I am not sure how I feel.

I am a doing a mixture of things, and I am not sure if they are wise. A combination of nasal rinses and the nasal swabbing seems to be making me less lighheaded. There are days when level of symptoms that I used to get at 90 -110 bpm, now does not hit till the high 120s, indeed, I am not sure if it does even then. There have been a few occasions where I have checked to find I was at 128 or therabouts when I felt perfectly ok.

Having said that this is variable, and I have become more aware of how my lighheadedness is related to vestibular systems (I guess).

But I am also doing oral and nasal probiotics which seem to reduce brain fog, and am not sure if I should be doing both at probiotics and this treatment at once

and am not sure that I can really seperate out symptoms and treatments the way I have above.

Also I am not living a calm level life in a hospital. Managing cleaning, cooking, budgets and so on is hard. And I have issues with noisy neighbours interupting my sleep and rest. So I am a poor test subject. Well no test subject obviously.

Anyway the swabs are still coming back bloody. I was hoping that I would be in the 25 day camp (the fastest responders, but that seems unlikely, and it would make sense that it would take longer given how long I have had this condition and that I am more than twice as old as the average person in his study.

 

[Hip]

Anyway the swabs are still coming back bloody. I was hoping that I would be in the 25 day camp (the fastest responders, but that seems unlikely, and it would make sense that it would take longer given how long I have had this condition and that I am more than twice as old as the average person in his study.

I did not realize you got a positive test result for nasopharyngitis using the swab prodding test; I notice now that you mentioned this earlier, but I missed it (unfortunately I have ADHD problems in reading text, caused by my viral meningitis). That's very interesting that you get positive results.

Can I ask, how much blood do you get on your swab after prodding 20 times, according to the chart given in this post? Are you the 2+ category (swab fully covered in blood), or the 1+ category (half or a quarter of the swab covered in blood)?

Do you get just as much blood on the swab when you prod the lower regions of the nasopharynx (via the back of your mouth) as you do when prod the upper regions of the nasopharynx (going via the nose), as shown in methods ② and ① respectively in the post?



Did you measure out your 0.5% zinc chloride solution quite accurately? If you were making up say 100 ml of ZnCl2 solution, you'd want 100 grams of water (= 100 ml) plus 0.5 grams of ZnCl2. Years ago I bought this weighing scale on eBay for £15, which weighs down to just 1 mg, so you get very accurate weighing results.



Richard7, did your ME/CFS appear after vaccination, or was it after the more common viral infection trigger?

And I have issues with noisy neighbours interupting my sleep and rest.

I find Moldex Rockets earplugs are a Godsend for good sleep.

 

[Manders]

@Richard7, I am sorry to hear you have less than peaceful surroundings. The neighbors behind us have a dog, and sometimes the barking makes me itch inside of my skin. I lived in an apartment in my early 20's, and it about drove me crazy.

Thank you for sharing your progress. I had already ordered the oral probiotics, so am curious to see what results I might gain.

Personally, I've been using a nasyam type procedure for the 6 days, in conjunction with the swabbing. Burns like crazy the first few minutes, and then calms down. After the 20 minutes, my head feels great. Less brain fog and better concentration. I'm breathing much better through my nose since I started both treatments.

I do notice the discharge at times is sticky and white.

My doc just had me on a round of metronidazole to clear out my gut, but I ended up having worsening fatigue and progressively more painful occipital headache. I only lasted a week, but I'm now at least able to tolerate carbs without waking up with a neck ache and headache the next day. The day I stopped the ABX, I started the nasal cleansing, so I believe my gains in clarity and reduction of brain fog are from the nasal treatments, but there is of course an overlap.

Surprisingly, the burning pain I get midway through the nasyam treatment is located in the occiput, same area as my ABX headache.

Do you suffer from motion sickness? I get that, and also nausea when I have significant (7+) pain. I was wondering if it wasn't related to this area.

 

[Richard7]

@Hip yeah I would say moderate to severe, say 1.5 maybe. My swabs look a little different (standard q tip shaped) and I end up with blood on the spindle and at the near and far ends of the tip. I am not using a nasal speculum, and suspect but do not know, that this is what causes some of the bleeding.

The ENT said that I would bleed on one side reguardless because the nostril is too narrow and the swab would cause bleeding on the way in. I suppose that the speculum used in the video stopps this happening when an ENT or other medical professional is doing the test. They look pretty cheap on ebay so may be worth looking into, I do not know.

Anyway the degree of bleeding varies. Sometimes the swabs come back with a little blood smeared all over the tip and stem and just a little extra on the very tip, sometimes there is so much blood that the whole tip is covered.

This moring the wider nostril was just 1.5 but the narrow one was a bloody nose really. The ENT seemed unconcerned by this and just said to use the wider one to indicate when the inflamation cleared up. My thought has been that I should go till a week later, just to be sure that both are ok nasopharynxs are ok.

 

[Manders]

@Hip thank you for the response. I've been lurking for a while on the forums, and sincerely appreciate the matter of fact way you are able to explain complex ideas. This has helped me many times with my personal research.

I'm especially intrigued by the commonality between this research paper, and the recovery of 62milestogojoe after his Ayurvedic treatment.

Not being a doctor or scientist, I don't have an in depth comprehension of the science involved, but the nasopharynx seems like a very interesting location in the body, no matter that it is simply tonsil tissue.

While medicine has gained immeasurable knowledge, the long standing treatments in several cultures appear to point to both the nose and gut as being important areas of focus in immunity.

Cloves, orange oil, cinnamon, and thyme were used frequently in a wide variety of uses, and they have antiviral qualities. If I understand it correctly, scent drives some physiological responses in the hypothalamus. The hypothalamus of course being a very interesting organ in the context of CFS/ME.

TCM points to digestive fire being an important factor in illness.

And Ayurveda states both the nose and the gut should be treated during illness.

Of course, both sinuses and gut contain areas of lymphoid tissue (GALT & NALT).

You mentioned the olfactory bulb previously (in this thread I think?), have you read this article?

https://www.ncbi.nlm.nih.gov/m/pubmed/27058872/

 

[Richard7]

@ manders I certainly get motion sickness, I always have.

I also get a lot of occipital pain, and have for so long, certainly the last 13 -14 years. I know that my psysio asssociates this with eye strain.

I have noticed that I seem to get a burning sensation behind the eyes whenever I have sugars (well almost, with chocolate and honey and most dried fruit, but not prunes for some reason). Which is something I also noted in one of the comments on lactobacto. I wonder if it is something about the link between the oral and sinus microbiomes. It happens quickly (< 30 minutes) long before anything should be getting to my intestines or blood.

I get a lot of what I think of as immune activation (tingling in back of neck and spine, changes in body temperature and various liquid sensations in ears and sinuses I guess: flu symptoms) in general, and these seem to have happened a bit more with the nasal rinsing/swabbing etc.

But I am very aware of how clogging slows me down and rinsing etc clears my head, particularly about 20 mins after having the nasal probiotics.

I too have noticed major changes to my breathing: I was unaware of how much effort it had been taking.

I forgot to say that the manuka honey idea reminded me of a morning sometime last year when I woke up with the idea (dream) of using boiled and cooled water and manuka and I don't know maybe a netti pot to try and deal with my pink eye.

I have had conjunctivitus/pink eye for years. And talked to doctors who have done nothing etc. Hip may be interested to know that it seemed to match the viral conjuctivitus symptoms most closely.

I was desperate enough to do what seemed crazy to me at the time, but lacked the money that fourtnight and forgot about it.

Are you still using manuka in your nasal rinses?

 

[Hip]

I would say moderate to severe, say 1.5 maybe

Do you also get bleeding when you prod the lower regions of the nasopharynx via the back of your mouth?

 

[Manders]

@Richard7

I was having acute neurological episodes (chorea, muscle spasms mid back with 7+ pain radiating up into skull on one side, sounding drunk, brain fog), which I think were caused by d-lactic acidosis. All conjecture, as they never tested my levels in the emergency room (I figured it out after my last visit).

Episodes were brought on by excessive carbs initially on a gluten free diet, and then after being on the Keto diet were brought on by fairly low levels of carbs (~100g or more a day). Onions seemed to be a factor as well.

They would always start 18-24 hours after consuming carbs/onions, and resolved with saline IV. One episode resolved with steroids. Pain management alone was not sufficient.

The week of ABX has cleared the carb problem, no headaches this week. I haven't attempted onions yet.

These episodes are separate from the PEM, POIS, Dysautonomia, sinus issues, and OI, which are always present, with varying levels of severity.

Your responses to sugars are interesting. Have you looked into fructose? Honey and dried fruit are higher up on the scale, not sure about chocolate.

Have you noticed a positive response to antibiotics?

Having an immediate reaction though, the fructose malabsorption seems to be in the small intestine, and fructose is broken down by the liver (from what I read). Seems like both the liver and small intestine would be more than 30 minutes out though.

When I get some brain power back, I'm going to read up on the oral and sinus microbiome, that sounds interesting too.

Personally, gluten causes an occipital response for me, and knocks my atlas out, along with giving me a headache. I always wondered if I was inflaming the adenoids. I have no idea if that's possible or not. My MRIs and X-rays show swelling in my adenoid, and light reading indicates adenoid hypertrophy is rare in adults. My latest MRI (2 years ago) shows hypertrophy, even though I've been gluten free for 5 years or more.

Regarding the manuka honey, that's exactly the process I used, after reading the honey should not be heated over 104 degrees F. Boiled/cooled water, then mixed in honey.

I initially tried to thoroughly mix the honey into the sesame oil (fail), then decided to try just the honey/water mixture. Seems like it was about 1 tablespoon honey to 4 tablespoons water...but I didn't write it down.

I was kind of wondering if I'm absorbing sugars through the nose, and maybe that's helping my thinking. Of course, a few days of reading immunology articles has left me pretty brain dead.

I purchased the manuka honey after being unable to locate a source of zinc chloride I was familiar with. I'm planning on checking with a local compounding pharmacy tomorrow to see if they have any. I found two online sites selling USP zinc chloride, but it was over $130 USD. I assumed it was a sizeable portion.

I tried again today to rub the nasopharynx via the throat, rubbing fairly hard for 20 times, no blood. Tried to be braver with the nose swabs, very tender a few inches in. I did it after the shower, hoping it would open up my nose, but no luck.

I don't recall getting immunizations around the time my strep and CFS started (11-13), so it's probable mine is not a post-vaccine response.

Additionally, I have physical changes similar to those of children with adenoiditis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4484615/#!po=14.1509

I have a high palate, narrow jaw, overbite fixed by braces a removal of two upper teeth, sagital reduction of lower jaw, and kyphotic posture. This makes me think mine is a chronic issue, not an acute post-vaccine response.

I still think treating the nasopharynx could be helpful though.

 

[Richard7]

Sorry @Hip.

yes there is sometimes some blood at the back of the throat, but I am less sure that I am doing this right. I use jumbo mouth swabs and go back to that point where one engages the gag reflex and swab as best I can. I cough and tear and it is a bit hard to do. I also swab everywhere else in the hope that the zinc will do something useful.

I have that ticklish sensation in top of mouth particularly towards the front and towards the teeth. So, well I do not know.

But I also gargle with water or salt water or, ocasionally, appropriate teas (thyme, ironwort) just in case I am missing something.

I have also been thinking more about the blood on the swabs, as far as I can see from the diagrams in the video, Osamu Hotta is using the tip of the swab on the sides and back of the nasopharynx. I am using the tip and sides, but mostly the sides. The abrasion is perhaps focused on the tip as I move in and the back as I move out again. I am not sure. Tonight it was clear that one side of the swab was redder than the other.

 

[Richard7]

@Manders I do not know where you are based, I got it from this australian supplier http://www.webstore.kodaphytorium.com.au/index.php

But if you are in the US there is bound to be somewhere better.

 

[Richard7]

@Manders re d lactic acidosis, and gut issues in general you may want to have a look at ken lassesen's blog
https://cfsremission.com/

He has a pattern that I have not followed, but can now see makes sense. He sees probiotics as a class of antibiotic/anitmicrobial. (Herbs too.)

So he pulses them, so that the existing microflora gets a big dose of whatever comes with the new probiotic and then does not get much of a chance to adapt and evolve as it is only there for two weeks.

This is kind exactly not what I have been doing: which is taking a lot of everything that looks useful at once.