Topic: sammy is in the hospital again with severe vertigo--they don't know why
Rumigirl
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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 ]
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Dogsandcats
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I will leave it here for now.
I will be praying for her, she is really having a rough time.
Please keep us posted.
-------------------- 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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BoxerMom
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susank
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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.
-------------------- 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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dbpei
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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.
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Pocono Lyme
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Praying for Sammy and will continue to do so.
Hopefully she hasn't had a steroid injection to her spine.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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AuntyLynn
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Poor Sammy!
May our Heavenly Father touch her with His perfect healing power ... and guide the doctors who care for her.
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Dekrator48
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I am praying for sammy.
She has been through so much.
-------------------- 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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Jane2904
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Praying for Sammy. Hope they figure it out.
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Sammi
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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?
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beths
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Sending healing thoughts
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Catgirl
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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.
-------------------- --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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posted
Sending prayers for sammy. May the Lord bless you, keep you safe and heal you.
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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.
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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.
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Tammy N.
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Sending prayers and good wishes. Vertigo is such a terrible afflication. I hope it miraculously just disappears.
God Bless.
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Razzle
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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.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Tammy N.
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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.
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Rumigirl
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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 ]
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Sammi
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Rumigirl, please tell her we are all praying for her and hope she feels better soon!
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lax mom
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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.
posted
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
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Dawn in VA
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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.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Rumigirl
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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!
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sparkle7
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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!
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Dogsandcats
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Moving to general
-------------------- 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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nonna05
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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
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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.
-------------------- Faithful
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lymeinhell
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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.
-------------------- Julie _ _ ___ _ _ lymeinhell
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momindeep
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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.
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sammy
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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!
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lax mom
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Hi sammy! So glad to see you post an update. I pray they figure out what's wrong and get you better, fast.
Keebler
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- 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. -
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Rumigirl
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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.
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Keebler
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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). -
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Dekrator48
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So glad you were able to get online and update us sammy.
Will definitely keep praying for you!!!!
Big hugs!!
-------------------- 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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Ellen101
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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.
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lpkayak
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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???
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Rumigirl
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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).
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posted
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!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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momindeep
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Still praying.
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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
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momindeep
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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!
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sammy
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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.
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sammy
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**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.
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posted
Praying you feel better soon. So sorry you have to go through all this...take care and hang in there..
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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momindeep
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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.
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dbpei
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Member # 33574
posted
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?
Posts: 2387 | From New England | Registered: Aug 2011
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Nonna
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