The body that cannot rest

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Regular Member

Date Joined Jun 2007
Total Posts : 417
   Posted 3/5/2009 3:32 AM (GMT -6)   
I am putting out a personal plea for help.  I'm not sure what I need (a Pituitary Specialist, a good sleep clinic, etc) .  It's not just that I'm not sleeping, I am having this traumatic sleep-wake experience going on for about a year now.  My body cannot take much more of it.  I have been doing so much to try to alleviate the symptom.  I have been to sleep clinics and doctors who don't seem to know what to do to help this symptom.  I wish I believed that if I 'pushed through', this symptom would go away.  It's just too traumatic.  I have such severe twitching when trying to sleep and when waking up, and I am being awoken all the time with sudden extreme dry mouth (and then some head pain).  Over and over.  I can't seem to treat whatever underlies it, it makes the partch and twitching worse.  This includes Antibiotics, anti-cholinergics, anything water sapping (the worst was Xyrem- too much sodium?).  I had my worst trauma when on that. 
For someone who has never needed sleep medication, I am now taking up to 8mg Ativan at night, trying Melotonin, L-Theanine, L-Triptophan.   Have tried much more.  I have been bringing ideas on what to do to my doctors (pretty much the only ones who stick with me through this symptom), but the things I suggest 'are not their specialties'.  Can't find a lyme friendly endocrinologist.  I know my Anti-diuretic hormone is consistently low and my osmolality is a big issue.  I know that my intracellular electrolytes and their ratios are off.  I know that i have waaay too much chloride in my cells.  I believe low magnesium might be an issue (the IM shots don't help, can't afford 3x/wk IV pushes (which might be the only thing to test to see if this is part of the issue).  I also get extremely hot during the night.  I am too young for menopause.
I also know that I can't go on much longer like this.  It's too painful, energy sapping, etc.  Even though I think Jackie Springer's book might help, I am losing the cognitive functioning to read it for myself.  And to do much more research for myself at all. 
This symptom will occur during the day if I try to sleep.  So my body just cannot rest.  I do not have joint pain, do not have muscle fatigue, do not have daily body pain, save weight bearing foot pain and weight bearing costochondritis.  Do not test pos for Sjrogrens.  Did have severe dry eye during the day, but found a lyme literate opthomologist who has given me 2 antibiotic ointments due to finding infections in the backs of my eyes.  The dry eye 'attacks' that would come on suddenly during the day are diminishing (it has been 3 weeks).
Sorry for the whole story here.  I am just at a loss.  Help would be appreciated.  Thanks so much.
Tracy Hans, MS, LPC
(Licensed Psychotherapist)
Director, Therapeutic Alliance Group, Inc.
Lyme, Mold, Bartonella patient

Veteran Member

Date Joined Nov 2008
Total Posts : 759
   Posted 3/5/2009 3:41 AM (GMT -6)   
Are you taking magnesium? This will help with the twitching and spasms.

Also, ask your doctor to prescribe some flexeril. As long as you're not on antidepressants, this wonder drug will relax your muscles and make you drowsy.

Cut out all caffeine if you drink it. Or skip to tea. I am a fellow insomniac and I now know that what I'm doing is drinking coffee. It's a vicious cycle. When I eliminate it, I sleep and feel good. But I'm addicted to the adrenalin boost I get.

Regular Member

Date Joined Jun 2007
Total Posts : 417
   Posted 3/5/2009 4:04 AM (GMT -6)   
Hi, thanks for respondng so quickly.  Yes I take magnesium, but I think just enougth to feed the bugs. It doesn't do a thing for me. Oral isn't enough.  Nor is IM (well I have only tried it a few days).  I think IV pushes might be helpful but I'm unsure the expense is worth it to findout.  I might be twitcing from lack of proper hydration.
I don't drink coffee or have any caffeine.  I am eating very little sugar (no refined at all).  I am eating vegetables and protein (paleolithic diet).  Off of all dairy, gluten, grains, nightshade vegetables, etc. 
I will ask for Flexoril... might calm the twitches, right?
Thanks so much, Tracy

Regular Member

Date Joined Apr 2008
Total Posts : 266
   Posted 3/5/2009 11:53 AM (GMT -6)   
I too have a horrible time sleeping. I was just thinking about asking my doc about Xyrem. But Tallison, it sounds like you did not like the drug. Can you give me any feed back about it?

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 3/5/2009 11:56 AM (GMT -6)   
Lyme will keep you up at night and every night. And until you get it put at bay in your system this is going to be a big problem for you.
I take ambien 10mg. And it works. It is the only thing that worked of me. But zanzx 1. worked for my 12 year old who could never sleep either.
So...yes they are both addictive...but honestly...what need to function and gets a good nights rest already.
and do not take any magnesium if your are on kills it.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

Regular Member

Date Joined Jun 2007
Total Posts : 417
   Posted 3/6/2009 7:51 AM (GMT -6)   
Thanks for all the info.  Seeingstars, I think that my problem wiht the Xyrem was that there was too  much sodium in it, and I have a problem wiht my intracellular electrolytes.  I had a severe reaction, but I think that is very rare.
I know a few people who got a lot of help from it.  Please keep me updated from your end!
Ambien and Xanax don't touch the partching/dehydration issue that is most daunting througout the night... I wish it did. 

Veteran Member

Date Joined Feb 2008
Total Posts : 900
   Posted 3/6/2009 11:04 AM (GMT -6)   
I really feel for you. It is horrible to be going through a year of sleeplessness and feel so tired and drained all the time. I believe it is the bartonella that is doing it because you also have dry eyes and sore feet. I hope you are seeing a LLMD for treatment. I am on Levaquin which is helping me. It is the drug most recommended for BLO by Dr. B. But when you aggresively attack bart, the sleeping can worsen although for me, my mental clarity improved and I began to feel more connected with myself. I also quickly regained energy and motivation.
I take Zhang's Herbsom for sleep and it is VERY helpful with no side effects. It contains corydalis root which, if you research online, has half the potency of the most powerful drugs without the side effects. In fact it is beneficial. Valerian helps relax the muscles and promotes sleep so that might help you. Is is important to rotate natural remedies you are using. Some other's to try are scullcap and L-triptophan. I would stay away from chemicals like Ambien because the side effects are bad and they are addictive. You will develop a tolerance to whatever you are taking so it is best to stick with rotating natural remedies when possible.
For the eyes use hyaluronic acid every day. You should see a big improvement in a week. It replaces collagen which is being eaten up by the bacteria. Be sure you buy a good brand from the health food store - one that does not contain chicken sternum or rooster comb.
I take 1500 mg of magnesium every day. Use a form like citrate as it is released over time and not just dumped into your system all at once. Take it towards bed time but check with how close you can take it with your abx as it will bind with many and neither will be absorbed.
Also take B vitamins, especially B12 and B6 which are depleted and wreck havoc on your nervous system. A B12 dediciency can cause muscle twitching and spams as well as cognitive problems. Take B vitamins in the morning as they are stimulating. You can have your levels tested with blood
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