Sinus issues: I can't smell anything

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welshwitch

Guest
I've had basically no sense of smell for the past year and a half. I got a cold, beat it, and when it was gone I couldn't smell anything. I have been to the sinus doc countless times....we've tried sinus rinse, nasal spray, and all the usual things. The doc says that it's not polyps, but rather severe sinusitis. He thinks the bacteria in my system is causing it but he doesn't want to go the antibiotics route because he "doesn't want me to have to be on antibiotics all the time." I agree with this, but then how can I get rid of this sinus inflammation? We're going to try prednisone which I am reluctant to try. I feel like I'm caught in a catch 22....any ideas on how to get your sense of smell back? I can breathe fine but I feel like this is something I want to fight for.

Thanks!
 
I undrstand not wanting to take prednisone. If it is inflammation how about singulair and an inhaled localized steroid like nasacort or do you already do that? Also what is so wrong about a round of antibiotics once in a while if it makes you feel better?
 
M

momofsinus

Guest
Hi - My son has had serious sinus issues. We only know that he is a CF carrier. He has had 3 endoscopic surgeries with multiple infections, polyps, etc. But he could not breathe well (nasal) during the infection phases and could barely function. So do you have inflammation (swelling,redness) or an infection? You may want to get a 2nd opinion from an ENT. One thing that helped my son was getting allergy shots and also he visited his ENT about once a month and got"cleaned out" and finally everything settled down. He does say that his sense of smell has never been the same but hasn't needed antibiotics for a few years now. Good luck!
 
J

jamest

Guest
I had the same thing happen - had a really bad cold, when it cleared, my sense of smell was gone. It came back after a few years.

And after I had sinus surgery it was especially sharp for a few days - but now it is back to muddled or phantom smells that other folks smell differently or don't smell at all. Right after I rinse my sinuses out I can smell better, and not rinsing for a few days means smells become muted.

In short, my advice is to get used to it, not smelling means you can't smell garbage, BO, the zoo, or other unpleasant odors! Hopefully it will return in time.
 

Epona

New member
Also be aware that your diet can be causing chronic sinus congestion and inflammation. This is very, very common, even in the non-CF population. Dairy is the number one culprit (both lactose-intolerance and casein-intolerance), along with gluten. Cut those two out and see if that helps with the inflammation. According to my research, being on prednisone long term is a very, VERY bad idea. It will suppress your entire immune system, even worse than being on antibiotics. It will mess with your gut bacteria and your entire microbiome, including the microbiome in your lungs. It will also mess with your hormonal system and endocrine system. Steroids are bad news. I don't think loss of smell is worth the risk of being on long-term prednisone (I haven't smelled normally in 20 years, you get used to it). But I will say also that lack of smell can also be the result of a zinc deficiency. You can try taking chelated zinc tablets every day to see if that helps, along with the dietary modifications mentioned above. And of course, reduce your intake of sugars and carbs, as those feed infection and inflammation.

Be well.

-Mikayla
 
W

welshwitch

Guest
Thanks for the advice, everyone! To clarify, the prednisone is only for a week....but I agree that it is a short term solution.

The diet had occurred to me. I must admit that I scoff at dairy free and gluten free, but for something like this I think it's worth a try. I mean, I just have sinuses that refuse to not be inflamed.

A bit more info: I was on antibiotics for a non-CF thing a couple months back. I had my wisdom teeth out and they got infected. When I was on the antibiotics my sense of smell came back. So I know that antibiotics help. But when I went off of them, my sinuses went back to their default -- inflamed.

I'd like to get to the root of the problem. Which is why I like the diet idea.

Thanks everyone.
 

Epona

New member
I respect that your ENT doesn't want to just throw antibiotics at the problem - shows he's a bit more enlightened than most other allopathic docs. However, the fact that your sinus issues cleared up with a course of abx shows that he may need to rethink his position. I'm not usually an advocate for using abx, but sometimes it's the right tool for the job. Maybe a short course of oral abx matched with other efforts (doing a dairy and gluten-free diet for a month at least) plus twice a day sinus rinses will nip it in the bud. Usually doing multiple things all at once is what really helps me. About the sinus rinses, is he aware of the new treatment using a surfactant like Johnson's baby shampoo mixed with a topical abx cream (mupirocin) and rinsing with that in your sinus rinse kit? My ENT recommended that to me (I also have an intractable sinus infection that comes and goes) as his most useful tool. The point of the Johnson's baby shampoo is that it breaks up bacterial biofilms, something that an abx cannot do alone, and a chronic sinus infection becomes intractable precisely because of the biofilms. Xylitol is also known for breaking up biofilms. There is a xylitol nose spray that you can buy in a health food store called Xlear, but it won't be as effective as rinsing with baby shampoo. I can give you the baby shampoo recipe my ENT gave me, if you're interested.

In conclusion, to really destroy this infection once and for all, it might be necessary to take an everything-all-at-once approach: oral abx + diet + sinus rinsing + biofilm disruption with the baby shampoo mix and/or xylitol.

Hope some of this helps.

-Mikayla
 
W

welshwitch

Guest
That is some great advice, Epona. If my current sinus doc won't give me the abx, maybe it's time for a second opinion. I'd be interested in the sinus rinse recipe, thank you!!!!
 

Epona

New member
Hey! I sent the recipe to you via personal message. Let me know if you didn't get it. Also, I kinda want to restate myself a little bit. If you're going to try this recipe and be very diligent about it (2xday) then there should be no need for the additional oral antibiotics. It might be overkill to do both, plus whenever we can choose a targeted or topical antibiotic over a systemic (oral) antibiotic, we should do that to reduce its impacts on our gut flora and total microbiome. In addition, your doc may be more open to prescribing the topical abx (bactroban/mupirocin) than the oral abx. Anyway, hope the recipe helps!
 
My son is doing mupirocin sinus irrigations (100 mg/200 ml saline) twice a day for staph aureus and it seems to be working. About the only thing mupirocin is active against is staph, so you'd need to know that is the bacteria causing the problems. We managed to get mupirocin powder from a compounding pharmacy, it's not cheap, the other option I know about is bactroban ointment dissolved in saline, a 30 mg tube would yield 6 irrigations.

I thought about adding the JJ baby shampoo to the irrigation solution but decided not to because there is a report from a pediatric hospital showing that there is a high incidence of bacterial contamination in various baby shampoos. A number of young children had got bacterial eczema from shampoo, about 10 % of the JJ shampoo bottles tested had contained PA.

My son uses the Water Pik for the sinus irrigations, it seems a lot more effective than Neilmed bottle or similar things.

My son is also on oral antibiotics for the staph because it is unlikely just the sinuses would be infected. He is taking fucidin and dicloxacillin high doses for several months. We are lucky to have doctors who know that antibiotics have to be used long term in high doses in CF.

BTW I've read that the GI problems of some CF patiens have improved when they were on IV antibiotics, presumably because they have been harbouring harmful bacteria in their GI tract which are eliminated by the IV antibiotics.
 
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welshwitch

Guest
Thanks all. It sounds like the mupirocin is prescription only, yes?
 

stevehof

New member
I don't want to sound discouraging and we all are different in how we present and age. I haven't had a sense of smell for at least 45 of my 66 years. Too many sinus infections can ruin those receptors for good. That's just the way it goes. I have been doing sinus rinse daily for about 35 years and can breath through my nose just fine. I do still have infection in my deep sinuses but not much really helps that. Only had one polypectomy <sp> and one surgery to fix a slightly deviated septum. All that was 35 plus years ago. Besides the sinus rinse 'simply saline' prn can help keep things drained, particularly if you live in a dry climate area.
 

Epona

New member
Hello MotherofCFboy11yrs. Great that mupirocin is working for your son. I used the water pik when I was a kid, and I agree, it is the best. In response to the comment on improved GI symptoms on IV antibiotics, that may be the case in a minority of situations, but they would only benefit while on the antibiotics - their GI symptoms would return once off the antibiotics. It is a very complicated issue, the GI microbiome, something I am doing a lot of research in. The answer to your comment is complex and cannot be addressed thoroughly in a post here. But the main issue is that all IV antibiotics (like all broad-spectrum antibiotics, usually the ones CFers are on) except vancomycin are non-specific killers of all bacteria in the guts, good and bad. Beneficial bacteria are absolutely critical to the proper functioning of digestion, immune regulation, neurotransmitter secretion, hormone regulation, and many other interconnected body systems. Modern medicine is only just beginning to learn about the importance of a healthy gut microbiome to one's health as a whole. When a broad-spectrum antibiotic, IV or oral, wipes out bad bacteria in the gut, it also wipes out the good bacteria, and then after the course of antibiotics are through, the "bad" bacteria, which are opportunists, recover their populations much more quickly than the beneficial bacteria, such as lactobacillus and bifidobacteria. This causes an imbalance in the species, called dysbiosis, favoring the harmful bacteria. Every time we take antibiotics we make permanent and irreversible changes to our fragile gut ecosystem, often for the worse. That is why eating probiotic foods like sauerkraut and taking probiotic supplements during and after antibiotic use are so incredibly critical to our health. I could say much, much more about this, but I've already written a lot on my website if you're interested: www.cfnaturalhealth.weebly.com.

The CF gut microbiome is often very disturbed due to the regular courses of oral/IV antibiotics we have to be on, and this leads to many other issues like worsened food malabsorption, GI issues, GERD/heartburn, autoimmune issues (joint pains in particular), psychological symptoms like depression, and gut infections like SIBO and C. difficile. The solution is to eat foods that favor the growth of beneficial bacteria and inhibit the growth of pathogenic bacteria, plus taking in a lot of probiotic foods and supplements to replace the beneficial bacteria we are killing with the antibiotics.

There is an incredible amount of research in this field right now, and the issue of the gut microbiome's effect on the entirety of human health is such a hot topic right now. It's super exciting to be on top of it, but at the same time so frustrating because all my docs know how to do is prescribe antibiotics - they know next to nothing about the gut microbiome and how it impacts health (it was not and is still not taught in mainstream medical schools), and only recently have my docs embraced supplementing with probiotics (thought they still don't regularly recommend it in their treatment plans, UGH!). They'll catch on... in a few decades or so. :)
 
Hi Epona, I've read articles on the gut microbiome and it is fascinating, I agree. I give my son loads of probiotics, but I think the key to staying healthy with CF is to keep the airways infection free and the only way is to achieve this is to use antibiotics. I'm a great fan of inhaled antibiotics because they do not have systemic effects, and I'm so happy I managed to get mupirocin powder for my son's sinus irrigations. If his next sputum culture is clear of the staph, we can drop the oral antibiotics, which would be just great. Thanks to the Tobi prophylaxis my son has never needed IVs and oral antibiotics pretty seldom. But if he needs them, I do everything I can to make sure he gets adequate amounts for long enough, despite the effects it may have on his gut.
 

Epona

New member
Since you say your son has never been on IV antibiotics this may not interest you, but I discovered recently that the only anti-MRSA antibiotic that has no impact on the gut microbiome when used IV is vancomycin. That is my anti-MRSA drug of choice, and last time I was inpatient I asked them to give me vanco only, no anti-pseudo drugs or any other antibiotics (besides inhaled Tobi). It worked wonders and had no impact on my guts and pretty much no other side effects! I was thrilled I had discovered this, because it will allow me to justify going in for a clean out more often without impacting my gut microbiome. If he ever has to have IVs (hopefully he won't), it may be a good factoid to keep in mind. :) Even my docs didn't know about this.
 
F

fel

Guest
Our family has found that prednisone rinses work much better than oral prednisone for constant sinus infections. We don't use a technique of just squirting the rinse up, but rather lay back with our heads tilted as far back as possible, so gravity drains the rinse into the frontal sinuses. Then we push the liquid out while simultaneously sitting up. We have also used a levaquin rinse the same way.

I have a very reduced sense of smell, but then again had over 20 years of chronic congestion and sinus infections. So far it hasn't come back post-surgery, but I still have hope.
 

stevehof

New member
Thanks for your perspective, Stevehof! Do you have CF?
Yes, diagnosed at 9 weeks and then confirmed again via sweat test in 1980. I was tested for CF genotype last year and didn't have the combo that worked with that new drug. I don't remember the exact gene sequence. Not one of the more common ones I think.
 
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