Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, November 12, 2015

My Plan to "Solve" My Respiratory Problems

At the end of my last post, I wrote that I'd finally decided my shortness of breath wasn't going to go away on it's own.  Clearly, I'm going to have to do something about it.  As a brief review, I've been experiencing very bad shortness of breath for approximately 4 months.  It comes and goes, but it's there more than 50% of the time.  It is always accompanied by post-nasal drip, and occasionally, when it's at its worst, I experience numbness and tingling in my nose, hands, and feet.  I have not been able to determine anything that consistently triggers it.  It often seems to arise or worsen when I'm in my car, but not always.  Many times I can drive my car and be perfectly fine.  Stimulants such as coffee or tea also seem to to trigger it, but again, not always.

My Lyme literate medical doctor (LLMD) thinks this will all be explained when I get a positive Babesia diagnosis--something she seems certain is inevitable.  I gave a blood sample yesterday, which is being sent to the IGenix lab (supposedly the gold standard in Lyme and Babesia testing). Frankly, I don't think I'm dealing with a Lyme or Babesia.  It would be difficult to explain all of the reasons why I feel this way, so I'll save it for another post.  Nonetheless, I want to fully explore those possibilities and hopefully rule them out once and for all.  I receive the results of the IGenix tests in early December. 

In the meantime, I visited my primary care physician (Dr. L). and told her about the shortness of breath and related problems.  She first tried a nebulizer containing essentially the same medicine as an asthma rescue inhaler.  No improvement.  Next, she sent me for an X-ray.  I knew this would be pointless, but sometimes you have to let your doctor work through their mental "flow chart" until you can get to more fruitful diagnostic testing.  

Next, Dr. L is sending me to a pulmonologist.  I think this will again be pointless.  I saw a pulmonologist during my acute phase about 4 years ago.  I was having shortness of breath at that time too, although not as bad as now.  He gave me a spirograph test and a treadmill exercise test.  I passed both tests just fine.  If I pass again this time, I'd really like to see an allergist as my next appointment. Given that the shortness of breath always comes with post-nasal drip, it doesn't seem likely that I have a lung problem alone. It seems more likely that something is causing inflammation throughout my entire respiratory system, from the nasal passages to the lungs. This would be more in an allergist's wheelhouse--or so I figure.    

Not content to leave everything up to my doctors alone, I tried a few experiments to see if I could treat the problem on my own.  I have a few prescription steroids and oral anti-inflammatories in my medicine cabinet.  So here's a list of things that had absolutely NO noticeable affect:

1.  Oral Prednisone, 5 mg 
2.  Vicodin 5mg/300mg
3.  Azelastine Rx nasal spray
4.  Flonase OTC nasal spray
5.  Breathe Easy Herbal Tea (yes, I tried this. I was desperate!)
6.  Fresh air (possibly more experimentation is needed here - can't completely rule this out.)

At this point, I'm starting to get worried that I'm running out of possibilities.  Shortness of breath is one symptom I really don't want to "just live with."  This is crazy!  With all of the diagnostic technology available to doctors today, how can they not figure this out?  


  1. Hi, is there a way to email you privately?

    1. sorry for the long delay in responding to this. If you still would like to tell me something, I'd love to hear it. My email is QuixoticMEblog at gmail dot com. I don't get a chance to check that address very often, so I apologize if there is a delay before I respond.

  2. You could ask your primary care doctor about Cromolyn (nebulized) - it's a mast cell stabilizer.

  3. Its called air hunger.
    I get it also.
    Its come and goes. Its more like air starvation or a deep gasp for a satisfying breath.
    Doesnt show up on a breath test.
    Comes up a highly anxious th2 response.

    Email me.
    Best regards
    Fellow tortured cfs soul

  4. Please don't waste your time with Pulmonologist or any other doctor for that matter on this issue.. I've already been down that path and seen close to a dozen. All gave me pointless tests without ever coming up with a diagnosis or anything useful.

    1. You were correct, it did not lead anywhere... Ah well...

  5. Have you tried antihistamines? A daily Zyrtec maybe? How's your gut? I sometimes get SOB because my bowel triggers a vagus nerve thing. Last idea: something you're eating or a smell you're exposed to?