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» LymeNet Flash » Questions and Discussion » Medical Questions » Very strange issues with lyme recovery - anyone know what to do?

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Author Topic: Very strange issues with lyme recovery - anyone know what to do?
atxlyme
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I have two things that've been happening to me that I can't figure out.

1. I go through periods when I only sleep 4-6 hours/night, and then wake up wide awake, even though I know I'm still tired. That's not even the strange part though. I usually feel pretty good/normal on these days and can work the whole day and still have energy at night.

Then I'll go through periods where I'm not waking up like that, and sleeping more normally 6.5-8 hours/night, but I don't feel great, and barely have energy throughout the day even though I actually got sleep.

Any ideas on what's causing this/what to do about it?


2. I'll go from living semi normally for a period of 4-6 weeks, and then basically have no energy for 4-6 weeks. So I don't think it's a herx or anything like that, I'm doing pretty much the same things/eating the same foods etc... during each. Only difference is I do lift weights when I'm feeling good- but that was recommended and I only stop when the 4-6 week period of not feeling good comes in.

I haven't heard of others having this type of experience, but maybe others do? Any idea what it is/what to do about it?

Posts: 21 | From Austin, TX | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
Keebler
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-
The sleep drug, Ambien can have some of the effects you discuss in #1.

Are you being treated by an ILADS educated lyme literate MD or ND . . . and have you been assessed for the full range of tick borne infections?

Be sure to discuss your issues with your LL doctor for they need to know this, though it all sounds very typical for those with TBD (tick borne disease).

Just be sure that infections are being addressed as fully as possible and that support systems are good.

LIVER SUPPORT is key to good sleep, too. more details:

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

Topic: NATURAL SLEEP & ADRENAL SUPPORT
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
atxlyme
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"Are you being treated by an ILADS educated lyme literate MD"

yes

"have you been assessed for the full range of tick borne infections?"

yes

"it all sounds very typical for those with TBD"

i haven't been able to find many others dealing with these sort of long cycles of changes, more just people who herx, but not such long cycles that i've heard of- would love to hear from others if they have the same cycles- do you know of threads where someone has mentioned that?

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Brussels
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How is your mouth?

Dead teeth (root canals)? Cavitations?

I had terrible problems of waking up suddenly in the night due to one specific tooth. The moment it was out, the problem disappeared for good.

how is your blood pressure (normal)?

Are you on neurotoxin binders? Absence of enough binders did cause me insomnia, and night terrors.

the thing with energy, don't think you are well when you apparently don't feel tired. High blood pressure can make you wired, feeling high and okay, not able to sleep well, but that is not good sign as you may crash after.

It could also be like a recovery time. I used to have my ups and downs when my body was fighting infections. Until the next infection showed up and made me crash again.

For me, it was due to a sort of internal tuning of the ecossystem, with ups and downs.

I hope you find out!

Posts: 6183 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Robin123
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Do you spend time in front of a computer before going to bed? That can throw off melatonin, which is our sleep-inducing chemical.

My first hunch on reading this is adrenals and cortisol level - it could be elevated. Not unusual for Lyme patients. You can talk to your doctor about testing for it.

Why don't you at least try to beat the no-energy part of it? Flower pollen gave me energy. Magnesium has the potential to do so. Gotta admit I drink coffee.

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atxlyme
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quote:
Originally posted by Brussels:
How is your mouth?

Dead teeth (root canals)? Cavitations?

I had terrible problems of waking up suddenly in the night due to one specific tooth. The moment it was out, the problem disappeared for good.

how is your blood pressure (normal)?

Are you on neurotoxin binders? Absence of enough binders did cause me insomnia, and night terrors.

the thing with energy, don't think you are well when you apparently don't feel tired. High blood pressure can make you wired, feeling high and okay, not able to sleep well, but that is not good sign as you may crash after.

It could also be like a recovery time. I used to have my ups and downs when my body was fighting infections. Until the next infection showed up and made me crash again.

For me, it was due to a sort of internal tuning of the ecossystem, with ups and downs.

I hope you find out!

No root canals. Have some fillings from when I was a kid.

"Are you on neurotoxin binders?" i don't know? i'm on a number of different things but not sure which would classify as this. Haven't heard that term before.

Blood pressure has been normal whenever it's been checked.

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atxlyme
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quote:
Why don't you at least try to beat the no-energy part of it? Flower pollen gave me energy. [/QB]
Interesting, have not heard this. Is there a certain brand you use? Any negatives to using it?
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Robin123
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I took Cernitin flower pollen, but the company has gone out of business. Based in Sweden, they collected honey mechanically, so no exposure to bees. You'd need to experiment with bee pollen. As always, I recommend a very tiny dose when testing something new.
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paleogal
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I sleep about an hour less per night around the full moon. Have you tracked when your low sleep issues happen?
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D Bergy
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Could be mycoplasma. It would wear me out as it saps the energy at the cellular level. If it gets bad enough, you will get physically exhausted doing physical tasks you normally could easily do.


Dan

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Splashi1
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I very often experience the symptoms that you describe. Sometimes I fall into a coma-like sleep, but wake up exhausted. At other times I sleep for a much shorter duration, and sometimes (though not always) seem to have more energy. My doctor has suggested a sleep study.

I haven't been able to put my finger on what is behind it, so I'm sorry, I can't give you any suggestions. Really this was just to let you know that you are not alone in your experience.

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