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» LymeNet Flash » Questions and Discussion » Medical Questions » I'm sleeping ALOT

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Author Topic: I'm sleeping ALOT
Jordana
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Is it normal to sleep 14 to 16 hours at a time?

As soon as I raised my antibiotic drug dosages I go to sleep and I just don't get up. Brain fog is horrible. I'm just really not functioning, can barely move on mino days.

The sleeping thing concerns me because I wake up so dehydrated. I can't get enough fluid in me it seems like to really detox. I also can't manage all the other supplements and potions if I'm passed out.

It makes me worry I'm getting worse not better. Am I herxing too hard?

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Keebler
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Yes, it's completely normal in this situation. It's more important than any supplements.

People who are very ill fall into comas and that is their healing time - the brain and other organs sometimes need to nearly shut down to do the real work. So, consider yourself lucky that you have less of a "situation" and more control with your actual waking up and moving about time.

If you wake up during this time, though, have water with a little sea salt (just a little - it helps adrenals) - but do not flood your body with it,

a little food on hand (guacamole or hummus - swish mouth with water maybe quickly chew some SPRY gum)

and maybe one or two supplements that are easy on an empty stomach and with lying down,

Gently move your limbs and massage your belly a bit. Do some deep breathing maybe a little humming.

But, really, this extended need for sleep is the priority here. It's your best helper of all to help the liver and brain clear detox.

Let your body sleep if your situation / schedule allows that. Your body NEEDS this.
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Keebler
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However, it's also important to establish and maintain a "proper" bedtime regarding circadian rhythm. This matters greatly.

I assume you are not taking any sleeping Rx or aids. Best not to, of course, in your situation - but if you are taking a sleep Rx, that could be too much for you.

When I was first so very ill, I'd sleep nearly 23 in 24 hours each day for a full year. I had zero treatment at that time (no Rx at all for anything), though, and had not yet been diagnosed.

The Babesia sweats were the worst, though, as sheets got soaked so I started sleeping with beach towels. Nightmares, too, did not make me want to sleep but my body demanded it.

Sometimes bladder urgency would surprise me sometimes when waking from a long and deep sleep and I figured out a few things there, too. The viscose "kitchen towels" in packets at Trader Joe's came in might handy to keep under my pillow, let's just say.

You will find certain things that can help with the particulars along the way. Just know that this is perfectly normal, all things considered.

If you can stay awake and move about for a few hours and then go back to rest / nap that sort of arrangement with your body may be able to be made soon. Just listen to what your body needs as you negotiate arrangements with it.
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Keebler
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In addition to a little REAL food if you wake a bit from hibernation, kms just started this thread. Some good choices here, the one sixgoofykids posted looks to the winner.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=133950;p=0

Hydration supplements
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Jordana
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Thank you Keebler. You made me feel a lot better.

I'm sleeping so much but my body feels like it's working really hard.

My sleep schedule is totally reversed. Every time I get it back to somewhat normal it wants to skew off again because I'm sleeping so much.

Babesia sweats quit when I started Sida and Crypto, though they're breaking through now. I think the tindamax helps.

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Jordana
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I honestly can't believe what's happening here.

I had no idea how sick I was until I started treating this. I mean I was worried but...wow. Nothing prepares you.

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TNT
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quote:
Originally posted by Jordana:
Is it normal to sleep 14 to 16 hours at a time?

As soon as I raised my antibiotic drug dosages I go to sleep and I just don't get up. Brain fog is horrible. I'm just really not functioning, can barely move on mino days.

The sleeping thing concerns me because I wake up so dehydrated. I can't get enough fluid in me it seems like to really detox. I also can't manage all the other supplements and potions if I'm passed out.

It makes me worry I'm getting worse not better. Am I herxing too hard?

Two things that come to my mind are:

1. This tiredness is a tell-tale sign you are herxing and killing things. The best sign for me that I'm herxing is unusual tiredness, such that I cannot resist sleeping.

OR

2. You are stirring up Babs, but not killing it. Thus the bugs (protozoans) are more active. Tetracyclines are known to have anti-malarial properties, ie., Doxy is given as prophylaxis for Malaria. But given alone, they are not enough for treatment of an established infection.

I definitely lean towards #1.

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Judie
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It's good that you're sleeping.

Listen to your body. If it wants to sleep at odd times and you have the flexibility in your schedule to do so, just do it.

Sleep sleep sleep!!!

Sleep is the best healer. It's a blessing.

It's when you can't sleep that the body has trouble healing.

The practitioners that have helped me the most said sleep times don't matter (this is from an ND and a teacher at an Chinese medicine school).

Normal schedules work for normal people. We aren't normal. IMHO

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Jordana
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Over the past week or so I've become convinced I have babs, even though all testing has been negative.I suspected it when I stopped sweating on Bactrim, Sida, Crypto.

Now on my Tindamax days I get dark urine. So I think maybe both.

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TNT
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Another two things that come to mind:

1. You need to increase your detoxing otherwise you are going to get overloaded with toxins from the die-off.

2. But, if you are too tired to function and to detox, you are going to have to back off a bit.... or pulse it somehow. If you back off or pulse, I would recommend you at least consult your doc to get his opinion on the best way to do this to make your treatment the most effective.

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Nula
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I think there might be too much bug killing going on ...

I felt like this on malarone and A-BAB. Couldn't get out of bed. Ever. The brain fog was brutal, as was the physical fatigue. If someone had told me the house was burning down, I still wouldn't have, COULDN't have moved.

I still get this, from time to time. But much less so since I've switched to herbals only.

--------------------
I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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Jordana
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I am pulsing. 400 mino then 500 tindamax, every other day, with one day off. I have a scrip waiting so I can add zith.

It's brutal.

But I'm kind of stuck. This infection is three years old and neurological. I can't undertreat it.

It seems to me a herx shows you where you were headed, without treatment. Pretty scary.

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Jordana
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This is what I'm worried about Nula.

I can't get too sick to treat myself. There's no one here but me. If I fall apart the only outcome is to get carted to the ER or hospitalized to be made worse.

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Nula
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I understand, Jordana. This kind of "fatigue" (which is really too mild a word!) is very, very scary. It still scares me when it comes. It's massive and unrelenting.

It was the main reason I stopped malarone. My symptoms weren't getting any better, I just had the added "fatigue".

I really, truly understand you.

The herx doesn't show you where you're headed without treatment. That's what I used to think as well. Lots of meds (or even the wrong ones for you, specifically) can overwhelm the body. When this happens, it feels like everything is shutting down. You feel like you will not ever be able to move again.

99% of my symptoms are neurological as well. I have Lyme, Bartonella, Babesia duncani and God knows what ...

I understand the fear of falling apart, of ending up in the ER in the hands of clueless doctors.

But I promise you: You're not going to fall apart! 400 Mino is a lot in my book. Plus Tindamax ...

As far as I know, Mino isn't a med to be pulsed.

Do you have a good LLMD?

Any chance you can lower the dosage? Make sure to support your adrenals!

--------------------
I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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tulips
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I hope that you're not sleeping so much that you aren't able to eat adequate meals. When I was sleeping a lot, I lost a lot of weight.
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Jordana
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[Smile] . This is not a problem. I appear to be one of the "fat" Lyme people as opposed to the thin ones. I think I gained 40 pounds this year.
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Judie
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Mino wiped me out. I couldn't function on it and had to stop it after 2 weeks. I couldn't get up from the vertigo. My body felt so heavy, I needed to lie down all the time.

Eventually I developed a rash and stopped the thing all together.

Tindamax causes peripheral neuropathy. I also got bad Achilles tendon pain on it, so be careful if you start feeling any new or weird pains.

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Notti
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400mg of Minocycline is quite a lot. Has your physician prescribed this dose? Are you being monitored closely (CBC, liver function)?

Sedation can be a side effect of Minocycline. It can cause drowsiness/sleepiness, extreme tiredness or weakness.

Researchers have found that in ALS Minocycline very likely has neuroprotective properties at a dose of 200mg, but is actually neurotoxic at a higher dose of 400mg. More is not always better.

It is a very good medication for Borreliosis. Some say it is as good as IV antibiotics or even better. For some German doctors it is a first choice treatment for Neuroborreliosis.

I hope you'll feel better soon.

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Jordana
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My doctor did prescribe it, daily -- but then we worked out it was better to pulse it every other day.

This was hard to weed through. I feel pretty good about minocycline for neuro-lyme even though it's unbelievably hard to tolerate. However, Burrascano says the tetracyclines don't help at lower doses - they have to be bactericidal, and it's hard to know what drug levels are being achieved inside a person.

Then, for some reason I started reading about Lyme in horses; a condition veterinarians acknowledge totally and they also have no doubt that it can be chronic, relapsing and persistent. For horses, at a late stage, veterinarians expect to retreat.

In horses they prescribe either IV oxytetracycline or oral minocycline at 4 milligrams per kilogram, so I am close to 400mgs as a human. Vets have cured late lyme in horses at that dose. Not always -- but often.

Minocycline I think caused herxes in ALS patients, but I looked at that pretty carefully too. I could drop back to 300, maybe. In ALS they were looking at neuroprotection only -- they weren't trying to kill spirochetes.

I never expect to feel good on this drug. Sedation is a bit of an understatement. I just don't want to kill myself.

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Nula
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Minocycline was the first med I took (combined with Plaquenil). It was amazing. I loved it. It took away 70% of my symptoms. Within three weeks I felt almost normal. Later, Babesia surfaced, but that's another story.

I took it at a dosage of 50mg in the morning and 100mg in the evening. Never had any side effects, until my gut gave up on me. (My first LLMD thought that probiotics were useless and I was on Mino and Plaquenil for 6 months until I figured out that I had to take probiotics ...).

So, yes, I agree that Minocycline is wonderful for neuroborreliosis. Just thinking that 400mg might be a bit too much?

I understand your reasoning, Jordana, but keep in mind that Minocycline might be ototoxic.

http://hearinglosshelp.com/blog/doxycycline-and-hearing-loss/

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I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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Jordana
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Wow, Nula, you're the first person who's ever said they liked minocycline that I've met. It makes me shaky and exhausted and I'm in a constant, constant herx.

But it does help with some symptoms maybe. I can hardly tell. I've sort of been waiting for some kind of payoff here.

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Nula
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It may be a dosage problem. I never could have tolerated Minocycline at a dosage of 400 mg. I only weigh 103 lbs ...

The worst thing about being on various heavy-duty meds is not knowing whether they actually work. Because the body gets clobbered with so much (herxing, side effects, detoxing, bug killing) that it's sometimes hard to tell whether a med is helping or harming you.

--------------------
I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

Posts: 235 | From Europe | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
   

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