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» LymeNet Flash » Questions and Discussion » Medical Questions » your lips move but I can't hear what you say

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Author Topic: your lips move but I can't hear what you say
Leeintn
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I keep reading about brain fog. What my brain feels like is not what is described as "brain fog"

I would like to know if ANY ONE else has this strange symptom.

I had a day time sleep study test. The doc said my brain switches into REM sleep during the day. It only took me 1 minute to go into REM sleep.
It takes a normal person 60 mins. to 90 mins. !!

He couldn't dx me w/narcolepsy but said I had hypersomnia.

I can actually feel my brain go into REM. It is soooo frustrating because my brain literally cannot function it just shuts down. I am a prisoner to this because I have no choice but to sleep not matter where I am or what I am doing.


I feel like I am the only person w/lyme who has this. It is so depressing.

I tried Provigil. didn't have much luck.

Is this the lyme affecting my brain?
Sorry this is so long.

Thanks for reading my post.

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Keebler
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You say that you "feel like I am the only person w/lyme who has this" (end quote)

No. Not at all. Not sure where you got that impression.

Hypersomnia is VERY common symptom, it's classic on most symptom lists. I am very familiar with this effect. And so are most with lyme, it's not uncommon at all.

The main thing is getting to the cause: lyme (and all that goes with that). Infection cause one to need more sleep - sometimes around the clock. Your body is trying to be your friend here, keep you safe but MAKING you sleep. Your brain NEEDS this.

Still, there are things that you can do for support, such as addressing other mitigating factors, looking at any Rx that might be interfering, addressing nutrient deficits, diet, and support. Sleep hygiene / habits / fabrics / chemicals in bedroom.

Your body needs rest, sleep, whatever time of day, where ever you are -- if you feel that way, it's a sign that you are ill and need to shut down to rest.

Treating the infection(s), supporting the body will help. Pushing in anyway to boost energy will not work and not be healthy.

However, adrenal support can be a very good help.
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Keebler
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WHILE addressing infection(s) directly, (and even if you have not yet found a LLMD) Liver support is REQUIRED and that will help your brain and alertness, too.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


To help with endurance -- and see the sleep hygiene posts, too:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT
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Keebler
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Food additives could be causing some of the problems you describe with sleepiness.

Going gluten free helped my wakefulness. Detail about gluten here (most LLMD suggest their patients be gluten free for good reason):

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);

"Hidden Sources of Gluten"
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Leeintn
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Hi Keebler,
Sorry if I gave the impression that I was the only person w/lyme who has this. What I meant by "this" is the overwhelming sensation I feel in my brain.

That's why I wanted to know if anyone else experiences REM sleep during the day. For me its different than feeling fatigued in my body or having brain fog.

Sorry for the confusion [Smile]
Thanks

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lax mom
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For me it's some sort of metabolic shutdown. My body completely shuts down so that it can do only the things necessary to keep me alive.

I can be awake for maybe an hour, then I feel like my body is full of lead and I pretty much collapse into something deeper than sleep. It scares me.

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Keebler
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lax mom describes it so well, "metabolic shutdown" . . . systems on task with only what's "necessary to keep body alive"

Yes, I have experienced total shutdown in, oh, so many ways. I used to drop to the ground asleep, just out of nowhere, where ever I just happened to be - while crossing a street, elevator, escalator, while talking . . . .

And when I didn't zone out, pass out or flake out, I was just so out of it with that sensation very literally PULLING me down from the inside of my brain.

For me, diagnoses of narcolepsy and cataplexy were suspected but I did not fit all the criteria for a formal dx. Still, all kinds, manner, shape and form of awake and sleep disorders are common with lyme & co. And it's multi system. The autonomic and sympathetic nervous systems, adrenal, toxic overload, you name it, it's all involved.

I hope you have a good LLMD. All this, and more of whatever is going on for your body, can be addressed with a good LLMD who has experience. Still, the support and self-care methods can be overwhelming because we have to cover all the bases.

About driving, not sure if you are driving right now but that may be something to put on the back burner for awhile to stay safe.

I used to fall asleep going through a traffic light. Or not know what red or green meant . . .e even forgot how to shift gears often (an automatic car is safer but mine was a stick shift). More than once lost my car and then, when police found it (more than once) I could not remember even having been on that block.

Hung up my keys when I went through a red light (and knew that meant to stop) but I could not remember how to stop my car - at that moment when I needed to do so. I figured it out a minute later so it's not the memory thing but the alert stage thing going on there - my brain was asleep.

Three different QEEG (brain mapping) tests confirming my brain going into the sleep mode frequencies even when trying to do a math problem. EEGs were useless but I really needed no fancy tests to tell me what I already knew.

My brain did not have the power required. And it cannot - simply cannot - be pushed if there is simply not the power to "power up" - other tasks necessary to keep you alive come first.

I don't want to scare you but driving with lyme can be dangerous. And all this can get better and you can learning coping methods along the way.

This can get better. Really.
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Leeintn
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Hi lax mom,
Have you ever had a sleep study test? I knew even before the test, that what I was experiencing was not sleep apnea or just tiredness. I knew it was not normal..

From what I've read, people w/narcolepsy feel rested after an episode. I usually do not. I feel groggy. Like my brain is not fully awake. It really suxs..


Sounds like you might being having REM sleep too.
I know its scary. The doc did not take my license
because he could not dx me w/narcolepsy.

I usually don't drive mid day. That is my worst time.

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Leeintn
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Keebler,

Was there anything that helped your sleep attacks??

And yes that's how I can describe it too...being pulled down.. That's what I mean when I said i can see your lips moving, but i can't hear what you are saying... My brain can not process ANYTHING ...i can't carry on a conversation, all my brain says is sleep go to sleep NOW .

It has improved somewhat. I don't drive long distances. I haven't in four years. I do a few errands close by.

It sounds like you are better. That's wonderful !!
Thanks for your help [Smile]

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lax mom
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I only had a sleep study at night which showed mild sleep apnea that I use a CPAP for.

I dream when I sleep during the day, so that has to mean something.

I never, ever feel rested or refreshed when I sleep. It's more like being "unconscious" than sleeping. If that makes sense.

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lax mom
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The only time I feel ok is around 10pm.

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Keebler
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Lee,

Are you (have you been) getting treatment for lyme? I would assume so as you've been here for a few years, but since all this is so perplexing to you and to that doctor you see . . . it seems like you may not have a LLMD who is able to explain that all this goes along for the ride and work with you on an action plan.

I'm sorry that you are with a doctor who apparently is not as educated as needed. Any doctor who really knows about lyme would have been able to have a good discussion with you about this -- and explain it better than just shrugging shoulders (which sounds like what you're getting).


** Have other tick-borne (and other chronic stealth) infections been assessed? Some of the coinfections can cause this kind of issue more so than others. I'm thinking Babesia.

If you take any sleep, pain, anti-anxiety or depression medications, have they all been examined for such effects? Even if not listed, these kinds of meds can often cause daytime awake issues.
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Keebler
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It's not just about REM either but the sleep frequencies. Theta and Delta waves can be very strong for those with lyme.

Meditation did not work for me but Qi Gong did help (along with everything else) - to a nice degree. But more than anything, it taught me how to roll with it, too.

Qi Gong and Tai Chi help train the brain to be more in Beta mode (I think that is the second highest one that is both relaxed yet alert -- don't want the highest mode, too hyper).
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Leeintn
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Keebler,

I am in the process of moving and building a house..Well I said me but my husband is doing most of it. I do have a LLMD but decided to wait until i am completely moved before I start treatment.

Doc told me oral abxs aren't very effective for neuro lyme so I guess it's on to IV.

I started on Dr Zhang's protocol in August and some other supplements from the Doc.

I am a huge chicken when it comes to meds so the only script I am taking is Armour 30 mg.

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Leeintn
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Lax,
Oh my goodness 10 pm is the ONLY time you feel OK?? I am so sorry. Have you thought about having a day time sleep test? Having dreams during your day time sleep is also a sign of hypersomnia and narcolpesy. Mine are very vivid. I hate it. But of course, the reason for the dreams are we are in REM sleep.

I use to sleep two hrs at a time multiply times a day.. It is not as severe now but it is still there.

Have you tired provigil?

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Leeintn
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Keebler,
The doc told me about my waves, I just don't remember what it was.

If you treated your lyme w/abxs, did it help with the sleep attacks?

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Keebler
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I did so much better when able to be on the full Zhang protocol. So much, with my brain and all.

I hope you can do the full protocol with the allicin at the top amount (allicin is the only one that goes by weight), not just here and there with this or that. It makes a difference to have the rounded out plan.

The HH capsule also seemed to really help.

But allicin too close to bedtime can interfere with sleep and then cause daytime sleep drops.

Berberine also helps my brain to be a bit more alert.
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Keebler
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Sleep tests done by doctors who are not LL are not always all that helpful to us, especially when they try to explain why. They are just clueless and that does a huge disservice to patients.

Medical ignorance was rampant in my sleep study - and in the daytime nap studies . . . and even "medical abuse" toward me in the follow-up appts (as my test results and experiences - and questions - not fit anything they'd seen before).

A sleep study for sleep apnea can be important but those to look at brain sleep -- best interpreted by a LLMD.
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Leeintn
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Keebler,
Thanks for the info didn't know about the allicin @ bedtime.

I will try the berberine. I've tried a million things but never heard that one. Is that from Zhang protocol??

Not sure if my LLD is "up" on sleep test. He knows my results but that's it. That's discouraging. Very few LLMD in my area and I cannot travel long distances.

One more question... Did you use abx treatment too? And how long before you noticed you were feeling better w/Zhang? I just started 90 days ago.

Thanks for your help [Smile]

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Keebler
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Berberine is not part of Zhang's -- although he has an alternate for allicin that contains Coptis and coptis contains berberine.

The alternate for allicin is not recommended full time (just not as powerful) but mostly when someone just can't smell of garlic for an important occasion or need break for some reason (or can't tolerate it).

Perhaps, if you have trouble with sleep, substituting Hepapro's Coptis formula might help.

Hepapro makes a very nice sleep formula, too: HerbSom
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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=121034;p=0

BERBERINE – LINKS SET
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Keebler
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Leeintn

You asked if I've done antibiotic treatment. I have never had access to any organized comprehensive treatment. A patchwork of this and that with maybe 2 months at the longest of just one abx (never a good idea, I know now) . . . a few consults but never able to do what I needed.

When I found Zhang's book, etc, I probably did it for about 4 months and then another time for about two. That's all i could afford. Probably about 2 months in, my brain started to do better.

It is very reasonably priced for the quality, the research, fair trade, etc.

I do know that a few have done very well with it. Six months seems to be a place where many see a bit of a turn around. And from there, it can still take a while, as with any protocol. Some also combine antibiotics with it and that may be necessary.

Hope you can continue the full protocol at least until you can connect with a LLMD. You might go ahead and schedule an appt where you are moving to as it could take a while to get in.
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lax mom
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quote:
Originally posted by Keebler:
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Sleep tests done by doctors who are not LL are not always all that helpful to us, especially when they try to explain why. They are just clueless and that does a huge disservice to patients.

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Yep. I had 15 arousals/hour that were dismissed as "no big deal" because they weren't related to any breathing event. [Frown]

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Keebler
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Be sure you are getting enough MCT. In the recent ILADS' video stream conversation part at their conference, Dr. B suggests 1 TBS every 8 hours of coconut oil for our brains - with the MCT's protective capability.

I would like to find other sources of MCT, too, beside palm oil (as it can destroy habitat and the typhoon that just tore through the Philippines has destroyed a lot of trees in its path).

For a start:

http://nutritionreview.org/2013/04/medium-chain-triglycerides-mcts/

Medium Chain Triglycerides (MCTs)
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