I spoke to sammy about a week ago, and she was in the hospital due to severe vertigo that had been going on for 3 weeks unabated. She couldn't walk or stand by herself, and was throwing up a lot.
They couldn't figure out the cause. She didn't seem to have a lot of congestion, was taking Allegra, anihistamines, nasal sprays, was taking anti-nausea meds, tried meclizine---and nothing was working.
Now she is back in the hospital again. It's still no better, and no one knows the cause.
I had several suggestions for her from a CranioSacral point of view, but I guess those didn't help either. I was hoping that she could see an CranioSacral Therapist, but that probably didn't happen.
I think they already tried the Epley manuever.
When she's in the hospital, they don't continue her IV abx either.
She asked me to ask people to please pray for her. I'll get more info tomorrow. (I presume the mods will want to move this to General, but if you could at least leave this here for people to see, that would be good).
Arghhh! As if she didn't have enough to deal with! I truly believe that by now she is a saint, as is Bea, and many here; I'm not even joking.
She was supposed to make a trip to see her LLMD at the end of the month, but that isn't looking likely now.
[ 10-25-2012, 01:13 AM: Message edited by: Rumigirl ]
Posted by Dogsandcats (Member # 28544) on :
I will leave it here for now.
I will be praying for her, she is really having a rough time.
Please keep us posted.
Posted by BoxerMom (Member # 25251) on :
So sad to hear this.
Positive thoughts and healing energy her way.
Posted by susank (Member # 22150) on :
Ugh - I was starting to get worried when I saw that she had not posted for some time.
I will certainly be praying for her and that the doctors can figure out what is going on.
Posted by dbpei (Member # 33574) on :
So sorry to hear this. Sending my thoughts and prayers on her behalf. Sad commentary for our health system when an illness progresses to this point and doctors are clueless.
Posted by Pocono Lyme (Member # 5939) on :
Praying for Sammy and will continue to do so.
Hopefully she hasn't had a steroid injection to her spine.
Posted by AuntyLynn (Member # 35938) on :
Poor Sammy!
May our Heavenly Father touch her with His perfect healing power ... and guide the doctors who care for her.
Posted by Dekrator48 (Member # 18239) on :
I am praying for sammy.
She has been through so much.
Posted by Jane2904 (Member # 15917) on :
Praying for Sammy. Hope they figure it out.
Posted by Sammi (Member # 110) on :
sammy, you are in my thoughts and prayers. I have been worried about you also. Vertigo is the worst. I hope they can find the cause soon. I am so sorry you have been through so much.
Hang in there okay?
Posted by beths (Member # 18864) on :
Sending healing thoughts
Posted by Catgirl (Member # 31149) on :
Poor Sammy! :( I feel for her. I had this too. I got it after I was bit. Mine was also severe (hospitalized). A couple of nurses told me that I had the worse case they'd ever seen. Nothing they gave me in the hospital worked. Epley manuver only helped a tiny bit (negligible).
I was absolutely miserable until a physical therapist at the hospital taught me to focus on an object in every room so I could at least walk slowly. That at the very least made it so I could go home. Even after the hospital released me, I couldn't go out to my mailbox for six weeks without throwing up.
Rumigirl, please tell Sammy that acupuncture helps. It helped me even more than physical therapy. Nothing worked better than acupuncture. My husband drove me to my apts (couldn't drive for 3 months). It was worth every penny.
Posted by debilyn (Member # 35753) on :
Sending prayers for sammy. May the Lord bless you, keep you safe and heal you.
Posted by prayerworks (Member # 37602) on :
Father God, we present to You Sammy and ask that you intervene on her behalf and restore her health. Give the doctors the wisdom they need to offer relief to Sammy's condition. And give Sammy and her family the strength and courage they need to trust you once again to see her through one more time. In the name of Jesus Christ we pray. Amen.
Posted by soccermama (Member # 35101) on :
Father, I lift Sammy to you. She is Your daughter and one who has an abiding faith even though all her difficulties.
I pray that in your mercy, you will go to the very source of her illness and heal her.
I am crying out for justice for her. Draw her close and whisper your tenderness to her.
Posted by Tammy N. (Member # 26835) on :
Sending prayers and good wishes. Vertigo is such a terrible afflication. I hope it miraculously just disappears.
God Bless.
Posted by Razzle (Member # 30398) on :
Didn't she recently start parasite treatment? If so, could this be a parasite herx...?
I second the acupuncture. Everything I've read about vertigo says acupuncture is well worth the attempt, that it may help a lot or even stop it completely.
My MIL has Meniere's (and yes, I think Lyme is a possibility, but can't say anything to this person about that, unfortunately) and has been hospitalized with severe vertigo, too.
She figured out that avoiding artificial sweeteners and other artificial food additives has made a huge difference for her, and she hasn't had a flare since she stopped all the food additives.
Posted by Tammy N. (Member # 26835) on :
Razzle - that's interesting about the possible parasite treatment connection. That reminds me, a good friend of mine developed some very serious bouts of vertigo when he started parasite treatment.
What a shame that Sammy will probably not be able to have an open-minded discussion with the docs at the hospital (not try to be pessimistic, just speaking from my own personal ER experience and what I've heard from others.) Hope she feels better soon.
Posted by Rumigirl (Member # 15091) on :
They are now making her talk to an ID dr (arghhhh!), and want her LLMD's name and info, etc. And she is worried, and rightly so. I have to call her back in a few minutes. Lord have mercy!
(I thought that they had her LLMD's name and info, but she never gave it to them, thankfully. They are pressuring her for it, but she won't give it to them. The ID dr wanted to call her dr to see how long she will be on the abx.
She has the "perfect excuse," because she has an immune deficiency, and her immunologist said she will probably always need to be on some abx.
[ 10-25-2012, 01:17 AM: Message edited by: Rumigirl ]
Posted by Sammi (Member # 110) on :
Rumigirl, please tell her we are all praying for her and hope she feels better soon!
Posted by lax mom (Member # 38743) on :
Praying and praying!
Vertigo was one of my first symptoms and it was horrible. In my case, it was caused by an antidiuretic (Spironolactone that was in YAZ) that was working too well.
Antidiuretic hormone imbalances can also cause vertigo.
Another possibility to consider -- 8th nerve neuritis. Years ago hubby had a dizziness problem and his doc at the time ordered an MRI to check for 8th nerve neuritis. That was not the problem though.
But a visit to a neurologist eventually solved the problem -- the neuro tested for B12 levels. Told hubby they were normal. This was before his tickborne illnesses and we were not very medically educated. The PCP knew enough to get a copy of the B12 results which we had not done -- hubby's level was 206 -- the lab range considered 200 low normal.
6 weeks of B12 shots made a big difference with the dizziness.
Bea Seibert
Posted by Dawn in VA (Member # 9693) on :
My initial neuro Sx was vertigo- I agree w/Bea above that the 8th cranial nerve inflammation is likely going on.
Orals did not do it for me all all; it took IV Rocephin to knock it down a bit.
Neurotologists (aka "balance doctors") can help you locate if the issue is central (CNS) vs peripheral (peripheral/cranial nerves) sometimes.
Posted by Rumigirl (Member # 15091) on :
I just spoke with her again and edited my post above, saying that she didn't give out her LLMD's name and info----very important! Even though he's out of state.
She was in the hospital for 5 days before, and then went back in on Monday(?). But the hospital is not doing much for her, other than keeping her from falling---which is extremely dangerous for her with all her vertebral fractures.
The neurologist hasn't so much as watched her walk, or try to walk. Excuse me??!! And he hasn't done a full neurological work-up.
I, also, was thinking that it was likely a cranial nerve involvement. So tomorrow her homework (from me) is to ask the neurologist to watch her try to walk, and to investigate an 8th cranial nerve neuritis. And a full neurological work-up!
And also to call her ENT to get him to talk to the neurologist to get him to do it.
She is VERY grateful for everyone's prayers. She can't get online, because when she tried before, she kept getting bumped off (doesn't have a lap-top, has an iPad at home).
She forgot to try the CranioSacral maneuver I recommended, so hopefully she will try that.
She certainly won't be able to make the long trip to see the LLMD next week. She's nervous about letting him know what is going on, because he is nervous about everything that she has been
going through. She's afraid he will pull her off IV or even off treatment. I doubt it, although he does get nervous about these things.
I agree, if she could be home, get her regular abx, get CranioSacral Therapy and/or acupuncture, over time, she would likely get over it. But falling is the big worry---not to mention all the throwing up.
More prayers, along with any experience of vertigo and of what worked for you---or suggestions.
I used to have horrific vertigo repeatedly for many months at a time. Before I knew I had Lyme (but did have it). I had it really bad the summer before last. Nothing in particular made it go away---tincture of time, and working on eliminating any congestion/allergies.
PS I read her your posts---good work, guys!
Posted by sparkle7 (Member # 10397) on :
Don't have much to add but I'm sorry that she has had to suffer so much. I'm not big on religion but I hope that some universal healing energies will help her through all of this.
All the best to you sammy!
Posted by Dogsandcats (Member # 28544) on :
Moving to general
Posted by nonna05 (Member # 33557) on :
Sammy, I'm so sorry to hear you have to go through yet another valley..
l Lord we thank you for your love. We ask for our friend to get quick resolve to main issue . No return just a diagnoses, treatment and healing.
Amen
I know we try to keep our LLMD's out of the line of fire, but something like this, wouldn't that be different, incase connected?
Is it OK for our main PC"s to know their names??
They want to know who is treating you on a more than one time session with these doses of meds. What if their is a bad med cross over?? Nonna
Posted by faithful777 (Member # 22872) on :
Sammy,
Love and Prayers going your way. I wish hospitals were better for us but sometimes they aren't.
Sorry I missed the original post of you going into the hospital.
Girl, I am packing to make the big move to Colorado from Virginia. Now we know I am certifiable!!
Heading out on the 17th of November with my husband, 3 horses and 4 dogs.
Love and blessings with hope that God will put the hedge around you and keep the evil out!! Remembering God's promise.
Posted by lymeinhell (Member # 4622) on :
When I had horrible, if I move my head I'll barf, vertigo, a Neuro put me on a tiny dose of Valium (2mg) twice a day. Worked like a charm and got me back to the land of the living. He said it shuts off the middle ear, where you may have a disturbance, and allows you to balance yourself (and he had tons of little old lady patients using it for vertigo). I don't think I could have survived treatment without it. It's a tiny dose, not knock you out dose. Please pass that along to Sammy. Hope she can find a way back soon. Posted by momindeep (Member # 7618) on :
Our poor Sammy...my heart hurts for her...all our hearts hurt for her.
It is hard to convey over the internet how bad we feel for each other's misery, but Sammy, just know that people care and will truely pray for you.
The Lord hasn't left you or forsaken you.
Posted by sammy (Member # 13952) on :
Thank you all so much for your prayers. It means so much to me that you care.
I hope that I can post really quick before I get kicked offline, the Internet is not strong and their system makes me reauthorize often. At least I got to check the thread today though:)
This is such a frustrating experience. I was here all last week and I've been here again since Tuesday. I feel so horrible.
I can't hardly walk, I kept falling when I was at home. The vertigo is so bad it makes me vomit. It's like looking at a kaleidoscope with the floor moving up and down too.
I saw a good PT today. She is going to contact my Ehlers Danlos PT and specialist to see if my symptoms are common with other patients. She thinks that maybe I could have cervical instability.
I also saw a new neuro. My head MRI,ear MRI, and MRA all came back normal. He watched me walk and did a better exam.
I'm not happy. He wants a spinal tap because of my immune deficiency, onset of symptoms with a virus, and history of Lyme. He also wants to see me record of Lyme diagnosis.(I have that at home but obviously can't go get it).
He ordered an MRI of my neck because of the EDS and unusual visual symptoms. And tomorrow I think I'm supposed to get some kind of brain wave test. I'm super tired...
He is also ordering an infectious disease consult. He says that I have th have someone local with my condidition.
They are not giving me my antibiotics but I did get my ivig today.
So please keep me in your thoughts and prayers. I'm just really sick and could use all the help I could get. Thanks so much!
Posted by lax mom (Member # 38743) on :
Hi sammy! So glad to see you post an update. I pray they figure out what's wrong and get you better, fast.
We are all here for you!
Posted by Sammi (Member # 110) on :
sammy, I am glad you were able to post and see how many people are praying for you!
I hope all the consults you have are productive and provide answers. I also hope you feel better soon so you can go home.
Prayers continue.
Posted by Keebler (Member # 12673) on :
- Sorry to hear about this. Along with many other considerations, if you have any balance, tinnitus or hyperacusis (sensitivity to sound), or trouble with lights . . . consider SCD. Hopefully, to rule out.
Now, while Johns Hopkins is absolutely terrible regarding lyme . . . they are fabulous regarding setting the diagnostic standards and treatment for this condition. Only a very few experts (even in neurology or in vestibular matters) know about this. Most CT scans miss it.
It can be caused by lyme, though, so if you may be found to have this, your LLMD MUST be in on what's next. Surgery may or may not be in the best interest at this time but the LLMD would be best to consult prior to any action.
Now, it may be that if SCD is involved, repair surgery could help in so many ways so you'd be better able to get better from lyme, etc. However, STEROIDS are usually used with surgery so your LLMD would have to be involved in how to make that safe.
Again, not hoping for this but it's important to consider and rule out.
SCDS Support - see LINKS to the left regarding extremely specific diagnostic specifications. -
Posted by Rumigirl (Member # 15091) on :
sammy, I'm glad you made it online to LN today.
What about the 8th cranial nerve neuritis, did you ask the neuro about that? Or did he rule it out?
Several things to consider:
Did you specifically ask about 8th cranial nerve neuritis?
the ADH (Anti-Diuretic Hormone) imbalance that lax mom mentioned above with a link is something that I had thought about and bears investigation.
trying a small dose of valium that was mentioned above.
CranioSacral Therapy to realign the cranial bones and move the accumulated lymph in the ear canal. In the hospital, you could
try the remedy that I mentioned, and perhaps have a therapist to come in to do it. Or wait for the therapist until you go home, if
it isn't possible in the hospital. But someone like that could fly below the radar, "it's my friend coming to visit." I've done CST on a friend in the hospital.
It may well be cervical instability. In that case, Prolotherapy would be the long-term fix. But, of course, you can't get that in the hospital.
The syndrome SCD that Keebler mentioned.
I pray that some relief comes soon. The valium sounds good for relief in the meantime. It's well worth a try---along with looking for a cause.
But if you could get relief enough to go home, then you could do all the alternative therapies at home.
xoxoxo Sleep well tonight.
Posted by Keebler (Member # 12673) on :
Someone on the hospital staff may be trained in this approach with either cranial sacral therapy
&/or the visceral manipulation (and if so, the nerve in the stomach that affects nausea and vertigo could be helped - vagus nerve). -
Posted by FamilyFive (Member # 37206) on :
Prayers to you sammy! Many, many, many, prayers!
Posted by Dekrator48 (Member # 18239) on :
So glad you were able to get online and update us sammy.
Will definitely keep praying for you!!!!
Big hugs!!
Posted by Ellen101 (Member # 35432) on :
So sorry to hear your having such a rough time Sammy! I hope your feeling better soon and they are able to figure out what is causing the vertigo. I'm sure this has been checked, but what about an inner ear disorder? I know my mom had an awful time with vertigo and it was realted to her inner ear.
Posted by lpkayak (Member # 5230) on :
i dont understand why a hospital does so little for this
i was in for a week with the same thing...when i went in i could only crawl and when i came out i could get to the bathroom with a walker
i dont know how i got better but it was a struggle and it took a long time
but why isnt the neuro doing something if she is not getting better???
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by Ellen101: So sorry to hear your having such a rough time Sammy! I hope your feeling better soon and they are able to figure out what is causing the vertigo. I'm sure this has been checked, but what about an inner ear disorder? I know my mom had an awful time with vertigo and it was realted to her inner ear.
That's where the endolymph could accumulate and cause vertigo. CranioSacral Therapy can address this very well.
Thank you, Keebler, for posting the link to the Upledger Institute.
(OT, but Dr. John Upledger, the founder of the Institute, just died this am, sadly. He was a remarkable DO, who really put CranioSacral Therapy on the map. He will be missed).
Posted by twicebitten (Member # 5412) on :
Hope you are better soon! God Bless you Sammi! Vertigo is an awful thing to go through. Of course mine wasn't as severe as yours and it drove me nuts!
Posted by momindeep (Member # 7618) on :
Still praying.
Posted by lovinglife62 (Member # 39329) on :
new to forum. Not sure how this works. I live in Texas and have lyme disease. After several years, finally diagnosed last April. I am seeing a LLMD, but not seeing any progress thus far. Anyone been to Envita in Arizona? Have several coinfections and CD57 is 17
Posted by momindeep (Member # 7618) on :
Lovinglife62...To get a response to your post, it would probably be better to start a new topic.
You will see the New Topic button below the reply box at the bottom left of the page.
Click on that and post your question and you will get more replies.
Welcome!
Posted by sammy (Member # 13952) on :
Thank you so much for your continued prayers. I so desperately need them.
These past couple days have been extremely difficult.
Thankfully the neck MRI came back "ok", with degenerative changes, nothing that could be causing my symptoms or be acutely dangerous.
I had the spinal tap today... Not fun. Now my head hurts really bad. I had slightly elevated white blood cells but not enough that they are concerned, no signs of inflammation, all other tests are pending. And guess what the neuro slipped a Lyme test in there too, so nice!
They prescribed tiny doses of Ativan and meclizine three times a day but it's not helping. I got sick after PT and again last night from sitting up too long:(
They are saying that if we try adjusting meds that I may have to go to inpatient rehab for awhile instead of going home. Since I will not be well enough for home and if I went home I'd likely get hurt or sick/ dehydrated and end up right back in the hospital.
This makes me very very unhappy. I want to go home so bad. Then I try to do something simple like go to the bathroom 4 feet away from my bed. I'm quickly reminded why I'm here, just how bad sick I am.
I've been trying to will myself to get well but it is not working.
I'll have to tell you about the ID consult later... Talk about a nightmare. Craziest thing was that he recognized my name from a referral that my rheumatologist sent a year ago. Worse, he knew that I had Lyme and my good LLMDs name! Talk about freaky, I never saw this guy and here he was squirreling away my info in his brain. Needless to say I was shocked.
(I did not give anyone my LLMDs name because of the way that they have been questioning my Lyme treatment.)
The consult visit didn't end well. He left angry after putting down the excellent, selfless, life changing, life giving work that my LLMD does every day. I was upset, angered and hurt that could judge and talk so poorly of my doctor without ever meeting him.
This ID doc could care less whether I suffered forever and or even died. Only our LLMDs care.
After the ID visit they called my LLMD against my wishes to verify my home med list. This made me furious!!!
They are not giving me my antibiotics there was no point in calling and alarming my LLMD. Of course no one will tell me what was said.
I have an appt next week and I wantd to be the one to talk with my own LLMDS about this. When stuff like this, not even involving the hospital, has happened in the past my doc has gotten very upset and worried. To the point where they were going to pull my antibiotics.
I can already feel myself getting sicker, I need to find a way to get home. If my antibiotics were pulled by my LLMD, I would relapse and quickly die. I know this in my heart and my head, I really feel it is true. They sustain me more than food.
So I'm really hating it here. I'm a prisonor in my body and in this stupid bed with the monitors and SCDs.
Posted by sammy (Member # 13952) on :
**Update 10/28**
I wrote most of that update yesterday.
I developed a severe spInal headache and started throwing up last night. I hadn't eaten all day so the nurse made me try after IV zofran. Well, it didn't work.
Headache is still here but they don't want to do anything for it because I already take a low dose of Percocet for my back fractures. It doesn't really do anything for any pain so I'm waiting to see a pain specialist, appt in Nov.
Neuro came by today and said that he doesn't want to try higher dose of meds. Just wait the symptoms out and may have to go to inpatient rehab.
I don't want to go to rehab.
Please pray for a miracle, that I feel better and can safely go home. Thanks.
Posted by skies (Member # 28064) on :
Praying you feel better soon. So sorry you have to go through all this...take care and hang in there.. Posted by momindeep (Member # 7618) on :
Sammy...so sorry for your miseries...I can't imagine it.
I will ask the Lord to release your symptoms and put a protection around you while you are in the hospital...a protection from naysayers and people not really in your court.
I will ask the Lord to give you strength to endure until the release comes and give you peace that He is with you right there in the hospital.
That you will be able to know in your heart of hearts that it will all be well for you and that you can set your eyes on His promise that He will indeed take care of you.
I pray that you can fall asleep and wake up feeling better.
Will be on this till you are better...rest assured that people are praying for you.
Because of Jesus.
Posted by dbpei (Member # 33574) on :
I am so sorry that you have to live this nightmare, Sammy. You have so many here praying for you. I am outraged that this is happening to you. This is so wrong.
Try to focus on getting well one day at a time. I would think that the MD could order a visiting nurse and homecare team to help you in your home if you don't want to go to rehab. Would this be a possiblity?
Posted by Lymetoo (Member # 743) on :
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.
Posted by poppy (Member # 5355) on :
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 ]
Posted by beaches (Member # 38251) on :
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.
Posted by Rumigirl (Member # 15091) on :
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
Posted by Dekrator48 (Member # 18239) on :
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
Posted by Sammi (Member # 110) on :
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.
Posted by momindeep (Member # 7618) on :
Praying for you today Sammy.
Posted by Lymetoo (Member # 743) on :
I'm in agreement with Dekrator!
Posted by lyme in Putnam (Member # 11561) on :
Good thoughts and prayers Sammy.
Posted by momindeep (Member # 7618) on :
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.
Posted by Lymetoo (Member # 743) on :
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 Posted by Sammi (Member # 110) on :
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?
Posted by momindeep (Member # 7618) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by lax mom (Member # 38743) on :
I'm praying sammy. Thanks so much for updating us. I hope you get some relief from these symptoms ASAP.
Posted by Dekrator48 (Member # 18239) on :
Praying for exactly what you asked for, dear sammy.
Thank you for the update.
May God bless you in an amazing way.
Posted by seibertneurolyme (Member # 6416) on :
Sammy,
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
Posted by susank (Member # 22150) on :
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.
Posted by nonna05 (Member # 33557) on :
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
Posted by nonna05 (Member # 33557) on :
Have they scanned for ear infection???or that behind the ear one that really messes people up? Posted by sammy (Member # 13952) on :
**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.
Posted by susank (Member # 22150) on :
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?!
Posted by Dogsandcats (Member # 28544) on :
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....
Posted by Sammi (Member # 110) on :
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!
Posted by dbpei (Member # 33574) on :
Be well, Sammy. Thinking of you and so happy to hear that you are home.
Posted by momindeep (Member # 7618) on :
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.
Posted by dbpei (Member # 33574) on :
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.
Posted by Dekrator48 (Member # 18239) on :
Very happy that you are home, sammy.
Still praying for you. Please keep us posted.
Posted by Catgirl (Member # 31149) on :
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.
Posted by sammy (Member # 13952) on :
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
Posted by dbpei (Member # 33574) on :
So happy for you Sammy!! This is very exciting news.
Posted by Lymetoo (Member # 743) on :
Praise GOD!!!!!!
Posted by nonna05 (Member # 33557) on :
glad your home hope you can get your doctor to give you what you need, prayers and love...nonna
Posted by Haley (Member # 22008) on :
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.
Posted by dbpei (Member # 33574) on :
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.
Posted by Dekrator48 (Member # 18239) on :
Praising God and praying for more improvements and healing for you dear sammy.
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Nonna
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