Question: I was diagnosed with Wegener's (granulomatosis with polyangitis) disease based on high myeloperoxidase antibodies and high proteinase-3 antibodies. What is Wegener's disease and how is it treated? My main symptoms are chronic, severe breathing problems (doctors other than Dr. XXXXXXX Rynne please).

Hi and thank you Dr. Naval,

I'm not sure at this moment how to upload labs but I can see if I can get some assistance doing so. As to your questions:

My providers think I have mast cell activation disorder incurred from repeated toxic mold exposures - toxic mold commonly causing mast cell activation disorder - but they are coding it as idiopathic anaphylaxis in the absence of clinical confirmation of MCAD via labwork so far. I have to carry epipens with me everywhere because I allergically react to the point of anaphylaxis to chemicals, mold, smoke of all kinds, hot temperatures, cold temperatures, foods, scented products, etc. - a condition that is also sometimes loosely called MCS - Multiple Chemical Sensitivity (keeping in my sensitivities can result in anaphylaxis). Symptomatically this expresses principally as severe breathing difficulty and chest tightness, but can also express as GI distress, throat swelling, a feeling of flushing in my head, and other symptoms. My body is functioning in a hypo sense in many ways - I have bradycardia (though full cardiology workup shows heart is healthy), hypotension (blood pressure usually around 80/50-60), body temperatures usually around 95-96 F per oral thermometers but sometimes as low as 91 F (using quality basal thermometers), and hypoglycemia.

Recent non-contrast CT scan of chest did not show any abnormalities. CRP and sed rate labs normal. CBC and other standard labs not showing abnormalities with exception of elevated eosinophils (523 cells/uL on a 15-500 cells/uL range). Vitamin D levels always around high twenties ng/mL on a 30-100 ng/mL reference range per Vitamin D 25-Hydroxy total serum labs. IgE blood tests from my allergist/immunologist diagnosing me with Wegener's disease show highly elevated antibodies to environmental molds. I also have environmental labwork from houses contaminated with toxic mold I have lived in that I have been forced to emergency evacuate, and this labwork shows toxic/toxigenic mold fungi types which correspond to the mold mycotoxin types in my urine, the levels of which are above toxicity thresholds.

Is any of that information helpful as regards your questions?

Thank you so much for any insights here.

Thank you for your insights here Dr. Naval!

Are you saying that normal ESR, CRP and chest CT rule out Wegener's disease? Recent ESR and CRP labs were clinically normal, as well as a recent non-contrast chest CT.

Looks like recent XXXXXXX lab was per IFA method.

Alternative options to Danazol and other steroids would have to be found long-term for suppressing inflammation because I have multiple, chronic infectious diseases. I would love to hear any ideas you may have on such alternatives.

Thank you and regards to you from XXXXXXX

XXXX

Dr. Naval no trouble at all. I hope you had a restorative sleep and that the new day on the opposite side of the world from me is starting out favorably for you.

I have had a long history of chronic infection with babesiosis, bartonellosis, and borrelia burgdorferi which has consumed the last decade of my life. I have also been diagnosed, as mentioned, with mycotoxicosis on the basis of mycotoxin levels that have been above toxicity thresholds for years - though no tests have been done yet assessing whether there are significant levels of endogenous pathogenic fungi producing these mycotoxins, or whether they came from exogenous sources like the houses contaminated with toxic mold which I have lived in.

The steroids were nasal steroids prescribed by my immunologist to treat my severe trouble breathing, which he believes is due to an overactive immune system from the extreme allergies I have to mold and other contaminants in my house. He refers to my trouble breathing as mild, persistent asthma - though the breathing trouble I have had has been as far from mild as it gets, and this assessment of his was per a pulmonary function test performed in his office when I was breathing exceedingly far easier than I normally able to. The immunologist was asserting that steroidal inhalants do not have a systemic immunosuppressive effect like oral steroids do, especially if kept under around 160 mcg, and that such immunosuppression is limited locally to the lungs and oral cavity. The infectious disease and mycotoxicosis specialists have expressed concern with immunosuppression even on local levels. If you have any thoughts from an outside rheumatology perspective - whether on steroid alternatives for calming inflammation and over-active immune systems or on anything else - I would be gratefully obliged to hear such.

Regards and respects from XXXXXXX

XXXX

Dr. Naval my grateful thanks for the helpful conversation. :)

While my severe allergic reactions sometimes involve multiple body systems and hence qualify as anaphylaxis, they are almost always limited to asthma and severe breathing problems. Are you saying that using 3 different types of H1 blockers daily plus sometimes also Montelukast is sometimes used in patients with chronic allergies?

I think the appeal to my immunologist in wanting to use steroids is that he believes I am dealing with an inflammatory and autoimmune condition. Repeated toxic mold exposures and mycotoxicosis is what originally caused severe sensitization in me to all these sundry antigens, and mycotoxicosis is definitely an inflammation-driven condition. With respect to potential GPA or other vasculitis, in mycotoxicosis patients you have uncontrolled runaway cytokines creating vascular blockages and inflammation when endothelial cells attach to receptor sites on the cytokines. When this happens in a healthy person the body produces vascular endothelial growth factor (VEGF) to promote angiogenesis to circumvent the blockage. But in mycotoxicosis patients not only do the cytokines cause the vascular blockage and vasculitis but they also directly suppress VEGF production. This results in hypoxic problems downstream from the blockage and organ damage or failure if the situation is not reversed, whether it's kidneys in GPA patients or whatever other organs... So if there are autoimmune and inflammatory processes at work, I want to address this, but in a way that doesn't suppress immunity and exacerbate infection and cytokine cascade.

On an earlier note, you had mentioned Churg Strauss syndrome. I have had a long history of eosinophilia, and a more recent history of airway hypersensitivity, both of which I noticed can be features of Churg Strauss.

Regards and respects from XXXXXXX

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