Help with understanding test results

@dlydailyhope
Yes, I *suspect* I had Covid months before it became publicly known. My breathing problems first began late in 2019, when I began having trouble breathing especially at night and it seemed no one could help me. Finally, an urgent care doc prescribed prednisone (I think) and an antibiotic-it took months to bet better- but have never been "my normal" again. I believe this was just months before covid was made public. After that experience, I have gotten every covid vaccine -and keep an oxygen meter handy.

In the few years following, I saw a nurse practitioner in a pulmonology office was given different sorts of tests and prescribed more prednisone and Breo inhaler.

I also got help from an ENT (in shining armor) and have been sleeping like a babe ever since. In addition to removing nasal polyps, he also surgically widened my nasal passages for me. I tried to find the medical term for the widening and couldn't, but the widening procedure lasts a lifetime, and I am ever so grateful to him. I had no idea that such a procedure even existed! So, since then, I can get a lung and sinus flare up. which is currently the case, and still sleep at night (along with my Breo inhaler). The surgery, and this particular ENT, made a world of difference for me. A different ENT I saw earlier didn't want to do surgery to remove my polyps because he "didn't want to put me through that". Instead, he loaded me up on beaucoup amounts of steroids with devastating side effects. (makes me want to cry still)

Earlier, in desperation, I tried to get a sleep study done but was put-off by the "fly by night" mannerisms of the outfit (no pun intended)-but no longer need it because of the nasal surgery.

Like yours, my lung and sinus problems also seem to be "inflammatory".

I'm not sure how fatigue "connects" to oxygen levels though. I had an 8 month period of routinely 98% oxygen levels (without the Breo), but still had loads of fatigue and no stamina.

Your breathing problems (that keep you from sleeping) sound a lot like mine did. Have you sought any treatment for the breathing problems? I got no help from my prim care doc and had to take myself to a pulmonologist and Ent. For sure not being able to sleep makes everything even worse. I think at one point I had to focus on solving that alone and may have succeeded with that, anyway. (stay hopeful)

It could be that Covid is responsible for ending my decades of relative wellness and the start of my breathing problems (and I suppose the "flags" on my recent blood tests). Maybe the Rheumatologist can help with that theory.

@elisabeth007 I guess I feel at a disadvantage because my PCP is out on leave for 9 more months and I don't know the "replacement" who ordered the tests. When he phoned with the results, he simply said auto immune is indicated and that I need to see a Rheumatologist. While I can't say I 'm surprised, my earlier experiences are that "everyday" docs tend to describe auto immune topics in unspecific terms.

@rebaba I think this article from the Autoimmune Assoc may help as you prepare a list for your meeting with the doctor.
https://autoimmune.org/wp-content/uploads/2024/03/Question-Prompt-List-Autoimmune-Association-English.pdf
Write the questions down and leave space for the answers!!
Who will be going with you to the appointment?

@becsbuddy Thanks so much for the helpful list of questions to ask! I did make a chronological list of symptoms for the Rheumy. Next, I will make a list of questions to ask. The article helped guide me to "get to the meat of the issue" or what it is I am after, which is how to get some energy and how to cope with my "come and go" breathing problems.

FWIW, I have spent the past 3 years seriously improving my lifestyle: lost weight, exercise, healthy eating, reducing and/or eliminating meds, etc..... As a result, it feels like I've reached a "baseline" of sorts-by establishing and reaching what I am able to do for myself. And now I may have to decide what drugs I am willing to take, if there are any, to get some energy and cope with the breathing problems, for starters, which requires an accurate dx. And my hubby will be coming with me for the drive.

@rebaba Sounds like you’re really getting organized! May I suggest that your husband attend the doctor appointment with you. The doctors are more likely to respond in a positive manner if someone else is present. Don’t ask why, it’s just a fact.
Get organized so you’re not nervous! What’s one way that you can relax yourself before the visit?

@becsbuddy Thanks for "holding my hand"-you live up to your username! I agree it's probably a good idea for my hubby to be in the room with me, if only as my second "set of ears". My appoint is this Tues - I'll be sure to let you know the results of my visit. It may take some time to post though, because driving 40 mins each way to an appointment, in the sun, will really wipe me out. (Oh my, I just remembered that the summer months have always been really hard on me-period-throughout my entire life and I "like" hibernate or shut-down)

A way to not be nervous may be, to view this appoint as an opportunity to address my fatigue in detail, I know only too well what my limitations are. And making that my focus feels grounding and positive. Thanks again

Hi! Are you aware of complications from a tick bite?
A tick bite can cause high ANA. This is a concern. Unfortunately, the diagnosis leads to Lyme Disease.

I am not a doctor. I was bit by several ticks years ago. I went through blood tests etc....especially for high ANA.

@sadea0208 Thanks for the post- I live in a wooded area and use to have lots of pets that bought ticks indoors with them, so it would probably be a good idea to get tested for Lyme. I guess auto immune disease, long-term covid and Lyme are all suspects. Did you ever get relief from your Lymes symptoms?

@rebaba
I also had some mysterious illness much like Covid in the summer of 2019. I was so sick, my lungs and breathing were seriously affected and I had to go to a walk in clinic to get breathing treatment (was wheezing), strong antibiotics, nasal spray and inhaler. Then in 2021, I got the 2 Pfizer vaccines and had terrible reactions, especially to vaccine #2. I had chest pains and difficulty breathing for 3-4 months and woke up multiple mornings feeling like I was having a heart attack (took baby aspirin just in case). Found out months later preparing for ACDF surgery that my ekg showed I had an “old” infarct! My mother died of a heart attack at 67! Then, in the summer of 2022, I had a terrible case of Covid and had to take paxlovid to keep me out of the hospital (came close). Long COVID has wrecked havoc on many lives. My primary doctor prescribed antihistamines when I told her I had chest pain and difficulty breathing and didn’t seem concerned about my heart/lungs at all! I finally got a sleep study and diagnosed with sleep apnea late 2021 before officially getting COVID (believe the vaccines did more damage than the illness). Ever since, my health got worse. I am now, not with much guidance from my primary doctor, taking myself to an audiologist (hearing loss and tinnitus), a new neurologist, new rheumatologist (July) and new pulmonologist (couldn’t get in until September). I told my primary doctor that I was gasping for air wearing my cpap and took it off because I could no longer breathe at night. I need to get a new ENT to follow up on hearing loss/tinnitus/fullness on ears to rule out Menieres/AIED and will have them check to see if I have any nasal polyps or changes to nasal cavity causing difficulty in breathing through nose at night. Thank you for the suggestion. Good luck to you on your healthcare journey. It seems we need to navigate on our own most times. Primary doctors are no longer coordinating care it seems and patients are left to connect the dots on their own which is wasteful for everyone.

@dlydailyhope Sounds like you've really been through the wringer! FWIW, I don't believe that people's nose cavities change over time. Instead, I *think* my ENT gave me "more room" to move more air, for when my inflammation flares. Not sure, but I'm thinking it is not "nasal size" that indicates surgery, but instead the degree of inflammation/swelling. etc... I googled "surgery to widen nasal passages turbinates" and came up with the following link, for one.
This site won't let me post a link but go to the "Sleep Apnea Surgery for the Nasal Cavities" at Penn Medicine
In any case, I would have "all your ducks in a row", before you visit the ENT. And keep in mind that the surgery, with general anesthesia, is no "walk in the park". Personally, I am ever so glad I did it-but I was totally miserable before it, and totally unable to sleep and breathe. good luck keep me posted