posted
with the shortness of breath, pains, legs, chest, calfs......
I presume it is all lyme related but I do wonder if there is real immediate damage happening...
I go to bed at night and think is this it for me.....i am missing something.....what if.......
i just wondered if anyone else felt like this......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Yes, I had many days like that. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
me too. and some days i just didn't care if i did or not.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Florence... I felt like that before I started treatment, the pain was so horrific and I didn't know what was wrong. I honestly wondered every night if it was going to be my last, and like raindibear...I just didn't care, anything would have been better than the pain.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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feelfit
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Member # 12770
posted
normal.....many, many times Florence. Sorry that you're dealing with this.
Posts: 3975 | From usa | Registered: Aug 2007
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sparkle7
Frequent Contributor (5K+ posts)
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posted
Yes... I can relate to what randibear says.
We are all just trying to do the best we can on a daily basis.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Like the others, I have been there as well. It's not a fun feeling is it?
I can remember the exact moment - where I was, etc. - when I thought to myself that if this was it...if this was going to be my life moving forward...how could I possibly keep going.
Try to hang in there! It gets so tough at times, but don't ever give up.
I wish you lots of strength and all the best!
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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posted
Yes, there've been times I've felt so bad it seemed surprising to me that I did NOT die.
Other times I've felt so bad I've wished I would die just to get relief.
Sometimes everything has been so messed up by lyme and co that death seems like the best option.
Usually I just plug away hoping that someday I'll be well enough to begin the overwhelming task of rebuilding my life.
Many things come and go so I try to think that whatever is flaring will calm down later--it'll pass. Some things hurt all the time but they've hurt for so long that I tune them out.
Hang in there with us Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
oh i am....i think days are just so long and when you lie down at night......with all the fleeting stabbing pains, aches etc.......you wonder......whats really going on inside........
its not like a feeling I want it to end....more like a physical pain...could something happen to me.......is there something more immediately wrong than this drawn out illness........what if.......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
We do want to find out what exactly is causing all of our torments but it's usually quite evasive.
I've always been into health foods, natural remedies, etc. Sometimes, you really just need to take a pain med & not think about it so much.
We all need a vacation from the pain to be able to think again. Just what I have observed... All of the things I've done still hasn't gotten me well, yet. It's been 15 years.
We need a little peace sometimes.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I've been very sick with lyme for a long time (decades) but in all that time I never felt like I was going to die in my sleep until the year before I was diagnosed with sleep apnea.
I talked to both my daughter and husband about my feeling that I might not wake up so that they would be prepared because I felt that it was going to happen. It was all explained when I got my diagnosis. Sleep apnea can and does kill people in their sleep because you can't breath and you might not wake up in time to breath. I don't have the feeling now. It left with adequate treatment for sleep apnea.
You may not know on a conscious level that you have it and it is not uncommon in lyme patients so please consider talking to your doctor about getting a test for it.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
thanks Terry.....my pcp mentioned about a sleep study a while ago...but didnt follow through..........I will talk to my LLMD next appt........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
ah I see. I was reading about sleep apnea today. I've been awakened because I've stopped breathing and also have had half asleep awareness of paralysis. This is part of sleep apnea no? What does one do about it?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
You have to get a C-pap machine if you have sleep apnea. I don't have it but my significant other does.
He hates using the machine but it does seem to help him.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
i dont think this is related to sleep apnea.....I think its just a fear of whats going on inside.............
sleep disorder may be a side subject......but i dont think its apnea......my husband says i twitch and i do have restless legs but its more to do with the thought of whats really going on inside.........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
I not only wondered if I'd wake up in the morning, I was so drained and worn out from the pain and suffering from this disease I prayed every night I would not wake up in the morning.
The only thing that kept me going was thinking about how hurt my family would be if I gave up the fight and let this disease kill me. Last December I had lost all hope I would live to see another Christmas with my family. The pain, the hopelessness and the darkness of this disease had pretty much sucked the life out of me.
Fortunately I finally got better using natural medicines and now feel like I have my life back. The point is, yes, this disease can make you wonder if you'll ever live to see another day. But if you keep fighting it, and don't give up, you can eventually beat this disease. Hang in there!
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Yes, I think I know what you mean. Night time is the worst for me. I used to get the fear of dying a lot more often, but since treatment for the last year and a half I only have it sometimes now, but it is still overwhelming.
My thoughts about dying are anxiety-driven b/c of Bartonella I think. Spasms of fear about my death appear out of nowhere. It can be debilitating for me.
Before I was diagnosed and began abx treatment I wanted and expected to die. It was a passive thought. I would have let it happen and not tried to stop it. I didn't have the energy or the mental ability to cope.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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I have Bartonella as well. Is that what causes so much aniety? Like we aren't anxious enough...lol!
Florence, I know what you mean. I've often wondered if the disease has damaged major organs, etc. It's frightening to think about it.
I feel better making sure I have a full physical every year. In fact, I'm about to have my echo and MRI...just to keep on it and be sure.
You're not alone!
[ 05-31-2010, 08:24 PM: Message edited by: jwick25 ]
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Yes, some of it was just wanting to not wake up; getting tired of constant suffering. And some of it was thinking, that no way can you feel this bad and live.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by sutherngrl: Yes, some of it was just wanting to not wake up; getting tired of constant suffering. And some of it was thinking, that no way can you feel this bad and live.
You described my feelings perfectly and so much better than I did.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by jwick25: Leelee,
I have Bartonella as well. Is that what causes so much aniety? Like we aren't anxious enough...lol!
I am not sure how much of my anxiety and sheer terrifying thoughts are Lyme and how much are Bartonella, but I tend to think most of mine is the Bartonella.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
I felt like that but did not know what I know today.
At that time my therapy was not covering everything ,supplements not the must one on board,not good detox.
Nothing to lose so I started rocephin IV 3gr per day gentamycin 120 IV ,B complex IV ,B6 100mg IV and flagyl 250 X3 time a day, artemisinin 100 x3 a day, olive oil extract x3 .
And msm allot of them,phosphatidylkoline,D-riboze,carnitine, vitamin D3 ,probiotics.
First day that I started mention IV therapy above no more thinking will i survive till tomorrow,but how can i help my body to heal damaged organs and cells.
I think everybody with Lyme should have on board strong ABX for lyme and something that covers co infections at least babs and bart and viruses.
And when you fill like dying your body is telling you to go IV because every cell in your body is suffering from infection ,no food for cells,bad detox .
I hope moderator will put the must list o supplements on the top of page so everybody know what is must .
Posts: 482 | From Nebraska | Registered: Feb 2010
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posted
often i feel like i have to FIGHT to wake up every single morning. there's a heaviness on top of me and i imagine it's a lot like how someone on their death bed feels.
Posts: 220 | From Kansas | Registered: Mar 2010
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