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gardenmom5

prayers please. . . .

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I was diagnosed with pneumonia on Jan 10.  I was given two different antibiotics to be taken together.  I could tell they weren't helping, went back in and was sent on my way. . . . several days after the rx were over - I went back to emergency (they did x-rays and a CT scan), and was admitted with a heavier IV antibiotic which was changed to an amoxicillin based IV.  then sent home with a 10 days supply.  I took them all. after declining for a few days. . . . I went in, and was given another week of the same antibiotic.  I had phone visit today - I'm still on this antibiotic and have been having increasing trouble breathing.  they wont' do anything unless they can hear fluid in my lungs . . (basically).   which means, I will get to suffer through the weekend and go in again. (or maybe if it's bad enough on Friday . . . . . )

I can feel it returning in my lung.  my head is buzzing. . . . I'm doing less than I was.  we'll see what things are like on Friday - I don't want to have to go to emergency AGAIN!  I just want an antibiotic that will actually knock this out.

prayers please that I can get well.

- yes ,it's bacterial, not viral.  

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I agree it might be time to call in some additional specialists for more opinions if you haven’t already?  That’s worrying, for sure.  I’m praying for you!

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I am so sorry.

I am going to tell you what my friend has just dealt with, and it may not relate to your situation at all, but something to think about.

My friend went into the hosptial with pneumonia in December, before Christmas.  She ended up staying there 10 days, including 4 of those days in ICU.  5 different antibiotics, etc....

They sent her home.  Four days later, she had to go back.  She was in 4 days that time, different hosptial, and they figured out what was going on.  She had rheumatoid arthritis.

They told her that auto-immune diseases often present in the form of pneumonia.

If you aren't getting better, something to consider exploring.

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That sounds rough!  

My friend went through something similar, although hers wasn't diagnosed as pneumonia.  Bronchitis, I think?  But they could see it was bacterial and she got it before Christmas and it just went on and on.  She felt miserable and had been on several courses of antibiotics.  They were finally able to determine that hers had an unusual allergy component to it, which was somehow preventing the actual bacterial part to completely go away.  I don't really understand, but once they treated her for both the bacterial infection and the allergy, it finally went away.

Anyway, just brainstorming a little!

Also, just remembering that the first time my dd got pneumonia was also when her asthma showed itself for the first time.

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5 hours ago, DawnM said:

I am so sorry.

I am going to tell you what my friend has just dealt with, and it may not relate to your situation at all, but something to think about.

My friend went into the hosptial with pneumonia in December, before Christmas.  She ended up staying there 10 days, including 4 of those days in ICU.  5 different antibiotics, etc....

They sent her home.  Four days later, she had to go back.  She was in 4 days that time, different hosptial, and they figured out what was going on.  She had rheumatoid arthritis.

They told her that auto-immune diseases often present in the form of pneumonia.

If you aren't getting better, something to consider exploring.

 

20 minutes ago, J-rap said:

That sounds rough!  

My friend went through something similar, although hers wasn't diagnosed as pneumonia.  Bronchitis, I think?  But they could see it was bacterial and she got it before Christmas and it just went on and on.  She felt miserable and had been on several courses of antibiotics.  They were finally able to determine that hers had an unusual allergy component to it, which was somehow preventing the actual bacterial part to completely go away.  I don't really understand, but once they treated her for both the bacterial infection and the allergy, it finally went away.

Anyway, just brainstorming a little!

Also, just remembering that the first time my dd got pneumonia was also when her asthma showed itself for the first time.

 

these are helpful.  I've wondered if this is related to chronic sinusitis. (I actually think that's where the bacteria came from, as I'd been doing some nasal washes to unblock things.)  I've got a referral to an ENT - and I'll explain it to the scheduler to hopefully get in sooner.   while the junk in my sinuses is improving- there are still bits and pieces of infection up there.

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11 minutes ago, gardenmom5 said:

 

 

these are helpful.  I've wondered if this is related to chronic sinusitis. (I actually think that's where the bacteria came from, as I'd been doing some nasal washes to unblock things.)  I've got a referral to an ENT - and I'll explain it to the scheduler to hopefully get in sooner.   while the junk in my sinuses is improving- there are still bits and pieces of infection up there.

 

Kristen, my son had some sinus issues that would not stop spiraling. He was misdiagnosed with allergies and treated for allergies for a couple years. Everything changed when we went to a magnificent, brainy, scientifically-curious, think-outside-the-box allergist. Allergy testing showed no allergies, but other testing showed a massive bacterial infection. The final diagnosis was a colonized bacterial infection.

The treatment was unusual and amazingly effective.

Dr prescribed mupirocin antibiotic cream AND Qvar inhaler.

For six weeks, ds did a daily sinus rinse using a NeilMed bottle. The rinse consisted of Mupirocin cream + NeilMed packet + lukewarm water. We were told to measure out a 3-inch strip of the cream and dissolve it with the NeilMed packet in the warm water. Then, use the NeilMed bottle with the huge tip to shoot the medicated water through the nose.

After the rinse, we placed a baby bottle nipple with the tip cut off over the end of the Qvar inhaler (the part that would normally go in the mouth). Ds would then puff Qvar into each nostril (NOT in the mouth).

The theory was that the antibiotic needed to be placed directly into the infected cavities, plus the regular clean-out would also help kill the bacteria. The Qvar inhaler disperses the medicine in teeny-tiny vapor droplets, so the medicine could get everywhere, in all the nooks and crannies.

Ds did this for six weeks to deal with the colonized infection. Since he has broken his nose twice, it's also the go-to that we use whenever he gets a sinus infection. In that case, we usually treat for 7-10 days based on the duration of the new infection.

Hope this helps.

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well, I've got an appointment with a PA in the ENT dept.  it's Kaiser . . . . . . 

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37 minutes ago, gardenmom5 said:

well, I've got an appointment with a PA in the ENT dept.  it's Kaiser . . . . . . 

I'm glad you have another appt.  So sorry it's Kaiser.  I don't hear good things about them.

Prayers they can get to the bottom of this.   How frustrating.

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7 hours ago, DawnM said:

I am so sorry.

I am going to tell you what my friend has just dealt with, and it may not relate to your situation at all, but something to think about.

My friend went into the hosptial with pneumonia in December, before Christmas.  She ended up staying there 10 days, including 4 of those days in ICU.  5 different antibiotics, etc....

They sent her home.  Four days later, she had to go back.  She was in 4 days that time, different hosptial, and they figured out what was going on.  She had rheumatoid arthritis.

They told her that auto-immune diseases often present in the form of pneumonia.

If you aren't getting better, something to consider exploring.

 

I would love to see some links to research, if you have any (otherwise I will google science it). I have some autoimmune issues, and suspect my daughter deals with the same. She has also experienced repeated bouts of pneumonia. Never in a million years would I have thought to link the two. Thanks for mentioning this. 

gardenmom I hope you feel better soon. DD has dealt with bacterial pneumonia that didn’t go down easily with just the first antibiotic. Prayers that you will soon be healed and breathing easy.  

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7 minutes ago, Seasider too said:

 

I would love to see some links to research, if you have any (otherwise I will google science it). I have some autoimmune issues, and suspect my daughter deals with the same. She has also experienced repeated bouts of pneumonia. Never in a million years would I have thought to link the two. Thanks for mentioning this. 

gardenmom I hope you feel better soon. DD has dealt with bacterial pneumonia that didn’t go down easily with just the first antibiotic. Prayers that you will soon be healed and breathing easy.  

Irony is - I had bacterial pneumonia (and I was much sicker) 16 years ago.  I don't remember the name of the antibiotic -it was NOT any form of amoxicillin, but it knocked it out first try.   I've not had good experiences with an amoxicillin antibiotic being adequately effective for me - but that's what drs will always prescribe first.

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19 minutes ago, gardenmom5 said:

Irony is - I had bacterial pneumonia (and I was much sicker) 16 years ago.  I don't remember the name of the antibiotic -it was NOT any form of amoxicillin, but it knocked it out first try.   I've not had good experiences with an amoxicillin antibiotic being adequately effective for me - but that's what drs will always prescribe first.

 

Yeah that’s the gateway abx 😆

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53 minutes ago, Seasider too said:

 

I would love to see some links to research, if you have any (otherwise I will google science it). I have some autoimmune issues, and suspect my daughter deals with the same. She has also experienced repeated bouts of pneumonia. Never in a million years would I have thought to link the two. Thanks for mentioning this. 

gardenmom I hope you feel better soon. DD has dealt with bacterial pneumonia that didn’t go down easily with just the first antibiotic. Prayers that you will soon be healed and breathing easy.  

 

I do not have any links, BUT, when I talked to another friend about it, she said RA runs in her family and they have been told about it, so I will ask her if she has any links.

I would never have thought to relate the two either, but apparently it is a thing.

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47 minutes ago, gardenmom5 said:

Irony is - I had bacterial pneumonia (and I was much sicker) 16 years ago.  I don't remember the name of the antibiotic -it was NOT any form of amoxicillin, but it knocked it out first try.   I've not had good experiences with an amoxicillin antibiotic being adequately effective for me - but that's what drs will always prescribe first.

 

Have you taken prednizone?  

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Are you being seen by pulmonology? This is beyond a GP. And also nodding at the tip to keep autoimmune issues on the radar. Long term inflammation can cause interstitial lung disease. Fairly common with RA. Finally, are you doing breathing treatments, etc to lift enough burden off your breathing to give your body a chance to clear this? Lower lung issues are a different beast than upper respiratory ones. 

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1 hour ago, Ktgrok said:

Can you make an appt with a pulmonologist?

that's a thought. not directly - have to go through a referral.

I do have some other things that need to be watched - a swollen lymph node that showed up on the x-ray.  I think it's been there since I last had pneumonia 16 years ago. I always thought it was just scar tissue, but maybe not.  they were concerned enough about it they did the CT with contrast dye in the ER.  otherwise they would have left it at just an x-ray.  but my medical reports (of which I received a copy) - said it needs to be followed.  if it is fine with the follow-up xray, great.  if it's still showing up as an issue - it will require further investigation.  

the swelling in the lymph node is what triggered them doing a 12 point EKG, because of the type of pain it caused.  and checking to make sure I didn't have a clot.  but I can still feel it - which means it's still inflamed.  usually it's fine, unless I'm really sick.

 

8 minutes ago, prairiewindmomma said:

Are you being seen by pulmonology? This is beyond a GP. And also nodding at the tip to keep autoimmune issues on the radar. Long term inflammation can cause interstitial lung disease. Fairly common with RA. Finally, are you doing breathing treatments, etc to lift enough burden off your breathing to give your body a chance to clear this? Lower lung issues are a different beast than upper respiratory ones. 

 not being seen by pulmonology.  we'll see how I do over the weekend - and if I have to, I'll push it.

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Can they culture what is growing?  I also agree in the specialists, Prednisone, and Inhalers.

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1 hour ago, Pen said:

How are you feeling now?

 

I've taken my last augmentin . . . . . I have an oppressive feeling in my upper right lung.  . . . so I don't think it's knocked out.  if I get another antibiotic - I'll insist it is no form of amoxicillin.  it's ineffective for me.

47 minutes ago, Ottakee said:

Can they culture what is growing?  I also agree in the specialists, Prednisone, and Inhalers.

I have an emergency inhaler - it's questionable about how much it is helping.  when I had pneumonia 16 years ago -they did a nebulizer treatment and it made me worse.  (that's actually what prompted them to do an x-ray.  I was pg - so they didn't want to do one.)

sadly - I feel I've gotten better care in the emergency dept than in the clinic.

 

I do have an appointment next week with ENT - and I strongly think there is a sneaky infection up there that is keeping this alive.  (I have pressure - and tinnitus - in my right ear, but no pain or obvious sign of infection.  I also currently have pain in my right eyebrow - the frontal sinuses. - actually, both of them.

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52 minutes ago, gardenmom5 said:

I've taken my last augmentin . . . . . I have an oppressive feeling in my upper right lung.  . . . so I don't think it's knocked out.  if I get another antibiotic - I'll insist it is no form of amoxicillin.  it's ineffective for me.

 

If you have coughed etc anything out, maybe they could do a culture and sensitivity test

 

I hope whatever it is, that you’ll get it cleared up and feel better soon.  

Are you trying to school ds ?

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3 hours ago, Pen said:

 

If you have coughed etc anything out, maybe they could do a culture and sensitivity test

 

I hope whatever it is, that you’ll get it cleared up and feel better soon.  

Are you trying to school ds ?

no.  he is absolutely refusing to do anything related to school.  pathological demand avoidance (from a British ASD researcher) and "Deep in Defense Mode (from an autism group - created by those on the spectrum.) - seem to be pretty much the same thing, and fit him.  We're trying to find either a private school for those on the specturm, or private tutor service with someone he can connect with.  we toured one yesterday.  He objected because of how far it was, and how long the day would be.  I told one social worker - don't worry about him connecting with peers - lets get doing school.  working with peers can come later.

his complex gaming mouse did recently die - and I let him know I wasnt' buying him a new one.  so - he's learning to work to earn money.  He'd had money, and blew most of it on games.  1ds did that - and he had significantly more to blow.  (he's now working on a MS in engineering.  so I have hope.)

Edited by gardenmom5
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1 hour ago, gardenmom5 said:

no.  he is absolutely refusing to do anything related to school.  pathological demand avoidance (from a British ASD researcher) and "Deep in Defense Mode (from an autism group - created by those on the spectrum.) - seem to be pretty much the same thing, and fit him.  We're trying to find either a private school for those on the specturm, or private tutor service with someone he can connect with.  we toured one yesterday.  He objected because of how far it was, and how long the day would be.  I told one social worker - don't worry about him connecting with peers - lets get doing school.  working with peers can come later.

 

Sounds like a good plan, but hard on top of feeling sick too.

1 hour ago, gardenmom5 said:

his complex gaming mouse did recently die - and I let him know I wasnt' buying him a new one.  so - he's learning to work to earn money. 

 

Oh good.  A carrot. 

1 hour ago, gardenmom5 said:

He'd had money, and blew most of it on games.  1ds did that - and he had significantly more to blow.  (he's now working on a MS in engineering.  so I have hope.)

 

Hope is good!!!

 

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Are you running a fever at all? If yes, get your serum ferritin tested. If it’s high, you might actually have a cytokine storm as well as pneumonia. Fever and high ferritin are the two main symptoms. There is a super nifty device now that can filter cytokines out of blood, too, and a number of larger medical facilities have it now. It’s called the CytoSorb.

If no fever, then my vote is to see a pulmonologist soon. Do you have a pulse oximeter?

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12 hours ago, Pen said:

 

If you have coughed etc anything out, maybe they could do a culture and sensitivity test

 

I hope whatever it is, that you’ll get it cleared up and feel better soon.  

Are you trying to school ds ?

you don't cough anything out of your lungs with pneumonia - it comes from the maxillary sinuses.

but it's tiny pieces, and for the most part it's not going to show anything.

when I was pg with 1ds - I had a bad sinus infection.  my ob sent me to an ENT who did a culture.  put me on an antibiotic in the meantime . . . I felt better, few days later . - "you don't have a sinus infection"...um. . . . . My OB and I just looked at each other.  when I told him I had another one during that pregnancy - he just wrote me a rx for what I had the first time.

 

I had one dr who'd sent me for a head x-ray every time I went in for a sinus infection (It will show sinuses that will never show up on a culture).   after awhile - he just wrote me a rx.

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3 hours ago, BeachGal said:

Are you running a fever at all? If yes, get your serum ferritin tested. If it’s high, you might actually have a cytokine storm as well as pneumonia. Fever and high ferritin are the two main symptoms. There is a super nifty device now that can filter cytokines out of blood, too, and a number of larger medical facilities have it now. It’s called the CytoSorb.

If no fever, then my vote is to see a pulmonologist soon. Do you have a pulse oximeter?

I don't run fevers.  last time - it never hit 101.  this time, it never hit 100.  well, maybe once . . . . 

so, temp has been normal enough.  no pulse ox.   

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7 hours ago, gardenmom5 said:

you don't cough anything out of your lungs with pneumonia - it comes from the maxillary sinuses.

but it's tiny pieces, and for the most part it's not going to show anything.

when I was pg with 1ds - I had a bad sinus infection.  my ob sent me to an ENT who did a culture.  put me on an antibiotic in the meantime . . . I felt better, few days later . - "you don't have a sinus infection"...um. . . . . My OB and I just looked at each other.  when I told him I had another one during that pregnancy - he just wrote me a rx for what I had the first time.

 

I had one dr who'd sent me for a head x-ray every time I went in for a sinus infection (It will show sinuses that will never show up on a culture).   after awhile - he just wrote me a rx.

 

*Some* people with pneumonia certainly do cough stuff out of lungs.    I’ll accept that you aren’t one of them. 

How’s your fluid intake?  

Maybe your sinuses can’t drain well.

eta: anyway, I hope you will feel better soon

 

 

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50 minutes ago, Pen said:

 

*Some* people with pneumonia certainly do cough stuff out of lungs.    I’ll accept that you aren’t one of them. 

How’s your fluid intake?  

Maybe your sinuses can’t drain well.

eta: anyway, I hope you will feel better soon

 

 

I was told this by my dr. it's how the airsacs of the lungs are inflamed.

I've coughed stuff up from my lungs before - but it originated in my sinuses.  drained down the back of the throat - and settled in the lungs and was coughed up.  that didn't originate in the lungs.

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On 2/12/2020 at 10:13 AM, gardenmom5 said:

Irony is - I had bacterial pneumonia (and I was much sicker) 16 years ago.  I don't remember the name of the antibiotic -it was NOT any form of amoxicillin, but it knocked it out first try.   I've not had good experiences with an amoxicillin antibiotic being adequately effective for me - but that's what drs will always prescribe first.


Erythromycin and an asthma inhaler concurrently works. My mom and maternal aunt has severe penicillin allergy while mine is mild allergy, so doctors would give me erythromycin instead.

https://medlineplus.gov/druginfo/meds/a682381.html

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You can get a pulse oximeter and a peak flow meter off amazon and get them delivered in a jiff. Neither are expensive, around $15 each. I first started using a peak flow meter when I had pneumonia, numbers seemed in the normal range for a female of my age and height. Once my lungs recovered, turned out I had been way low, that my natural numbers were much higher. So you might want at least to start making data so you can track it.

For the inflammation, you might try turmeric. It's not going to solve everything or get rid of the bacteria, but it might help tamp the inflammation a bit. I use a potent version from VitaminShoppe. Also, are you on cough syrup? I was reading old threads of wisdom here, and coughing increases inflammation. So stopping the coughing can be a good deal, and the cough med might help zonk you out so you can sleep/recover. 

Mucinex makes a product that has both the guaf (for the mucus) and the cough (dextromethorphan) in the one tablet. Might be something to try. Or just the dextro for cough. As you say, the pneumonia (inflammation) doesn't *have* to have the mucus to happen, meaning the mucinex won't prevent it. But it might calm things down and help.                                             Cough Suppressant and Expectorant, Mucinex DM Maximum Strength 12 Hr Relief Tablets, 42ct, 1200 mg, Thins & loosens mucus that causes chest congestion, #1 Doctor recommended OTC expectorant                                       here it is with the cough, but Target might have it in stock cheaper for someone to pick up for you.

Ibuprofen can also take down inflammation. 

If you're running lower temp, maybe test your thyroid after all this mess is over.

Sorry you're sick. 

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5 minutes ago, Arcadia said:

an asthma inhaler

Just a tip for op, the inhaler is radically more effective when used with a spacer. I like my AeroChamber Plus Flo-Vu that someone here had recommended. It's the bomb. You can call pharmacies and see who has it. Our Walmart tends to. Then your doc writes the scrip. It's maybe $30, but makes the inhaler work SO much better.

                                            Quest AsthmaMD Lung Performance Peak Flow Meter Measures Lung Performance for Athletes, asthmatics, Breathing Lung Exerciser. Breath Measurement System. Includes Downloadable Free Tracking App                                      Here's an example of a peak flow meter.

and a pulse oximeter                                             Innovo Deluxe Fingertip Pulse Oximeter with Plethysmograph and Perfusion Index                                     

Edited by PeterPan
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1 hour ago, Pen said:

*Some* people with pneumonia certainly do cough stuff out of lungs.

I've had it both ways, with coughing up green stuff and not. It blew my mind the time I had nothing to cough up, because all I had was the PAIN in my chest and I called the pulmonologist and was like I don't know what's wrong, I took mucinex, tried so hard, I'm not coughing up anything, no green. And they're like hello, that's the definition of pneumonia, the inflammation. Sigh.

That was when I started taking turmeric, because I finally realized every practitioner I went to for anything was telling me I had inflammation. It was the connector in my symptoms. 

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On 2/14/2020 at 7:42 AM, PeterPan said:

I've had it both ways, with coughing up green stuff and not. It blew my mind the time I had nothing to cough up, because all I had was the PAIN in my chest and I called the pulmonologist and was like I don't know what's wrong, I took mucinex, tried so hard, I'm not coughing up anything, no green. And they're like hello, that's the definition of pneumonia, the inflammation. Sigh.

That was when I started taking turmeric, because I finally realized every practitioner I went to for anything was telling me I had inflammation. It was the connector in my symptoms. 

the definition of pneumonia  - the sacs themselves are filled with fluid/pus so they can't absorb air. the fluid has to be reabsorbed by the body. This is what I was told by my doctors (plural) while I was in the hospital. I've had bacterial pneumonia twice, required hospitalization with IV antibiotics both times. the only time I coughed up anything - was the piece of food I'd aspirated the first time. (within a day of starting an antibiotic.) it was covered in blood.   

the only times I've ever coughed gunk from my lungs - was with drainage from my sinuses that settled in my lungs (it felt like it was being ripped out of my lung. hurt like the dickens), or with bronchitis.

pneumonia

 
 
 
NOUN
  1. lung inflammation caused by bacterial or viral infection, in which the air sacs fill with pus and may become solid. Inflammation may affect both lungs (double pneumonia), one lung (single pneumonia), or only certain lobes (lobar pneumonia).
     
    bronchitis:
    NOUN
    inflammation of the mucous membrane in the bronchial tubes. It typically causes bronchospasm and coughing. 
     
 
 
  1. Thank you everyone for your prayers.
     
    I've started adding Allicin (I had a PA suggest 2 Tblsp of raw honey since it is antimicrobial.  yeah, 'cause I really need that much sugar  . .. . not.)  - it's a compound in garlic with a very short lifespan, so either lots of fresh garlic, or something shelf stable.  it's antimicrobial.  the augmentin is done, after four solid weeks of oral/IV antibiotics my GI is a mess (at least that's what I'm blaming the nausea on) - am doing probiotics, and I'm finally starting to feel better.  just really tired.  I'm hoping I'm really on the downhill now.
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Yeah it takes a long time to recover from antibiotics. Our dentist used to sell ProBiora, an oral probiotic. I got cavities after antibiotics and the oral probiotics are supposed to help. And Florastor can help heal your gut lining if you develop some chemical sensitivities from your gut being off.

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On 2/14/2020 at 7:24 AM, gardenmom5 said:

I was told this by my dr. it's how the airsacs of the lungs are inflamed.

I've coughed stuff up from my lungs before - but it originated in my sinuses.  drained down the back of the throat - and settled in the lungs and was coughed up.  that didn't originate in the lungs.

 

I had a time of such bad sinus trouble continuing and recurring that surgery to add drainage was considered.

I then tried whatever I could think of, and found that,  for me, fluids lots and lots, plus liquifiers (Like guafenisin ? Spelling? Or similar herbals etc) plus physical position (Like head upside down and tilted in various ways to promote draining—and particularly drainage that could be gotten out through nose—not go into lungs) worked and after that bout, it didn’t come back.  Though I cover up well if I’m out at blowy PNW Coast .  

I had pneumonia once, but it was viral and different than what you describe. 

 

 

Trying to picture situation you describe it seems the draining into your lungs your lungs is a problem.  

 

Edited by Pen

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