posted
So sorry to hear you're not doing well. I'm sending my best wishes for improvement soon.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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quote:Originally posted by lyme in Putnam: Non Lyme hospital.
- I wouldn't think they would have to be well-versed in Lyme in order to help your salt issue. (?)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Sorry to hear this LIP. I remember what it was like to be stuck in a non-Lyme friendly hospital. It was a long 2+ weeks.
Even if you don't mention Lyme initially they will want to know why you are on medicines and have certain symptoms. Then they just want to know more and more, like who is your doc. When you prefer not to say they can't handle it!
They question your doc and diagnosis. All while you are sick and just need some help...
I always tried to turn the conversation back around to why I was there at that moment, what I needed now, new questions, etc. Try to keep them focused on my current problems.
Hang in there LIP, we'll pray that you meet a brilliant physician who will help you manage this salt problem well. Praying also for comfort and healing and that God would bless and guide all of your doctors to best care for you.
Posts: 5237 | From here | Registered: Nov 2007
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Sammi
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posted
lyme in Putnam, I am sorry you are in the hospital.
Have you ever been evaluated for Addison's disease?
Posts: 4681 | Registered: Oct 2000
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Thanks everybody. Taking a lot of bloods tomorrow, Just told my husband I want a shot of clarity for this head. Hormone doc tuesday, dr. H, next week, don't know how to be me again after these couple of years, can't erase, just start from forward. It's ruined so much but educated and gave a phone number of Lyme doc to another nurse whose son has weird things arm , heart since she pulled a tick out not long ago. I want brain back.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
GIANT HUG!!!
-------------------- --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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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Still here. Psych diagnosed mood disorder with thought process. The med for that zyprexa think lowered the salt. Would u get a day of reality and snap back yo this stuff? Hate mind Meds any cause it complicates the whole body and have mthfr. I was ok on rocephin , hoping bicillin can do the same. I'm in an unreal world with the dp, but on the Meds make it worse. When I get better, it might be a day but it snaps back yo hell . Still in hosp.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
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posted
Does that mean schizo ?
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I'm very sorry to hear this, LIP. Kayak is right--Dr. B in NJ, a specialist in neuropsychiatric TBD, would be the perfect person for your doctors to consult.
And he'd be a great addition to your medical team when you're out of hospital, if that's possible. I'm PMing you with his details.
No, I don't think that mood disorder + thought disorder mean schizophrenia, LIP. These are all well-documented symptoms of Lyme & co.
I'm pasting in a link for a short ILADS brochure on psychiatric Lyme disease, and for Dr. B's article, "Neuropsychiatric Assessment of Lyme Disease." They're links #3 and #5 here:
You probably won't be up to reading these right now, until you have a period of clarity. But these will be useful for your doctors and family members.
In the meantime, I'm thinking of you and sending healing wishes. Hang in there. You will come through this.
Posts: 431 | From New England | Registered: Dec 2011
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Have you been tested for Hyperadrenergic POTS? That's when your body produces too much adrenaline when you exert yourself. Can be misdiagnosed as anxiety; many Lyme patients have POTS, and some have the Hyperadrenergic variety.
If you haven't been tested, perhaps you could be tested while in hospital? They sometimes give a drug to speed up your heart during the Tilt Table Test portion of the testing -- I've read the test can be done without, if you don't want the added stress.
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Dr h. Per decried toprol for pots.BP WAS OK SITTING STIOD WENT TO 60/48 heart rate to 138. Put me on toprol. I'll look into it. Thanks so much.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
The adrenal portion is tested -- I think -- by checking your epenephrine lying down, then standing. Laxmom had it done.
Hope you have a really good day,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
More Hope they figure our your salt issue soon!!
I also can not take the psych drugs. They make me worse. The natural stuff including fish oil along with gaba and theanine is what I am taking now to help.
Posts: 472 | From New Jersey | Registered: Dec 2007
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Jane2904
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Member # 15917
posted
Thinking of you and sending hugs.
Hope you feel better soon.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Have you ever been evaluated for Addison's disease?
This.
You may have low aldosterone caused by adrenal insufficiency. Fludrocortisone can be taken as a replacement and will help you retain sodium.
Adrenal insufficiency can also cause the POTS issues because your system becomes hyperandrenergic to compensate for missing hormones.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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posted
So sorry to hear this. I remember hubby's psych admits early on before we had any clue he had tickborne illnesses. The psych meds gave him more Parkinson's symptoms. It was a disaster.
I would advise your hubby to request that you be moved to the medical part of the hospital rather than the psych ward -- as long as you are in no danger of harming yourself or other patients. If you have documented medical problems such as the low sodium issue he might be able to argue that you need closer medical supervision.
Ask your hubby to speak to a patient advocate and then go up the ladder to the CEO of the hospital if necessary. It will be a fight, but might be worth the hassle.
Have they said how long they plan to keep you? Is it just for 3 days or for longer?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Another LymeNet friend asked me to pass this info on to you. ----------------------------------------
The most recent version of this article was published on 2011-11-26
Hyponatraemia caused by LGI1-associated limbic encephalitis
Rory F. McQuillan and Joanne M. Bargman
+ Author Affiliations
Division of Nephrology, University Health Network, Toronto, Canada
Correspondence and offprint requests to: Rory F. McQuillan; E-mail: [email protected] Received July 25, 2011. Accepted July 26, 2011.
Abstract
Limbic encephalitis (LE), once thought to be a rare paraneoplastic phenomenon, is increasingly diagnosed in patients without malignancy. Autoimmune LE has emerged as a distinct clinical entity. Autoantibodies to neuronal cell surface proteins have been described and may now be tested for. This has led to an exponential increase in the number of cases being reported.
The most recently implicated autoantibody is to the leucine-rich anti-glioma 1 protein (LGI1). This protein is involved in synaptic transmission and inherited loss-of-function mutations cause autosomal dominant lateral temporal epilepsy. LGI1 is also expressed in specific tubules in the kidney. Anti-leucine-rich anti-glioma 1 protein (anti-LGI1) LE presents with sub acute onset of progressive neurological, cognitive and psychiatric disturbance.
The condition is complicated in up to 60% of cases with severe and life threatening hyponatraemia. As well as causing significant morbidity, the co-existence of hyponatraemia may confuse the initial diagnosis. We present a case of anti-LGI1 which was complicated by hyponatraemia with a comprehensive review of the literature.
-----------------------------
The full journal article can be found at the link below.
Please read the article and share it with your doctors. I think the test you would need would be the quantitative immunoglobulins. And if the test showed abnormalities, then the treatment is IVIG.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Do you know what your globulin levels are? -- this is part of normal routine bloodwork. You should check the values from several recent bloodtests and see if they are low or just barely in range. Especially if low, there is a higher probability that your immunoglobulin levels are low as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
lyme in Putnam, I am sorry you are in the hospital also, prayers lifted in your health, mind, and family.. we love you and wishes aren't enough, I will Pray harder, God must know your needs..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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CherylSue
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posted
God bless you. Prayers for your quick recovery.
Posts: 1954 | From Illinois | Registered: Aug 2007
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nonna05
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posted
THINKING OF YOU AND PRAYERS ARE SENT FOR YOU
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by VV:
quote:Originally posted by Sammi:
Have you ever been evaluated for Addison's disease?
This.
You may have low aldosterone caused by adrenal insufficiency. Fludrocortisone can be taken as a replacement and will help you retain sodium.
Adrenal insufficiency can also cause the POTS issues because your system becomes hyperandrenergic to compensate for missing hormones.
I was going to say the same as above (or similar). You need to be evaluated for:
POTS
(Postural Orthostatic Hypotension) or Neurally Mediated Hypotension
This is usually a combo of blood tests for the aldosterone, cortisol, sodium + a Tilt-Table test for POTS & NMH.
The meds, if you have it are usually Florinef + possibly a med like atenolol to bring your heart rate down when you try to stand/sit up (sounds like H already has you on that). But without the Florinef, you will continue to have the low sodium/aldosterone.
What Bea said was also good. Plus, whatever she or someone said about getting you into the medical side of the hospital---IMPT!! You have a MEDICAL illness, for Pete's sake! (Not to say that you don't need psych meds, rx'd by someone like Dr. B, who is LL).
You definitely need your husband and a patient advocate to help advocate for you here!
Get the right help, and I hope you get answers and get home soon.
PS You might have Addison's, but you might have a lesser version of this and need Cortef (hydrocortisone at physiological doses). However, a hospital won't recognize the latter; only a holistic doc or LLMD will recognize and treat that.
Posts: 3770 | From around | Registered: Mar 2008
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Lyme in Putnam. We are worried about you. Please check in.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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ukcarry
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posted
So sorry, lyme in Putnam. Please let us know how you are when you can x
Posts: 1647 | From UK | Registered: Nov 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I told my Dr my symptoms and was RX'd desmopressin for diabetes insipidus with no testing.
Why on Earth do they have you in the psych portion of the hospital? You don't need coping skills groups and a psych med change, you need your salt levels fixed. UGH!!!
The blood test for hyperadrenergic POTS is the lying/standing norepinephrine.
I'm so sorry you are dealing with this. I hope they can find the cause of your sodium issues and give you some relief.
posted
LIP, we're thinking of you. If you can't post anything right now, just know that you're in our thoughts and prayers.
Posts: 431 | From New England | Registered: Dec 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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Member # 15091
posted
OMG, I hope that they don't still have you in the psych ward for Pete's sake!!! That is completely outrageous!! It's a very slippery slope once they put you there.
You would think that we were still in the dark ages. Well, we are!
Yes, we're concerned about you. I don't know if you have any internet access in the blasted hospital. Seems like, no.
Posts: 3770 | From around | Registered: Mar 2008
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lyme in Putnam
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Member # 11561
posted
I'm dorry, I'm still here, out of the hospital. Psych talking to psychologist, new hormone doc. The zyprexa is helping me think clearly, but they think it lowered my salt. I've od on salt, green olives, my ankles look like a blimp. I'm on lasix and florinef and fluid restriction. My psych wants meto try fanapt, said to have less side effects. I don't want to switch, my mind is in a better place but my health isn't. The doc in the hosp, when I said had Lyme for years,she turned from me saying there's no documentation. I want to hit her in the head with Dr. H. 'S book. Plenty of documentation there. Any psych med will lower my salt. When Bart frequency was strong on ondamed, the the frequencies were run and my salt dropped much, my gut says it's from Bart/ Lyme. Thanks for your thoughts and prayers. We all need our life back.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Thanks for checking in-I've been worried about you.
I am glad your brain feels clearer.
But I am angry that doc at the hosp said there wasn't any documentation regarding you having lyme.
I hope they can find something that helps you to feel better physically.
Personally I believe you that it is Bart.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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