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 Post subject: Discouraged
PostPosted: Tue Dec 16, 2008 11:46 am 
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I'm so discouraged.....probably that's just part of it. I feel like i'm getting worse, not better in a lot of ways. I.E.- sound and noise sensitvity used to make my pain worse- now it feels like they are going to cause me to pass out or have a seizure. I've never had a seizure, but 2 times recently i feel like my brain is on rapid misfire....that could lead to one. Think it's just the enemy jumping on a new opportu nity to induce fear. My autonomics are getting worse....BP doubles when standing... and just found out i'm not getting enough oxygen at night- sleep apnea? red cell parasite? Autonomic dysfunction? Is it worth the recommended sleep study? Any thoughts?


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 Post subject: Re: Discouraged
PostPosted: Tue Dec 16, 2008 12:25 pm 
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Hi Polly,

I have had so many symptoms - I can relate to many of yours. I often wonder if some days my "discouraged" thinking makes me feel worse, I think it does!

This disease is VERY discouraging, one day up, one week down - I think what is most discouraging are the times I have felt I was likely through the worst of this and then slammed like it was day one again. Yes, discouraging I know.

I studied sleep apnea recently, because I believe I have had it several times, it is scary, it is a lyme symptom.

Many w/Lyme report this symptom and also the "disappearance" of it during treatment. Some do sleep studies....yes.

I also get such noise sensitivity at times, it is like I have super human hearing and it hurts to hear normal sounds, I have literally used ear plugs.

Also, I have never had seizures either, although - I now wonder - I have had (so hard to describe) spinning sensations that brought me to my knees crawling and shaking ... I have wondered if they were a type of seizure. I apparently have had brain lesions for years (years before I ever pursued what was wrong w/me) and I have always had dizziness off and on. Many w/Lyme have brain lesions, a mainstream Md told me they can cause many weird sensations.

Lastly - it is all about fear to the enemy and using the symptoms of this disease to scare us to death is what he hopes, 1 Peter 5:8 (Amplified version) "Be well balanced (temperate, sober of mind), be vigilant and cautious at all times; for that enemy of yours, the devil, roams around like a lion roaring in fierce hunger], seeking someone to seize upon and devour"

Remember though their are 365 "Fear Not's" in the bible - one for each day. I could give many scriptures here, but I will close w/this one:

Have you not known?
Have you not heard?
The Lord is the everlasting God
the Creator of the ends of the earth.
He does not grow weary, he does not tire,
his understanding is unsearchable.
He gives strength to the weary,
and to him who has no might he increases strength.
Youths may faint and be weary,
and young men may fall, exhausted;
but they who hope in the Lord shall renew their strength.
They shall mount up with wings like eagles,
they shall run and not be weary,
they shall walk and not grow faint.

I hope you feel better - don't be afraid,
Dana

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 Post subject: Re: Discouraged
PostPosted: Tue Dec 16, 2008 4:27 pm 
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Mtnmomma,

We all feel your pain. Battling Lyme/co-infections is an up and down journey. One day you feel amazing, the next it seems like nothing has even progressed and severe depression and discouragement hits. The best thing you can do is completely BURY yourself in positive things and the Bible while it lasts. It's really hard to do (or atleast it has been for me when those times hit) because everything just seems so gloomy and hopeless...but if you can push yourself into it, it'll help a ton and you'll feel a lot better.

The symptoms you're feeling I've also felt at times. There were times where I thought my heart was going to stop or my brain would seize from the incredible things I felt...but nothing ever happened like that and anytime something like that happens I have to remind myself that exact thing...it hasnt happened before so why be worried about it now that I've been in treatment and am getting better despite what FEELINGS may tell me.

Do your best to not dwell on the bad and fear, use that same time and energy to try and do something good for yourself and keep yourself flooded in good things!

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"...I am the LORD who heals you." - Exodus 15:26


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 Post subject: Re: Discouraged
PostPosted: Tue Dec 16, 2008 6:54 pm 
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Thanks so much for the encouragement!!! I appreciate and pray for you guys!


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 Post subject: Re: Discouraged
PostPosted: Tue Dec 16, 2008 10:41 pm 
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I want to add a reply but i am so tired and need to go to bed -

but i had a sleep study last friday - haven't gotten the results back...........

I have the apnea feeling at night = like someone is choking me!!

My doc in GA said there was no need to have the study done but since it was the end of the year and this was about the only test i haven't had .........i thought - why not??

But i do have a friend who works in sleep study and she said that "you may feel like you need oxygen at night - but unless you really do - are having severe apnea - it is not wise to be on oxygen - b/c your brain becomes dependent on it"

write more later


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 Post subject: Re: Discouraged
PostPosted: Wed Dec 17, 2008 7:34 am 
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just want to let you know you're in my thoughts and prayers. I know it can be discouraging at times. I am coming off my worst month ever. Unfortuantly it's the name of the game. We usually get worse before we get better. just do what you can, and rest when you can.
thinking of you,
j

_________________
"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: Discouraged
PostPosted: Wed Dec 17, 2008 11:25 pm 
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Hi Polly,
I am sorry you are experiencing so many overwhelming symptoms at once. I know it can be frightening. If you are seeing a trusted LLMD, you need to discuss your symptoms with him/her. Not knowing for sure what medications you are on or combinations of drug therapy, there could be a toxicity from the Lyme; but also a contraindication or need for a change or lower dosage. There are so many variables and even though some symptoms can tend to be common w/Lyme, it usually comes down to the individual and how the immune response, stage of the disease and other differential factors come to play. My first thought in reading your symptoms is whether you are on a tetracycline right now. Either way, please do call your physician.

I will be praying for you, too. Please stay in touch with us so we know how you are doing and what your doctor is doing to help you through.

Blessings,
Sojourner

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He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. Wait for the LORD; be strong and take heart and wait for the LORD. Fear not, for I have redeemed you; I have called you by name; you are mine... When you pass through the waters, I will be with you; the waves will not overcome you...For I am the LORD, your God, the Holy One of Israel, your Savior www.stylebyheatherrose.com


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 Post subject: Re: Discouraged
PostPosted: Thu Dec 18, 2008 3:14 pm 
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I'm on Zith, Omnicef and Mepron. I call my LLMD, but don't get a lot of return phone calls. Switching to a closer LLMD so i can have face time more often. There are so many ?s with this disease, so i would like more contact than i'm able to have with my present LLMD. He does have me stay on meds straight through with no breaks??- could be the reason for all this?!? I decided to take a 3 day ABX break at Thanksgiving because i hurt so badly. have been back on since then though. Keep waiting for the gradual move towards healing!?! Guess some stuff has improved slightly, my LLMD says this is a snail disease. Progress will be really slow. Some stuff has gotten worse. Continuing to seek Him!
Thanks!


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