ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Seems like 1/2 my disability clients have a CPAP. In fact, one of my clients at age 32 died from a heart attack. Autopsy said she had severe sleep apnea. She had a CPAP but was not using it.
But that is enough to scare the H*ll outta me.
So I had a sleep study last night - my very first one, ever - and was told I have extremely mild, borderline sleep apnea, it is not happy to hear that.
But was told I should try a CPAP. Said that although my situation was very mild, I would see a significant increase in my energy level and well being if I decide to use one.
Was told that even second long disruptions of my sleep that happen a few times a night can result in poor energy, fatigue, etc.
Said my situation is not "dangerous" but could be over time if it gets worse and I do not know it.
Would be interested in hearing from others who have been through something similar. For those who have initiated use of the CPAP, did you see improvement in your well-being and general health as a result?
Did anyone turn into "superperson" after they started on a CPAP like this guy says?
The sleep technician's descriptions of the amazing results of so many seem a little far-fetched to me. Is he trying to take advantage of my good insurance, or is this for real?
quote:Originally posted by ConnieMc: Seems like 1/2 my disability clients have a CPAP. In fact, one of my clients at age 32 died from a heart attack. Autopsy said she had severe sleep apnea. She had a CPAP but was not using it.
But that is enough to scare the H*ll outta me.
So I had a sleep study last night - my very first one, ever - and was told I have extremely mild, borderline sleep apnea, it is not happy to hear that.
But was told I should try a CPAP. Said that although my situation was very mild, I would see a significant increase in my energy level and well being if I decide to use one.
Was told that even second long disruptions of my sleep that happen a few times a night can result in poor energy, fatigue, etc.
Said my situation is not "dangerous" but could be over time if it gets worse and I do not know it.
Would be interested in hearing from others who have been through something similar. For those who have initiated use of the CPAP, did you see improvement in your well-being and general health as a result?
Did anyone turn into "superperson" after they started on a CPAP like this guy says?
The sleep technician's descriptions of the amazing results of so many seem a little far-fetched to me. Is he trying to take advantage of my good insurance, or is this for real?
Thanks!
Hi!
Sounds familiar. Yes, I use CPAP and although it's not the answer to all my sleep/ wake difficulties it has proven to be a very positive intervention for me!
Medicare wouldn't cover the cost of the machine as my sleep study didn't meet their criteria.
I went ahead at on the advice of the sleep docs to try it and was glad I did. I'm paying for it myself (worked out a payment plan with the supplier).
It took some getting use to intially but now I "won't go to bed without it". For me it's been VERY effective in eliminating the freguent waking episodes once I am asleep.
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I was diagnosed with sleep apnea the begining of the year. I am supposed to wear Cpap but then I got Lyme and honestly I have blown it off a bit. I havent got the machine yet. I hear great things about the CPAP.
Sleep studies are fun huh? LOL
Posts: 3905 | From USA | Registered: May 2007
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butchieboo
Unregistered
posted
Honestly Connie,
Who isn't after your money?
according to my reference book Apnea...is a temporary cessation of breathing....
When one is sleeping,and the apnea occurs, the brain then activates the necessary sequence of brain functions that
jerkes you awake. This is supposed to wake you so that you may start breathing again and not suffocate.
Like all of our symptoms, this is yet another symptom presentation that lyme likes to
manipulate/mimic to convince ducks we have something other than what we have.
This particular presentation probably has to do with the interference/infection of the frontal lobe of our brain.
It accompanies depression of frontal lobe and diencephalic dysfunction. Postulated to be due
to an abnormality in the neurologic respiration center as presented in CHEYNE-STOKES phenom.
This could also be linked to the flee or fight messages the brain gets because it senses an
alien body(the spirochetes)due to our immune response. Which is why PTSD is linked to other
chronic ailments that help to perpetuate the ailment and keep it chronic.
You may get some relief from this condition using the CPAP however I personally would'nt waist my time or money.
Get rid of the spirochetes in your brain and the dysfunction they are causeing and your apnea should subside....
Unfortunately that is NOT an easy thing to do either.
The CPAP will supply enough oxygen to you so that you may sleep longer and experience the
benefits of long re-juvenation associated with deep sleep overall. Which would help you overall.
And what it is that the PTSD is trying to prevent.
It may also be beneficial for just the oxygen that is delivered to your blood/spirochetes which we know the bug does'nt like.
It may also have no effect whatsoever because it is being utilized for something that isn't necessarily happening for the mainstream reasons.
It's happening due to lyme infection which has yet, not been recognized as a cause for this symptom.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I have obstructive apnea (not central) and I'm assuming that's what you are talking about. Mine is moderately severe which is dangerous if left untreated. I didn't know it but according to my sleep studies (I've had 4), I was waking up 60-80X's and hour. My doctor told me that people with untreated sleep apnea have a 400% higher chance of having a stroke!! Not something I need.
I do think that obstructive sleep apnea is not at all unusual with lyme. I think a lot of people have it and don't know it. Untreated sleep apnea can cause fluid retention, depression, anxiety, muscle soreness (because of poor sleep), high blood pressure, irritability (sometimes extreme), obesity or difficulty losing weight, brain fog (inability to think), fatigue, daytime sleepiness, car accidents due to falling asleep at the wheel. It can also greatly increase your chance of getting diabetes according to some studies that I've seen AND it can lead to DEATH!!! A young man that my son in law works with died several months ago because he took a nap without his machine.
Sleep apnea can be genetic due to the size and shape of the throat, allergies causing throat swelling etc.. and possibly due to congenital lyme disease (my opinion about the lyme). It is rampant in my family and many of us are sick with lyme symptoms. As one ages, supposedly sleep apnea gets worse. Of course for those of us with lyme, once we get treatment, it will hopefully get better. If you are overweight, losing can help.
My son in law has mild sleep apnea and notices that he feels better using a machine. Not as tired and less irritable.
It's hard to say if those of us with lyme will notice the huge differences that the tech was telling you about since we have other things going on that are preventing us from feeling better. I'm sure it depends on how severe your lyme is.
For me, I have a very weird problem with fluid retention and using the CPAP caused me to gain a lot of fluid in the first year that I used it. The doctors have no idea what is going on and without going into too much detail, the CPAP does affect blood pressure and aldosterone and some other hormones that are a problem in me. I don't think most people have this problem although I've read about others on the internet who have mentioned that they have gained fluid with the CPAP. Most people lose weight and their blood pressure normalizes.
The CPAP does allow you to get more oxygen during sleep and I'm thinking that either my babesia or bartonella or whichever one is causing the fluid retention loved that and took off.
Bottom line for me, I do get deeper sleep (REM) now whereas before the CPAP, my studies show that I couldn't get into REM for very long. You need REM in order to heal. I am much less irritable which is so much nicer because I hated feeling cranky all the time. I don't feel like I'm going to die in my sleep anymore. I even gave instructions to my husband and daughter in case I didn't wake up because I always felt a sense of doom as I went off to sleep.
The pressure needed to hold my throat open varies a great deal from one day to the next because it depends on how swollen my throat is and how my throat muscle is working or not working. I did not do well with the regular CPAP and needed the kind that adjusts to a varied pressure (APAP). Most people that I've talked to sleep much better with the kind that automatically adjusts to accomodate changing pressures.
If you don't get a machine now, please keep a close eye on this so that it doesn't sneak up on you. I do think it can damage the heart and brain due to lack of oxygen during the times when you aren't breathing.
If it were me and I had any of the symptoms that can be caused by sleep apnea, I'd try the machine to see if it helps, especially fatigue.
Most people have to try several to many different types of masks before they find one that they can sleep with. I have to sleep with my head elevated a certain way and with my back propped up in order to keep my mask from leaking.
I hope some of this info is useful to you.
Terry
[ 28. June 2007, 07:38 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Sleep apnea is associated with Babesiosis if I remember right- let me pubmed hop- have noted in in local patients- nope just one abstract though- well, it is a local truth!!! a few people with Babs locally have also had apnea-
1: Pediatr Infect Dis J. 2001 Aug;20(8):816, 820-2. Links Apnea, bradycardia and thrombocytopenia in a premature infant.Lee BP. Division of Infectious Diseases Children's Hospital Oakland, Oakland, CA, USA.
PMID: 11734753
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Lyme citation for apnea- 1 as well- ************************************ 1: J Neurol. 1995 Sep;242(9):604-7.Links Neuroborreliosis as a cause of respiratory failure.Silva MT, Sophar M, Howard RS, Spencer GT. Lane Fox Respiratory Unit, St. Thomas' Hospital, London, UK.
We report three cases of neuroborreliosis presenting with acute respiratory impairment. All the patients had encephalopathy and focal neurological signs with brain stem abnormalities in two. All three patients had respiratory arrest associated with progressive nocturnal hypoventilation or prolonged central apnoea. Tracheostomy and prolonged periods of ventilatory support were necessary in all cases and weaning was complicated by residual central respiratory disturbances. These cases emphasise that Borrelia infection should be considered in the differential diagnosis of unexplained respiratory failure.
PMID: 8551324
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Thanks for all the great feedback.
I do have Babs and have always thought that I have much more of a problem with that than I have ever had with Lyme.
As long as my insurance will pay, guess it is worth a try. I will hope it will help me lose weight. Last year when I developed early breast cancer, I was abruptly taken off HRT, and that had horrible consequences. I started packing on weight and could not stop it. So maybe this will help.
Will post a follow-up eventually.
Thanks to all.
Posts: 2275 | From NC | Registered: Oct 2000
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bettyg
Unregistered
posted
connie, mine was BAD NEWS from the start.
if interested, do a search for my no. 6147
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I have OSA, not central apnea. I don't see how apnea can be directly blamed on Lyme in the brain, unless it is central apnea. Only a sleep study can tell you which type you have.
I know some of the drugs used for muscle spasms and anxiety can cause or worsen OSA, as well as the collagen/elastase imblalance we have. If you are taking benzodiazepeine drugs, getting off of them can help or eliminate apnea in some cases.
I have used CPAP for 9 months now, and it has been a Godsend for me. It took a long time for me to notice improvement, since I'd been ignoring my apnea dx for so long......
It was 3 years after my apnea diagnosis before I broke down and tried CPAP, because I was determined to get rid of my apnea by losing weight. But, I found out the sleep doc had been right....I needed the CPAP before I could lose weight, not the other way around. Hormones that control weight loss get out of whack when you have apnea, making it next to impossible to lose wt., and likely that you will gain wt. on your belly.
The masks made my skin swell and burn and prickle, and I was told this is common in people with Fibromyalgia, which I have secondary to my Lyme. So, I had to switch to the nasal pillows type of CPAP, and it has been wonderful for me. I use The Breeze nasal head gear. I would not sleep without it.
You must push to try different head gear until you find what works for you. They will always offer you the cheapest product first, but be assertive if it does not work for you.
I would be a complete CPAP failure, if I had not learned from an online forum like this one that I must be assertive. Try www.talkaboutsleep.com. I think they literally saved my life!
Untreated apnea not only increases your risk of stroke by 400%, it also increases your risk of heart attack by 500%.
Before CPAP, I woke up every 1 1/2 - 2 hours and had to pee every time. You don't get any deep, restorative sleep unless you can sleep at least 3 hours in a row. It is also nice now not to have to try and find a bathroom every 30 minutes when I'm away from home.
Now, I sleep 5 hours in a row without waking, then go back to sleep and sleep 3 more without waking. Sometimes, I am still up in the middle of the night for an hour, but that is because I take several drugs at 4 am, and have to wait for them to work. My circadian rhythm has not normalized as much as I would like, at least not yet.
I have at least double the energy I used to have. Example: I can now vacuum the entire house, do an hour of aerobic exercise, cook and serve a meal, pull weeds in the garden, and do the laundry, all in the same day.....
My muscles will not be any more sore the next day than a normal person's would be. That is a huge change from vacuuming just one room, and doubling over in tears from the muscle pain, unable to go on, which is how I was before CPAP.
I am now losing weight slowly and am finding it easier to keep it off, wihtout having to starve.
My blood pressure was too high, even with strong drugs, and now it is normal. I have been able to lower the drug dose by 1/4th. I also was able to lower my other heart med by 1/3, which eliminated my ankle swelling.
I have far less Lyme rage, and am able to get the rages under control much quicker. My night time panic attacks have stopped.
I am able to drive a car again, for limited distances.
No, I have not been re-born, or anything as dramatic as what the sleep techs promised, but considering that I have had Lyme for over 21 years with no ABX at all, only herbals, I am amazed how much CPAP is helping me.
Insurance pays most of my costs. I do have to pay rent of $18.70 per month, plus a small copay for supplies. The only supply I have needed to replace often is the chinstrap, at about $6 per strap. If you do not mouth breathe like I do, or if you can use a full face mask, you would not need a chin strap at all.
I would definitely give it a good, long try if I were you. If not, I would have a repeat sleep study in a year, to make sure the problem has not gotten worse.
Best wishes,
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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butchieboo
Unregistered
posted
Klutzo,
Why that's just amazing you achieved all of that without the use of antibiotics....
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote: I don't see how apnea can be directly blamed on Lyme in the brain, unless it is central apnea.
I think there are a number of reasons that lyme can cause obstructive sleep apnea.
Lyme affects brain chemistry and brain chemistry is implicated in obstructive sleep apnea. Lyme also affects muscle tone, may make one more prone to allergies and can cause a sore throat and swelling in the throat. All of these things could cause and/or contribute to sleep apnea.
Remember that sleep apnea is a fairly new entity and there is much that is not known.
Obstructive sleep apnea and brain chemistry.
Borrelia biotoxins lower acetylcholine: http://www.townsendletter.com/FebMar2006/lyme0206.htm "The action of botulinum (as well as the toxin from the Lyme spirochete) is to prevent, through its action as a proteolytic enzyme, the release of the neurotransmitter acetylcholine."
http://www.sciencentral.com/articles/view.php3?language=english&type=article&article_id=218392013 "We found that the lower the dopamine, the worse the REM sleep behavior disorder; and the lower the acetylcholine, the worse the obstructive sleep apnea," says Gilman. These patients actually lose the brain cells which produce the chemicals. We controlled for which chemical in the brain was causing which disorder, so only the dopamine is related to REM sleep behavior disorder, and only acetylcholine to obstructive sleep apnea."
I also have fibromyalgia caused by lyme and I was surprised to see a number of studies that connect sleep disordered breathing with fibromyalgia since as far as I can tell, it is not a well known symptom of fibro.
There may need to be other factors involved besides lower acetylcholine such as throat swelling or muscle tone problems etc.. but in my view, there are many problems that lyme causes that could well tip someone over into sleep apnea.
That said, sleep apnea is fairly common in the general population from what I've read. Many people don't know that they have a mild form of it though.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
butchieboo wrote:
quote: I guess I'll have to get one and give it a try!
You can only buy a machine through a prescription from your doctor. Your doctor will require a sleep study and proof that you actually have sleep apnea.
quote: Why that's just amazing you achieved all of that without the use of antibiotics....
and a CPAP machine is what did it for you?
Sleep apnea and sleep deprivation mess with brain chemistry and hormones and really mess your body up. A number of lyme symptoms are no doubt related to lack of sleep, REM, etc.. No big surprise that getting better sleep will reduce symptoms.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Bumping this up for more discussion.
For those who have tried it, how are you doing?
Best wishes to all.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
oxygen desaturation is also very important with OSA
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