I get infections pretty often–sometimes 4x/year. An RN friend suggested I may want to consult with an infectious disease specialist to see if we can figure out some strategies for future infections while I’m fighting this current bout of walking pneumonia.
Anyone with experiences with ID docs? Also have chronic health conditions that flare whenever I get an infection, which makes things more urgent and complicated. Used to take Avelox but had a bad reaction over a year ago and have needed to look to other Rx.
My insurer lets me go to whomever I need to see, so I’m very fortunate. Just curious about folks’ experiences. Will ask my other docs too.
I have no idea if this is your issue, but you might want to review this website: http://primaryimmune.org/
A good friend’s 16-year-old daughter has a primary immunodeficiency. She had constant infections until she was diagnosed, and now receives immunoglobulin infusions every three weeks to keep her immunity up.
Yes, one of my MDs (pulmo) just suggested we look into reflux and swallowing once we fix current pneumonia. Would that be a GI to help, rather than ID doc?
The very best doctor I ever had was an infectious disease specialist, who diagnosed my primary immune deficiency. Like veryhappy’s friend, I get IVIG infusions every three weeks because my body doesn’t make any antibodies. No matter what kind of specialist you go to, make sure they’ve checked your ig levels and your t-cell function! It makes me nuts how often doctors miss this.
@VeryHappy, if your friend would like the perspective of someone who has been dealing with this for 20+ years, PM me.
@Himom - if you need to be checked for GERD symptoms, you’d need to see a GI (spoken from the queen of GERD), and yes, reflux can create a breeding ground for respiratory symptoms… without even necessarily causing any heartburn pain issues. Aside from that, what the others are suggesting as far as an ID specialist, I think that would be in the cards for you, too (my only experience with one was when I was hospitalized with sepsis, and I hope I never have to see one again, for many reasons people see ID providers for - but he was good!)
Yes, I did have two reflux studies in the past and had mild reflux. Perhaps it has returned and perhaps I will need to find a new GI (hated the one I fired, who was the only one I saw in HI & has since retired). Maybe my internist will have recommendations when I see him on Friday and Tuesday. I was taking Prilosec 20mg every morning for years and then we agreed I could stop.
Getting old sure isn’t for sissies. I had “silent reflux,” but it was thought it MAY have been worsening my breathing. The breathing hasn’t changed much since I stopped the Prilosec, so not sure if it was really a factor. It may that the oral steroids I just started for the pneumonia inflammation and respiratory issues is increasing reflux as well. Boy, never had thought I’d have all these health issues when I was apparently in excellent health in only 2000!
It’s really weird to always have thought of yourself in excellent health and then be diagnosed out of the blue with a serious chronic progressive health condition. It really knocks the wind out of you and it’s odd–Yes, I’m in EXCELLENT health, BUT…
I’m seeing more docs than my parents combined and have the emails of my docs who write to me from all over the world. It’s not something I would ever have envisioned for myself but when folks see me, they say, I LOOK and SEEM “so healthy.”
I’m not sure what your other chronic condition is, but it was my recurrent infections that led me to going to an Immunologist (not ID specialist though). I had pneumonia at least once every other year, constant sinus infections, upper respiratory infections, and so on. The Immunologist ran a bunch of tests and found that I had autoimmune antibodies. (This lead to a Rheumatologist and I have since been diagnosed with Lupus and Rheumatoid Arthritis.) It’s counter-intuitive but my immune system is OVER active which led to infections because my body attacks me rather than the infection.
It’s just a thought if one of your chronic conditions is an autoimmune disorder.
Thanks everyone! I am considered a complicated patient because my infections are frequent and can take quite a while to clear up. I am fortunate to have a very caring and skilled medical team, but it is complicated keeping us all together, and of course things change over time. They have done a lot of tests on me over time but so far, have not been found to have any auto-immune issues. One of my docs is an excellent allergist who has run batteries of blood tests on my kids, who also have some interesting chronic health issues and D continues to be under the care of an infectious disease specialist.
Have they checked your igG levels and other ig levels? When they finally got around to checking mine, they were 0 (undetectable). It is worth considering.
That’s a different test than the tests for autoimmune disorders.
I wish I could get away with that. I take 40 mg. of Nexium in the AM and PM, and still have to be very careful about eating too late in the evening and even more careful about chocolate. Almost two years ago, we bought a bed with an adjustable split head (so H can control his side and I can control mine). I go to sleep with the head raised about 45° every night. Whenever I wake up (which is usually sometime between 2-4) for the first time, I grab my remote and lower the head to an almost flat position. Our community lost power last night (am not sure why yet), so when I woke up around 3AM and couldn’t lower the head of the bed, I had to move out to the couch so I could lay down completely. But I’ve had to learn to play lots of games to minimize my breakthrough symptoms even with the high dosages of Nexium I’m on (and yes, before anyone says anything, I am all too aware of the risks of being on these types of medicines long term and am doing my best to counter those risks).
As someone mentioned above, some ENTs are very comfortable treating GERD. While I liked my ENT (he retired), I didn’t think he was as qualified as my GI to do so. Have you been checked for H. pylori?
Huh- I never thought about an ENT for my GERD. But it’s well controlled by 40 mg of Omeprazole (Prilosec). Something to keep in mind for the future (as I’m not a big fan of my GI doc…).
I’ve worked with some great ID MD’s (although I’m sure there are some D.O’s) who were also recent internal med/hospitalists they really were great at seeing the whole patient. They are really good at streamlining antibiotics. FYI they also will try to decrease use of PPI’s ( Prilosec protonic etc)
For those of us who are struggling with reflux, the best thing I did was to reduce portion sizes, followed by drinking a mug of Yogi Ginger Tea (which I buy by the case on Amazon) after dinner every evening. Have been able to taper off Prilosec with the help of Pepcid and tums and am finally off medication… I did have nasty side efffects of low iron and B vitamins on the Prilosec. Don’t want to derail the thread,but ginger tea has helped SO MUCH!
Had breakfast with MD/RN friends. They urged me again to consult with their ID friend, just to see if he has some insights he can add. Seems little downside, so will likely do it. I am NOT enjoying all the medical coordination, but sometimes fresh eyes can be helpful.
HIMom, yes, a fresh pair of eyes can notice something that a regular doc had been missing! Mr. went for a routine colonoscopy and a follow up appointment, and the GE doc noticed that Mr.'s BP readings at both appointments were very high. The GE called Mr. and said that while there was nothing wrong with his guts, he was concerned about the BP. Fast forward, the family doc reviewed the charts and smacked himself on the forehead. Duh!