I am coming to you without having any @#$%ing RESTORATIVE sleep for at least 2 weeks.

First of all, despite all the pills (Rx's and supplements) that I throw down my throat before bed...I still have a hard time going to sleep. Many of my meds (pain meds, muscle relaxers, anti-anxiety) say "WILL CAUSE DROWSINESS".

Oh, bull@#$%!!! Not anymore! I swear I could take 2 Norco (that's a more potent form of vicodin) & a couple of muscle relaxers and be alert enough to do...MATH! (with a calculator, of course.)

Anyway, when I FINALLY DO dose off -- my sleep is very ACTIVE. I'm either doing a lot
flying or levitating, or I'm doing karate kung fu kind of crap (no offense to any martial arts...I'm just so ticked becuase I'm sleep deprived, besides I don't know any martial arts because trying to learn made my bladder disease - IC - flare up and offer to torture me for all eternity.)

The point is: What sleep I do actually get to have is very active - I'm dreaming - I'm kicking some @$$, working through my anger & anxiety issues in my sleep, or shopping for a new fixer-upper home from HUD.

Just as an FYI - I'm still having my high resting pulse issues (and not really expecting that to go away on its own anytime soon since I've had tachycardia for over 2 years and no doc seems to give a rat's @$$)

Friday, I FINALLY got to talk to my LLMD on the phone to ask his medical 'permission' if it was OK to take a sleep medication that the chronic fatigue/fibromyalgia doc has prescribed, which was delivered to my door that very day.

LLMD says very sternly: "NO"! "YOU'RE FAR TOO SICK TO TAKE SUCH AN ADDICTIVE MEDICATION."

I sweetly asked, "Is it becuase you're afraid it will affect my T3 or tachycardia issues?" (Ok maybe I didn't say it real sweetly - but this is MY story...)

I think he said "NO" again -- just reiterating how sick I was, blah blah blah and then he said:
"Get the chronic fatigue doc to prescribe you something else for sleep. I know he's out of the country..."

(Chronic Fatigue doc won't be back until 8/15. Friday was 8/5.)

And so I waited for LLMD to step up to the plate and offer some other mircale sleep aide.

NO!!!!! NO, he did NOT! Instead he said, "OK, so I'll see you again in 2 weeks. Goodbye."

WHAT THE @#$% ?????

Now don't get me wrong, I generally LOVe my LLMD because he's in the process of saving my life....with that said, however, that doesn't mean that he doesn't thoroughly p*ss me off from time to time.

I just don't know what to do.

Last night I even took an OLD PRESCRIPTION SLEEPING PILL. Now you just take one guess as to whether that little pill helped me.

And then DESPITE my pain medication -- my pain even contributed to keeping me awake. And then of course, I started ITCHING like I must have a swarm of mosquitos under my bed...so I lied awake awhile wondering if I would now get West Nile and if because I'm so @#$% sick -- would it just do me in? '

I then got up and took a Benadryl. It helped make me sleepy - and I dosed off a bit - but it was that special anti-histamine NEUROTIC sleep - jerking awake every few minutes, tossing and turning.

I have ample melatonin at my house and am tempted to take it -- BUT since learing about the Western Fence Lizard and the connection between their production of melatonin & the fact that their blood can cleanse Bb infected ticks...I'm reluctant to take melatonin as I imagine (and have READ) that it is possible to cause kill off.

And what if the melatonin supplement caused TOO FAST OF A KILL-OFF....would the toxic build-up kill me off too? See my dilemma?

Can you people sense my DESPERATION?

So I am PLEADING for any advice.

Just know I will be FAXING my LLMD a carefully worded little note communicating my URGENCY to get some decent d*mned sleep!

And just wondering... Can someone drop dead from insomnia -- because there are moments that I think my body is just about to QUIT!

Also, has anyone ever gone into an ER and said
"I'm having a sleep emergency - Dr. Duck, can you help me out?"
(If not, I may resort to that out of sheer desperation... If so I will post it for your reading enjoyment.)

OK - this is too long and my fingers are even feeling the fatigue.

Thank you in advance for your input. I may be too tired to thank you later.

Wishing you many blessings, and sweet dreams for ME!

------------------
DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com
 

Someone a while back suggested taking a Calcium/magnesium/zinc supplement before going to bed. I added that to the benadryl that I have been taking for decades (or else I wake up sneezing) and it seems to help. I was taking calcium (tums) before going to bed anyway.
 

So if you use them judiciously--but its easy to overuse them.

Rats die of strange immune disorders when sleep deprived. Their skin peels off and they get infections that can't be conquered with abx. So your LLMD should take it seriously.

I doubt melatonin kills lyme. I wouldn't worry too much about it. But it IS a hormonal stimulant so be careful.

Trytophan works in some but in others of us who are infected it degrades into kynurenin (sp?) and thats bad for us.

I would go with temezapem or klonipin or something like that when desperate. But try not to use it every night all night.
 

My son is now taking Trazodone (100 mg) and it's working well for him.

------------------

 

Even the Ambien added to the mix wasn't getting me much restful sleep. Tried a few samples of Lunesta and it worked well, but I had a hard time waking up....with ambien I can pop up wide awake.

Don't be afraid of the melatonin. I've been taking 9mg of melatonin for a year or so. I've tried cutting back to 6 mg and sometimes that works OK, sometimes it doesn't.

I would think once your thyroid situation improves, you'll be able to get more sleep. Let's HOPE so! I hope you will call your LLMD Monday and complain bigtime!

You can't get well if you can't sleep.

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 

Hi Doc, had sleep deprivation real bad! Took Ambien and it only kept me sleeping 21/2 hrs., and then I'd wake up.

I was told to take 1/2 ambien before bed, and when I wake up take the other 1/2 and see how it works.

It worked some, but not what you'd call a healthy sleep. The lack of sleep is what kept me from getting anywhere near better!

Remember, you need good sleep to help your immune system fight!

I now take ambie to get to sleep and temazepam to keep me asleep.

It's the best thing that has ever happened! Wake refreshed, more energy, and motivated!

When I herx the sleep might be a little disturbed, but nothing like before!

I hope that helps! I think we all know that late neuro and sleep problems are prevalent!
Not to mention the psychiatric issues!

So get you wise... some sleep and feel better and refreshed!
Good Luck!
 

I would agree to use it judiciously.
 

So - anyone else out there with good insomnia tips - keep 'em coming.

I've got an arsenal of old prescriptions and supplements...and I'm not afraid to self-medicate if necessary.

And you can be sure my LLMD WILL be hearing from my miserable @$$ on Monday morning. I will most likely fax....and then CALL, CALL, CALL until I get some answers!

I am a desperate, CRANKY woman -- and I will be conveying that to him!

Thank you for sharing your insomnia stories with me. I shall think of you tonight.

Sweet Dreams to you all,

------------------
DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com
 

For my son, who is very resistant to sleep meds, the answer was taking combinations of meds. That is what I would do if I were you.

If you are having pain, you will not sleep. So medicate for pain. Then add in the melatonin, but that takes for some people, weeks to a month to start working. But helps to reset your clock to fall asleep at night.

For my son we ended up using a combination of a benzo (Ativan 0.5mg) and an antihistamine (Phenergan 25mg). Benadryl did not work for him nor did Ambien or Sonata. But it took a lot of experimenting to find the right combo.

I used to worry about addiction, but after watching my son struggle so much with sleep I no longer worried. I just wanted to help him to sleep.

You are right, you need to pursue this until you find an answer.

Best,
Karen
 

The insomnia is my worst symptom
at the moment--Not only am I sick
as hell-but I have to be awake threw
all of it--Jay--

 

I hadn't but it was suggested & I was dx with apnea & restless leg syndrome. Both studies showed 0 SLEEP LEVEL 4/delta! I'd been telling folks for 30 years I'd NOT gotten any sleep for restorative & healing my body.

Have a cpap machine, but the 2 masks I have are NOT comfortable at all so back to sleeping without it due to the extreme noise of it & my noise sensitivity problems due to lyme.....good luck!

bettyg
 

In search of answers for myself, I came across this web address recently: http://www.mercola.com/article/sleep.htm

I have not read the doctor's book, but have found some of his suggestions listed at this site helpful.

I hope this might be of some help to you. Also, my husband's suggestion to me has been to get sleep/rest break whenever I can. Thus, if I am able to work in an afternoon nap, I do. Then only getting four to five hours sleep each night does not seem so bad.

Best Wishes - Debbie/RI
 

This pathogen - via genetic research - shows it is "PFK dependent" (enzyme) AND uses Acetyl CoA.

That means...the brakes are off for glycolysis...this bug loves sugar and

this bug follows the cholesterol pathway...using the nutrients we need to make cholesterol...

But...

Acetyl CoA is used to make other things...such as acetylcholine, a neurotransmitter. Oh oh.

When acetylcholine drops, so does serotonin (-> melatonin) and dopamine.

Okay...now looking at the above...this explains the development of several other diseases, yes?

Acetylcholine is implicated in Alzheimers. Dopamine in Parkinsons. MS in the destruction of the myelin sheath (insulation around the nerves, made from cholesterol). Diabetes is just plain tiring out the insulin producing cells to keep up with the constant high level of blood sugar. The list goes on...

But...getting back to your sleep problem:

"When the supply of serotonin is exhausted, the result is severe insomnia,and a reduction in NREM and consequently REM sleep."
http://www.vitaminusa.com/nutinabsleep.html

ALL the neurotransmitters and neurohormones need adequate NUTRIENTS for us to be able to MAKE them. If the nutrients aren't there...bye, bye neurotransmitters.

Acetylcholine is needed for good REM (rapid eye movement) sleep. This is the time we make many proteins. REM sleep is alternated with nonREM /NREM sleep which is when melatonin (from serotonin) kicks in...

Now...getting back to melatonin...and the Western Fence Lizard...

How does melatonin work...exactly? We can't take the amts. nec. (large) because it "inhibits the action of acetylcholine" (http://joe.endocrinology-journals.org/cgi/content/abstract/69/1/1)...

But what if we could take other things that work the same way melatonin does?

There may yet be another path (besides several already discussed on this board)...

Go here:
http://www.nel.edu/pdf_w/23_2/NEL230202R03_Kvetnoy_rw.pdf
 

My doctor gives me Zanax because without it I would stay awake until I died.

With it, I relax and sleep for a decent amount of time.

Addictive probably.

Rehab is easy, lyme is hard.

I trust that eventually, when my brain starts processing information again, I might just understand that.

I believe you're on the right path and I'm trying to navigate towards it, but I live in a HUGE Lyme-inflicted FOG!

So, if you don't mind -- you keep on 'hollerin' at us - reminding us of those big words that we might have once known, and I'll bet before long you won't be all alone on the path to good health.

As for you Lymelady - I'm with you, honey! If it meant I could get 'caught up' on sleep, I think I'd lie and say I was addicted to something - anything - and just check myself into "The Betty" and let my insurance pay for my 'vacation'. Maybe they'd let me do crafts.

FYI - I'm now on a beta-blocker which has FINALLY decreased my heart rate to a comforting 80-90'ish (resting) - so maybe that'll encourage the rest of my body to slow down just enough to sleep & restore itself. A gal can hope.

Thanks to you both for the intellectual stimulation, AND the fantasy!

------------------
DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com
 

SO far that combo lets me sleep about 7 hrs, which is huge.

Adding Atarax has really helped.

Check out GABA also.

Good luck
Peace,
BJG
 

CANNOT do these if you've already started taking the Rxs (antidepressants).

This bug loves sugar and eats cholesterol nutrients like there's no tomorrow.

This impacts many things...esp. the neurotransmitter, acetylcholine which in turn impacts serotonin and dopamine.

We need to put the brakes on both the sugar and cholesterol pathways SIMULTANEOUSLY.

Mg does this and is, IMO, the safest route to go.

Other treatments mentioned on this board work too.

Go to the link I provided and look for HOW melatonin works. (We can NOT/should NOT take the doses needed, but other things may help - a LOT).

What does melatonin, produced by the Western Fence Lizard, DO to destroy Bb in the ticks feeding it?

How does melatonin work? The answer is in the link above. Skim it (the pfd) and look for HOW melatonin works.

Once again...CANNOT take massive doses of melatonin! It inhibits acetylcholine and we NEED this neurotransmitter.