Atopy topic

Best alliteration ever. ...moving on.

I have finally been diagnosed with an immunodeficiency disorder called atopy. The term atopy refers to a complex disorder characterized by chronic sinusitis, asthma and eczema, but it leads to multiple severe allergies to everyday exposures, such as (my list): dust, shellfish, eggs, milk (all components), sulfa preservatives, and latex. I also have two severe innate (born with) allergies to salicylates and sulfites. If you're curious about the list (which includes coffee, tea, chocolate and red wine), here's a link:

http://my.clevelandclinic.org/health/diseases_conditions/hic_Allergy_Overview/hic_Food_Allergies/hic_Special_Diets_For_Food_Allergies

This diagnosis is what Dr. Drew tactlessly calls a "garbage bag diagnosis." Basically, it's any condition with an unknown etiology (cause) and no effective treatment plan or cure. I now have three of those conditions: endometriosis (innate), atopy (innate), and neuropathy from an injury in the Army.

However, atopy does have apparent distinct diagnostic markers, and a bleak prognosis. Untreated, atopy mimics IBS, ulcerative colitis or celiac disease. GI problems that are presumably caused by severe food allergies and, hence, atopy, are usually tagged "irritable bowel syndrome." And, admittedly, doxicycline, an IBS treatment, is helping quell some of my GI symptoms. Getting rid of inflammation in any part of my body is super important for decreasing the likelihood of further complications. Additionally, because rheumatoid arthritis and fibromyalgia run in my family, I have a high risk of developing lupus or rheumatoid arthritis, which are related genetically, or fibro.

Treating inflammation in atopy is especially difficult, because many people with atopy have a rare, innate allergy to salicylate and sulfate/sulfites. This means I'm allergic to aspirin, ibuprofen, aleve, and all related drugs. The only OTC pain killer I can take is Tylenol/acetaminophen, and it doesn't adequately treat anything other than fevers.

Additionally, I'm on multiple antihistamines (allergy meds) and inhaled corticosteroids (allergy/asthma meds) in order to try to decrease the number of chronic upper respiratory infections. I currently have a mild case of pneumonia. I can't sleep, because I can't lay down or my chest aches and I can't breathe.

But, I'd like to finish with the good things:
1) I have a diagnosis. This is extremely important, because it validates my description of my disorder.
2) My primary care physician and allergist are working to try to find a combination of inhaled corticosteroids to help manage my disorder.
3) I met an amazing nurse practitioner who prescribed me ponaris (eucalyptus oil), which helps heal the endothelial (mucus) lining of my respiratory system.
4) Dicyclomine works wonders for my GI symptoms (but doesn't treat any of the allergies).
5) I have an amazing research project - which you can check out at experiment.com/canyouhearthat.

I hope you are well!