Topic: Every Corner I turn more upsetting results! Now CPAP!!
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I have been treating for almost 2 years. Baseline testing for heart was normal, now after treating I have stage one heart dysfunction.
I have also tested + for HLA biomarker gene (mold, borriella)
Have a C4A of 46,000 range= 0-2800
And now my sleep study has come back showing very little stage 3-4 sleep 0.6%....wow, that's restful! And I need to have CPAP titration done.
Yay! I get a machine.
Sorry for my cynicism, but I was an athlete not too long ago before a bug stole my life away. How does a very physically fit young woman end up with older age maladies?
I have been pretty much a non-responder to treatment. Still have very positive western blots both IgG and IgM and the unknown protozoa.
What about this disease causes a relatively fit person to need a CPAP?
It seems like I am just slowly sinking and not coming out of this guys....really scary.
Sorry for my rant, I just am in shock.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You asked: "What about this disease causes a relatively fit person to need a CPAP? "
--
What about this disease . . . ? EVERYTHING. No one with lyme disease is any longer a relatively fit person. Lyme is a very serious infection. It changes everything. However . . .
A CPAP should HELP you tremendously. If you sleep better, you will feel better and get better. Without good sleep, no one stands much of a chance.
I've known several people who got a CPAP and they got their lives back. Be sure to air out the tubing and mask in fresh air (not direct sun, though). I'd even wash what you can in a mild plant based soap.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you Keebler. You always have such good info and encouraging words. Thank you, sincerely.
I hope that it helps with my headaches then. The nurse said it could also account for my depression (mood disorder). So I will try to be hopeful...still just so, so shocked at how many systems this disease can disrupt.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Sorry to hear about your latest maladies. This disease can feel just so never-ending. It's unreal to me as well just how far reaching and impacting it can be to us. FROM ONE LITTLE BUG. It really is almost unbelievable, unfortunately, we are living proof.
I'm 47 and have always tried to maintain a decent level of fitness as well. But this has been one long, humbling road. I hope you see some progress with your new "machine friend." Look at it as an opportunity to help your wellness quest; though, I know, it's hard not to get discouraged. Chin up! TS
Posts: 566 | From West Coast | Registered: May 2008
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WildCondor
Unregistered
posted
it could be totally unrelated. Lots of people get sleep apnea and it's got nothing to do with Lyme disease. Good luck with it.
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bettyg
Unregistered
posted
feelfit,
i tried cpap for 2nd time starting in FEB. 09 ... IT IS HELPING ME THIS TIME!!!! yippee.
i get NO DELTA 4 SLEEP where my body wakes up feeling refreshed and my body does NOT heel from injuries. haven't for 30-35 yrs.
i has helped me these last 4 months with:
I used to cough all night long; very little coughing now!
i used to be plugged up all night long taking allergy meds; WASN'T doing this until 2 weeks ago.
my biggest thing is DRY MOUTH!! i have a humidier but with all the TX meds; i'm bone try althought i drink 4-5 32 oz. water mugs daily.
GET ONE WITH CUSHIONED NOSE PILLOWS for your nostrel; half mask vs. full mask.
best wishes; BUT THERE IS HOPE, and i'm one person who is doing this now! hugs
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
yes, I know that everything is not lyme. However, I really do not "fit" any other patient profile.
And many with lyme DO develope sleep apnea....
Thanks for the good wishes.
TS, as always thanks for your kind words...all so true.
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
BettyG so glad that you are doing so well on your CPAP. Thanks for the tips. I am happy to see that you gave it another shot after your bad experience the first time.
Posts: 3975 | From usa | Registered: Aug 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am so sorry you got more stuff to deal with.
I do hope that the new diagnosis/treatment helps you feel better... and quickly.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Feelfit, Lyme doesn't always cause Sleep Apnea. Do you have central or obstructive type?
This could be a major help to you, even though it's never good to hear you have another issue. I know. I've heard of some making remarkable changes on it. You don't have to be 'fat and out of shape' to have apnea.
Ironically, when I got mono in 1996, I lost a TON of weight over 2.5 years. I was very fit and was Dxed with sleep apnea then. I believe something (probably Bb) destroyed my sleep cycle and I had no idea. This disease is scary as hell. For me, a BiPAP machine has made little difference in fatigue, attitude, etc. My docs provided no guarantees, but my results were different on the polysomnogram.
Just a FYI, I saw as many thin, younger people taking the polysomnogram as bigger or older people. You never know.
I hope it helps and I feel your frustration. Not a day goes by I don't despise being sick.
P.S. Betty, when you say you get no Delta 4 sleep, I believe that's impossible. I mentioned to you before stage 3/4 sleep is lumped into one category on a polysomnogram readout. I think you'd be a goner if you had no deep sleep for that many years!! However, even disproportionate amounts of REM sleep as a % of total can cause lack of recovery. I think I'm there with you along with most Lyme patients here (some probably don't know this).
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Central.
Apologies again if I offended anyone. Didn't mean to. Wasn't really saying that fat out of shape people only have apnea.....or old folks.
Was saying that I am getting a lot of diagnosis that do not fit my bill. Things that normally would not happen to me. I was never sick. I don't snore....no snoring at all on my sleep study.
Central is a brain/breathe glitch? Yes?
As I said above, I know that lyme is not the cause of apnea, but lots of folks with lyme develop it. I Googled.
I will try to look at this as something positive. Maybe it will help with my headaches and maybe I will feel refreshed all day. I sure hope so.
Like everyone else, I am just so tired of it all. Having one of those periods where hope is thin....I try not to go there, but here I am.
From the lowlands, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Sleep apnea is a HUGE reason/contributor of headaches. This could be the answer to your prayers if it helps. I too have Central. No doubt induced by another illness like Bb. You are correct central is a brain malfunctioning more than a physical issue like obstructive.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Central sleep apnea is probably likely to be related to Lyme, from what I have been told (by a MD who practices preventive medicine). Obstructive sleep apnea may or may not be.
I was found to have obstructive sleep apnea, which was a big surprise to me. In fact, the doctor who referred me for a sleep study didn't expect it, but recommends a sleep study for patients who have fatigue and other symptoms related to Lyme.
Like you, at first I was resistent to using this. But one day 6 months later decided to order that CPAP.
It was very hard to get used to it. I sleep on my side and change sides often at night. So I got one of those masks that fits in the nose with little suction cup looking things and the tubing runs up over the top of my head.
Think about how you generally sleep when you order a mask type. On the side, back, or whatever.
I ordered my CPAP from CPAP.com and was pleased with their services. Much cheaper too. Get something that is relatively portable. Mine had a carrying case with it. It breaks down to several pieces and fits into the padded case. Good for travel and I even took it on a plane once.
I sleep so hard now that my worst problem is waking up in middle of the night trip to the bathroom and being so out of it that I forget to put the CPAP back on. Some mornings I wake up without it.
The doctor said that is OK as long as I wear it at least 4 hours a night.
It has helped my overall health and well-being. A real pain to adjust to it but overall, I feel it is worth the hassle.
Posts: 2275 | From NC | Registered: Oct 2000
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posted
I have had unrefreshing sleep for almost 5 years..since I became sick. My doctor has mentioned a sleep study several times but that is all..never actually scheduled one.
My question is do you need to be off sleep medications in order for the test to be done? I take Lunesta to sleep and know if I couldn't take it I would probably lay awake all night.
Just been taking it for over a year so I know my unrefreshed feeling is not from the pills. I would be interested to know exactly how bad my sleep cycle is cuz I know it must be.
Posts: 343 | From North Carolina | Registered: Oct 2008
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feelfit
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Member # 12770
posted
Well thank you for that ConnieMac! Glad that it helped you.
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Kim,
They allowed me to take my benadryl for sleep while testing. Also said that if necessary I could have taken my klonopin.
Don't know about the Lunesta. I don't think that it would interfere with the diagnosis of apnea but it might affect the results of your stages of sleep. I am not sure though.
Ask your doctor for the test, esp. if he/she has mentioned it in the past.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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bettyg
Unregistered
posted
help, do you have a medical background?
both of my overnight sleep studies showed ZERO delta 4 sleep!
the printouts showed stages 1, 2, 3, and 4 plus the area of terrible nightmare!
just telling you what i saw & mentioned to dr. also know i've been going thru this that long; DEPREVIATION of sleep.
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posted
Thanks feelfit- I have an appt. in a couple weeks and am going to mention it to him. This has been going on long enough. I will do whatever it takes to feel rested in the mornings.
I hope things work out well for you and the CPAP does wonders..
Posts: 343 | From North Carolina | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Betty, I am not a physician. I'm just relaying the reply my sleep neuro gave me as I asked the exact same question when my polysomnogram showed zero stage IV sleep. He informed me of the new lumping of stage III and IV since the two are very very close in nature. I'm not sure when this new lumping occurred.
I am glad the machine is helping you Betty. That alone is proof it is needed. I've leave the diagnosing to the docs. lol. I just wanted to make you aware of this change if you weren't. As I stated, I am doubtful one could survive years with no deep sleep whatsoever. That can drive a person insane rather quickly. Ever watch some of the old Twilight Zone episodes. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I was diagnosed with sleep apnea before getting my Lyme Diagnosis.
I was put on CPAP and I actually enjoyed the peaceful sleep I got from it.
After a few months of treating, I find that I don't need it anymore and I get very refreshing sleep without it.
Like you, I was an athlete prior to all of this. I was a state wrestling champion back in my late teens. I continued to lift weight at the gym and stayed fit up until this disease struck me.
If you have obstructive sleep apnea, just lose a few pounds and that could cure the entire problem. If not, just keep using the CPAP and know that you won't need it forever as you recover.
Unless you are severely obsese or just slightly overweight, my Pulmonologist told me this can cause the obstructive type.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
My husband had to have one while he got his thyroid
levels up. He has Hashimotos disease. He got his
levels up and then could lose the machine. It is
possible you may not need it for life.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
Unregistered
posted
seekhelp,
thanks for your comments. yes, my study was done 4 yrs. ago i believe for 3.5 - 4.
so yours was done after the big change!
what is biostatistics; my service provider is down so i hven't had a chance to reply to your pm .
just answer by pm if you don't want to say here ok. got to log off from library pc.
hoping my service provider is up....
down since 11 pm last night! just hate this. but thanks ful for other pcs free to use! xox
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posted
Hubby was also diagnosed with sleep apnea. He used the CPAP for about 5 years but has not had to use it for about a year now.
Has had problems with insomnia lately, but not related to sleep apnea.
Sometimes during the afternoons he used to plug in his CPAP machine and just leave the mask on the pillow when he would lie down to rest. For him it worked like a white noise machine and he found it restful. Thankfully he has always said my snoring at night actually helps him sleep.
It took him a while to adjust to the CPAP -- what he did was to try to leave it on for longer periods of time each night until he got used to it.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
thanks bea. i have heard from neighbors that they are a little hard to adjust to.
glad that steve doesn't need it anyomore. now that is love, a hubby who is comforted by his wifes snoring Posts: 3975 | From usa | Registered: Aug 2007
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