Sleep Issues

Hi everyone. I began having sleep disturbances a year or so ago. I would wake myself up not breathing or gasping for air. I would sometimes have to sit up on the side of the bed and deep breathe for a few minutes to return to normal. I also noticed when I was reading before sleep, I would sometimes doze off and simply stop breathing. I went to a sleep clinic and had a study done. It showed both central and mild obstructive apnea. What concerns me is the central apnea. I am worried that since I have other CNS problems (like I no longer have a gag reflex) that my breathing is being affected by a problem within my CNS. Does anyone else have this problem? Has anyone had a doctor discuss such a problem with them? I still wake myself up many times during the night either breathing very rapidly and my heart racing or gasping. My husband says I don't make snoring noises. Can anyone shed light on why we Lyme patients have sleep disturbances and the mechanisms (or lack thereof) behind it? Thanks!

Did your sleep clinic make any recommendations for a CPAP machine? What was your sleep apnea index? Mine was around 5 which is mild but still considered sleep apnea. I tried the CPAP machine but had no effect on me. I also have Lyme and I am waking up 50 times a night. I'm not sure what's contributing to this though. Could be Lyme, bartonella, mild sleep apnea, or combination of both.

Yes, sounds exactly like sleep apnea, which can happen with Lyme/Fibromyalgia.

Margaret

You should do a site wide search for this issue, as it's not a question just for those with Lyme disease. Sleep apnea can and does affect many, no matter what conditions they may be dealing with - and you could find the information that you are looking for!

Hi, I'm new to the forum and about a year late to this thread, but thought I'd add my 2 cents and recent experience with Central Sleep Apnea. I am female, 58 yrs old.
I've had Lyme at least since 2013. Finally self-diagnosed over a year later after problems with imbalance, facial twitching and sever neck pain. I later saw an LLMD who gave me a clinical diagnosis since the Western Blot was only positive for the lyme bacteria on 1 band. Was treated with 3 months antibiotics, felt better than ever and transitioned to herbals (Cats Claw and Banderol, B12 and Folate) last fall.
Was doing great until Mar 2015 (so for about 4 months).
In March started experiencing heart palpitations and chest pain as well as dizzy spells. Have seen an emergency room doc, a Cardiologist and a Pulmonary doc. I requested testing for sleep apnea from the Pulmonary doc because I wake up gasping for air with snoring/or/snorting when this happens.
Did an overnight sleep study and was diagnosed with moderate to severe obstructive sleep apnea (AHI of 22 events/hr). Returned for the 2nd sleep study last week to try CPAP machines but had a horrible experience. Could not exhale and after the technician tried all night to find the right formula with CPAPS and BIPAPS, I was exhausted, out of breath and with chest pains. Finally during the last 2 hours she used an Adaptive Servo Ventilation (ASV) that allowed me to breath somewhat normally and I slept for those 2 hours.
They changed my initial diagnosis to "Central Sleep Apnea". From what I understand, this type of sleep apnea stems from lack of signals from the brain that tell you when to breath and can also be caused by congestive heart failure among other things.
I am to go back to the Sleep Center in a few weeks to get an ASV/ or APAP machine - not quite sure exactly.

But all of this to say, or ask out there.... is this Lyme-related? It seems to be, as I never had health problems before the tick bites and those health problems just seem to shift from one area to another, making no sense. And if it is Lyme related, I guess that means it's time to go back to the LLMD (about a 4 hour drive from where I live....bummer!). My heart work-up checked out , no problems other than occasional (unexplained) heart arrhythmia...follow-up with Cardiologist is next week and I will have more results at that time.
Another question to put out there ... I mentioned the Lyme disease to my Cardiologist, but he didn't make a connection...should I mention this again now that I know I have Central Sleep Apnea, or just leave that to my LLMD?

Any input would be greatly appreciated...thank you!

Keylime - Welcome to the community!

I think you should mention it to the Cardiologist.

Please keep coming back to the forum, and let us know how you're doing, and what your LLMD says about your sleep apnea.
My LLND never said much about it.

First to "Girlie",
Thank you for writing and telling me about your "Sleep Apnea" experience. My next step after the Cardio follow-up was to see an ENT, but I see myself developing the same pattern of seeing one doctor after another, as I was before I was diagnosed with Lyme. Seems like a waste of money, but I did e-mail my LLMD with the cardio symptoms and she confirmed that it would be best to get the full cardio work-up and if nothing was found, then to go see her.
After reading your response and that of Traveler's, I'm convinced it's time to go back to a more intense treatment for the Lyme bacteria which is probably what the LLMD will want me to do. I'll be curious to see if the gasping for breath and the chest pains disappear once I get back on an antibiotic treatment.
I'll certainly come back to this thread with an update. Thank you so much!

Dear Traveler,
Thank you so much for your response. I've been reading through the "New to Lyme" threads and there is so much good information and reference material in there.

I would definitely like to know the names of LLMD's in my area which is Dallas/Fort Worth if you wouldn't mind sending me an email when you have time. I do know of a highly recommended one, but his wait is long and like the best ones, doesn't take insurance so is quite expensive. Still, I may end up going to him even if it breaks the bank. Perhaps there are new ones in my area that you might know of?

Re staying on the abx longer....I'm afraid I pushed my doctor to get me off of the abx after the 12 week mark in order to start on the herbals that I was anxious to start on. At the time I was symptom free which I know now was not a reason to stop!

Thank you for the warm welcome and the wealth of information!