I stupidly suffered it out at home for four days; severe headache, spinal pain, neckache; knew this was a possible complication. I was just too sick and fatigued to try and find a ride to ER (husband in CA, alone with 14 year old.)
Finally last night after not being able to wake up for 16 hours (had PCA there watching Cody) and severe pain continuing for the fourth day, I bit the bullet and came to ER.
The doc took one look at me and said he thought I had meningitis. The extensive spinal tap yielded very little spinal fluid, so I sit here awaiting another one by an anesthesiologist with dread.
As my husband is away, I have an 18 year old PCA staying with Cody (long time family friend, like a daughter to me.) Thank God she is still on break from college until the end of the week. She also drove me to the ER.
Because they have not ruled out bacterial I am on isolation, and on IV Vancomycin, Gentamycin, and Ampicillin. Seems silly to me because if I had bacterial, I would be dead by now, and it is a clearly known (although rare) side effect of IVIG.
Posted by Lymetoo (Member # 743) on :
VERY sorry to hear this! I hope you are doing better very soon. Keep us posted.
Posted by seibertneurolyme (Member # 6416) on :
Prayers for you Tracy.
Hubby has had 3 spinal taps -- one by a neurologist in his office. The second one he was unconscious in the hospital and wasn't even aware of it. The third was by an anesthesiologist -- probably the easiest of all.
You will get through this and maybe all those meds will do something helpful. Sure sounds like a powerful combo.
Bea Seibert
Posted by Pinelady (Member # 18524) on :
Prayers Tracy.
Posted by sixgoofykids (Member # 11141) on :
Feel better Tracy. At least the IV abx will also work a bit on the Lyme. I hope you get good results from the IVIG despite all that you're going through.
Posted by davidx (Member # 8326) on :
Hi Tracy-
Sorry you are going through this. Aseptic meningitis is definitely a risk factor with IVIG. The neuro who is treating me with ivig mentioned that some people will have this reaction and it sounds like you are one of them unfortunately.
The abx they have you on are a good idea just in case it is bacterial but from the sound of things (the fact that it came on after ivig) it sounds more likely to be aseptic. But better to be safe.
Once you get out of the woods on this (and you will), you may want to slow down your infusion rates or space them out more in time. Instead of doing 5 days in row, perhaps go to 2 doses every other week for awhile.
I hope you feel better soon.
-David
Posted by dmc (Member # 5102) on :
Oh Tracy, nothing ever goes smoothly for you. Hope you recover and feel better soon.
Posted by sk8ter (Member # 8671) on :
Praying for you Tracy.... Know that we are all sending healing thoughts your way.....
Posted by Silverwolf (Member # 9196) on :
<<<<< Tracy' >>>>>,
Prayers are going up for your healing dear one!!!
Here's hopes and wishes to for a quick recovery!!!
Jus Silverwolfi and TxC'
Posted by springshowers (Member # 19863) on :
Yikes Tracy. Sorry your going through this. Sounds like what i did. I waited 3 days before going the ER and was white as a ghost and by the time I got there they too wanted to do a spinal tap right away. They thought I had menagitis too. They tried to do the tep literally 5 times and got nothing. I told them I was done and they had to get someone else in with me. They did and the new doctor was able to do it. My back still is sore and bruised from all that mess. It turned out i did not have menagitis but a gram negative bacterial infection of the blood. They told me it was the most severe they had seen. They grew it in the lab and if it grows betweeen 9 and 24 hours it is the real deal and after 24 hours a contamination. They said mine was already growing before 9 hours and the ID doctor asked me how I handled being at home 3 days prior the the hospital.
WE SHOULD NOT WAIT LIKE THAT!! I guess we think we want to be tough because we ARE already so tough.
I told them I am so used to enduring so much pain and illness I guess I just figured I would get through it..
They were not happy with me at all. I was lucky I made it through.
Do not rule out the bacterial infection. I hope they are taking blood samples for many sites and trying to narrow down what is going on. Have they taken cultures? I assume so...I asumme they are testing for both things at once..
Thinking of you. I hope they figure it out fast and you get the right meds to treat whatever is going on.
I feel for you and know what your going through. Hang in there. Glad your at the hospital now..
Its scary scary stuff. ...
Makes you wonder about the risks we take to try to get better.. ya know?
I have been thinking about that more and more. I know you have been through a lot through the years with the picc lines too..
Blessings.. Hang in there.. Keep everyone posted.
Spring
Posted by steve1906 (Member # 16206) on :
Hi Tracy,
Hope you feel better soon!!!
Roy Posted by sickpuppy (Member # 23846) on :
Feel better and that's right, we shouldn't wait so long. You poor thing!
Posted by joalo (Member # 12752) on :
Praying for a speedy recovery.
This disease sure makes us tough! Maybe to tough sometimes... Posted by JR (Member # 16898) on :
Sounds like you haven't gotten a definite diagnosis yet ?
Posted by laurajeanne (Member # 23825) on :
Meningitis is the worst. My heart goes out to you. Prayers too.
Posted by Limeaid (Member # 22357) on :
Tracy, I hope you feel better very soon. Take care, Limeaid
Posted by Tracy9 (Member # 7521) on :
Spring showers, they did do just that, took blood cultures from several spots. They are supposed to come back in with my blood test results shortly.
This is the first time in the 3 days I have been here I could even really pick up the computer, I have been in the WORST excruciating pain of my life. I have been told I sent my family a fairly illegible email saying I was in the hospital and not to call (not that any of them would visit, believe me.)
My mother managed to get through to the floor here but they wouldn't tell her anything so I agreed to talk to her briefly just to reassure her I wasn't dying....it wasn't THAT kind of meningitis.
Anyway, the neurologist covering me decided I did NOT need a second spinal tap, took me off all the antibiotics and off universal precautions. She said it was clear I had "aseptic meningitis" which is a side effect of the IVIG.
So that is my definitive diagnosis.
Thank God I did not have to go through another spinal tap. I am in the worst pain I have ever been through in my life. I have not even been able to pick up the computer, turn on the TV, nothing but lay here and cry and vomit my brains out. This morning have a little reprieve, they tried a new pain med which helped a little more.
My problem is I'm allergic to Morphine, the Dilaudid made me itchy all over and depressed my breathing, other things were not touching the pain, so now I'm on IV Torradol, 800 Ibuprophen and 10 mg Valium for the neck stiffness and that combo has cut the pain a little. I can't even describe the severity of the pain.
I have been here now two nights and they said I will have to stay until the pain is under control and manageable at home. The doctor said hopefully I will be discharged by Saturday.
I am so glad to feel even a lessening of the pain today. The doctor said meningitis is one of the most painful things a person can have. My breakfast is here and I am scared to eat because I have vomited everything since yesterday....but the doctor said to try a little so here goes.
I am just so glad I can keep my eyes open and type today!!! So far!!!!
Posted by JR (Member # 16898) on :
For those wishing for more of an understanding of aseptic meningitis:
is there anything i can do? ya know sometimes just food restaurant coupons for the kids will help or something? cody need anything?
do YOU need anything?
Posted by Stacyb (Member # 13084) on :
Tracy,
I hope you are home soon Posted by Pinelady (Member # 18524) on :
Tracy I too am allergic to morphine/demerol.
I am a stadol girl if you need to try it.
Posted by linky123 (Member # 19974) on :
So sorry you have had such a difficult time; I can't even imagine what you have been through.
Our thoughts and prayers go our to you and your family.
Take care and God bless.
Posted by springshowers (Member # 19863) on :
Ughh.. Tracy.
I so relate to your pain. SOunds like we went through the same thing.
Nothing was helping my pain either and it was so horrible and they kept trying things and I was crying like a baby and moaning. They would say "we do not know what else to try or what we can do for you" I told them they did no understand how bad it was. I already endure constant pain so I am not a complainer that is for sure. I finally got them to give me my baseline meds for my pain of MS Contin and then they tried all sorts of things and I only got like one or two hours at a time.
Until around the 5th day when I could feel my brain and lungs and body tingling as the infection was calming down and the inflammation was calming down. What a relief even though it still hurt I was able to feel it improving.
And I also did not eat til around the 5 day and I so can relate to what your going through.
Try apple sauce. That was the first thing I took dabs of on my tongue. I did not even want to eat either.
They put a new picc line in to treat the infection for 14 days after .. and did that the same day they did surgery to remove the port and man I was so poked and prodded and I was so sick of it. It is traumatic to even be in the hospital for us sick with Lyme.
I also sent out messages nobody could understand on my phone via text. Everyone told me there were not enough numbers to make a phone number and my family had to call around to hospitals to find me. LOL> I know the pain can make us just so out of it and can not even use our brains it gets so bad......
It sounds so much like what i went through and I was afraid to tell people how bad it was so they would not worry..
I relate to what your going through >!!! I hope your crossing that line where you can eat and that pain starts to subside. It sounds like your at that day and it was the day after I felt like you they discharge me... You sound like your days are so much like mine were.. Scary stuff..
Hang in there.. Hold on and it will get better..
Then what are they doing to do about your treatments? If this is a side affect or from the IVIG stuff? Yikes. I wonder about all we do and go through to try to treat this disease. I have been wondering lately about how these sorts of things can be so scary and even the thought of whether we are going to make it through.
I am contemplating just quiting it all.. My family wants me to look into IPT IV therapy. Oh goodness.. I dont know..??
More IVs and more treatments and more more risks.
You have been through alot.. a very lot.. I hope that there is not anymore of these complications or scares in you or your families lives..
It is too scary...
Blessings..
Get home safely and snuggle up in your own bed soon!..
Posted by Tracy9 (Member # 7521) on :
Woo hoo! I'm going home today. I am not going to inpatient rehab, they are ordering physical therapy in my home and sending me home with a rolling walker. Thank God. They finally found a pain med to work, Fiorocet, and I am out of the excruciating pain that has terrorized me for the past week. I am so grateful.
Yesterday they were saying I was so deconditioned I needed inpatient rehab following hospital stay for physical therapy. I am so, very excited to be going home, and a day sooner than planned.
I am so happy they finally found a pain med to work. I can't describe the desperate feeling of wanting to cut your head off and having NOTHING work on the pain. I also hate the feeling of being drugged and out of it so I'm very glad the Fiorocet just makes me sleepy and not drugged feeling.
They said it will still take at least two weeks for the meningitis to heal, which puts me right into my next 5 days of IVIG starting Feb 8th. I'm not sure what my LLD neuro guy has done, but I know he called the floor here yesterday because the nurse came in and asked my permission for them to talk to him.
I have to follow up with him and need to try to get there before my next IVIG starts. Transportation will be the issue, he is 2 hours away.
Thanks for all your well wishes. I am just ecstatically glad to be out of pain. I hope it doesn't come back. I just can't describe it....I laid here every day sobbing and vomiting...this is the first day I am not in that state.
THANK GOD.
I am on my own with the kids now....so I hope we can figure this out. I am hopeful and positive we will do well. And someday, I'll get my house cleaned and reorganized. I am going to come out of this torture feeling great and better, and starting a new, healthy life. I just know it.
Posted by Tracy9 (Member # 7521) on :
JR, thanks for posting that link on aseptic meningitis. Fortunately the docs here were up on it being a complication of IVIG so I got good care and well versed medical coverage, though the neurologist covering me, who was excellent, said if I were her patient she would never let me have IVIG again.
Luckily I'm not!!! It's my last hope for recovery. My understanding is meningitis is most common after the first infusion; so I'm hoping I got that over with now!
Posted by springshowers (Member # 19863) on :
Take it easy at Home Tracy. It has taken me two weeks not to even start feeling like I recovered from the whole ordeal.
I hope you can get some help at home or your son can help you so you can rest rest rest rest....
It is a lot to be in the hospital and our bodies have to recover from the whole ordeal and our immune systems being taxed and messed up and with.. too..
Good Luck.
Glad your feeling better.. Whew.
As a matter of fact. I started having that same pain again come back at night the first week.> I hope they gave you some pain meds for home too>!!
Posted by davidx (Member # 8326) on :
Hi Tracy-
Glad you are on the road to recovery!
Is it possible to split up the time a little bit next round so that you don't get 5 days in a row? Some doctors are substituting 2 days every other week for the standard 5 days in a row (i did 5 days the first month then switched to 2 days every other week).
Not sure what the infusion rate was but perhaps slowing it down next time might help? I get the infusion over 4 hours each time.
One of the other potential side effects that some people get is a spike in liver enzymes. You may want to see if your doc wants to to do a quick blood test just to be safe.
-David
Posted by Dekrator48 (Member # 18239) on :
Tracy,
So sorry that you have gone through such torture!
I am happy that you are able to get home today.
I understand horrible intractable pain in the head and neck where you would like to cut your head off.
I hope this never happpens to you again, and your health improves.
Praying for you and Cody.
Bless you.
Posted by karenl (Member # 17753) on :
Tracy,
thanks for posting. I hope you get better soon and also hope your kid recovers from this event. I am very happy I decided against IVIG. Take care. Karen
Posted by aMomWithHope (Member # 19255) on :
Tracy, Glad to hear you are going home. Please rest and make sure your body is strong enough to take IVIG again. You are braver than me--I would be too freaked out to even think about doing another round. Keep us posted.
Posted by seekhelp (Member # 15067) on :
I'm glad to hear you're doing better Tracy. I too would be scared to death to retry IVIG, but I understand when you're at the point of no hope treatment wise, you gotta take big risks. Good luck.
Posted by Tracy9 (Member # 7521) on :
Everyone, Thanks so much for your posts. I can't tell you how much it means, especially having really no family support, although my mother suddenly seems to have come around a bit (though she lives far away.) She actually sent me an ecard, I almost died!!!
I have to tell you in case you haven't noticed; the more it gets me down, the harder I fight back. IVIG is my last hope. I would walk over hot coals again and again to get better. I was "the one" who everyone said did too much, never stopped, overachiever times ten before I got sick, and I'll be damned if this is going to make me quit IVIG.
If I knew I was going to get meningitis every month, I'd still do it as long as that Fiorocet worked.
The pain was weird in that it lifted almost as suddenly as it came. It was just...gone! I have been home now for 24 hours and haven't need to take any Fiorocet, which is good because I haven't been able to get anyone to go to the pharmacy and fill it. I did take a Vicodin last night, but otherwise I've been taking 800 mg Motrin for the pain, which is more in my back, shoulders and neck, and some in my head.
I am ALWAYS in bed so now it's weird to be told I'm going to be in bed for the next two weeks. My head is hurting more tonight than it was up until now, and I'm going to sleep soon. I have to follow up with the neurologist next week, and will make an appt with my LLD for the week after.
Seekhelp, your post above explains exactly how I feel. I don't mind if my LLD wants to switch things up, like 2 days a week instead of 5 in a row, or a different brand, or a slower rate, but I am not quitting. I was a little scared by the person who emailed me and told me they got meningitis 3 times....but other than that, it's onward I go. I have no choice. I'm 48 and I have a 14 year old and a 20 year old to raise, and I just last week became a single parent.
I have to get better. That's it. Thanks again, your posts lifted me up, and I needed it. I have nothing else but the support of all of you here and on Lyme Friends. It means the world....
Posted by linky123 (Member # 19974) on :
You are a brave girl. We will continue to keep you in our prayers, and hope whatever you and your llmd decide to do next is the answer.
Yes, Lymenet is a lifeline for so many of us. I don't know what we would have done without it.
So many caring folks who take the time to help others in spite of being ill themselves.
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I hope you get good results from the IVIG despite all that you're going through.
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