posted
Sammy... I am still praying for you!! I so hope you can get over this soon! Please, Lord Jesus, touch sammy with your healing grace!
Sammy.. I second the valium. My husband gets vertigo and has to take the valium with meclizine when it gets bad.
I would think that valium is better than Ativan for this.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
So an ID doc comes to a very sick person, gives her no help and hard times her about treatment she gets elsewhere. Is anything more cruel and evil than this? Seems like such a person should get a complaint made against him.
We take our lives in our hands going to hospitals.
[ 10-29-2012, 09:34 AM: Message edited by: poppy ]
Posts: 2888 | From USA | Registered: Mar 2004
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Yeah, poppy, pretty much. Disgraceful isn't it? If I hadn't been through similar scenarios myself with very sick kids, I might wonder whether something like this could really ever happen because it's just so unreal.
Unfortunately it does happen, over and over and over again.
I can recite "chapter and verse" every single detail of my family's struggle with these DDs for the past several years.
When an ignorant, arrogant so-called doctor encounters a patient who has been through the ringer and back again and has the gall to cop an attitude, it is a slap in the face to all of us.
How dare one person who possesses an MD degree question other MDs? Would this so-called doctor question a rheumatologist or a gynecologist or a nephrologist or a general surgeon? Of course not!
Sammy, I am sending prayers your way. I am so sorry you are going through this. I hope there is a way for you to return to your home.
Posts: 1885 | From here | Registered: Jul 2012
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Rumigirl
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Member # 15091
posted
Oh, sammy, this is truly terrible. What about the idea of home-nursing visits instead of rehab?? That sounds like a much better idea, if possible.
So the neuro wouldn't up your dose of meds to help??!! Did you ask about trying valium instead of ativan?
And what about an ADH imbalance, as we discussed above? (Anti-Diuretic Hormone causing a build-up of endolymph in the inner ear). That's a quite likely cause.
Why did the neuro insist on a spinal tap? And then you weren't kept flat afterwards?? Grrrrr. That is always something to insist on after a spinal tap (too late now, of course). They just made you worse!
Can't you ask for a consult with a pain management doc while you are in the hospital?
I hope that you have your migraine meds with you---not that they are a magic bullet, but they can help. But you need more percocet, or even something stronger for now.
Sigh, I wish WE could be your drs!!
More tomorrow.
xoxo
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
sammy,
I am so sorry for all of your suffering.
Heavenly Father, please wrap your arms around dear sammy and cover her with Your protection.
Please heal every sickness in her body, fill her with strength and hope, and let her know how much she is loved.
Lord, I ask for extraordinary wisdom for all of her Dr's and protection for her LLMD.
We know that all things are possible through You, and I thank you in advance for sammy's healing.
I ask all of this in the name of the Father, and of the Son and of the Holy Spirit. Amen
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, I am so sorry you are going through this. You should not have to deal with all of this. There are some good recommendations here.
Did the neuro say why he wouldn't increase the meds? I remember you saying before how you have come to during surgery because what they gave you was not strong enough. Do you think the meds this time are not as strong for you as they might be for someone else? Maybe you could talk to the neuro about this. People metabolize meds differently. Can you get another opinion?
Big prayers for you continue.
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momindeep
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posted
Praying for you today Sammy.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lyme in Putnam
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posted
Good thoughts and prayers Sammy.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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momindeep
Frequent Contributor (1K+ posts)
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posted
I hope that things are better for you! Will be praying again today for you and asking the Lord to be your help in trouble.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
** Update 10/ 30/ 12 **
Thank you all for your continued thoughts and prayers. They are much needed and appreciated.
My spinal headache wasn't going away so they finally decided to do a blood patch this afternoon. I've been in headache misery since Sat. I'm still resting flat hoping that this procedure will really help.
Physical therapy had been working with me on using a cane before I got the horrible headache. It is supposed to provide extra sensory input so I know where I am in space. So hopefully it will help to prevent falls. She says that it won't necessarily stabilize me. Clear as mud?!
Anyways, I want to go home. I'm going to deny inpatient rehab if they insist. My PT says that I can get vestibular therapy at home for awhile until I'm better then go to an outpatient center.
Home health was supposed to come talk with me but that hasn't happened.
I have a new neuro this week, he's the same guy that sent me home too early without proper work up. Anyways, he increased my antivert / meclizine to 50mg three times daily. I also take half mg of Ativan three times daily. As far as I can tell they are not doing much.
They say I most likely have vestibular neuritis or labrinthitis caused by the viral infection. So I still need outpatient testing, I have an ENG scheduled for nov 20th. Have to follow up with ENT for mor tests too.
I'm just so tired and I want to go home. I'm not getting my antibiotics. They don't even wan't to give me my low dose Percocet for my back pain from the still healing fractures. They also aren't taking care of my port well. I had to refuse use until I got heparin...
At least they did give me my IVIG on thurs. They were smart enough to realize that you shouldn't withhold that. It would be like knowingly suppressing my immune system while they are trying to get me better after recovering from a serious virus, not smart.
So that's what's going on. Please pray that this blood patch works and helps to relieve my headache. That my meds start calming my ears so that I can feel less vertigo and dizziness, and have better balance. That I will be truly medically ready to go home tomorrow!!!
Thank you friends, you all are my true friends Posts: 5237 | From here | Registered: Nov 2007
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Sammi
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posted
sammy, thanks for the update. I pray that the blood patch and the increase in meds will help you ASAP. You have been through enough already.
I think it is shocking when Lyme patients are in the hospital that they are not allowed to continue their protocols. It is wrong. I am glad you got the IVIG at least.
I am also praying everything can be handled at home and that you will get out of there very soon.
Hang in there okay?
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momindeep
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Member # 7618
posted
I'll pray too, that you are able to go home. I will pray that things will fall into place and that you can move on from this incident and leave it behind you.
I'll ask the Lord for that.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- IV magnesium and IV Taurine, with certain vitamins can help. I hope they consider that in the hospital. At least the magnesium and taurine.
There are medical articles that support IV magnesium in hospital. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I'm praying sammy. Thanks so much for updating us. I hope you get some relief from these symptoms ASAP.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying for exactly what you asked for, dear sammy.
Thank you for the update.
May God bless you in an amazing way.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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I was going to suggest that you sign yourself out AMA (against medical advice) if you do not think the docs are helping and you feel safe enough to go home. Hubby did that once in New York -- a long story.
Anyway, I know you do not feel in control of your own medical care while in the hospital and I can understand that feeling 100 %. But you do have the right to refuse any tests or meds the docs there offer you. Since you are already not on friendly terms with the docs there it probably wouldn't make much difference in your care, unless you would have to deal with them in the future.
I know how hard it is, but maybe you need to do some research and see if there is any other option if you need to go to an ER some time in the future.
Please try to schedule a phone consult with your LLMD ASAP if that is an option.
I am so sorry you are dealing with so many issues and don't feel like you are moving forward with your treatment.
I do think going home would be preferable to in patient rehab -- at least at home you could get back on the meds your LLMD has prescribed and I know how important it is to have a routine.
Praying for you.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - thinking about you and praying for you.
If you were to go home - what kind of support do you have? Friends, family, neighbors, church, etc? Someone there at almost all times to help you. Or near enough that a phone call could get a helper to you should you be by yourself at times and need help.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Sammy. I'm so sad and upset that you are having to go through this. I'm not near as bad as you, but I use Valium and Phenagran when I get just a portion of what you have...
Sounds like baby doses.........I Pray the Lord steps in , although we know He's with you now, and moves on the mind and hearts of these doctor's and nurses.
I know you feel at their mercy, but is there some way to say I need at least part of my ABX's or call customer services and warn them that you could get worse fast and will hold them liable?
I know that sounds iffy and somebody else might have experience with this.
The pain issue ,,why /what are they saying as far as not helping you? Is another doctor, one of your's, controlling that?
This is anybody's nightmare. I'm so sorry you have to go through this. Our Medical system is just simply going down hill and fast.
Not that I watch TV much. I did catch Rosie O'Donnel about her heart attack and her mates weird tumor making disease that took several doctor's for both of them to get fixed, said "She feels sorry for anybody without her kind of money ,who is ill with anything slightly different". They had to go to at least 18 to find help.
We're praying for you, love you , and so wish you didn't have to go through this. Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
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posted
Have they scanned for ear infection???or that behind the ear one that really messes people up? Posts: 2563 | From Denver,CO | Registered: Aug 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
**Update 10/31/12**
Dear friends, I'm finally home! I'm exhausted and feeling really sick but so glad to be home.
My brain is tired so I'll have to answer your questions from above tomorrow. I'm up late finishing my much needed antibiotics.
Please pray that I'll be able to get an appt with my PCP tomorrow. The hospitalist discharged me with only 3 days worth of the ativan and antivert to treat my vertigo. How crazy is that? I thought he'd at least give me enough for a week...or to get through the weekend.
I have a visit scheduled for my LLMD next week so that is good.
OK, I'm really not feeling well so I have to get off the computer now.
Thank you so much for your continued thoughts and prayers. I greatly need and appreciate them.
Posts: 5237 | From here | Registered: Nov 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - so glad you are home and checked in.
I have thought about you so many times today.
So I had IVIG today. My levels around 900. Doctor asked if I wanted to go longer than 3 weeks between infusions. Sure - would love to. But that is not what I said. I thought to myself - what would Sammy do? Probably think what I think - get IVIG as often as you can!
I was so glad to get home - you know the feeling! Needed a Bicillin shot. So gave one to myself as I have the past few times. Thinking of and thanking Sammy for all her help - I don't think I would have ever learned about the VentralGlut locations w/o Sammy's writing about it. What a difference - and Sammy - thanks so much!
In turn I have been trying to come up with reasons for your latest problems. Have the doctors given you a diagnosis?
The only thing I know vestibular-wise - is what I have seen with a friend's dog. Canine Vestibular Syndrome? or such. The dog was given two meds. I think one might have been an antibiotic. Great help, huh?
It is nuts that the ER did not give you an Rx for more meds. Of course they expect you to immediately be able to get in and see another doctor soon after release.
Would one of your doctors - one that sees you often and knows you well - be able to call in Rx's if you could not get to their office?
Sorry - am rambling. So glad you are home. And hopefully doing a little better?!
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
As Dorothy said in the "Wizard of Oz".....
There is no place like home! God bless you, you have been put thru the wringer and pulled behind a Mack truck.
Praying you will be better just being at home in your own bed!
May God bless you and watch over you....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, I am SO glad you are home! I am sure you are completely fried. I don't blame you for taking your antibiotics.
I hope you sleep well back at home with your kitty (kitties?).
As someone else posted, maybe your doctor can call in the meds for you so you don't have to go in. If not, maybe your Lyme doctor can call in enough until your appointment next week. It is good that you are going.
I hope you can rest well. Prayers continue!
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dbpei
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posted
Be well, Sammy. Thinking of you and so happy to hear that you are home.
Posts: 2387 | From New England | Registered: Aug 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Ahhh...Glad you are home, Sammy. Will continue to pray for you and keep you close in my thoughts throughout the day.
Praying that this will resolve and you can move forward with other things.
Thanks for keeping us posted throughout, even though you feel/feeling horrible...it gave/gives us specifics to pray for.
Hope your day is blessed in many ways.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Sammy, I came across this article and have actually met this woman at a vestibular support group. Her story is quite amazing. Perhaps there is a component of it that could be of help to you.
I hope you are continuing to get better now that you are in your comfy home.
Posts: 2387 | From New England | Registered: Aug 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Very happy that you are home, sammy.
Still praying for you. Please keep us posted.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Sammy, I am just catching up on Lymenet (been out of town). I just want to warn you about the ENG. I had severe vertigo, and was told by the hospital to get an ENG done. When I called to schedule it, the nurse actually told me she wouldn't do it if she were me.
She said it makes some people's vertigo worse. Mine was so bad that it wasn't worth the risk for me to help them determine if my vertigo was from a virus or something else. Try acupuncture to get rid of it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
After much personal research I decided to try HBOT first. My rationale is because I needed something to treat the still active virus and the inflamed nerve in my ears "vestibular neuritis".
I had my first treatment on tues and was amazed that the vertigo was GONE when I was at treatment depth. I got so excited because this was a sure sign that my ears can heal.
As the pressure in my ears slowly went down through the rest of the day I could see that it really did help reduce the vertigo some! It's going to take probably several more but I'm happy and excited.
Right now my balance is still very poor, I still fall and stuff. To the outside observer, no one would know or believe that my vertigo has improved slightly.
But I'm happy with the small improvements. Several smalls will be big:)
I've got more to update so I'll have to come back later tonight.
Thank you so much for all your love, encouragement, positive thoughts, wisdom, prayers...
You all have been so good to me in my time of need when I really felt like I couldn't make it through one more thing.
THANK YOU
Posts: 5237 | From here | Registered: Nov 2007
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dbpei
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posted
So happy for you Sammy!! This is very exciting news.
Posts: 2387 | From New England | Registered: Aug 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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nonna05
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posted
glad your home hope you can get your doctor to give you what you need, prayers and love...nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Haley
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Member # 22008
posted
That's interesting Sammy. I was concerned about HBOT because I thought it might make ear problems WORSE. I have severe tinnitus and pain in my right ear.
Glad you are feeling better.
Posts: 2232 | From USA | Registered: Aug 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I have heard that HBOT can actually help people get rid of tinnitus. I hope it helps your vestibular problems. Let us know how everything goes for you. Sending positive thoughts and prayers your way.
Posts: 2387 | From New England | Registered: Aug 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praising God and praying for more improvements and healing for you dear sammy.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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