My inflammation journey & routine

Someone had some questions for me related to my history with inflammation and bleeding and what I do. I have passed some of this on to others here and there so decided to post it. Of course I am in NO way saying this is a great idea or appropriate for me let alone anyone else ;-)

In a nutshell my old clinic said bleeding=infection=IV's and despite often not feeling sick when I would have a bleed since you can't do PFT's I couldn’t 'prove' them wrong. It was only after having a bleed within a week after a clean out and awesome PFT's that I got a 'hmm' maybe your right sort of thing but it was also countered with a ‘there can still be infection in the small airways’. This bleed that was immediately following my best PFT’s ever (at that time) and a pro-active clean out was also when I was doing IVF and was at the point where my estrogen sky-rocketed which in my mind ‘sealed the deal’ on my hormone suspicions. Then I didn’t bleed for 2+years when I was pregnant or breastfeeding further confirming my suspicions.

I have mentioned I had a bleed the first ‘real’ period I had after weaning. Once it restarted again I was confident it was inflammation and hormone related. I think my body can handle some inflammation, some dry air, some cold flu, some hormones but for me when you put them all together I get in trouble. So mine always seems to be feb/mar. Not that I never bleed other times but its almost a ‘guarantee’ in feb/mar. For me that’s when I've had a season full cold/flu seaon that I for the most part get over and the houses/buildings here in michigan are all really dry.
Now that I am more in tune with listening to my body I can feel the inflammation start to come on. I know my progression will be a sore back (different than actual back pain it’s a muscle thing), then I will get some pleural pain, maybe some shortness breath, sometimes I get pain when I am twisted a certain way and breathe (like compressed lung area?), decreased mucous production, then streaking or bleeding.

I left my old clinic over this. My new clinic did a lot to confirm my theory. They said they DO have some patients that seem to have inflammation playing a bigger role for them than infection. They said some patients get to where they can tell if they need antibiotics, steroids, or both.

They wanted to rule everything else out since there is no real way to 'test' what I was saying/explaining. Since I had just gotten of two courses of antibiotics totaling 5 weeks IV's within 2 months with 4 different meds the need for IV’s was ruled out. They did some extra blood tests for things related to aspergillus and ABPA complications among others which all came back clean. Then we did a bronch to make sure there was nothing atypical seen nor any bugs obtained that were hiding out deeper in the lungs and not coming up on sputum cultures. As a side note we did not explore my allergies because I was already being treated extensively for them and they were well under control (see below) I would highly recommend doing this as part of a ‘work up’. Oh and I also went to have an endoscopy to make sure my acid reflux was under control and not affecting things.

The only thing noteworthy on my bronch was the exclusion of mucous. My lungs looked a bit ‘pinker’ in some areas but still within a wide range of normal. There was very, very, little mucous which was a big part of what I had explained to the doctor, this was even less than I had EVER experienced and this was the worst inflammation/pleural pain issue I had ever had (note: mine never got extreme like I have read of others needing IV pain meds etc mine was bad enough to make me stop walking/breathing but 800mg ibuprofen would usually help it out). SO since we had ruled everything else out we decided to treat with steroids for two weeks and play it by ear. After ~9th day I started feeling ‘opened up’ and having mucous and movement, I called and asked for a 3rd week which we did. My PFT’s improved, streaking stopped, pleural pain stopped. I decided to hold my breath and not applaud too much lest I get a rebound infection or something.

I did not get an infection of any sort and last year feb/mar when I felt my normal pattern emerging I caught it early and went on two weeks of steroids---not IV’s. For the first time ever in feb/mar I did not have hemoptysis land me in hospital and on IV’s. As a matter of fact its been >2 years since IV’s now and I never normally made it a year. I have also been on orals only twice and both were somewhat precautionary before I was ‘really’ sick. Normally I was on IV’s 1-2 a year and orals another 2-3 times. The best benefit of all has been that my PFT’s have BIG TIME improved. I need to pull my actual PFT’s but I was getting huge variance before I left my clinic right after that 5 week cumulative IV course even within my 3 blows I was ranging from 86-95. I could tell there was a problem simply because of my variance which was very atypical for me. This year my most recent PFT’s Oct09 when ‘sick’ were FEV1 100 and FEV25-75% of 99 and earlier this year in the summer my ‘good’ time I hit an FEV1 of 108% which I have NEVER seen!

I truly believe there will be times when I need IV’s and times when I need steroids and times when I need both. I am also very pleased to have seen my sensitivities start to come back to levaquin among others.

You asked about my attempts to reduce inflammation. I think there is a HUGE key in what we eat and I would love to go to completely unprocessed foods I think it can make a huge difference, I can feel it even when I have done it for just short amounts of time and the research is out there to support it. I however at this point just can’t commit to that. I also think there is a lot value in some supplement, because I have been either pregnant, breastfeeding, or trying to get pregnant for past 3-4 years I have not done my research in this field.

What I have done is eliminated cleaning products from my house as well as fragrances. I still use scented hygiene products perhaps when money is less of an issue I will revisit this. I wrote multiple posts about greener cleaning, you can read 1st one here: http://cftoo.blogspot.com/2009/02/green-cleaning-experiment.html
I treat my allergies which I think is huge. In addition to my medicines (below) I take xolair to bind IGE and allergy shots. I also invested in one of THESE puppies http://cftoo.blogspot.com/2009/06/air-purifiers.html and love it so much I am prepared to buy a second soon, after we save some money for it. I also bought the other one to kill mold that is left in my basement and we have invested in new gutters in addition to our dehumidifier to prevent leakage dampness in the nice Michigan basement we have.

My medicines:
Allegra, xopenex, singulair, prevacid 30mg2x/day, astelin, Nasacort, pulmozyme 2 vials, TOBI, 7%HTS, advair HFA 230/21,

My vitamins: 1000mg VitC 2x day, prenatal+fishoil, calcium+D 600mg 2x/day, B complex, Magnesium and probiotics (I take occasionally and then every day after antibiotics)

I do respirtech vest 30 minutes twice a day. I TRY to do cardio 30 minutes 4 times a week. I rinse my sinus’s with Neil med though not religiously unless I am sick, cold, flu, stuff---trying to improve to every morning.
I really can’t think of anything else but let me know if I can answer any other questions.