posted
A routine CBC tests for sodium, potasium and calcium.
How many routinely test blood magnesium levels?
Magnesium deficiency can sneak up on you even if you take supplements.
Hubby has been in the ER 2 days in a row this week with tremors/myoclonus/seizure-like episodes. The 2nd ER doc actually tried to be helpful. Said hubby had tetany. Unfortunately he didn't treat for that though because calcium blood level was normal.
Guess what else causes tetany? -- low blood magnesium -- of course this was not tested.
Anyway after I got hubby home I ended up giving him 12 grams of IV magnesium sulfate over the last 24 hours and he still hasn't flushed. Will test the level tomorrow.
The IV magnesium not only stopped the tremors/myoclonus/seizure-like episodes and freezing up or temporary paralysis episodes (now think this has been tetany at times in the past as well) but greatly improved the nausea/vomiting and pretty much stopped the dry heaves and G.I. muscle spasms.
Had been giving hubby 3 -4 grams of IV magnesium weekly, but he recently had mild diarrhea for several days and drenching sweats multiple times daily during babesia treatment.
The first ER visit the ambulance took hubby across the street to the hospital from the out patient blood lab. I actually had taken him to get magnesium level tested as I had wondered if it could be a problem.
Symptoms got out of control before he could get blood drawn. The ER only kept him an hour and a half and just gave 2 mg of IV Ativan and sent him home. Did test magnesium per orders but not until after went home from ER.
The next day I thought I had gotten symptoms somewhat under control before I took hubby to an urgent care facility to get a stomach xray which the ER didn't do the day before. This time hubby fell out of his chair in the waiting room office while I was trying to complete the paperwork to check him in.
Another ambulance ride. Pretty much a repeat of the prior day. Did get 2 liters of normal saline to try to correct low sodium levels and lots more IV Ativan plus oral Klonipin. But no magnesium. Levels from previous day (did not have actual tetany that day) were borderline low and naturally test was not repeated even though I discussed it with the doc.
Just a friendly reminder that even if the ER doc is friendly and tries to be helpful they know very little about tickborne diseases.
Plan to write a friendly note to 2nd ER doc and remind him that tetany can be caused by low magnesium levels as well as low calcium levels.
Red blood cell magnesium is supposed to be the best test. In the past hubby actually showed elevated magnesium on that test several times -- one alternative doc thought it was a "false positive" test and his explanation was that hubby had leaky cell membranes.
Really curious as to what the blood magnesium levels will be tomorrrow. Plan to test before I do any more IV's.
Bea Seibert
[ 21. May 2007, 02:35 AM: Message edited by: seibertneurolyme ]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I really thought I was starting to put the pieces together to stabilize hubby.
Got his bloodwork back -- big improvement. Magnesium went from 1.9 to 2.4 (range 1.8 -2.5)
Sodium went from 127 to 131 (range 135 -145)
Bilirubin was even normal.
On the other hand -- thought I was going to have to call an ambulance to transport hubby from the laundromat. He was having extreme weakness, sweating, tremors, nausea and freezing up episodes (temporary paralysis). This happened at least 3 times today.
Electrolytes are so much better I can only come up with one other possible explanation -- brain inflammation is the only thing that seems to explain what is happening.
Hubby is trying to take the mino 100mg every day instead of every other day. Went back on quinine for next 10 days today also.
Did an IV vitamin C drip this evening. Hubby has an ion foot bath scheduled for tommorrow.
I seem to be back in crisis mode and can't figure out what to do next. Ativan use is eratic and only minimally effective. Doing my best to keep hubby out of ER but nothing seems to be working like it used to before he had the priapism 3 weeks ago.
Will try to update this post from time to time.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I am so sorry for all your husband is going through. I hope and pray that you are able to find out what is wrong and find a remedy quickly.
He is truly blessed to have you to help him.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Has your husband ever tried mepron and zith? It almost sounds like a horrible babs attack.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I have had these episodes. A doctor at Stanford told me I looked like I had full blown tetenus. I had many ,many ,,many tetany seizures. So bad i would tear muscles and get black eyes from ruptured blood vessels in my face. They went away over time with treatment. I get them only occasionaly now if I am extremely taxed physically and stressed. Does your husband also have over reactive reflexes?
Posts: 160 | From texas | Registered: Oct 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Oh my goodness, Bea. I am so sorry for your hubby and what you are going through. I hope you can find the answer soon.
Sending prayers your way. Take care.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Darn.. that is so rotten for you both! Sorry!
Wish I had some magical answers.. but nothing comes to mind right off.
The only thing I see is VERY large doses of mino being used.. compared to what many who are heavily infected can handle.
And the ER visits.. reminds me of how I would get when heavily dosed with antibiotics years ago.. before I knew to go MUCH slower.
Please let us know how he is doing... ok?
And better yet.. let us know how YOU are doing. You're a saint. We all should be so lucky to have the kind of care and attention you provide.
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Idon't know enough about the brain to know if this neuro Lyme patient knows what he's talking about , but check out this story about a brain diagnostic tool that his doc used after a SPECT scan: http://cogsci.tribe.net/thread/e121df44-93da-4c8f-b8df-2428903ac8be
The guy's a good writer, obviously if he was once as disabled as he says here, this brain doc must have really worked miracles for him to be so neurotypical again.
-------------------- Symptom Free!!! Thank you all!!!!
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
I'm so sorry Bea.
I don't know how in the world you manage. I sure hope you have a support system in place for YOU.
No one, not even someone as loving and committed as you are, can keep bearing this kind of stress alone.
we're here. but i sure hope you have folks who can give you great big hugs in person, and who you can confide in, in person.
thinking of you both, and praying/hoping for you both,
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
bea, thanks for update on your hubby, and wish you were finally getting good news instead.
what a bummer, and i agree with everyone else. you are a SAINT and i do hope you have close family/friends to lean on during these crisis you continually have to face head on.
as you feel up to it, please updae us. you/hubby re in our thoughts and prayers!
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posted
So sorry to hear about the health problems your husband is having. Please know that both of you are in our prayers. May he be completely healed very, very soon.
God bless you and take care. Posts: 9020 | From Illinois | Registered: May 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Bea,
I am so sorry you both have to go threw this
Praying for both of you
I hope the added mag can help him & the mino too. Maybe the mino may help hit some of the co's too?
I really hope & pray you can find some answers & relief soon
Hang in there Bea & hubby
Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Your husband is so lucky to have you!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Even if your magnesium is low, it might not show up on blood tests.
I, too, have suffered with tetany. I was admitted to the hospital and I asked my GP to consult with my LLMD. Over the phone my LLMD told the GP to give me IV magnesium. He absolutely refused. I insisted I be released from the hospital after the GP told me to see a psychologist or he wouldn't be my doctor anymore.
When we got home, my husband gave me powdered magnesium. Voila! Within a half-hour, I was tetany-free and able to walk to the bathroom.
Those LLMDs are good, aren't they?
On occasion, I still suffer from all the symptoms Bea's husband suffers from. I take a lot of magnesium to counteract the misery of it all and it's helped a lot.
Praying for you, Bea, and your husband.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Not a lot of time so I will just try to answer questions. I do appreciate the support from everyone who has posted.
Savebabe -- I do think Babesia is at the root of many of hubby's symptoms. He is allergic to Mepron and had bad psych side effects from Larium. Currently taking Quinine -- trying this for the 3rd time and am becoming concerned that the Babesia has developed drug resistance.
Bettex99 -- Yes hubby does have overactive reflexes sometimes. It is like his light and sound sensitivity -- comes and goes from time to time.
Tincup -- Hubby started with Mino on MWF only 3 weeks ago I think -- trying to increase to daily. Unfortunately the tetany type symptoms are not new -- did go away in the past with IV Primaxin and most recently when he started back on Quinine almost 4 months ago. Freezing up symptoms were absent for 6 months previously while hubby was off all antibiotics treating stomach ulcers and trying to determine cause of back pain.
The magnesium issue is new and needs follow up this week. Hubby has never been one for overly aggressive treatment and we have no problems with decreasing or even stopping meds -- have done both many times over the last 4 years.
Lymelady -- Definitely agree that LLMD's know many things about neuro lyme that neurologists don't.
Hubby was tested in February this year for stiffman syndrome (a one in a million genetic disease) -- symptoms very similar to those in ER diagnosed as tetany. He even had low blood magnesium and was given IV magnesium in the ER but when transposrted to a different hospital for followup they didn't even bother to test to see if magnesium levels returned to normal following IV.
I have been putting off writing the neuros and ID docs at that PA hospital. The longer I wait the more things I discover they screwed up on. I don't think I am going to make any friends there, but they knew we were unhappy when we left the hospital and I let hubby fill out the patient satisfaction questionairre.
Update (Sunday)-- 3rd ER visit this week today. This time hubby presented with altered level of consciousness. I waited an hour and tried all my tricks -- except for I forgot to try IV magnesium.
Magnesium levels were high normal (2.4) on Thursday and I was waiting until this week to retest and make sure levels stayed in normal range. Had dropped to 1.9 again (low normal). As soon as I got hubby home I gave him an IV with 4 grams of magnesium. Stopped all of his tremors.
Hubby woke up in the ER shortly after they started a saline drip. Actually sodium level was good for him -- 135 where normal is 136-145. More IV Ativan and IV Demerol -- ER would not give magnesium with normal test results especially since he was not having actual tetany symptoms this time.
Looks to be a busy week with trying to get in touch with LLMD and PCP to schedule testing to figure out just what is going on with hubby wasting so much magnesium.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I read your posts and I can't imagine what you guys go through. We have a lot going on at our house but it's nothing compared to what you do.
I don't have any advice - your medical knowledge is way above mine.
I'll keep you and your husband in my prayers.
Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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bettyg
Unregistered
posted
wow Bea; 3 times to ER this week. i pray to God that things will slow down; you get correct diagnosis & TREATMENT, AND PROGRESS WILL START IMMEDIATELY! hang in there, i think of you a lot girl!
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