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

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

Wednesday, January 20, 2016

Allergist says my nasal passages are "incredibly inflamed."

I've been writing about my efforts to understand my shortness of breath (SOB) and post nasal drip (PND), which always wax and wane together.  I had recently come to the conclusion that both symptoms are caused by inflammatory cytokines.  This would essentially mean that there is nothing I can do about the SOB/PND except for the usual, marginally effective measures: paleo diet, immune modulating supplements and (sometimes) drugs, lifestyle management.  These of course never make the problem go away, they simply make the problem more manageable.

My pulmonologist recommended that I see an allergist as a last resort.  I made an appointment with the allergist but nearly cancelled after wondering: what's the point?  In the end, I decided to keep the appointment.  My reasoning was: if the allergist can identify even one environmental trigger (such as, for instance, dust), then there's one more piece of information I can use to help reduce incidents of runaway inflammation.  It certainly won't solve all my problems, but it would be one more small piece of the puzzle.

The allergist I visited yesterday (Dr. L) was very impressive.  You know that feeling when you meet with one of those rare doctors who seems equally as invested in your health mystery as you? That's a good feeling.  She's been practicing for less than five years.  Sometimes I find that the younger doctors, while less experienced, are the best because they finished medical school more recently.  Medical knowledge is evolving so rapidly that doctors who have been practicing more than about 15 years are often clueless about chronic complex conditions.  Plus, younger doctors haven't yet been worn down by years and years of listening to people complain (can you imagine?). They still have some empathy left to give.  I don't mean this to sound age-ist.  There are some wonderful older doctors too.

Dr. L spent about a half an hour with me.  She said my nasal passages were "incredibly inflamed." Her preliminary theory is that the inflammation (the cause of which is still to be determined) is producing mucous, which in turn drips down my throat and causes the SOB.  I'm not so sure about the mucous being the cause of the SOB (highly questionable), but at least she's the first doctor who has attempted to tie the two symptoms together.  Because, to me, they are clearly related.

I'm supposed to come back for a "scratch test" next week.  I hope this test will explain why I seem to react to my car.

6 comments:

  1. It never ceases to amaze me how much of parallel my story has to yours!! I remember well when an ENT put that probe up my nose and down my throat basically had the same reaction! He was very much surprised by how red and inflamed it was and that was actually shortly after the onset of my CFS and about a month before the post nasal drip started. Countless allergy tests revealed nothing of substance. I hope you can find something. Thanks again for sharing your story.

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    1. I too like reading about others patients experiences that are similar to mine. I'm of course sad when another person is dealing with this disease too, but it's just nice to know that I'm not alone. I know exactly what you mean.

      Well, I'll prepare myself mentally for the allergy tests to come back negative. Thanks for sharing your experience.

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  2. If you get a chance, read into "SymbioFlor 1" for Nasal issues. A fairly cheap and well known Probiotic (in liquid form) that is quite effective in helping Nasal/Sinus issues.

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  3. Same type of deal with myself. Patrick if you have a total IgE done I am sure it will come back elevated - this points to Th2 polarisation, which Dr C talks about.

    However immunotherapy (allergy injections) hardly helped myself even after years and years... you should be more prepared for that if anything.

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  4. Hi, this is a great blog! I just wanted to say your symptoms sound like LPR, a type of GERD, or reflux. Unlike regular GERD, with LPR it's stomach acid vapor that comes up, past the LES (lower esophageal sphincter) and it burns the throat, the larynx, sometimes the entire lining of the mouth, makes the tongue feel inflamed, it irritates the lungs when breathing it in and out all day and night... AND it makes the sinuses incredibly inflamed. This leads to PND, the mucous collects in the lungs and causes SOB.

    How to fix this? Do not take PPIs because they weaken stomach acid and can lead to increased malabsorption of nutrients from food, and it can make us vulnerable to gut infections from food-borne bacteria. The best approach is to take herbal antimicrobials, such as allicin (a garlic extract that kills candida plus bacteria, but seemingly spares many of the beneficial flora strains), peppermint oil, oil of oregano, pau d'arco, etc. Killing off upper gut flora (you may have SIBO (small intestinal bacterial overgrowth)) can heal constipation, which is the "backing up" of the GI tract that causes your LPR, most likely. Hope this will help you narrow down the cause of your ME. Quite a few of us find our fatigue improves when LPR and constipation are fixed. Keep in mind if you are constipated, over time it can lead to kidney disease, so it's worth correcting it soon, if that's your issue.

    I am Terry Chattsworth on Facebook if you'd like to get in touch. All the best!

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