posted
My debilitating Lyme problem is non-restorative sleep.
I have read online about others w/ Lyme getting sleep studies done which always show that they are not being allowed to get into REM sleep stage (deep sleep) & that they are being almost woken-up over & over & over all night long. That their brain can no longer just go to sleep, stay asleep, & be in a deep, deep sleep.
What is the cure for this ???! I have not had a dream in 12 years because I'm not getting any REM sleep! I'M SO TIRED.
Have any of you taken natural stuff to cure this problem? HOW DO YOU CURE THIS PROBLEM??
Posts: 83 | From Minnesota | Registered: Jan 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I assume you are being treated by a LLMD. ?
Can you consult with a LL ND (naturopathic doctor) for support issues?
I had a sleep study that was a waste of time.
Although I got only 16 minutes of sleep, the doctor said I really did not NEED REM sleep.
Due to hyperacusis, the noise at the hospital was just too much -- but the doctor said I must have been schizophrenic to be bothered by sound shtat others thought were just slight - the trucks unloading at the dock beneath the window, etc.
I was repeated awakened with the alarms went off in the adjoining rooms when other test patients stopped breathing.
They actually wrote "schizophrenic" in my chart as they had no other explanation for the effect of sound on me. CLUELESS to how hyperacusis is a hallmark of lyme.
They had to leave a 40-watt light bulb on in my room for the camera to work. They offered no eye shades - and never advised me to bring my own.
Bathroom? Can you disconnect the tethers to go the bathroom? I asked beforehand and they said "yes" but when I got there they said "no" -
- so I held it as long as possible and then had to use a bedpan on the floor next to the bed - while trying to keep the wires all straight. It filled and the attendant spilled it when removing it.
Ridiculous at every turn. They made a fortune from the test and all I got was the diagnosis of crazy for not being able to tolerate the environment.
If sleep apnea is suspected, get one. But - if at all possible - ONLY with a Lyme literate doctor and clinic.
Ask your LLMD about a referral - or even if it's needed. It may not be necessary. We KNOW sleep is messed up. Unless breathing is the problem, we don't need a fancy test to tell us that.
If it's other issues (as are so common with lyme), I say save your money and effort. Lyme and other TBDs just clobber sleep and most sleep experts have no clue.
MAGNESIUM and FISH OIL are key.
LIVER SUPPORT is vital to good sleep.
Is your bedroom free of electronics? That's the first step. SLEEP HYGIENE matters.
For herbal support, it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present. ------------
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
My hubby recently tested positive (energetically) for Babesia. Sleep or lack thereof has been his biggest symptom for the last 7+ years. No sleep med or herb or tea has ever helped him.
Someone suggested he see a Chinese acupuncturist so his first 2 visits were this past week, Wed and yesterday.
He woke up this morning and said, "Wow, I got a good night sleep."
Amazing...haven't heard those words in a decade!! I almost fell out of bed!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
My sleep improved ALOT when my LLMD started me on bioidentical hormones.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i use vistaril-i dont thingk anyone else here likes it but it works great for me...i saw it help my mom when she had high anx and insomnia from lyme at the end
the generic doesnt work...it is an older antihistimine with anti anx properties and it somehow stopps me from having to pee so i get really good slleep...and dream...used to take 1 now 2 and accationallhy 3...sorry hands extra bad
i sleep long and well and i am not spacy in the morning
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The lyme doc who got me well said that lyme affects the sleep center of the brain.
Once he gave me good lyme treatment, my sleep problems went away. I had had them for years thanks to lyme.
By the end, they were so bad that I would finally fall asleep about 1 a.m. and sleep 20 minutes, wake up, sleep again 20 min, on and on for about 1 hour. Then, fully awake the rest of the night.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Thank you so much for taking the time & effort to give me so much help & information!
I'm going to try everything you've suggested.
I really appreciate your help, so much. Jennifer
Posts: 83 | From Minnesota | Registered: Jan 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
My insomnia wore me down. I got absolutely no restorative sleep. Adrenal support helped me a lot (Keeblers link). I also take a melatonin every night before bed (works for me).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Interesting enough though, remembering dreams has returned due to something else I'm doing - doing FIR saunaing in a portable tent every 5 days is detoxing me and that's how I'm getting dreams back. Odd, isn't it?!
Posts: 13117 | From San Francisco | Registered: May 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I've been in treatment for almost 7 months. After starting rifampin and doxy, my sleep improved gradually (I get 5 hours of straight, deep sleep usually before waking at 3 a.m. and then sleep is light, if any).
My dreams have finally returned after a very long time. I think it is the Lyme and Co. that has been causing sleep problems I have had for years.
Posts: 2386 | From New England | Registered: Aug 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
dbpei, the same thing happened to me with doxy/rifampin (2 mos).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Has you doctor tried to address this problem with medication? If so what have you tried?
Posts: 833 | From Somewhere | Registered: Nov 2010
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posted
My husbands LLMD first gave him Ambien with Melatonin. That didn't work so he gave him Lunesta with Melatonin. That hasn't worked either. He only sleeps an hour or so at a time
Posts: 305 | From United States | Registered: Nov 2011
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posted
My sleep has been worse than normal (which was already awful) since I started my latest three abx. I go into dream states but wake up over and over and over and have the weirdest dreams. Is this part of herxing does anyone know? It's like a form of torture to wake up so many times every night for years and especially to see it get worse when we know we need sleep so desperately. It definitely messes with my mind, let alone my body. I've tried everything but have found nothing that helps other than xanax and I don't want to become dependent on that so I try to limit it.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
I also use FIR sauna tent at least once a week, twice if I can handle it.
I always sleep better during the night on the days I do the sauna.
Tried Ambien; then the weirdest thing happened. My little dog started getting into food at night, or so I thought.
My husband purposely stayed up later then me one night, after I'd taken the Ambiem.
*I* was getting up and eating and sharing with the dog. I had absolutely no memory of doing that. Scared the you-know-what out of me. Posts: 331 | From West Coast | Registered: Jan 2012
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posted
LOL debilyn:) Did you ever find anything that worked? Or, is it just a matter of healing lyme?
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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quote:Originally posted by lpkayak: [QB] i use vistaril-i dont thingk anyone else here likes it but it works great for me...i saw it help my mom when she had high anx and insomnia from lyme at the end
the generic doesnt work...it is an older antihistimine with anti anx properties and it somehow stopps me from having to pee so i get really good slleep...and dream...used to take 1 now 2 and accationallhy 3...sorry hands extra bad
i sleep long and well and i am not spacy in the morning
- Yes, it DOES help the urinary problems!! I took that for many years when my IC was at its worst. It helped!
My sleep plan:
200mg of trazodone 1/2 tablet (10mg) of Ambien 1 3mg time released melatonin
When I wake up 2-3 hours later, I take the other half of the Ambien.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I have hopes for this new pill still in clinical trials. I'm sure it will be a while before it gets to the FDA for approval and then it might not be approved.
Keebler, your sleep study experience was even more of a nightmare than mine. And then to be diagnosed as schizophrenic!
I told them when I got there that I would not be able to fall asleep. After an hour they brought an ambien.
Actually, I was glad I did it because it verified for me that it was Lyme that had messed up my brain. I had very little REM sleep and it showed alpha wave intrusion which they said could be due to pain.
The hour I lay there, I could hear the man in the room next to me snoring, the observer coughing and people walking in the hallway which drove me nuts.
Posts: 1297 | From USA | Registered: Dec 2002
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posted
Marz... I've never had a sleep study, but I'm sure the same thing would happen to me. I can't fall asleep on my own. And if I do, it's not true sleep. I feel awake the whole time.
It is rare that I can even take a nap. (exactly why I am AWAKE right now!) Would love to have a nap!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
High cortisol can cause problems with sleeping. I have high cortisol at night and have been sleeping so much better since taking seriphos 3x per day.
The test that I think is the most useful is a saliva test done by diagnos-techs. My ND ran it and found out my cortisol is too high in general. This causes issues with blood sugar as well as sleep problems and a lot of other problems.
Ones cortisol should go down at night but mine doesn't. Same with my sister.
A sleep study is worth doing. I found out I have sleep apnea. I use a machine at night to hold my throat open so I can breath.
I found a private doctor who takes medicare but has his own sleep lab. He has a suite of rooms and only one tech who has an office down the hall. Each room has a door and privacy. It was not easy but dooable.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
About the nap--me too, tutu!
I am so jealous of people when they mention they've taken a nap. I really miss that delicious feeling of drifting off!
And when I mention I'm so tired and they'll say, 'go take a nap" it makes me feel so abnormal to know I can't!
Posts: 1297 | From USA | Registered: Dec 2002
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Almost forgot one the best things I ever did was start taking folapro. I used to wake up often - sometimes every hour. Never got more than 2 hours of sleep at a time. Folapro (active form of folic acid) lets me get 4-6 hours of sleep without waking. That made such a difference in how I feel. I do have both MTHFR issues that are talked about at lymenet.
Everyone in my family sleeps better on folapro.
Finally after 15+ years of lousy sleep I get 5-7 hours of sleep a night. Makes a HUGE difference in my ability to function.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Terry.. I'm on cortef for low cortisol. Only 10mg
My cardio sent me to a pulmonary Dr to be evaluated for a sleep study. Pulmonary Dr said I had virtually no indications or risk factors for sleep apnea.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Jennifer - That was my worst symptom too. I'd be up half the night with horrible insomnia then felt inhuman in the AM. But then despite being exhausted, I'd ramp up again at night.
It was due to "Adrenal Fatigue" (google it - there is a book on it), which was due to the Lyme. Basically the Lyme turned my body clock upside down. I did an Adrenal Recovery program which helped immensely. I also take Flexeril (a muscle relaxer) at night - helps with the muscle aches and makes me drowsy.
I'm betting that some of my improvement was just also from gradual progress with treating the bugs. Now I still do get more tired than a healthy person but the improvement over where I was 6-9 months ago is huge. We really need our sleep to get well so fixing the sleep should be a major goal.
Posts: 1737 | From Virginia | Registered: Aug 2011
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
tutu- did they do a test to see if your adrenals fluctuate the way they are supposed to? This would mean in one day they would test your cortisol in the morning and evening?
"Adrenal fatigue is characterized by cortisol levels that are too high at night and not high enough in the morning."
That is exactly what my sister and I have. High night cortisol levels will keep you from getting a good nights sleep.
I had none of the typical indications for sleep apnea except coughing at night and not sleeping well. If I had not been overweight I don't think they would have done a sleep study.
Lyme disease in my opinion is a risk factor but since you've been misdiagnosed with fibromyalgia maybe you can use that. There are studies that show that fibromyalgia patients are at risk for sleep apnea.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Mine was low in the morning and higher by afternoon... I think. It was a saliva test.
and yes, since I'm thin I think he really marked it off his list
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
tutu - if it were me I'd get tested again while on current meds to see if the night cortisol levels are normal now. If not, I'd get to a doctor who could help fix the problem. More than likely that will be an N.D..
Seriphos and folapro are not prescription. You can order them on-line. If you need them, they can be really powerful. Be very careful if you try them and go slow.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
A product I have been very happy with is Calms Forte by Hyland's. I have been using this for about 2 months and it helps me to stay asleep during the night.
It was very rare that I could sleep through the night, it probably had been a couple of years that I had done so. Now I am sleeping thru the night 2-3 times a week. When I dont, I am only waking up once a night. This has made a big difference for me, and I can't say that about many pills I take.
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