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RE: I just completed my first week of using a machine. What does this data tell you?
I was “diagnosed” with lyme by my GP in 2017 and got Antibiotics for 30 days. They found IgG and IgM.
A few months later I went to a virologist in a major hospital. He said that the antibodies found back then are typical to what 1/4 of the population would show because both IgG and IgM can stay for a long time. Without spikes in the other blood work he was sure it was an old immunity and not a active infection.
RE: I just completed my first week of using a machine. What does this data tell you?
I've read igm is active or recent. It's not my intention to dispute your doctor's explanation. But I feel I'd be doing you a potentially huge disservice if I didn't bring this up....
A week after I got bit by the tick I got a rash. Went to the doc and was put on antibiotics. Once I was done with the antibiotics I thought I was good. About a month later I started getting bad migraines, then fuzzy vision, then aching joints, and a year later I started having trouble walking. I went to a neurologist who was also a LLMD (lyme literate doctor). He tested me for lyme and the tests came back igm and igg positive. He immediately put me on a series of 3 different antibiotics. It was after that that learned all about chronic lyme.
Maybe you are clear of lyme. But if you continue to experience unexplained flares, I would seriously search for an LLMD and start getting proper treatment.
RE: I just completed my first week of using a machine. What does this data tell you?
Just to follow up on my earlier comment, and then I'll let it go. A consultation with a rheumatologist might be a good idea.
You ask whether you have apnea. Yes, according to your earlier sleep test. I looked back at some earlier parts of the thread, and I'm wondering whether the titration will include a trial on an ASV machine, which is a standard treatment for central or mixed apnea. In your place, I'd ask, and if the answer were no, I'd request that this be tried.
RE: I just completed my first week of using a machine. What does this data tell you?
Update:
One month passed and here is some new data. The most recent suggestions from this thread seem to lower the AHI succesfully. Unfortunately, I still feel extremly fatigued. I cannot see a positive trend yet.
Masks:
I used the Respironics under the nose mask which fits very well, but I swallow a lot of air. The flatulence is actually fun : ) , but not the bloated belly. That hurts. This week I tried out their under the nose full face mask. Also with the hose on top of the head. That reduced the air swallowing. Unfortunately none of the 4 included masks seal right. At some point during the night, the pressure goes to about 10 and then it lifts up the mask from my skin and causes a “hurricane” as my wife calls it. There is also some weezing from at least one of the adapters. That is ok though, it is a mechanical problem. Those I can solve.
Blood:
I have a appointment at my local hospital in 2 months time to check out some more blood work and do some more lung tests. Those were always ok at my local pneumologist. I hope to find some doctor that really cares and looks deeper. So far they only ever talked to me for 2minutes each. I work with customers myself and I rarely can help them with trivial problems in such a short time. In my opinion it is a flawed system when your blood charts don´t go through the roof. I have some infection type blood values like white blood cells that seem to be at the far ends of the race. Not enough to trouble a doctor. I myself cannot tell if they are of significance. Tomorrow I have a dentist appointment for a mild jaw pain. Maybe he finds some hidden infection that magically cures my fatigue. Again I take no p
New Machine:
My health insurance finally got through and will provides a Airsense 10 with humidifier in July. The Bilevel from Philips was purchased by myself. I hope the Resmed will help better. The sleep lab reccommends 6-11mbar and says they are certain it is OSAS. So far I was on 6-12.
RE: I just completed my first week of using a machine. What does this data tell you?
Yes, your diagnosis from an in-lab sleep test was obstructive apnea. Your numbers are good, if the current chart is typical. If you're bothered by aerophagia, I would suggest dropping your maximum IPAP to see whether that helps.
I'm a little confused, because the "shark-fin" pressure increases appear just to be probes from the machine to see what's going on; otherwise your pressure maxes out at 8.2. At any rate, try setting the max IPAP at 8.5 and see whether that changes anything. You'll be effectively at a fixed pressure of IPAP 8.5 and EPAP 6.0, with PS of 2.5.
But your big problem seems increasingly to me to be unrelated to sleep disordered breathing. You report being weak, easily tired, and sleepy during the day. You may have long COVID, chronic Lyme infection, connective tissue disease, Epstein Barr, or something none of us has thought of. You need a skilled, imaginative, and patient diagnostician, not one who dismissed possibilities out of hand and gives you two minutes of time.
I know from experience how hard it can be to insist on good medical care when you're exhausted, so you have my every sympathy. At the same time, you do need to insist -- politely, intelligently, but persistently. If you haven't already, you may want to have your wife accompany you on your doctor visits. She can offer observations that could be useful. "He once was like this...., and now here is how life goes for him ...." She can also help with the insistence and follow-up, and she can make sure all your questions get raised and answered at each visit.
