Fatigue & sinusitis

[Sasha]

I have chronic sinusitis, though only recently diagnosed, and have noticed quite a bit of info linking fatigue to sinusitis, such as this:

http://www.mc.vanderbilt.edu/reporter/index.html?ID=1220

Makes me wonder whether, for PWME, fixing the sinusitis might alleviate some of the fatigue or whether we'd have to fix whatever underlying that that is wrong with us that has caused both the sinusitis and the ME.

I know a lot of people on PR have sinusitis and have tried various treatments and I wonder whether anyone has found that treating their sinusitis has improved their general health.

It would be especially interesting if non-systemic sinusitus treatments such as nasal irrigation have impacted general health.

I'm about three weeks into nasal irrigation and although it's improved my sinusitis symptoms, it's had no other effects. Early days, though: I was too ill yesterday to do the nasal rinse in the morning and was getting a sinus headache by the evening so I've got a long way to go.

 

[Nielk]

I have been suffering from chronic sinusitis. I have treated my sinus problems iwith sinus surgery, anti-biotics, steroids, nasal sprays, irrigation, antihistamines. Some of these treatments have brought temporary relief but, none have touched or improved my CFS symptoms.

 

[Sushi]

I have chronic sinusitis, though only recently diagnosed, and have noticed quite a bit of info linking fatigue to sinusitis, such as this:

http://www.mc.vanderbilt.edu/reporter/index.html?ID=1220

Makes me wonder whether, for PWME, fixing the sinusitis might alleviate some of the fatigue or whether we'd have to fix whatever underlying that that is wrong with us that has caused both the sinusitis and the ME.

I know a lot of people on PR have sinusitis and have tried various treatments and I wonder whether anyone has found that treating their sinusitis has improved their general health.

It would be especially interesting if non-systemic sinusitus treatments such as nasal irrigation have impacted general health.

I'm about three weeks into nasal irrigation and although it's improved my sinusitis symptoms, it's had no other effects. Early days, though: I was too ill yesterday to do the nasal rinse in the morning and was getting a sinus headache by the evening so I've got a long way to go.

Hi Sasha,

I have had chronic sinusitis for many, many years and have tried many treatments. Nasal irrigation with a machine and good mix in the solution help a lot, but the thing that has helped the most--both sinus-wise and with other ME/ CFS symptoms is treating gut infections. After a round of gut treatment, sinus problems disappear.

So my take so far is that something about ME/CFS is causing the sinus problems to be chronic--maybe immune dysfunction as the immune system is largely in the gut?

Sushi

 

[Sasha]

Hi Sasha,

I have had chronic sinusitis for many, many years and have tried many treatments. Nasal irrigation with a machine and good mix in the solution help a lot, but the thing that has helped the most--both sinus-wise and with other ME/ CFS symptoms is treating gut infections. After a round of gut treatment, sinus problems disappear.

So my take so far is that something about ME/CFS is causing the sinus problems to be chronic--maybe immune dysfunction as the immune system is largely in the gut?

Sushi

Hi Sushi - that's interesting (as is neilk's post that suggests that tackling the sinuses directly hasn't helped).

I'm taking MAF 878 and although I'm not aware of gut problems as such, I think that MAF taken as a culture in milk (rather than injectable) might be expected to "reset" your intestinal flora to the same microbiome as in newborns. So maybe MAF might help those of us with sinusitis in that way, as well as by jacking up the production of macrophages.

 

[Sushi]

Hi Sushi - that's interesting (as is neilk's post that suggests that tackling the sinuses directly hasn't helped).

I'm taking MAF 878 and although I'm not aware of gut problems as such, I think that MAF taken as a culture in milk (rather than injectable) might be expected to "reset" your intestinal flora to the same microbiome as in newborns. So maybe MAF might help those of us with sinusitis in that way, as well as by jacking up the production of macrophages.

Yes, I think that is the hope!

I did not have "gut symptoms" either but tests showed a lot of infections.

Sushi

 

[Sasha]

I did not have "gut symptoms" either but tests showed a lot of infections.

I have been naively assuming that since I don't have gut symptoms I don't have gut infections but now you've got me thinking.

Do you mind saying what infections and what treatments? What made you test for gut infections when you didn't have symptoms?

 

[Sushi]

I have been naively assuming that since I don't have gut symptoms I don't have gut infections but now you've got me thinking.

Do you mind saying what infections and what treatments? What made you test for gut infections when you didn't have symptoms?

Hi Sasha,

My doctor routinely tests the gut http://www.redlabs.be/ as he ususally finds problems there in ME/CFS patients. Initially I had a HUGE overgrowth of Prevotella (anaerobic bacteria). One course of xifaxin cleared that up (non-systemic antibiotic).

A year later I had the more sophisticated test above (it was new). It tests about 67 bacteria. The Provotella was still gone but this test showed lower levels of overgrowth of (too many to list) gram positive bacteria. I am again treating this with a short course of xifaxin every few months.

ABX may not be the answer, but this one helps me a lot with controlling gut infections and I don't experience any side effects. I take VSL-3 every day to repopulate the gut.

Sushi

 

[Sasha]

Thanks, Sushi - I've never even heard of Prevotella. That's all very interesting! I'm off to Wikipedia...

 

[nanonug]

I have chronic sinusitis [...] and have noticed quite a bit of info linking fatigue to sinusitis

Chronic sinusitis is one of the symptoms associated with some form of Mast Cell Activation Disorder (MCAD). I am fairly convinced that ME/CFS is nothing more than undiagnosed MCAD. If this is indeed the case, the link between chronic sinusitis and undiagnosed MCAD (aka ME/CFS) becomes obvious.

 

[MNC]

Do all of you have REAL sinus infections as seen and diagnosed in scans, or is it just sinusitis-like symptoms?

Because I have amazing sinusitis symptoms for 15+ years, one by one as described in sinusitis, but after lots of scans, MRIs or x-rays no infection has ever been found.

 

[Sushi]

Do all of you have REAL sinus infections as seen and diagnosed in scans, or is it just sinusitis-like symptoms?

Because I have amazing sinusitis symptoms for 15+ years, one by one as described in sinusitis, but after lots of scans, MRIs or x-rays no infection has ever been found.

Scans show mine but don't reflect the level of suffering. Sometimes a small amount of infected mucous--if it is blocked from draining, can give big-time symptoms. Also, the infection probably messes with your immune system.

Sushi

 

[ukxmrv]

My sinus problems have been captured on scans but clearing up the sinus problems temporarily (and this being reflected in the scans and my symptoms) had no effect on the ME ones. When I have an acute sinus infection I have a red face, pain, discharge (green, bleeding) and sleep more.

By washing my sinus area and taking AB's when that doesn't work I can clear the problem but it keeps coming back.

There is also a paper somewhere on body pain and sinusitis but I've not found that this is related for me.

 

[Sasha]

Do all of you have REAL sinus infections as seen and diagnosed in scans, or is it just sinusitis-like symptoms?

Because I have amazing sinusitis symptoms for 15+ years, one by one as described in sinusitis, but after lots of scans, MRIs or x-rays no infection has ever been found.

I haven't had (or been offered) a scan. My GP doesn't believe I have an infection because my nasal mucus isn't green. I'm told this isn't necessarily a good indication. I don't know if I have an infection or just inflammation for some reason.

 

[heapsreal]

My doc did research into sinusitis and cfs/me, many are staph infections and they are opportunistic buggers so love people like us with crappy immune systems.

I have been functioning quite well with antivirals etc but when my sinuses play up it brings me to my knees. The only thing that has really helped me is doxycycline at 200mg a day, only problem is that when i stop this it comes back, so at the moment im hoping immunovir will strengthen my immune system enough that when i stop antibiotics that it wont come back. Im quite sure its bacterial as abx help this alot and come back when i stop, this is common in people with immune defiencies. At the moment im just on abx all the time and increase the dose for occassions when it plays up,i use nystatin and probiotics to help avoid any issues with abx.

My symptoms of sinusitis are from frontal sinuses that run across your forehead, so its hard to get any effect from saline flushes etc. I dont get a runny nose but do get post nasal drip- that sensation of always trying to clear your throat. headaches are bad and wake me up from sleep and if sinusitis get really bad the pressure builds up enough that it increases my blood pressure.

i think sinusitis for us is just one of these things thats going to hang around until there is a treatment for ME/cfs and i believe its justa co-infection just like other infections can be??

good luck with treating it.

 

[heapsreal]

i dont think successfully treating sinusitis is going to cure cfs/me but its going help u feel alot better. There are probably somepeople who have been diagnosed with cfs/me but there fatigue issues are really chronic sinusitis, when that happens cfs/me is just a misdiagnosis??

 

[MNC]

I haven't had (or been offered) a scan. My GP doesn't believe I have an infection because my nasal mucus isn't green. I'm told this isn't necessarily a good indication. I don't know if I have an infection or just inflammation for some reason.

But still, how can they deny a scan? Here in Spain at least I get any test I need via Social Security for free or via my private insurance. After years of pain, come on, a scan is totally indicated.

Last tuesday I learnt the lesson again about doctors mistakes and scans and x-rays mistakes. For over 20 years I was complaining of pain in my upper teeth, terrible pain which they said was nervous, just as the not-sinusitis. Well... after that 20+ years battle finally last tuesday I pulled those teeth off and guess what came out... a huge infection about 1 inch size which was up there next to my sinuses in my canine. I hoped it would resolve the sinusitis-like thing, but it has got even worse now. It's a bit early as only 3 days have passed but I feel it's not going to get better in the sinuses, so I'll keep fighting the real enemies, the doctors, until I find the infections I have in that sinuses-teeth-maxillary area.

Doctors and tests are WRONG lots and lots and lots of times, specially about scans and x-rays. They must trust the patients and the symptoms, not the tests so much.

 

[Sasha]

My symptoms of sinusitis are from frontal sinuses that run across your forehead, so its hard to get any effect from saline flushes etc. I dont get a runny nose but do get post nasal drip- that sensation of always trying to clear your throat. headaches are bad and wake me up from sleep and if sinusitis get really bad the pressure builds up enough that it increases my blood pressure.

Hi heaps - sorry you have got this so bad. At it's worse (when I was put on Flixonase by my doc) I had discomfort under the eyes and got headaches that started behind my eyebrows and then spread to my forehead. I've managed to get rid of the headaches by using the nasal rinse. I have a viral infection at the moment and was too ill yesterday to do the nasal rinse in the morning and started to get a headache in the evening for the first time since I started the nasal rinse.

I realise that the nasal rinse won't actually reach the upper part of the sinuses but maybe clearing out the lower sinuses helps indirectly. It seems to be working that way for me.

 

[heapsreal]

Hi heaps - sorry you have got this so bad. At it's worse (when I was put on Flixonase by my doc) I had discomfort under the eyes and got headaches that started behind my eyebrows and then spread to my forehead. I've managed to get rid of the headaches by using the nasal rinse. I have a viral infection at the moment and was too ill yesterday to do the nasal rinse in the morning and started to get a headache in the evening for the first time since I started the nasal rinse.

I realise that the nasal rinse won't actually reach the upper part of the sinuses but maybe clearing out the lower sinuses helps indirectly. It seems to be working that way for me.

Sasha i do use the saline sprays and it does help some but doxycycline is the thing thatreally helps me and it works well but it would be good to not have to rely on antibiotics.

 

[Sasha]

But still, how can they deny a scan? Here in Spain at least I get any test I need via Social Security for free or via my private insurance. After years of pain, come on, a scan is totally indicated.

Hi MNC - I'm not sure how a scan would help. If my GP doesn't think that one is indicated then I won't be able to get one unless I can come up with a good argument, based on evidence, as to why I should have one. If a scan showed my sinuses had got nibbled, would I be treated with antibiotics? I'm not sure I'd want that. I'm on MAF 878 and am hoping that that will maybe tackle the problem.

 

[MNC]

i think sinusitis for us is just one of these things thats going to hang around until there is a treatment for ME/cfs and i believe its justa co-infection just like other infections can be??

I agree. Unfortunately.