lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I have post-traumatic stress from the last time this happened to me 3 years ago. It started as viral encephalitis, but now it is Lyme meningitis.
My LLMD, thank you God, is willing to give me IV rocephin with oral flagyl for one month to try to clear it up.
Please pray for me. I'm really, really frightened and have been crying a lot. I guess all the crying I did over my special-needs child did me in.
I've found out tears don't change a thing.
I am praying for peace, calm, and courage. Some people think I'm so brave for all I've gone through, but I guarantee, I am NOT at all brave.
Love you guys. - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Tears might not immediately change our circumstances but I believe that God hears the prayers in our hearts when we're so broken.
I'll be praying with you and for you Lymelady. *Hugs*
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Dear Lymelady, you are in my prayers! So sorry to hear this.
May you recover from this speedily.
Thanks for letting us know. And, be sure to let us know how you do.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I am in a bad way emotionally. I had a PICC placed yesterday and it was hard for the nurse to get it in.
I feel like my head has a grinding, sickening, throbbing sensation in it at the base of my skull. It is so bad sometimes that I'm ready to do myself in.
I am taking valium and oxycodone at night just to get some relief so I can get to sleep.
This is going to be a long road back for me, I think. I'm just praying that the terrible head pain can be relieved. If it can't be and I'm still suffering with it in a few months, I don't know what I'll do.
I really don't want to live anymore if I can't get rid of it. Even the thought of my children isn't sustaining me right now.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
ladyinNY,
I am sorry you are feeling so bad, sad, and hopeless. Lyme is the pits, for sure...however...there IS hope.
For me it has been really important, at times, to try to take it a day at a time, an hour at a time, even a minute or second at a time...and to be careful not to let my imagination run wild.
To envision yourself feeling like you do now...in the future...well, you do not know that. For all you know, the PICC line in...it will be a relatively short time and you could be totally on your way to healing and feeling better than you've felt in a long time.
I am praying for you.
BTW, would love for you to drop in on the God Thought thread. Pray it will encourage you and help you get your eyes lifted up higher than your circumstances (that's happened to me...and God has kept me going many a day and night.
One other thing, ladyinNY, you are precious!
Posts: 2188 | From Oklahoma | Registered: May 2008
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I hear your pain lymelady. Hang in there please.
This might sound crazy but have you tried putting an ice pack (wrapped in a towel) at the base of your skull?. I get migraine like headaches where the pressure is so bad I feel like my head is going to explode. It's so bad I can't move. I have to lay perfectly still in my bed, face in my pillow (to block out light and sound), with an ice pack on the base of my skull. I cry to myself to sleep and pray that God will help me. I never feel like it will pass but it has every time. I know that your situation and mine is not the same but I thought that I'd share it with you just incase you haven't tried the ice.
If the pain is getting worse you should call your local doc to see if you need reevaluated at the hospital. I know, that's a another nightmare. Sometimes we learn to endure so much pain that we don't realize when we should be asking for help.
*Hugs* I'm praying for you.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I am doing some better now. I just wrote a post about the trouble I had getting my doctors to treat me.
You know when you get the lightbulb going off over your head? Well, that's what happened to me when I realized my viral encephalitis had morphed into lyme meningitis.
It was hard to convince my primary and LLMD that this had happened, though. Thankfully, I got through to them and I'm now on the road to recovery.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Your persistence paid off...you did what you needed to do for you...even though you did not feel up to it.
So happy for you..."on the road to recovery." Great news!!!
Continue to dwell on that happy thought, "on the road to recovery."
Posts: 2188 | From Oklahoma | Registered: May 2008
| IP: Logged |
posted
I wish for you the peace, calm, and courage you seek. And hope, and faith. Those things will help you get through this. Even though you say you are not brave, I think your fight for your son, and your fight for your own health speaks otherwise. Courage isn't absolute; we're all afraid sometimes, and we all feel despair (and pain). Only the courageous among us look those in the eye, pick up the pieces, and continue on.
I've been in a place where people kept telling me I was brave, and always thought to myself - what choice do I have? I do what I feel I must and don't feel I am deserving of any recognition for that. If I could opt out of this disease, I surely would. But reading your words, I realize just how much courage it takes to maintain an attitude of hope and faith even when things look awfully bleak.
I am glad to hear you are doing better. Thank goodness you persisted and got the treatment you need!
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
So good to see your post today noting some improvement! I was waiting to hear this!!!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Julie,
how nice to hear that you're feeling better. I wonder, how was your lyme encephalitis diagnosed??
you have certainly been to hell and back...hang on, you're very strong!!
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi everyone, I've had 6 treatments of Rocephin and 3 days of flagyl and I feel so much better.
Feelfit, I was admitted to the hospital because I had elevated white blood cells in my spinal fluid. I was talking nonsense and was very irritable and lethargic.
I was released with a diagnosis of enterovirus causing encephalitis/meningitis.
A week later I was getting much worse. That's when the lightbulb came on and I realized that the electric headache I'd been experiencing for the last 3 years had exploded into full-blown meningitis caused by LYME. I just KNEW in my heart of hearts that's what it was. I couldn't prove it, though, so I had to beg for IV.
I must have been right because Rocephin/flagyl is helping me tremendously.
Thank you for telling me I'm brave and strong. The nurse who inserted my PICC line and who has come to my house for infusions told me he helps a lot of Lyme patients, but he said I was the most severely ill Lyme patient he has seen.
My LLMD told me that once, too.
The good news is that right now the thought of my children IS sustaining me, and I'm ready to fight again so they can keep their mama with them.
Take care and blessings to you all - Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Wonderful !!!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic