Have you always had sinus problems with infections all throughout your ME?

[IreneF]

I have chronic sinus headaches, but haven't had an infection for several years, since I started on Claritin.

 

[purrsian]

I answered no, although I do currently have sinus type of symptoms. My first 8 or so years of ME, I had very little sinus or immune type symptoms, none of the sore throats, lymph node swelling, etc that doctors tend to expect. After a terrible flu (first one since getting ME) and then going on a plane, my ears pooped weirdly upon landing and I've had sinus and ear issues since. The types of symptoms have varied over the course of the past two years, but very much correlate in severity to the severity of the rest of my ME symptoms. I now have that flu type feeling in my head/face when I'm more fatigued, which was never a part of my ME before.

The only thing that helped when the pressure was the worst was nurofen plus codeine - my mother-in-law with severe sinus problems (but not ME) also finds this is her only relief. On a side note, even when my symptoms were at their worst and I had very prominent nasal symptoms too, my CT scans revealed my sinuses and nasal passages were perfect and I didn't have sinusitis.

My theory is that it's a very low grade infection/inflammation remaining after my flu, probably due to the plane messing up my ears and sinuses so much. I very rarely get infections, so I think my immune system is very weak and doesn't respond much (or does so incorrectly). I think the tendency for people with ME to get sinus and allergy issues really reflects that we have weird immune systems, which research is tending to support.

But apparently sinus symptoms can also be caused by blood circulation issues in the head, which would be a potential issue for many of us. Perhaps this is why my symptoms correlate to my overall ME symptoms, as they also relate to my POTS (and I assume, low blood volume).

 

[purrsian]

On a side note, do those of you with sinus issues also get rhinitis after/during eating? I get this from eating anything, doesn't have to be hot in temperature or spicy. And it doesn't necessarily occur with specific foods (ie. some mornings I get it from my breakfast which is always the same, sometimes I don't at all). It's something that's developed later in my ME history like my sinus issues, so wondering if others with sinus stuff experience that too.

 

[dannybex]

I have chronic sinus problems, too, in spite of surgeries and twice a day irrigations at home. I get thick mucous, and bacteria cling to it.

I have had both pseudomonas and a fungal infection for some months now. I've tried nebulizing medicine and am now using medicine in my sinugator, but don't appear to be getting better.

My ENT said since the topical treatments haven't worked I should go on Cipro since it and Levaquin are the only 2 meds that eradicate pseudonomos. I'm doing research and trying to figure out if the cure is worse than the disease.

If it's Cipro or other fluoroquinolones, it is worse, IMO. Personally I wouldn't take any of those 'f-drugs', pun intended, as they can cause 'spontaneous tendon rupture', which is the last thing any of us need. Mine feel at times like they're about to rupture on their own anyway...

Besides, your ENT is wrong. The ayurvedic herb haritaki has been shown to disrupt the biofilm and kill pseudomonas for at least the last 8-9 years, a discovery made by a 17 year old med student in Canada. Also cinnamon extract has been studied and shown to be effective against pseudomonas.

Another thing to consider is the possibility that neti pots and frequent nasal irrigation may be flushing away beneficial bacteria.

A study in 2012 found a specific microbiome in the sinuses of healthy peeps that were not there in those with chronic sinus problems. So some have tried snorting various probiotic species with great relief. I haven't tried it yet, but am considering it when I win the lotto.

Here's a website where you can read of the many options and also the results some have experienced:

http://lactobacto.com/2015/01/12/the-one-probiotic-that-cures-sinusitis/

 

[dannybex]

Ah, yes.... The orange-grey brain matter looking blob...

I've had sinus problems for 35+ years.

Sorry you've been suffering for so long, but nice to know I'm not the only one blowing my brains out, so to speak.

I have a feeling that 'blob' is a mass of biofilms protecting some evil green-orange-grey monster. Just a guess though. My nose did run for about a week back in 2010 after I used some 'MucoStop'. I actually had no kleenex tissue in the house and had to go out to buy a few boxes...first time in years. I might try that again...but it's pricey too.

 

[perchance dreamer]

@dannybex, thank you for the info about pseudonomos. I'll look into all this. I've also read that colloidal silver gets rid of pseudonomos.

@CFS_for_19_years, it's good to hear your experience with the allergy shots. I'm hopeful that the prescription sublingual drops will help eventually. I'm sure they contribute to my wretched sinus infections.

 

[Research 1st]

Immune suppression, activation, allergy and blood vessels being affected by the CNS can lead to constant nasal symptoms. As others have posted here, everyone I know with ME always says they have or had a blocked nose of some sort, even without an actual sinus infection/raised glands/temperature, and they didn't have this before the condition came on.

A few tests I experimented with to see why I always have 'flu like' symptoms - which includes a blocked nose:
1) Various vitamins and minerals to see if you're deficient in anything which can run you down and leads to more 'germs' due to a gross nutritional deficiency. I was all deficient in many when tested including very low Vitamin D, Zinc, and B6. None of this helps our immune system being so low in what we need, especially Zinc. Of surprise, my Magnesium was normal, even intracellular Magnesium.

2) IgE to see what your baseline is. (Mine is 1300+) and am very allergic to things - which can make your nose stuffy. Also note that high IgE can make you dizzy, so you can be eating foods that are causing chronic vertigo, or worsening chronic vertigo and/or making you blocked up/sneezing, runny eyes that make you think you have an infection when you don't.

3) IgG subsets to see if you've got a hidden, diagnosable immune supression condition that would explain increase rates of upper respiratory/sinus infection. Before this I would do total immunoglobulins (IgA, IgG, IgM) to see if your doctor has missed something in your immunity that is glaringly obvious. Each few years I check this, because I'm always run down and infected like someone with HIV, but am HIV negative.

4) NK, T, B cell activation status/function (Lymphocyte subset test). Basic, but cheaper than going around the world with other more complex markers. I'd do that first. My NK Cells are always highly activated (suggestive of fighting infection) as are my T Cells. My B Cells are also, almost always raised too.

5) Check your lymph nodes. If all tests are negative, but you have a stuffy nose, then you need to take on board it's never 'normal' to have lymph node enlargement. I never did, but I do now. It took me 20 years to get like I am now (slow immune suppression). When I first got 'CFS', I hardly ever got an infection - how many times have we heard that?! However, even at first I got a blocked stuff nose when all my tests were 'normal'. Now it's just much worse.

6) Run some mold/fungus tests which might seem boring, but sometimes show something on a RAST panel like IgG Aspergillus Precipitans (fumigatus & niger) , and IgE grass/tree pollen allergy being present in your blood all year long.

If you consider the above, no wonder PWME say they have a stuffy nose (which can also be neurological as our CNS controls blood vessel dilation/constriction. I would hazard a guess at least one on my experimental ideas will be out of whack or the whole gamut if you have chronic ME and end up very squished with secondary conditions like MCAS, POTS etc.

Definitely what we've all learnt is over decades, is at least in many of us, our condition is not the same as the day we were diagnosed, but worse in terms of additional conditions we develop - and not necessarily the baseline 'ME' getting worse. As 'fatigue' is the marker, no one knows this, researches it and we're all left in the dark having to be our own doctor. Very very difficult.

 

[belize44]

Ditto what @alex3619, @Thinktank, and @SilverbladeTE said. Sinuses never really drain well at all, nose is very stuffed, dried (esp in the mornings) and blocked up w/thick mucus. Even when I was a kid when I got a sinus infection, it was always thick and gluey, and w/a deviated septum, it was always a challenge to get that wad of gum out, but when I did, it looked like (spoiler alert!) a mass of mucus and (almost) brain matter.

But like Alex, it comes and goes, but is there most of the time. It most recently flared in early 2013, and got worse after abx, suggesting fungal issues and/or worsening of food intolerances as a result of killing off beneficial bugs w/the abx.

I am curious as to how you got that gunk out?

 

[gdbennett]

I experienced chronic sinus infections in the years that led up the ME. This winter was the first time I experienced it since the ME. I've got it figured out so far) how to keep them to a quiet roar. I'll get to that next, but first I want to give you an idea of what may be causing them. I was tested for chlamydia pneumonia (which is not an STD), but a variation that causes chronic sinus infections and was positive. This is treatable over the long term with antibiotics. I haven't started treatment yet, as I just received the results. So, ask your doctors about this.

Ok - keeping these buggers at bay:

Warm mist humidifiers in the bedroom and living room areas, pumping all the time. Check weather.com and ensure you know what the ideal humidity level is and if it drops below, make sure you have your machines pumping. I also, keep a huge bowling pot of water on the stove. Additionally, my doc said to use a saline nasal spray first to moisten and wash out the nasal cavity, blow, then use afrin. After, Flonase one daily for 2 weeks. In this order only. It could take a week for this to work. After 2 days though, I was much better.

The issue is your nasal cavity is swollen, which causes the pressure in your head and the headaches. Just because you feel better, doesn't mean you should stop. It's still dry outside and dry air in your house. Keep on with this regimen to ensure you don't fall back into the vicious cycle again. You can use the saline spray as many times a day as you like. It's just keeping the passages moist.

Also, it was recommended to get a personal mist inhaler. I bought one for $150 from Target. Pricey, but on demand it puts warm mist right into my nasal cavity and really helped to open up my sinuses. Again, better than an antibiotic, completely natural and safe.

This may seem like overkill, but it was the first time a doc gave me solid advice that worked quickly. I thought I'd pass it on and save you the co-pay and visit. Hope you all feel better soon!

 

[alex3619]

If I lie on my side then the upper nostril unblocks, even without mucus. If I roll over it shifts to the upper side again. This particular issue does not fit with sinusitis or infection, its almost certainly about constriction, and that is most likely to be vascular. Of course if an allergy or infection kicks in my breathing is even worse, and the lying on the side trick does not work.

There is an autonomic pattern of nasal constriction, first one side then another. Its entirely possible this whole thing is autonomic, with allergy or infection as added complications some of the time.

 

[rosie26]

@CFS_for_19_years I saw an Allergist in my severe years and was given allergy shots for about 4 weeks. I was too ill to continue. I told them my problem was a lot more serious than an allergy (felt that way to me and I had also forgotten the seriousness of some allergic reactions as well I should add) and I stopped going. I was pretty desperate for some kind of help and that probably was why I gave it a go.

I have tried the neti pot but found it made things worse. It felt like my sinus walls were absorbing the water instead of flushing and draining. Anyone else experience that? I was surprised and disappointed that even this wasn't helping.

 

[rosie26]

not infections, but constant sinus problems: harder to breathe through them, gotta dig the bogies out like hacking coal to keep breathing

Yeah, I get the hard to breathe too, feels like obstruction as @Thinktank mentioned.

 

[rosie26]

I have chronic sinus problems. But I stopped getting sinus infections when I went on antibiotics for Lyme and Bartonella.

Are you still doing the antibiotic's? You were doing IV but are you continuing with oral antibiotic's at all?

 

[Valentijn]

Are you still doing the antibiotic's? You were doing IV but are you continuing with oral antibiotic's at all?

Yup.

 

[erin]

I answered "no". I had sinus problems frequently in the beginning but now rarely. I haven't had a cold or flu for ages either. My problems are now mostly gastro, vertigo and skin allergy.

 

[dannybex]

@dannybex, thank you for the info about pseudonomos. I'll look into all this. I've also read that colloidal silver gets rid of pseudonomos.

You're welcome. I'm not sure about silver. It's also worth noting that silver can kill both bad and good bacteria.

And I'm assuming we're both talking about the same thing -- pseudonomas, instead of psedonomos?

 

[dannybex]

I am curious as to how you got that gunk out?

I was only able to get it out when I was 'healthy', i.e. prior to getting ME/CFS. And it seemed like almost luck, as I'd have to tilt my head this way, then that, and still it wouldn't come out for days, until I got it just at the right time, and BAM...out it would come, and I'd feel SO much better.

 

[Mary]

@rosie26 - I get sick with sinus-related problems every time I crash, and then it generally takes a week or more to recover from being sick by which time of course I've crashed again, so I get re-sick, over and over and over again.

Recently I drank a lot of lemon juice in water, several times a day, while crashed, on the theory that lemon juice is alkalinizing and might help me recover more quickly from PEM. Unfortunately, it didn't help with PEM; however, I had been sick for some 3 weeks prior to this particular crash and so was expecting to get quite a bit worse, and much to my surprise, I did not get nearly as sick this time and actually started to recover. I'm guessing that it might be due to two things: (1) the lemon juice may have made my system more alkaline; and (2) I bet the vitamin C in the lemon juice is more effective/bioavailable than the vitamin C supplement I've been taking. Whichever is the case, or both, it seems the lemon juice really is very effective for my sinus issues. I did start to get worse at one point and this time just drank a bunch of lemon juice in water and sure enough, got better.

 

[TigerLilea]

Another thing to consider is the possibility that neti pots and frequent nasal irrigation may be flushing away beneficial bacteria.

A study in 2012 found a specific microbiome in the sinuses of healthy peeps that were not there in those with chronic sinus problems. So some have tried snorting various probiotic species with great relief. I haven't tried it yet, but am considering it when I win the lotto.

Here's a website where you can read of the many options and also the results some have experienced:

http://lactobacto.com/2015/01/12/the-one-probiotic-that-cures-sinusitis/

I read recently that they think now that people who have chronic problems with their sinuses actually have a problem with their beneficial sinus bacteria being too low and it can't keep the bad bacteria in check. I never had sinus issues, or allergies, until I was put on penicillin 26 years ago for a tooth infection. The sinus issues, allergies, and ME/CFS all started at the same time.

I have found that when I'm going through sinus issues it does help to use the neti pot. However, I don't use it all the time as I've heard that you can over use it and wipe out the good bacteria along with the bad. I've started adding probiotics to the salt water. Supposedly kimchi juice can also help to repopulate the sinuses with beneficial bacteria. I haven't tried that yet but will the next time I buy more kimchi.

I've spent years researching and trying different protocols for ME/CFS without much success, so I've decided that for 2017 I'm going to concentrate more on allergies and sinuses. My instinct tells me that if I could find a solution for one of them, that it will be the answer to all of them. Time will tell.

 

[TigerLilea]

On a side note, do those of you with sinus issues also get rhinitis after/during eating? I get this from eating anything, doesn't have to be hot in temperature or spicy. And it doesn't necessarily occur with specific foods (ie. some mornings I get it from my breakfast which is always the same, sometimes I don't at all). It's something that's developed later in my ME history like my sinus issues, so wondering if others with sinus stuff experience that too.

I've had this same problem for years. I've never been able to pinpoint it to any specific food. I can go weeks without it and then for months my nose is a dripping tap even though nothing in my diet has changed.