I have an appoinment next week to see a Sleep Specialist (he is a neurologist that only handles sleep issues).
I'm going in, assuming he will not be LL.
Any suggestions of things I should go armed with in order to convey the type of thing he should be looking for with and/or encountering dealing with a patient with TBDs?
I don't know where to look for proper documentation or convincing research.
Yes, it's really late and I'm still awake but not clear enough to be able to figure out where to look for this stuff on my own.
What would be most convincing and helpful in this circumstance? Any and all recommendations (or, better yet, pointers on where to look for what might be helpfull) would be deeply appreciated.
(I had a sleep study done some years ago and have no apnea, restlest legs, etc... My study read... A distortion in sleep architecture... something about prolonged stage one sleep. I can look it up exactly in the morning.)
Sleep issues have been my worst and most consistant, and worsening symptom, for over 20 years.
Sorry so long... thanks for reading this and more thanks for any direction anyone can provide.
trueblue
[ 22. May 2006, 08:41 PM: Message edited by: trueblue ]
Posted by trueblue (Member # 7348) on :
ps. I'll do all the appropriate searches in the mornig but thought staying up all night to do them a less than brilliant idea.
pps. I wanted to get his down before I forgot about it.
thanks for your patience!
Posted by trueblue (Member # 7348) on :
Anybody have any ideas where to look for this type of information?
(I'm not making much headway, I don't know quite where to look. It doesn't google well.)
Someone wanna spin me around and give me a shove in the right direction? Posted by ShelleyA (Member # 49) on :
Only thought I have is that you might be lacking tryptophan. The amino acid that is in turkey and milk.............
Posted by Foggy (Member # 1584) on :
I had similar results and it really bemused my sleep MD. He was pretty open minded and spoke to my LLMD on the phone. He agreed w/my LLMD that my "fragmented sleep" swould improve w/Lyme & Babs treatment, which it did.
We also tried cortisol suplimentation based on adrenal tests. It helped give me a full night's sleep.
Posted by trueblue (Member # 7348) on :
Thank you, guys!
I believe this will resolve with treatment. I have Lyme and also completely untreated Babs (lord knows, what all else ).
I'm hoping to be able to present something so he'll understand what's going on along the way. The sleep issues are documented but I'd like this to be attributed, in his mind, to TBDs as opposed to any of the various and sundry non-diagnoses available.
I think it's a good opportunity to educate someone along the way.
Cave ~ I very much appreciate your digging for me. If you think of anywhere for me to dig I'll go there but frankly didn't know where to look. Granted I could just give the doc my view of things but I'm sure I'll come off as a crazy lyme-lady.
Foggy ~ thanks for confirming what I think will happen. It gives me hope that it can and will. I can't remember if cortisol levels were ever taken on me. (My chiropractor seems to think I need a small amount of adrenal support.)
Shelley ~ I tried tryptophan many years ago and I think it may have helped some but it was a long, long time ago. I do love turkey though. Posted by Bon (Member # 5999) on :
[QUOTE]Originally posted by trueblue: [QB] (he is a neurologist that only handles sleep issues) Hi True...
When you go ask him about putting you on Neurontin. This along with Elavil, has helped me.
Neurontin came from my neurologist, the Elavil from my Lyme Doc.
Seems to work, although tonight doesn't count ! I still have my moments, just not as many of them...
Bon
Posted by bettyg (Member # 6147) on :
Trueblue,
Just got on for the day...
See my post 4-20-06 LLMD summary & LAB RESULTS updated 5-23-06; sleep is mentioned in there; LOW serotonin; I show the names of the labs, location for EACH of the 15-20 special lab testings done. You might gain some info for EXTRA tests you need to have done.
also, check your sleep study results; DID YOU REACH DELTA 4 sleep where your body rejuvenates & body heals? good luck
Posted by trueblue (Member # 7348) on :
Thanks Bon, I did the neurontin thing for a few years abut cannot take any more anti-depressants or anti-seizure meds ~ they all reverse and keep me awake now-a-days. The meds I'm taking work right now. I'm seeing the sleeep guy is just to make it easier on my LLMD because I have paradoxical reactions to so many meds.
Betty, Thank you for your input but I can not read your test results thread, at all. It's extremely long and there's nothing to separate one section from the other. Everything is too even with nothing to break it up. I have tried a few times and It's complete gibberish to me. Believe me I've tried.
In truth, I can't see how someone else's test results might be beneficial to me in this regard, anyway.
I merely want to give the doctor some information on TBDs. I have little interest in having more tests done. Thank you anyway.
Posted by TheCrimeOfLyme (Member # 4019) on :
I think I understand your question to be: what can you tell him about lyme, so he is more aware of it.
In all honesty? Nothing. Not a darn thing. Go, get your sleep test done, get all the testing done that you need and just mention you have lyme. That advice may or may not suck, but Ive learned that when dealing with other docs other than my llmd... forget it.
Posted by trueblue (Member # 7348) on :
Crime of Lyme, I do believe you're right about this, but thought I'd give it one more try. (Glutton for punishment no doubt)
Cave, the one good thing I do know about this fellow is he disagrees with the notion of prescribing anti-depressants for sleep. So at least I get to avoid that argument. I have friend that sees him, used to be a collegue of his, and likes and respects him. Giving him some points in his favor. I'll report back if I stumble onto one of the good guys.
Thanks, trueblue
Posted by bettyg (Member # 6147) on :
Trueblue,
Glad I happened to read this post.
I went into my lab posts & was shocked to find ALL THE GIBBERISH you referred to!
It wasn't like that when I copied/pasted from my word processor and it was also double spaced!
I spent last 2 hrs. editing it; hope it will appear correct as it was meant too.
A lot in there I do not understand but there are parts that I do. Thanks for saying something, but please PM or put the comments on the post where the problems are. I just lucked out reading this post again. Thanks. Posted by char (Member # 8315) on :
I think that it is an excellant idea to get some info to dr ahead of time. Also, a list of your specific symptoms and questions.
I took my daughter to a sleep dr. and it didn't go very well as we didn't do the above and got exasperated with the dr.s questions, which were her standard set that didn't fit the situation.
Best Wishes,
Char
Posted by bettyg (Member # 6147) on :
NEURO SCIENCE , NY
Results: LOW - epinephrine, dopamine, serotonin ELEVATED - PEA and histamine Normal - norepinephrine
RECOMMENDATIONS these supplements: 1. Adrecor 2. ENDOPLUS 3. SERENE PLUS 4. SANOX 5. BALANCE-D Retest in 4-6 weeks after beginning therapy or sooner if needed.
PHASE 1 & 2; is designed to support inhibitory neurotransmitter levels; such as GABA, serotonin, and taurine .
During this phase, anxiousness, depressive, or sleep related symptoms could be expected to IMPROVE.
Initial nausea, vomiting, or GI upset may occur but is only a temporary response and can be addressed through dosage adjustment or buffering supplementation with food.
Designed to last about 2 weeks but extending phase 1 may be necessary IF patient is still experiencing noticeable OVER STIMULATION OR RESTLESSNESS.
PHASE 1 and 2; generally continues until neurotransmitter levels have been optimized and symptom resolution is achieved, and usually takes months.
During this phase dosages may be manipulated to achieve results. This is followed by a transition into phase 3 of treatment.
PHASE 1 and 2; is important for maintaining adequate neurotransmitter levels. Without continued supplemental support, transmitter levels will revert to baseline values resulting; clinical symptoms MAY REAPPEAR.
Serene Plus contains 5-HTP and theanine, and is used to raise serotonin and decrease excessive neurotransmitter activity.
Sanox contains 5-HTP and theanine To maintain serotonin levels and Decrease excessive neurotransmitter activity. As well as TYROSINE to support catecholamine levels.
Balance-D is a purified Mucuna preparation that contains L-dopa. Used to increase dopamine, norepinephrine, and epinephrine
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