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Why does Lyme cause Insomnia?
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Why does Lyme cause Insomnia?

Although I have done lots of research and know that Insomnia is synonymous with Lymes Disease, does anyone actually know why? My symptoms are primarily neurological so I do not have pain that keeps me from sleeping. I cannot fall asleep w/o the use of a prescription sleep aid and even then, I wake many times during the night only to wake feeling like I didn't sleep at all!! Just curious if anyone knows why Lymes causes insomnia and if it has those symptoms have improved once treatment was started.
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Avatar_f_tn
I understand that Lyme messes with the endocrine system, including the chemical release that makes one sleepy or not.  I don't know the details, but it's a common complaint.  Lyme also interferes with thyroid function and other aspects, as I recall.

When I am not doing so well, I find that I am groggy until 3pm, then I can work until 3am or later.  My whole body clock is off, but in a regular fashion.  When I am in remission from Lyme symptoms, I return to a more 'normal' sleep pattern.
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Avatar_f_tn
I don't know why that happens, I think JackieCalifornia explained it well. I feel exactly as she does (well, it's past 1 am and I'm up, was half dead during day, slept all day) . I started using melatonin and find that it helps me a lot to fall asleep and more importantly, to stay asleep. I take two different types: 6mg of extended release and 3 mg to dissolve in mouth. I kinda learned how much I need personally. I would not take more than 10 mg a night, and reduce dosage if  I feel more groggy in morning than usual.
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1210011_tn?1281475965
As Jackie says, it's a chemical imbalance. The introduction of these infectious diseases disrupts homeostasis in our systems.
We're out of balance, out of whack.

A growing field, Neuroimmunology, looks at the relationship between the nervous system and immune system (& immunology) and the role of cytokines in imbalance i.e. in study of parkinson's, alzheimers, MS...

"Neural targets that control thermogenesis, behavior, sleep, and mood can be affected by pro-inflammatory cytokines  which are released by activated macrophages and monocytes during infection.

Within the central nervous system production of cytokines has been detected as a result of brain injury, during viral and bacterial infections, and in neurodegenerative processes."

I read that the immune system, nervous system (particularly sympathetic NS) interact with the Hypothalamic-Pituitary-adrenal (HPA) Axis chemically.

When an external stressor, like the Bb bacterium, enters the picture, the HPA axis is prompted to increase ACTH. The HPA plays a critical role in stress response & sleep/insomnia. The resulting chemical imbalance is also responsible for mood changes and psychiatric diagnoses in lyme.

I think it's the increase in ACTH in particular that is associated with circadian rhythm and also to adrenal fatigue/insufficiency seen in lyme patients.

Insomnia was my first notable symptom. I found that melatonin helped me sleep for 2 hours, filled with wild dreams but then I'd be up all night. I take low-dose Temazepam to help me stay asleep.
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1297538_tn?1278549702
Wow! You really know a lot about this! Thank you so much. It is hard to find specific information about these complex issues. Let alone, having a doctor explain them to us. Part of getting through this is about understanding what is going on in our bodies so that we can can make sense of it all.

I am currently taking some supplements under my MDs discretion to help get my adrenals back in balance. What you are saying absolutely makes sense especially how our bodies are trying to achieve homeostasis. It would make sense that an invader such as Bb would throw that process off. I have also had depression/anxiety, and lots of cognitive changes as well. I would imagine that most of this is a direct result of Bb and the neurotoxins it produces.

I have tried Melatonin and many other natural supplements to combat my insomnia. Insomnia was my first MAJOR symptom and by far the most difficult to deal with. Without sleep there is not much healing taking place as I'm sure you have experienced. I did notice that earlier on I was able to fall asleep with Benadryl and L-Tryptophan together but as time went on, that worked less effectively. Currently, I am taking Lunesta for sleep. I do not like taking drugs to sleep but it is the ONLY thing that seems to help. Albeit I only stay asleep for about 4 hours with the medication. I suppose it is better than no sleep at all!

Take care!
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I am a fellow insomniac.  Any time there is neurological issues, there are sleep issues.  It's impossible to sleep if your brain chemistry is off.  I slept ok until I was about 26yo, and I then developed severe panic and anxiety and insomnia.  Looking back, this all stems from Lyme and/or is agitated by Lyme .  I was a fairly healthy person until that age.

Now that I am pregnant, the insomnia is worse.  Again, body chemistry - hormones, etc.  I have to take a sleep med (Doxepin) even though I'm pregnant, which I hate, but it's supposed to be safe.  I can't function on one hour of sleep TWO nights in a row.  I can make it for one night, but it's downhill after that.  

Not only does the Lyme make it worse, then anxiety kicks in and makes me that much more worse.  Although I know, intellectually, that I won't die from insomnia, I get panic attacks and woo!  How do I think I'm going to sleep after that!?  That's where the blessed medicine comes in - and I'm like a new woman.
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Avatar_f_tn
I have recently been bit by an unknown assailent.  Three days into the bite...I got a "Bull's Eye" rash.  I had showed a Dr. at the clinic I work at and he prescribed me Doxycycline for 10 days for Lymes.  I figured that if it was Lymes...YEY...lets nip it in the bud...if not... it would treat the cellulitis.  3 days after I started treatment I started to feel wiped out and my knee didn't feel right either...no position but moving felt right.  I let my concerns be known to an RN (in the same dept. as the Dr.) and she attributed my crappy feeling to the antibiotics...sounded good to me.  So now, about 5 days after I've been done with the meds.  My pain in my knee has spread up and down my leg and it is just shooting with pain and I never feel rested and I am awake about 4-6 times a night.   I'm going to the clinic tomorrow and probably have the Western Blot done (for my own peace of mind)....maybe more antibiotics...and more information that I can't find on the computer...we'll see.  All of this information was extremely helpful and has eased my mind.
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Avatar_f_tn
Good for you for following up!  Let us know what happens.
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1210011_tn?1281475965
Katie,

Just be careful about a western blot test providing peace of mind. By the sounds of it (can't quite tell) you are less than a month out from the known bite and have taken abx - all of which could skew antibody test results anyway. you can come up negative on that according to the CDC surveillance criteria and various doctors and still have lyme.

Glad that you are taking the bull by the horn's and being proactive.
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Avatar_m_tn
I'm up now at 4:55am after having a whole 1.5 hrs of sleep.  It is great you have this post.  Thanks for letting me see your chat.  It has helped. I definitely had a Lyme's neurolgical issue....cehmisteree is offf
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Avatar_m_tn
Did any of you guys get head pain with the insomnia?

My insomnia is my primary symptom like clockwork from 9pm-5am.
I lay down, feel like I'm electrically shaking throughout my body, like a flickering lightbulb, my head throbs and feels like my brain is swollen and it wants to have a seizure and my chest is tight. I cannot sleep without sleep meds. If I get up and move around when I experience the pain starting I feel ok again, lie down to rest,...pain starts again and insomnia remains. The insomnia is torturous accompanied with the pain.

Did any of you guys have any luck taking anti biopics or anything else that helped eventually with the insomnia? and how long did it take before feeling any improvements?
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Avatar_m_tn
Wow, I cannot believe this but I'm 51 and have been suffering with severe insomnia since April 2014.  Started moving on to the more holistic route, switched to a holistic dentist who also is into nutrition, supplements etc.  He ordered saliva, 24 hr urine, special blood test. Results were 'subclinical hypothyroidism', normal cortisol, normal DHEA.  Anyway, still not sleeping and as you insomniacs know, very very difficult to do anything productive with little to no sleep.  Feel like I"ve lost 6 mos. of my life. Started seeing and acupuncturist a few weeks ago (go weekly, been 8 times and even did 1 month of chinese herbs with him). Still not sleeping, but at least acupuncturist and holistic dentist work synergistically together.  Acupuncurist isn't really working on the thyroid specifically but says I'm IN deficient my spleen big culprit, empty liver fire, fluid IN deficient...all that...says at least three months once a week before notable changes...be patient (ugggghhhhh).  IN the meantime, got off my butt, scheduled a visit at a holistic center that uses the Asyra Biofeedback machine.  Came back LYME's!  Thryroid fine, hormones in check, but adrenals shot (which explains my subclinical hypothyroid), showed a dental problem with tooth #3 (which has been bothering me), and a bunch of other things like a spinal cord map-alignment (I was born with mild scoliosis).  Got a homeopathy liquid vial that the machine, using specific frequencies, has changed specific to my needs and they are saying people are becoming Lyme's symptom free in weeks!  Not only that, but will take care of everything else.Feel like I'm in a sci-fi movie!
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Avatar_m_tn
Wow, I cannot believe this but I'm 51 and have been suffering with severe insomnia since April 2014.  Started moving on to the more holistic route, switched to a holistic dentist who also is into nutrition, supplements etc.  He ordered saliva, 24 hr urine, special blood test. Results were 'subclinical hypothyroidism', normal cortisol, normal DHEA.  Anyway, still not sleeping and as you insomniacs know, very very difficult to do anything productive with little to no sleep.  Feel like I"ve lost 6 mos. of my life. Started seeing and acupuncturist a few weeks ago (go weekly, been 8 times and even did 1 month of chinese herbs with him). Still not sleeping, but at least acupuncturist and holistic dentist work synergistically together.  Acupuncurist isn't really working on the thyroid specifically but says I'm IN deficient my spleen big culprit, empty liver fire, fluid IN deficient...all that...says at least three months once a week before notable changes...be patient (ugggghhhhh).  IN the meantime, got off my butt, scheduled a visit at a holistic center that uses the Asyra Biofeedback machine.  Came back LYME's!  Thryroid fine, hormones in check, but adrenals shot (which explains my subclinical hypothyroid), showed a dental problem with tooth #3 (which has been bothering me), and a bunch of other things like a spinal cord map-alignment (I was born with mild scoliosis).  Got a homeopathy liquid vial that the machine, using specific frequencies, has changed specific to my needs and they are saying people are becoming Lyme's symptom free in weeks!  Not only that, but will take care of everything else.Feel like I'm in a sci-fi movie!
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Avatar_f_tn
What are your plans for treating the Lyme infection?  It won't just go away by itself.  Your  bio doesn't say where you are located, but we can perhaps suggest ways for you to find a nearby Lyme specialist.  
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Avatar_f_tn
I have sometimes periods of somnolescence, sometimes OK, sometimes insomnia. I have been adjusting my thyroid medication slightly up or down but I cannot see any reasonable connection with my sleeping. I have not dared to change it more. It is mysterious why I occasionally have difficulty to fall asleep, then, someties, wake up many times or stay awake many hours during the night.

Maybe I should change my thyroid medication more -  or the issues are caused by Lyme or some other infection. I have not previously thought that Lyme could affect sleeping.
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Avatar_f_tn
Lyme messes with the whole endocrine system ... and everyone is different.  

I just searched online for -- lyme sleep -- and came up with a whole list of possible search terms suggested by the browser, including these as just the first list of suggested search terms:

lyme sleep disorders
lyme sleep disturbances
lyme sleep problems
lyme sleep apnea
lyme sleeplessness
lyme paralysis
lyme sleepiness
lyme all day
lyme sleepwalking

So yeah, you're not alone.  From what I read a while back, thyroid meds in particular need to have a steady dose over time, so changing it around too often doesn't give the desired effect and can just confuse the whole situation without giving relief.  Talk with your doc.  
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1763947_tn?1334058919
I was recently Dx with Lyme induced adrenal fatigue. My adrenals don't function properly and I am hypothyroid from Lyme. This all causes terrible sleeping issues. For awhile, natural products helped now they don't work. It's awful.
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Avatar_f_tn
I was on thyroid supplements for a while when I was first diagnosed with Lyme, but once Lyme treatment kicked in, I didn't need them anymore.  I hadn't had Lyme as long as you have, so it may not be as straightforward for you, but ... is your doc tuned in to the situation?
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Yes Jackie she is. We check blood tests every quarter when I see her. I hope mine straightens out too but the bugs may have damaged things too much since I have had it so long.
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Avatar_f_tn
I can so relate to what you are going through. I have had Lyme and other infections - many untreated - since 2002. For over a year now I have and am suffering from horrid sleep deprivation. Have tried all sleeping meds, natural stuff and all meds that are supposed to make me drowsy- NOTHING helps. I can go for many nights with 0 sleep and otherwise might get only 1 or 2 hours- 4 at the most. Cannot function. Go from the bed to the couch. Cannot drive for over a year. Lost over a year of my life.

have you found anything that helps? What infections do you have and what have you treated and with what meds?
Nancy
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Avatar_m_tn
Yes I am now seeing a LLMD. She is an Integrative medical Dr who will use both conventional and holistic/ homeopathic treatments. She is just about recovered from Lymes after almost a year. I am hopeful as she can attack from many angles
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Avatar_m_tn
Still getting the last bits of blood tests in from IGenex. Also had blood sent to Dr Patricia Kane (neurolipid.org) for her feedback on treatment with phosphatidyl choline as an adjunct treatment for Lymes.  Included with the price is a consult between her and my doctor. Look into Sleeptracks.com Nancy. Uses brain entrainment pulses and sounds to re-boot your brain so to speak. I was on Xanax restotil ambien lunesta trazadone. Was figuring out a different cocktail every night because I was so afraid of becoming addicted. Have now just been taking Trazadone,but only 25 mg ( used to take 200 mg). I really don't even need that. Don't think it's doing anything. Think it's more psychological really. Also my doctor put me on hormones immediately. Says I can come off whenever I want but thought the progesterone would help with sleep. But the sleeptracks were a God-send. Felt like I took a Xanax from the first time I listened. I still have issues but not nearly as bad (last night was bad only slept for three hrs but think it was extra worrying and heavy eating (gluten that I shouldn't have) that night with 2 glasses of wine ( that I shoulnt have). Go to Sleeptracks.com. 77 dollars can download digitally   Let me know
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Avatar_m_tn
Anyone have experience with low dose naltrexone ? My doctor wanted me to get started on that but I have refrained. From what I've read, extremely effective for immune system boost for Lymes and other diseases. Virtually no side effects, people having amazing results and feeling so much better. Some complained about sleep disturbances so I freaked. That's all I need. But my doctor insists that that only happened in like 3% or so of people.  She thinks I should try it
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Avatar_f_tn
Good morning all.  No sleep, first time in a long time for me.  In my case it was a larger than normal dose of my quinolone containing herbal.  Oh, and the mouse in the wall that started scratching every time I got close to sleep.  Otherwise, it's always been too much sleep for me!  
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