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Geer1's Story - It isn't always Apnea (or UARS)
#1
Geer1's Story - It isn't always Apnea (or UARS)
It has been a while since I last posted here but I figured I would post an update for those interested.

For years now I have been fighting health issues. Back in 2019 I got diagnosed with sleep apnea via a home sleep study and I thought that I had found the problem since fatigue and poor sleep quality were significant factors. I spent a while learning everything I could about apnea, UARS, interpreting OSCAR data etc and eventually I came to the conclusion that many on here do. If my health issues were caused by SDB (sleep disturbed breathing) then it must be UARS and in such a way I cannot diagnose or figure out a way to treat it from my OSCAR data etc.

One of my symptoms throughout this journey has been digestive issues and nasal congestion. A while back I tried some elimination diets and found that both dairy and gluten were affecting my health in numerous ways including being the primary source for nasal congestion and some of the digestive issues. Removing dairy and gluten from my diet improved not only these symptoms but also my sleep and health in general (since I could breath better at night, didn't have reflux, bloating etc). Since there were a number of other members on here with similar reflux and congestion issues I wondered if there were still some ties to sleep disturbed breathing. I had two follow up in clinic sleep studies both of which indicated that I no longer have apnea (or maybe never have it although I think my nasal congestion caused by dairy intolerance is what caused positive home study test) but that my sleep quality was still fractured by spontaneous arousals. I wondered about UARS but the sleep data from tests didn't indicate this as a cause (I even got PSG data and tried to teach myself how to interpret it) and my sleep doctor's conclusions were that I either just didn't sleep well in the strange clinic etc or that there is something disturbing my sleep but they won't be able to know what and the best they could do is offer to try some sleep aids (I ended up using Dayvigo and found it helps a bit so have been using it since). 

At that point I started to give up that my issue was SDB related and treated my sleep issue as a symptom instead of cause. I changed focus to trying to figure out what else might be an underlying cause for my health issues and since I still had digestive issues spent a lot of time researching and trying to improve it. Adjustments to my diet provided some relief as did some antimicrobial supplements (was thinking issue was SIBO) but they were either not sustainable or short lived improvements. 

I was starting to get frustrated and running out of options for things to investigate. I had seen so many different doctors and had so many different tests done and found little issues and ways to improve things but never got to the bottom of things. My digestive symptoms continued to act up so I ordered a stool test through a naturopath and when the results came back I was surprised to see there were a couple mild elevations to one inflammation enzyme and immune response (I had done same test a couple years ago and results were borderline but not elevated). I researched these results and came to the conclusion that they are usually caused by an infection although the same test had checked for a number of bacterial and viral infections and shown none. Then I realized the test did not include parasites, I asked the Naturopath and he thought parasites were unlikely but I figured it was worth looking into and was able to talk my doctor into ordering a test.

Sure enough it came back positive for Giardia Lamblia (parasite that causes beaver fever). This parasite usually causes acute symptoms primarily consisting of severe diarrhea which I don't believe I have ever had but after researching it more I found that some people have milder chronic cases and my symptoms fit a chronic Giardia infection to a tee. I can't be 100% certain I have had this infection for years but based on my research I believe I have and I just started treatment for it and am hopeful that I finally got to the bottom of these health issues although based on research recovery could take weeks to years (post infection symptoms such as IBS and CFS are not uncommon).  

In short I wanted to post this so that if there are other people stuck thinking (or hoping) that apnea/uars is the cause of health issues realize there are numerous health issues that affect sleep quality and if there isn't obvious OSCAR data indicating untreated apnea or uars keep on searching for other causes and you may eventually find one. If you have any other symptoms (like in my case my digestive symptoms) focus on trying to diagnose/treat them and don't settle for diagnoses by exclusion like "IBS" unless you are certain all other tests etc have been completed.

For the record even though I supposedly don't have apnea (or UARS) I still use my cpap machine and I sleep better with it although I think it is more because of the extra humidity it provides (dry nose/airways is an issue I struggle with) than SDB (although perhaps I do still have minor SDB it helps with). One of the tricks with diagnosing and treating chronic health issues is to try things and see what helps. Eventually you will figure it out.
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#2
RE: Geer1's Story - It isn't always Apnea (or UARS)
Nice to see you back again. Weird stuff like this seems more common since I had my lymes, and now some members are citing long-term COVID. So much stuff is outside of the CPAP BPAP wheelhouse, and yet we try to address it all.

BTW you have a call on line 3 http://www.apneaboard.com/forums/Thread-...on=newpost
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Geer1's Story - It isn't always Apnea (or UARS)
Thanks Geer1 for updating us!

You really made me stop and think about the many digestive issues I deal with and never finding relief.
You've given me a lot to think about and investigate. Thank You.
OpalRose
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Geer1's Story - It isn't always Apnea (or UARS)
(04-23-2023, 04:37 PM)Sleeprider Wrote: Nice to see you back again.  Weird stuff like this seems more common since I had my lymes, and now some members are citing long-term COVID. So much stuff is outside of the CPAP BPAP wheelhouse, and yet we try to address it all.

BTW you have a call on line 3 http://www.apneaboard.com/forums/Thread-...on=newpost

Sleeprider, you struggled with Lyme disease?  Sounds like we have some stuff in common.
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#5
RE: Geer1's Story - It isn't always Apnea (or UARS)
I had neuro-Lymes in 2013, aka Lyme meningitis. Was admitted to hospital with stroke-like symptoms and it evolved into bilateral Bell's Palsy, double vision, poor cordination, and eventually paralysis of various other parts of my body, joint pain, fatigue, confusion. I retired at 59 as a result of being fired for failure to perform. Need more? I was a very sick puppy, and friends were gathering. My eventual diagnosis came after multiple MRIs, CT scans, blood tests, and other intrusions, from a spinal tap that was positive for Borrelia burgdorferi in the spinal fluid requested by an infectious disease specialist. This was before Lyme's was commonly diagnosed in this area and was not previously diagnosed as neurological disease. During my time in the hospital, teams of doctors used to meet in the morning to discuss the next battery of tests to see why a healthy guy is experiencing pain, confusion and various paralyses. They even put me on a low sodium diet as a precaution against stroke that nearly killed me due to low electrolytes. So yeah, the most serious form of late-stage Lyme's https://www.envita.com/conditions/lyme-d...9b55bb53f4 I have otherwise never been sick in my life, and never got Covid, but there you go.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: Geer1's Story - It isn't always Apnea (or UARS)
Apologies for my skepticism, but I feel like it's perhaps too quick to jump to a conclusion that it is the parasite. It's been two weeks since your post; have you felt better since?

Given that CPAP makes you feel better and that you still have spontaneous arousals in your latest sleep study, I'm hesitant to eliminate OSA/UARS as a potential cause to your symptoms.

Could you link your latest sleep study(s)? Have you done a CBCT scan of your airway? Do you have any nasal congestion nowadays?

Or, do you have any recent OSCAR data? Curious if we can see any patterns in the flow rate graph close to the spontaneous arousals and if there's any residual flow limitation.
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#7
RE: Geer1's Story - It isn't always Apnea (or UARS)
(04-23-2023, 02:02 PM)Geer1 Wrote: Removing dairy and gluten from my diet improved not only these symptoms but also my sleep and health in general (since I could breath better at night, didn't have reflux, bloating etc).

... Sure enough it came back positive for Giardia Lamblia (parasite that causes beaver fever). 

Giving up diary & gluten is an extreme challenge to so many.  Even for those with significant intolerances, there are many that would put up with any side effects rather than give up those food groups.  I know someone who struggled for years with some issues, only to find that he had issues with gluten.  For him, it was life changing, but required substantial changes in everything food related.

I look forward to all kids leaving home and significantly trying to go that route.  It’s far more difficult to do in families with kids.  In a more perfect world, everyone at an early age would be tested for allergies and other intolerances.  I can’t help but wonder if the same intolerances would exist, absent the modern practices associated with mass food production.

Regarding “beaver fever”, I hadn’t heard of that term prior to attending a family farm camp many years ago.  One of the many kids, against everyone's warnings, went into a small stagnant pond and became seriously ill for 2+ weeks, even though he was treated for Giardia Lamblia.  One parent used the term “beaver fever”, a term I was completely unfamiliar with.  It was a nasty persistent illness.  I’d hate to think what it would do to an adult, untreated.
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#8
RE: Geer1's Story - It isn't always Apnea (or UARS)
Geer1,

Thanks for the update. I'm still trying to figure out my dysautonomia, which is better with good sleep, but still seems to relapse/remit on its own schedule. I used to have similar symptoms before my celiac diagnosis and later when I'd get glutened, so strongly suspect some kind of autoimmune response or endothelial damage. BUT, if I can't get any answers from rheumatology and endocrinology, I'm thinking infectious disease may be the next thing to check out. I was bitten on the back of the head by a tick about 6 months before my first bout of symptoms. Lyme is not common in Colorado, so I think I'll have to get obnoxious about asking for a test before I'll get one. Or seek out a naturopath or functional medicine doctor.

So much of this comes down to the streetlamp fallacy: we never diagnose parasitic bacteria here, so we don't bother to look for it (so we never diagnose it...).
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#9
RE: Geer1's Story - It isn't always Apnea (or UARS)
Sleeprider,

I dated a fellow in high school who had neuro-Lyme when he was young.  It's a horrible condition, and even now I think it's under diagnosed (I think the only reason he got a diagnosis in the early 1990s was because 3 family members got Lyme, and one of them had the bulls eye rash).  I'm so sorry all that happened to you.  It's truly life changing.  I wonder how many of us here with central apnea have post infectious illness.
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