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 Post subject: Up all night and never felt better? Need your help as to why
PostPosted: Tue Jul 08, 2008 5:02 pm 
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This is so WEIRD!!

First it is very hot and muggy here (over 100 during the day) and tons of smoke fills the air from surrounding fires. I always look forward to opening the doors and windows in the evening, but couldn't last night.

I left on the air conditioning and it was about 90 degrees outside at midnight...I went to bed, fans on .... it was nice and cool and I fell asleep.

An hour later the power went out and my dog freaks when this happens...things that "beep" scare her (and house flies, but that is another story) when the power went out there were clocks, appliances and smoke detectors that beeped quickly...she was trembling, wagging her tail, panting and would not let me sleep. My other dog joined her soon after.

I was awake lying there thinking about my Bicillin in the fridge, if they weren't cold at least a $2000 loss..and the "what if's"...what if the air doesn't come on for days, we will suffocate in this house, air quality so bad they are recommending masks be worn.

The silence of no air conditioner, no fans whirling was deafening, it was dead silent...I started to feel entombed in the house, feeling like it was muggy hot and no air, I swear the thought made my throat cramp.

I got up took my dogs out to our backyard and sat there in the dark, I could feel shots of pain starting, I was exhausted. I decided to put a bag of frozen strawberries over my Bicillin...about 5am the power came back on.

I went to bed, slept until 9:30am. I was suppose to go for an MRI, I had to reschedule it. I am so tired I can't see straight...then strangely a burst of energy, low pain (not NO pain), I went to the store. Pain as been low all day... why?

I have found the cure for myself...don't sleep! Isn't that odd?

I wonder if my cortisol is just low - I know when my cortisol is low my pain is lower....testing of cortisol levels (all within normal range highest in the morning, lowest at bedtime) proved this. The scale showed my cortisol levels and they matched with my pain levels..shouldn't cortisol relieve pain?

It could change at any moment, but I would trade "tired" for "pain" ANY DAY!!!!!!!!!!! This isn't the first time I have noticed this, it has happened with other sleepless nights.

Anyone that can figure this out is a genius and can alleviate a lot of my pain! Could there be something in my hormonal or endocrine system malfunctioning? Any tests you could recommend would be appreciated!

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Wed Jul 09, 2008 3:56 am 
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Not sure if this may help...but the HEAT could be a factor!!
My LLMD suggested that I might try a heated therapy pool for my muscle & nerve pains. It seems that at least ONE of the co-infection buggers doesn't like heat and it forces them to die off. (I can't recall which one(s).) Wuddya think?!! Makes sense to me...

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Wed Jul 09, 2008 6:05 am 
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Dana~
I know when I go thru my days and nights of no sleep, I sometimes feel better too. I think it's because I'm usually walking around in a sureal like state. although that's annoying at times, it feels like you're dreaming and things don't seem so bad. lol. I don't get it. It's been hot here lately, 90's and muggy. I can't take the heat, it drives me nuts. at the same time, I can't take the cold and wet, it drives me nuts. Hawaii.....yes, hawaii would be perfect! lol

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Wed Jul 09, 2008 10:50 am 
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Nancy - I know heat can kill LD - please tell me heat kills ehrlichia! :jumpy: Do you remember? So funny you mention this, I was looking for a place that I can do some physical therapy hopefully with a heated pool..they say close to body temp, otherwise cooler water will make the muscles cramp. I am asking my pain management MD for PT referral my next visit.

Jaime - Yeah, it is sort of like you are so tired, maybe the body is just really relaxed? Really weird though.

This heat is AWFUL today it is suppose to be 108, air quality is bad, we can't even walk our dogs in this stuff.

It is the kind of heat that is so hot, even in the air conditioning you sweat - it is muggy - I can't stand it -I noticed I am sweating constantly - I am moving a lot, but I am wondering If am sweating out toxins.

Whole thing is a mystery.

Danny thinks when you are over tired cortisol raises and that is what gives some "pain relief" .... maybe but it doesn't line up with my cortisol tests and pain levels that matched high pain w/high cortisol.

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Wed Jul 09, 2008 3:08 pm 
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you know, when I first started treatment last year, almost now exactly ONE year ago now, I remember I was a sweaty nasty icky mess all summer. It was gross. And I'm pretty sure it was because my body was so overloaded with toxins and disease that it was my body's way of taking care of it. could be what's going on with you. It calmed down a bit since then, but I still got thru those sweaty spells, but that was insaine. I was like a human heater.

I don't know how you do 108 degrees! ugh, and I can't stand humidity at all. and the fires on top of it, oh my gosh, you're in my prayers

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Wed Jul 09, 2008 11:35 pm 
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I about died...our power went out again at 3pm today!!!!!!!! It was so smokey from the fires all around us the sky was orange...the temp was about 105...I told Paul we need to go to Home Depot and get a generator and an indoor a/c unit. So we did...when we got back the power was back on, but I am hanging on to the generator and a/c unit until summers over and if we don't use it I am going to return it, but it got so hot in the house, within minutes it went from 78 to 85. I started thinking if this goes on all day we are in trouble...so we are prepared now.

I swear I am a sweating all the time..the heat is insane...but I always feel better when I sweat. I KNOW a sauna would help me! I have to either join a gym or get into physical therapy where these things are available. Thanks for prayers...right back at ya...everyday.

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Thu Jul 10, 2008 8:17 am 
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I think you are so wise to have a generator now, Dana. I have thought of the same thing.

I wonder if you had a burst of adreneline kick in. It would have raised your cortisol a little and would definitely be a more reasonable explanation as to how you were able to feel as you did under the stressful circumstances that you were anticipating and potentially facing.

I have experienced similar type moments and when relief came, my spirits lifted and I would get a little surprising burst. We are wonderfully and mysteriously created.
I would be encouraged that your adrenals were working on your behalf! That's good news!

I would email Dr. B. and ask him about your ? re: erlichia and heat before beginning your swimming therapy, just so you are equipped.

In His love, ~d

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Thu Jul 10, 2008 11:17 am 
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Yes having a generator is like having insurance. We could not afford this, but amazingly Home Depot gave us a $200 discount, because it was the floor model, that is about 40% off..and it has the same warranty etc.,

Yes, good idea about emailing Dr. B.. I didn't think of it really just assuming I'd be fine, so I will do that.

Adrenaline is a funny thing...when Danny goes through hard times, my pain is a distant memory..I am not thinking about it and I don't remember my pain levels when things settle down...it is amazing, God is good. Yes, I think you are right, my adrenals are working, praise God.

Thanks Diana.

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Thu Jul 10, 2008 5:48 pm 
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I've read this post several times and wasn't sure how to answer but now I have to agree - I think it's the heat.

I feel great after I do my sauna. Just this evening I wasn't feeling well (from lack of sleep ironically) I did my sauna and I'm feeling so much better.

When my hubby has a cold or gets sick he go to bed wearing a hat, lots of clothes and he bundles himself up with blankets. He makes sure he sweats a lot and then he actually heals faster. He drinks hot water all day, too.

Now the generator thing - we always talk about it when we lose power but so far we've never actually purchased one! I have a brother about two miles from here that has one so we head over there.


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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Thu Jul 10, 2008 6:12 pm 
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I thought about you Molly and the saunas. I know they would help me. My husband and I were just sitting here talking about how when we sweat the pain vanishes - albeit temporarily - what is the connection I wonder...detoxing maybe?

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Fri Jul 11, 2008 5:34 am 
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Yes, I think it's the detoxing.

It's definatley more difficult to get in my "box" as my family calls it in the summer months, though. They like to come downstairs while I'm in it to laugh at me. It's really pretty funny.


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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Fri Jul 11, 2008 11:06 am 
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What kind of sauna do you have? Can you post a link to a picture of the one you have? I want one.

So I feel better when I am sweating because I am detoxing???? Interesting.

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Fri Jul 11, 2008 3:57 pm 
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A definate possibility. One of the women in my local support group always feels better when the go to Florida in the winter and she sits in the sun.

I don't do well with hot weather but the sauna makes me feel better immediately and the effects last through to the next day at least.

I bought mine on eBay. It was very cheap - only $189 including delivery. It's basically a "tent" and your head sticks out the top. I was afraid to make a big investment because I hate being hot (especially breathing hot air) and I wanted to make sure I could tolerate it.

While my husband was putting it together for me he was very skeptical and called it a "cheap piece of junk" Now we call it the best investment we ever made. It's paid for itself several times now.

This one is almost exactly like mine:

http://cgi.ebay.com/LARGE-INFRARED-PORT ... .m14.l1318


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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Fri Jul 11, 2008 10:19 pm 
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Oh, ok I have seen those...they really work then! I might have to get one! How often do you use it?

Early on in this disease, when I would be so sick, I would sit in the sun or putter around in the yard enough to break a sweat (probably was bitten 10 more times - I still wasn't "afraid" of ticks -duh!) and I noticed 2 years ago I felt better when I would sweat...I thought what is going on?

Still happens. If I feel cruddy to break a sweat I will vacuum (works everytime) and I feel better...sitting in the sun is relaxing for me and does feel good, but I don't like heat much myself, I really don't like it all. But is relaxing in the sun and the sweating thing works great.

Thanks for the link!

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Sat Jul 12, 2008 5:21 am 
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Cog1st wrote:
Yes having a generator is like having insurance. We could not afford this, but amazingly Home Depot gave us a $200 discount, because it was the floor model, that is about 40% off..and it has the same warranty etc.,

Yes, good idea about emailing Dr. B.. I didn't think of it really just assuming I'd be fine, so I will do that.

Adrenaline is a funny thing...when Danny goes through hard times, my pain is a distant memory..I am not thinking about it and I don't remember my pain levels when things settle down...it is amazing, God is good. Yes, I think you are right, my adrenals are working, praise God.

Thanks Diana.


BTW: best thing we ever bought was our generator. He bought it after a storm we had that knocked our power out for like a week. You know .. we've not lost our power since. KNOCK ON WOOD.

(cept for 30 minutes one night when it was raining horribly and ya know ya can't plug them up in the rain).

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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Sat Jul 12, 2008 6:15 am 
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Jennifer: I wish we'd get on the ball and buy a generator. We are going to be SO sorry next time we lose power.

Dana: When I first got my sauna I was using it three times per week. Then I slipped to two and then one when it got hot. We've had a relatively cool summer so I'm back to using it twice per week. In the winter I will go back up to three times per week.

I think this type of detox will really speed up recovery all the while making us feel better.

The only thing I worry about is getting vaginal yeast again when/if I go back on ABX. The sauna would really exacerbate that for sure. I can't afford that infection as that's where I have my worst pain and the yeast infection makes the pain much worse.

Just found this info on saunas. It's a book but there's a lot of info from the book that's very good. I learned a lot without even purchasing the book:

http://lymebook.com/nenah-sylver-sauna-therapy-book

I also meant to tell you, Dana, that I know a Lymie that has the cheaper sauna like I have and an expensive one and she prefers this one. She likes to have her head out of the sauna and this one heats up faster, too


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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Sat Jul 12, 2008 8:53 am 
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Don't know how all this relates, but here are my experiences.....

I live in Florida a mile from the beach, so we're able to go a lot. When I sit in the sun I feel pretty good (of course) and when I swim in the ocean I feel even better. Swimming is so good for the body because it doesn't stress the joints as much and you're able to get all the kinks out.

Always sweat at night and it's hard to get out of bed in the morning. My body is very stiff and my feet hurt for the first 5 minutes.

I keep my house like a meat locker because my body is a furnace.

Dana, I don't know how you do it. When I get overheated I get kind of panicky. To have to smell the smoke would make me nuts.

We lost power for about a week once with a hurricane. Kids still had to go to school and me to work. I couldn't stand it. Packed up and moved to a hotel.


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 Post subject: Re: Up all night and never felt better? Need your help as to why
PostPosted: Sat Jul 12, 2008 11:26 am 
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Molly - thank you for all the great info. I am sold - this is not a bad price either, maybe I should return the generator for the sauna!


Yikes - Oh, yeah it was nightmarish...we had 2 weeks of smoke filled air before the 4th of July, then it cleared, we had 1000 fires around California burning (we are down to around 300 now) and then again the air filled with smoke for another week, dense smoke, the kind that when the sun shines through the windows it shines orange.

We all felt sicker, we were locked up in our basically. Oh Yeah...I felt the panic!

My husband mowed the lawn and came in chest hurting, sick feeling...I have an oxygen tank (like hospitals have with nasal oxygen) I put that on him for awhile and he felt better.

I never realize smoke this bad could make you feel so much worse. The pharmacy told me they were nearly out of RX inhalers and that "healthy" people were getting sick.

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