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Posted 5/14/2013 5:04 PM (GMT 0)
Do all people with lymes have a hard time sleeping? It is so hard to try to go to bed at night knowing that you will be awake 3 times a night. Ever since I have had lymes a good nights sleep doesn't seem to happen much. I even take sleep meds! Plus all these herbal stuff to help. So to those of you who are well do you ever sleep again? It is so hard for me to go to bed at night and think...............tomorrow I have to wake up and fight this battle again.

I know bad attitude but its so hard to want another day. Especially when once you wake up all you do is watch the clock to take your meds and then detox! I guess that is my job in life!!

Just feeling sad will it ever end?!  Andy sad

Posted 5/14/2013 5:12 PM (GMT 0)
Funny you should mention this.... I was awake all night last night. Literally, I haven't slept since Sunday night and I haven't slept "well" for 30 years. Always more tired in the morning than when went to bed the night before.

Oddly, I'm at work and I haven't had a problem staying awake.
Posted 5/14/2013 6:00 PM (GMT 0)
Andy, I have said so often that this disease is like the movie "Groundhog Day". I know that I experience sleep, but it is FULL of crazy dreams and I often wake up feeling unrested. I also wake up and get crazy anxiety, every morning, at 5:00 on the dot. Over the course of the day, things get a little better, but I feel like crap every morning. Sometimes I even go to bed feeling normal! But come 5, all bets are off. It so sucks!

I feel ya. I was doing really well for many months and now something is changed. I don't know if these bugs have come out of hiding, but I am feeling very discouraged. Will it ever end? I'm beginning to wonder the same thing.
Posted 5/14/2013 6:57 PM (GMT 0)
Kimomile I am totally with you.......that is the same with me. I tell my husband just when I start to feel some what better I have to go to bed. I wake up too with the anxiety. Your right it is just like the movie Groundhog Day!!! I will remember that when people ask me what its like! Dumb question huh?!

Do you take sleep meds? I have too or else I run like a energizer bunny. My body never wants to rest except when I don't want it too!
Posted 5/14/2013 10:32 PM (GMT 0)
You should really have your adrenal glands checked out! What you are describing could easily be caused from low functioning adrenals. www.stopthethyroidmadness.com/ is a good site to help determine how your thyroid and adrenals are working.

As for sleeping, I've had to use medication (the only pharma med that I have been on for the last 2 1/2 years) and even then it was sketchy whether I would actually get enough rest.
Posted 5/14/2013 11:34 PM (GMT 0)
I sleep a lot better when taking vitamin D-3 and Magnesium, but there are folks who say stay away from the magnesium.
Posted 5/14/2013 11:47 PM (GMT 0)
I have a hard time sleeping- insomnia. I am tired all day and seem to wake up more late night. It is like my clock is way off. I had a sleep study and it indicated I am waking myself up several times a hour due to restless limb syndrome. Of course the doctors don't know what causes this (no surprise) but I feel as though this has something to do with the muscle spasms, and twitches, that my body is constantly getting. Also, I can see pulses throughout my body. I have heart palpitations and tachycardia.
Posted 5/14/2013 11:51 PM (GMT 0)
Ok, Traveler I am going to I go to the Dr. in 3 weeks. I will now have lots of info to share with her.
Thanks for the information!!
Posted 5/15/2013 12:25 AM (GMT 0)
My dr put me on an aryuvedic med called Sumenta and it's the first thing that has helped me sleep.
Posted 5/15/2013 1:42 AM (GMT 0)
Sumenta is one I've never heard of and I've been in the vitamin biz for about 17 years. I'll have to look that up. I just brought in a product called Lean Dreams and both nights I took it I slept like a baby. It's supposed to be great for falling asleep but it's not long-acting so it wouldn't be good for those people who tend to wake up too early. The positive to that is you don't wake up groggy. Best product I've tried that's not a drug.
Posted 5/15/2013 2:27 AM (GMT 0)
My daughter could not go to sleep until about 3-4 AM. She always woke up feeling like she had not slept. That did not improve until she experienced a general over improvement in her condition. Melatonin, GABA and 5HTP may have helped a little.

Don
Posted 5/15/2013 6:27 AM (GMT 0)
ugh, i dont sleep well, even with the med. yes the dreams, and nightmares... dont leave you feeling like you slept at all, and sleeping is supposed to be our break from the pain... waking up sweating too. its awful. at least in grounhogs day he wasnt in pain and agony, just irritated. sleeping has been a nightmare for a long time...
Posted 5/15/2013 10:54 AM (GMT 0)
not sure if lyme caused the no sleep, or if no sleep caused the lyme?
the no sleep was by far the earliest complaint of mine, followed by a pain in my right wrist.
its been over 10 years since it all stareted.
Ive never found any herb thats helped.
Posted 5/15/2013 6:05 PM (GMT 0)
Traveler is right get your thyroid/adrenals checked once I addressed that problem and adjusted my female hormones with bio identical ones I started to sleep again. I even have normal dreams again. Occasionally I take melatonin or advil pm if I have a headache. But lately have needed nothing.

good luck...we all need our sleep!
Posted 5/17/2013 3:28 AM (GMT 0)
This was a major problem for me. My LLMD gave me a prescription for trazadone and clonazepam and they have worked wonders. My wife just laughed when I was excited that I slept from 11pm- 5am without waking up for the first time that I can remember.
Posted 5/17/2013 4:49 AM (GMT 0)
Sleep? What's that?? I've had insomnia since a very early age...

But in the last few years, it has gotten so bad I often can't fall asleep at all during the night, and find myself awake until 6am or even later...and sometimes I don't sleep at all (i.e., go for 24 or more hours with no sleep).

I've tried many things (sleeping drugs, melatonin, etc.) with no help. The only thing that helped some was GABA, and then I started getting side-effects and had to stop taking it.

My family often jokes they're going to get a mallet and bonk me on the head to get me to go to sleep...I think that's about the only thing that'll work!

Yeah, I've had adrenal & thyroid testing. Thyroid is 100% normal (TSH = 0.75, no anti-thyroid antibodies, normal free T3 & free T4) but my adrenals are not...and yet, every time I try adrenal support (rx or natural), I can't tolerate it and have to stop.

My next experiment, when I get past this current bout with severe unrelenting nausea (Gastroparesis flareup), is essential oil of German Chamomile... This oil is supposed to calm down the adrenal excess at night...
Posted 5/17/2013 4:13 PM (GMT 0)
wow!! We are all a mess!! Glad to hear I am not the only one. We should all do chat online when were up at night!! This was my very first system that was my problem when I first got sick 2 years ago. I used to think before we knew I had lymes to exercise.............so I would exercise 2 times a night which made the whole thing worse>.......Hopefully we will all get better and sleep soon. Thanks everyone Andy
Posted 5/17/2013 11:17 PM (GMT 0)
Hi guys, for those of us that do not have adrenal issues in that cortisol is not the cause of our insomnia, some may fit here like I do.

I went and saw a well respected LLMD across the border in the US to make sure I was on the right track and I could finally talk without stuttering about 80% due to enchaphilitis and one of my list questions was "what is the science behind insomnia, broken sleep, frequent awakenings etc when it is NOT adrenals affecting it?"

I can feel the infection in my head. He said it was due to cytokine storms affecting hypothalamus so..................this says it better than me so I"ll just excerpt the link.

I can feel the brain ammonia too though much lighter now so I'm sure that can factor in, the toxins plus cytokine as well. Drag huh?

Mine has been debilitating since 2010 of Oct but since adding rifampin it's starting to go longer but of course broken so hopefully the bartonella load down will help me more.

http://ndnr.com/web-articles/anxietydepressionmental-health/hidden-causes-of-insomnia/
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Undiagnosed Infections

An infection typically results in an immune response that includes T-cell activation, the release of cytokines, and the production of immunoglobulins. The immune system responds to an infection by mobilizing antigen-presenting cells, engulfing the infectious organisms, and then presenting parts of them to T cells. T-cell activation results in the differentiation of cells that in turn promote cellular (helper T cell, subtype 1 [TH1]) and humoral (TH2) immunity.

Proinflammatory cytokines are released, which can lead to hypothalamic dysfunction, stimulation of norepinephrine release, and alterations in the sleep cycle (illustrated in case 1).

The TH2 stimulation results in the activation of B cells and the production of immunoglobulins. Immunoglobulins against certain infectious pathogens have the potential to cross-react with cellular receptors, including ones expressed in the brain (illustrated in case 2).
Posted 5/17/2013 11:22 PM (GMT 0)
This is from the link too, it's about lyme. And below that in the top link it talks about the effect from the GUT as well.


Case 1

Lyme disease is caused by 3 species of bacteria belonging to the genus Borrelia (B burgdorferi, B afzelii, and B garinii), which have evolved to hide from a host’s immune system.

Biochemically, the elevation in cytokine levels and the alterations in the hypothalamic-pituitary-adrenal axis can manifest as anxiety, depression, and insomnia.

How bout that?

=========

And Gut, many of us sure have gut problems in this due to the pathogens too right.

First Do No Harm (ie, Rule Out the Gut)

Investigations into immune disturbances are difficult, but this task becomes exponentially harder when a patient also presents with a compromised gastrointestinal tract. The small intestine is the largest internal immune organ, housing 80% of the body’s antigen-presenting cells, whose job is to patrol for pathogens and antigens. Once an antigen-presenting cell (dendritic cell, macrophage, or B cell) binds to an antigen, it undergoes maturation, which results in the release of large quantities of the stimulating neurotransmitter glutamic acid. Elevations in glutamic acid are neuroexcitatory and neurotoxic.

The excitatory effects of glutamic acid are typically offset by the calming and membrane-repolarizing GABA, but this balancing act can become overwhelmed and result in excitability and insomnia (illustrated in case 3).
Posted 5/18/2013 5:09 PM (GMT 0)
Wow that was a lot of new information I have never heard of before. Thanks for the input. I have so much to talk to my LLND about now!!
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