Help with understanding test results

@windyshores Thanks ever so much for clarifying the note on the report -that does make much more sense and helps to ease the tension. This is a is a triggering experience for me as I fear being given the wrong dx and medicines (again).

I appreciate the info about your cousin. If it is IgE's?....my eosinophils are off the chart high. I googled and:
"High IgE levels can indicate an allergic reaction to a specific substance, such as food, pollen, animal dander, or insect venom. High IgE levels can also be caused by chronic infections, inflammatory diseases, immunodeficiency disorders, or certain cancers. "
The next may apply to your cousin being deficit:
"Low IgE levels can indicate a rare immunodeficiency condition called hyper IgE syndrome, characterized by recurrent skin and lung infections, eczema, and bone abnormalities. Low IgE levels can also be associated with chronic fatigue, asthma, autoimmune diseases, chronic sinusitis, otitis media, and certain infections. "

Thankyou for sharing that you have systemic Lupus and antibodies for scleroderma (without symptoms). I would like to know how sick the sun makes you, if possible. I too have avoided the sun for ages but can't remember how sick it made me. I get migraines from the sun (only during the changes in seasons) and have to wear sunglasses in the house during the solstice's. Weird.

Anyways, I will go to the Rheumatologist and bring documented info about my allergies also and trust he can advise me. (fingers-crossed)
Thanks again- will let you know the outcome.

Ps I think I just figured out why the sun is worst for me during the solstices-it may be because of the sun's angle and more enters my windows at those times.

@elisabeth007 I will be sure to let you know.
I am stymied by the cross-over between allergy/immunology, pulmonology and Rheumatology. Antidotally, I come from a long line of ancestors with asthma/allergies who were also "slow-moving". I attributed my lack of stamina to my grandmother (whom I resemble) until it got to the point of ridiculous (doing one thing daily became a challenge) I just went to a prim care doc expecting low Vit B12 and instead, markers for immune disease were flagged. Well, that could explain a lot! I'm now considering my grandma could have had autoimmune system disease before it was even known about. I have a pulmonologist, ENT. and dermatologist; I need an allergist/immunologist. I'll let you know what happens with the Rheumatologist, but (right or wrong) I expect to be shuttled off to an allergist (or loony bin).

Very innformative - its a great day when I learn something new 😁

@rebaba I also may have eosinophilic esophagitis and with your eosinophil count, that might be something to look into. I am sensitive to many foods, medicines and environmental things (rugs, paint, laminate flooring, scents, cleaning products etc.). It creates lung pain and shortness of breath, headache, odd sensations etc.

In the sun around this time of year: the sun actually feels like it is burning my skin in the moment. The next day I wake up with diarrhea, headache, lung pain, dizziness, tingling, fluish in a way that is hard to describe.

You may be right about my cousin with the possibility of IgE. I'll ask her!

Many of these ailments have no clear answer or diagnosis. I am actually lucky to have a diagnosis. I also go to an integrative medicine doctor because I cannot tolerate steroids (afib) or Plaquenil (after years it affected my eyes). I am trying Curcumin as a first step as well as liposomal glutathione. CBD made me dizzy. I have one more thing to add for inflammation. I also take magnesium.

@windyshores Read about the eosinophilic esophagitis and it sounds like no fun! I don't think I have environmental, food or medicine allergies-last testing showed stuff like Gherman cockroaches, cedar, etc.. A pulmonologist described it as more of an "overreactive immune system" problem, but nothing more exact.

Thanks for providing the description of how sunlight affects you so poorly. I've been covering up, for so long, anytime I go out in the summer, that I can't honestly recall the "after-effects"-just know it's bad and that beaches (and boats) are to be avoided at all costs). It is embarrassing because I feel like a bat or vampire.

I am going to check into getting an integrative medicine doctor. I really don't want to take any more prednisone!!! One ENT had me on so much, for so long, that I started getting out of bed in the middle of the night to eat - it was horrendously scary.

Thankfully, the Breo is beginning to get the inflammation in my lungs quieted down so, I may be able to address more of the fatigue issues with the Pulmonologist next week. The lung inflammation feels like a crisis (acute); whereas the fatigue feels chronic. Thanks for having someone to talk with about-that helps too.

Prednisone is tough to handle and affects bones too. I got my mother down to a low dose rather than doing frequent high doses with taper.

Glad the Breo is helping! Hope the pulmonologist is both understanding and helpful.

I will chime in as well and try to help with the question of appropriate Drs. It seems you might need 3 docs on your team of consultants. A rheumatologist will interpret your lab results, an immunologist/allergist for the eosinophilia and allergic rhinitis/sinusitis, and a pulmonologist for the lung problems. People with autoimmune diseases frequently have allergic issues including nasal polyps, asthma, and rashes. A skin biopsy with immunoflourescent studies by a dermatologist can be very helpful in establishing a diagnosis. Lupus and MCTD can be triggered by viruses such as Epstein Barr that causes mono. Some people continue to have chronic EBV activity which can be diagnosed by blood tests (EBV panel that has to include Early Antigen). This can be a source of chronic fatigue. Autoimmune disorders are particularly complex and there is a lot of connections and overlap between them. MCTD is considered a combo of lupus, sometimes scleroderma and polymyositis/dermatomyositis. It doesn’t always include all 3, as one condition usually predominates. I hope that helps somewhat to shed light on a very complex array of autoimmune diseases. The good news is that once diagnosed, you can be treated and get to feeling better! I hope your appointment goes well.

@slkanowitz Thanks Your summary is much appreciated and helps make my first appoint with the Rheumatologist less overwhelming. I am copying my test results from over the years to take with me, as well as a typed list of symptoms (even the strange ones). He may be able to recommend an allergist/immunologist and a new pulmonologist. I already have an ENT (that I adore) and I saw a dermatologist once.

@rebaba
I wish you the best getting answers. I have a new rheumatologist appointment early July and searching for answers for 8 years. I have been through a couple rheumatologists that were not very helpful. I had autoantibodies show up 2 separate times 2 years apart for Hashimoto’s thyroiditis, SLE and Antiphospolipin Syndrome (APS) which is tied to blood clotting risk. The first Rheumatologist said nothing to me about these autoantibodies and I only noticed them more recently. My second rheumatologist didn’t do really extensive testing like the first and sent me away with nothing (was a waste of time and money). My new neurologist seemed very concerned about my untreated APS and referred me to a new rheumatologist. I am being treated for Hashimoto’s hypothyroidism now but took removal of thyroid lobe /nodule and pathology to finally get officially diagnosed.

I also have chronic fatigue plus many other issues including lung. Have you ever had COVID vaccines or the viral infection? I had both and ever since, I have worsening breathing problems. It is hard to take in deep breaths and now have sleep apnea. My sinuses also seem constantly inflamed so it is hard to get enough oxygen only breathing through my nose. My APS plus COVID makes me think I am dealing with micro vascular/endothelial cell damage from micro blood clotting which is affecting my oxygen exchange from lungs to heart/cardiovascular system and muscles which makes me extremely fatigued.

Have you considered discussing the results with your PCP? i would think you would likely get a more reliable explanation from a physician who knows you. Or how about calling the physician who ordered the tests? All the best