Advice Needed - Test result. IgE 1142, precipitin positive, other severe illnesses, no treatment?

Hello,

Apologies in advance for the length of this post!

As per my title, I would greatly appreciate some informed advice regarding a test result. Read extensively on aspergillus and my other medical conditions, but what I have read seems to contradict with the advice I am receiving from my GP + respiratory specialist.

Background

Diagnosed with Bilateral upper lobe emphysema (gold stage 2) and psoriatic arthropathy. Main medications are Qvar inhaler, Spiriva inhaler, and immunosuppressants (Methotrexate (low dose) and Enbrel) for psoriatic arthropathy, and painkillers / creams for psoriasis. Conditions have been stable for years.

Last few years have been getting more frequent cold / flu like symptoms, that have been lasting longer and longer. Prescribed antibiotics when needed, but am reluctant.

April 2015

Prescribed antibiotics due to cold that wouldn't shift, very sore throat and periods of insomnia.

May 2015

2 day hospitalisation (my 1st ever) due to waking up incredibly short of breath, feverish, lightheaded, trouble concentrating, generally feeling drunk / drugged up, incredibly sore throat, aches, headache. Put on antibiotics drip and prescribed another course after release.

May-July 2015

Had very severe oral thrush (took a quite to be diagnosed), unable to eat any solids for 2 months (I hate chicken soup now, but lost 2 stone!), and took ages to clear up with Nystatin (no oral anti fungals due to complications with methotrexate).

Multiple tests discovered Vitamin D deficiency (12, now over 70 often intense course, most likely due to lack of sunlight), a positive aspergillus sputum microbiology (but below some threshold, apologies for not having the exact figure) and a negative one.

July 2015

Blood test report from respiratory department - IGE 1142, Aspergillus specific RAST negative, Precipitin positive. Examination of a CT scan from mid 2014 showed no evidence of bronchiectasis, so APBA inconclusive. No follow-up scans or tests other than standard X-ray for emphysema.

October 2015

Prescribed Mometasone Furoate for suspected Sinus problem, 2 months usage and no improvement.

July - Present day

Not much has changed, other than ability to eat nice food again, which is great for Xmas :) Generally feel permanently under the weather, mild fever symptoms, mild insomnia, mild headaches, difficulty concentrating a lot of the time, fatigue and apathy to my activities prior to may, occasional night sweats (enough to wake me up), pressure and sore eyes, hot / numb face, pain in ears and around area area, muscle aches (cramp in legs and severe neck ache mainly) and many other niggles too minor to mention . Started getting Tinnitus in my left ear in May, which has now become permanent and is ragingly loud (making insomnia worse). Psoriasis has gotten worse (probably stress) and spread to arms / legs and started getting eczema on my face (nose and cheeks, which I've never had before on my face despite having Psoriasis for 15 years).

Started squirting a saline solution up each nostril every day and sinus symptoms seem to be getting slightly better (tinnitus definitely has improved, which is fantastic as it was SO loud constantly), and nasal drip has started. Still, have a few hours feeling somewhat ok now and then, and then start feeling like crap again.

GP and Respiratory specialist pretty much say IGE 1142 is not something to be concerned about and has no symptoms, and are reluctant to repeat IgE or perform a IgG test. Got another pot for sputum test for after xmas. GP assumes many of my symptoms are stress related (which is a factor, especially from May to July, but am much more relaxed now with little improvement).

Conclusion

From my persistent symptoms I'm currently guessing I've some kind of Sinus problem (which saline solution helps, but only short term), and have an MRI IAM booked for next year (precautionary due to tinnitus is left ear only, though now left ear is quieter I'm noticing it in right, but much less loud).

Given that I have ALL the symptoms of an allergic reaction (including the racoon eyes!), I am pleading for some quality advice regarding my IGE score, and whether action / further investigation is warranted before it turns into a serious problem (especially with my other serious conditions) like APBA (or has already but undiagnosed). Been wondering whether aspergillus, fungal, allergic (has no tests) or antibody reaction is causing my sinus problems, or possibly AAS / AFS, or it's unrelated, or whether the information I've read / my interpretation is wrong and I should look for causes not related to IgE or aspergillus. Help please :)

Heartfelt thanks in advance for reading this essay, and can provide further information (I get sent all of my GP + hospital letters).

Merry Christmas everyone and a happy new year.

6 Replies

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  • For lack of finding an edit button, probably should add that I'm 39, and fully committed to making lifestyle changes due to my medical conditions (quit smoking and alcohol immediately when diagnosed 8 years ago, and boy did I love both!).

  • Should also most likely add I have bi-apical bulla and have had a productive cough of thick sticky mucus daily for many years (generally yellow globs, sometimes brown streaked).

    To also clarify, it was positive aspergillus precipitins (not sure if there are other types).

  • I'm guessing this forum is deserted and not checked anymore by the administrators.

    Shame.

    Just as a correction after re-reading as accurate is very important, daily productive cough is thick mucus, mainly white, something bright white and frothy (comes and goes in sessions), rarely yellow globs, and very rarely brown streaked.

    Also, while my post sounds dismissive of my GP, I realise how difficult a job they have, and he's been very supportive and advised me to contact the National Aspergillosis Centre in Manchester either directly or by letter headed by the practice. Thought I'd take the direct approach via this forum.

  • Hi Advice needed

    Sorry for the slow response over the holiday period - we are shut down by the University making work difficult until this week.

    There may well be some investigations that the National Aspergillosis Centre (NAC) could do to help rule in/out fungal infection. For example we can look at fungal-specific IgE testing. An IgE test >1000U/L (assuming those are the units you are quoting) may suggest you are allergic to something but not as yet what you are allergic to. Positive test to precipitins may suggest an infection too.

    I would encourage you to take up the offer of a referral to NAC - we are closely allied to the North West Lung Centre too so complex lung & sinus cases are well within our scope.

  • Thanks for the response, looks like I was too hasty in my judgement on this forums activity.

    Sadly it's not a referral, after doing research myself and finding the NAC, I asked if my GP could contact them regarding my concerns on my IgE and he advised me to do it myself. Unfortunately he's quite dismissive of the IgE having any relevance (it doesn't mention the measurement on the letter from the hospital, just Raised IGE - 1142, and another letter from them to my GP to monitor it) and is reluctant to discuss the matter.

    Also, given that I live in the SE of England it's quite a journey, especially as I don't drive anymore.

    Chased up the ENT department given that an MRI IAM is most likely going to be of no relevance, waiting back for a CT scan appointment.

    Also, my difficult concentrating, apathy, night sweats / insomnia (bad the last 3 nights in a row, soaked, comes and goes in sessions) and general feeling of not being myself (drugged up feeling almost permanently) makes being assertive a major pain often.

    Shame, as my GP has been really great and supportive up to now.

  • Your respiratory consultant should refer you. I go to the NAC regularly now and would crawl there from West Wales if I had to. They are the only people who have listened to me and give as much time as needed. My husband and I share the driving - 6 + hours each way and we stay the night at a Premier Inn or Travel Lodge close by for a night. We stay there because their beds are comfortable for my husband who has chronic back and neck problems. I would sell my soul to afford to do this. I am now down to a 10 weekly visit which may be coming down to a 12 weekly visit. I do hope you manage to get a referral and can manage to travel as it will definitely be worth it.

    Sian