Want better control of my infections...welcome any and all.

Hi everyone, I'm writing to get feedback about how your BRX has progressed. For the first seven years I literaly had no problems except for occasional respariotory infections. About 18 months ago I began to have fatigue and it has moderated some since so that I am about back 75% normal. Less fatigue is a welcome guest.

In the last year I have begun to have exacerbation of the BRX with comes with gobbs of sputum priduction and not feeling well. My temperature in most of these cases has is low grade for me at 99.3. My recent event this past week had me feeling a bit more sick with my temp. at 100.6.

Usually, as I said, there is a round of antibiotics and steroids though I am trying to stay away from the two drugs so that I dont't develope all the consequences of overuse. The most recent event is being treated with Avelox.

Recntly I was diganosed with an ACHROMOBACTER lung infection and saw a great ID MD. He said that  trying to eradicate the infection would mean hospital stay and perhaps home IV antibiotics. He said that alot of us have infections like these and as long as they do not make us sick it is better to leave them alone. He said if I do get sick that he would admit me directly and begin treatment. For this most recent event he said if I didnt respond quickly to the Avelox that he would admit me. My fever was gone in12 hours.

After saying all of this (I hope at least one or two of you are still with me), I want to begin to pursue a more agressive line of attack that might end with Stem Cell inplant. I am willing to do what ever it takes.I think maybe a lot of you are dealing well enough with your BRX, so I would like to hear from you about how you managing: Diet, exercise, rest, sputum evacuation, medications, seeing your doctor on a regular basis, or what ever else that I might use to stop the large number of infections I am getting. I have had thirteen illness visits in the last year for antibiotics and or steroids.

Thanks for any and all of your thoughts and advise in advance.

Russ

Ok

I am new to this site, and I do not know so much of how i treat myself. I have flu and I think I have first infection. I am coughing and in addition I have so much pain in my chest. My cough is harsh and consist yellow to greenish mucus. I am very worry about my only child and my husband from getting sick too. It is awful feeling. My pulmonologist like to describe so many medications. He scare me whenever I visit him and I think he will kill me from medications' side effects instead. I think you have to keep yourself active and drink so much waters. My friend advice my to eat garlic every eight hours like four pieces a day to strong my immune system. Are taking systamic stroide or through MDI. I am so sorry to feel this way now and I hope you will feel good soon.

That's a lot of infections Russell. Hope it all turns around for you. Have you had your blood checked out to assess your immune system in the last year? I believe it is the CRP count or spomething similar that determines how well your immune system is functioning.

I have an infection every 2 or 3 months (not bad and usually controlled very quickly with antibiotics) but the mere fact that an infection starts counts every bit as much as a bad one in my immunologist's mind. My pulmonologist had previously told me that my immune system was below par but the number of infections I have been getting coupled with a history of worsening CRP count has led my immunologist (referred from my pulmonologist a couple of months ago) to say that my immunodeficiency is close to some tipping point where I might have to have antibody replacement therapy. 

I emphasise that its more than just the number of infections that signals this so don't panic (its not a death sentence anyway!). It's relatively rare I think even among bronchiex sufferers. She mentioned 1 in 25,000 

Russell,

Not sure where you live, but you may want to check out the Lung Insitute 

My mother has Pulmonary Fibrosis and BRX ... she is waiting for approval from them to start her stem cell therapy... if you go to their website get set up to attend one of their webinars ... very informative. I sat through most of one last week.

 

Hiya,

Steve has made a good point took them almost 2 years to find out that it was my Immune System was a big cause of my BX, was on treament once every month for 6 months for 3 hrs per session, so have that looked at it, worked good for me, then knowing that is it, work on anything to brings your Immune System back up I do alot of alternative stuff,as I say anything is worth try.

Best Regards,

Charlie

Hi, Russ,

I went to ID MD when I was first dxd with a non-tuberculosis mycobacteria (NTM) called Gordonae.  She told me that the drugs could make me very sick and she didn't recommend taking the 3 antibiotics that w/b necessary.  Of course I'm there in front of her and not looking sick and not being sick so I have to guess that's why she discouraged me.

Then I went to a Pulmonary doctor at one of the big teaching hospitals who was an expert (over 40 miles away : ) who had worked for National Jewish Health and he specialized in NTM infections.  He also did not recommend anything and he checked my sputum on each visit and had me send him sputum to check and each time it was clear. The strain of NTM I had could have been introduced by the lab and therefore not actually anything to worry about so we just kept doing the sputum tests and I never took an antibiotic.

Then some months or a year possibly later a sputum test came back with Mycobacteria avium complex which is something to be concerned about and be treated for, but again I wasn't sick and as I said on a previous discussion, I went to a natural doctor and they put me on massive doses of Vitamin C for 10 weeks, one appt. per wk.  They tested my sputum at the end of that and it was clear.  I would have done anything to avoid antibiotics.  I'm glad I did that.  Medicare covered it at the time which it does not now but if I got a bad infection now I would go the Vitamin C route and after the IVs are over they put you on a regimen of oral Vit. C and you can drink the powder form so it makes it easier than having to swallow pills or capsules.   It's been years and I haven't had an infection or a fever or an episode of being sick other than pneumonia which I probably got from a germ picked up somewhere.  AND I have to say by this time I had tired of the Vit C routine every day and had stopped taking it and that left me open to the new infection.

It was Xmas 2014 when I had that pneumonia that kept me sick for 3 wks at home, not in hospital, and I coughed every day and every day since and I can't get my breath as easily and I wheeze more (I presume that is called an exacerbation of my COPD) - I have clear sputum most of the time, sometimes pale green and occasionally a large clump of the gray green but it's not like all day and it could be something that is left in a bronchiectasis pocket that was hard to get out, I don't know.   I do know, however, that when my previous Pulm. Dr. was still around he'd put me on Cipro quite a few times (years ago) and each time what I thought was infection with lots of green mucous, always came back BUT since having the Vit. C IVs I have not had an infection at all that I know of.  No fever, no feeling sick and no serious bouts of green mucous.

As far as routine supplements I take lots of things.  I don't know if we can mention them here or not or maybe it's just the brand we can't mention but I take a good multivitamin,

NAC; Co-Q-10, N-Acetyl-L-Carnitine, Alpha Lipoic Acid;  Vitamin D3; 1000 mg Calcium with other minerals, and have also added lately Bromelain which helps with inflammation and Tumeric and 5000 mg a day of powdered Vit. C and also powdered MSM which you can read about - I think it helps the Vit. C or works better with it or something.  But I take it everyday in water.  2 big glasses a day so it doesn't taste strong.  And so far I am guaranteed not to get a cold or get sick.   Maybe it's because I try to eat lots of fruit and veggies also and no processed food if we can help it and drink lots of water and green tea and honey I've read is goods so I'm trying that also.  And now after reading everything on this site I'll be adding some things like nebulizing with saline and other suggestions that work for other people.  (A natural doctor will tell u to stay away from antibiotics because they are not natural and not good for the body - I had a friend who had e-coli who kept getting infection after infection after weeks on antiobiotics and in hospital with IVs too and she just never could get rid of it; it always came back so I told myself there had to be a better healthier way).

My Pulm Dr. expert said what your doctor told u about not having treatment unless it made u sick.  So if it were me and I had fever and not feeling well as u describe and gobs of mucous and green especially, I'd try the Vitamin C IV first.  It can only do u good - it won't hurt you - and could get rid of the bad bacteria and it would be better than going on antibiotics and stay in hospital.  Also for bad infections like it sounds like you are talking about, have you heard of National Jewish Health - I hope I can refer to that here - they are lung specialists in Denver, CO and they have a help line that you can call and talk to a nurse.  That is something I would do myself - in fact I joined a support group for NTMs and that's where I first heard of NJH.  They are online and you can read all about them and people can go out there to be evaluated and treated.  I think I'd do that before going for the stem cells as that is not covered by insurance and the other is.

I read about the stem cell research and a company doing that in Tampa and I even called about it but the girl didn't call me back.  I think when I expressed shock at the price she thought it might be a waste of time;  but Vit. C treatments were far less expensive and worth a try first.  $150 per week or per treatment and I had 10 of them and it would depend on where u had them.  It would be worth making an appt. with a homeopathic or natural doctor to find out what they suggest.  And if YOU are still reading here, I'll just say that I hope something in here helps you.   

Charles thanks for your sharing about the treatment for your immune system. I am not familiar of the treatment you are refering to. Please give a little more info.

Russ

Bela, thanks for your responce, though now I am more concerned about you than myself. I will look into the garlic idea. I hope you can have the good luck to find a doctor that you trust, so that you won't be so fearfull of infecting your family and also so that you feel like you can get better. Is it possible for you to look for a doctor with whom you might feel more comfortable?

Best to you and your family

Russ

Steve thanks for your post so much. My immune system is an area that I didnt think of checking. Next stop immunology. Can you please tell me how active you are? I am having trouble with my normal activity levels. I can go for a few days and then Im wiped out and if not rested enough will get sick.

Such a good lead. Charles mentioned the immune system  connection below. Will get back with you with any questions if your don't mind.

Best

Russ

Hiya Russ,

Sorry to say I'm out of the states now,when I get back I will get the stuff they put in me,know my White blood cell counts where very low,but I;m sure once they see your numbers they will come up with the right formula.

Best

Tabatha, thank you, thank you, thank you.You're have provided a great amount of the imformation and much needed experience that I need right now. And you are  a good writer. Im getting this late and need to get to bed, so will answer you in full tomorrow or Friday.

Thanks a billion,

Russ

Thanks, Terri, I will check it out. Let me know how it goes with your mom.

Russ

Charlie, please let me know  what you treatment was and who provived it for you during those months. How did it affect your activity levels and your daily regeim of care. 

Thanks

Russ

Thanks Charlie.

Tabatha, now that I have had some time to read your email over several times, I am encouraged by the path you have taken and the results that you are now experiencing and sharing with me. What you have learned about he antibiotics use over time is what was coming into focus just in the last couple of month. for me.So thanks for setteling that debate for me. Patients know best when comes to the actually living with the decidely fun illnes .It is so weird, I was a RN for thiry years and had never had any patients with BRX; and for the first seven years after I was diagnosed had no problems with chronic infections or fatigue..Apparently the damage was contnuing as I lived in a dream world. 

I making an appointment with with a Naturopath this week to look at Vit C treatment like you had, vitamin therapy as well as dietary changes. 

I learned about the NJH in Denver last year from a doctor I saw. I have thought about going out to Denver before, but I was attempting to get better here.

I tried  several times on Friday, to call the nurse ay NJH, but was on hold so long ,I decided next week I will have better luck. Maybe it was Good Friday?. 

If you will, tell me a bit more about your experience with the doctor at NJH. How did the experince help get better do you think? 

Also, do you have fatigue? From what you said, it seems that you are actually fairly to very healthy now.

All my best,

Russ

 

Hiya Russ,

The Immune Treatment was a big help from the first treatment I was not as tired,and then knowing that was part of my problem I worked on building my system back up naturally.

My treatment was through the VA and as I said did it for 6 months,as the numbers came back up,

I must say that reading about Azithromycin on this forum, talked to my Doctor to put me on it,that was 2 weeks ago and I must say I see a big change already,coughing a lot less and Mucus has gone down,and have more energy.

Take it Mon./Wed/ Fri. 250 mg seems to be doing something hope it is a good choice we shall see.

Regards,

Charlie

Charlie, good to hear form you. I'm glad you are feeling better. I started on Azithromycin last week also,so giving it some time. Chalie, in your last post you mentioned a treatment that lasted for six months, three hours at a time. Can you tell me what that treatment was? I'm wondering if it was a Vitamin C treatment that Tabatha mentioned below. I have an appointment with a Naturopathic doctor next week.

All my best,

Russ

Hiya Russ,

I just looked up my VA medication and what was listed is called Immune Globulin IV ( GAMUNEX )10GM,hope that helps.

Regards,

Charlie

Thanks Charlie.

Best,

Russ

Hi again Russell,

I've spent most of the day on my response give or take (including some research).  I'm going to reply in two parts so it's not so long. 

Re your 7 yrs with no symptoms: I don't know when mine started so wasn't aware damage was being done either.  They said I could have had it for years. We are probably all different as far as when it started and if there were symptoms.  I had bronchitis a lot and coughing as an adult, so it could have been made worse with that and then a CT scan picked up the BX finally and that was after I'd been dxd with Asthma.  I guess u were lucky you had no symptoms for 7 yrs.  The Lung Assn. website have a good diagram of what BX looks like and I suspect it takes years to develop the thickness of the airway wall.  Until I saw that diagram I wasn't completely aware of what it looked like.

Re your appt with Naturopath and diet etc  :   My Vit. C treatment was less than an hour.  They do a blood test first to see how much you can have before your first appt.   I didn't like having the IV inserted but anxious for the treatment each time.  And I drove a long way to get it.

Re:  my experience with the specialist in infectious disease and bronchiectasis: The reason for going to him was to find out if the Mycobacteria I had had was serious enough to keep doing samples or not and as it turned out he said no because likely it was caused by a lab contaminant. if you feel sick and have the symptoms of 'illness from an infectious disease' then go to the Dr.; and I gathered that if you cough up as much as a cup of sputum every day, it meant something; and he also said to eat lots of protein.  And each visit he'd ask me if I had any of the symptoms of inf. dis. and I guess I didn't. He also favored sputum samples over CT scans, as the latter are so changeable, something can show up one day and not the next time;  sputum is what's important; (I have also heard from another doctor that what sputum you bring up might not have come from deep in your lungs and you might miss something).  Oh, and he tested my immunoglobulins and two were a bit low but it wasn't enough to do anything.  I stopped seeing him as I never got sick.

And I've not been to NJH.  It was recommended to me by my support group for infectious diseases.  I have a description of their visit there given to me by one of the support group but it's two pages long.  If we can exchange addresses somehow I can send to you.  But basically, it described how they treat you with such professionalism and knowledge and you have doctors assigned to you expert in different areas and they help u with diet, exercise, medication, diagnosis etc.   they evaluate and test and teach you -it's very comprehensive and they try to uncover any underlying contributing factors and since you have or had an inf. disease that could be useful for you.  Whether or not the appts for BX are equally as intensive I wouldn't know.  Hopefully you have been able to reach the Nurse line.  But it's all on the NJH website I would think.   I've looked online and there are surgeries for BX - it might help to look that up.   I do lots of research on anything that comes up -  I like the Mayo site or one of the big hospitals, just for an example.

  -- to be continued ---