posted
Just got home from the hospital. After 12 hours in the ER a room finally opened up and hubby was admitted with a paralytic illeus.
Hopefully he will be released tomorrow. Has an NG tube and a foley and is on oxygen -- his pulse ox falls to 87 or so without his CPAP.
He vomited once at home and 3 times in the ER. G.I. and back pain has stopped and he had a bowel movement so hopefully things are moving again. Sweating seems to have stopped as well and for now tremors/myoclonus/seizure-like episodes have stopped.
Will post an update late tomorrow.
Bea Seibert
[ 09. January 2007, 11:13 PM: Message edited by: seibertneurolyme ]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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hshbmom
Frequent Contributor (1K+ posts)
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posted
Hello Bea,
That problem is no fun...my dd dealt with it in September. They shouldn't release him until he's able to go normally again, but they usually want to discharge you once you're colon is empty. He could still have the ileus once he's empty and medically stable. Cleaning out doesn't imply the ileus is resolved...ileus is just the term for a non-functioning gut for some reason (vagal nerve paralysis due to Lyme disease); it results in constipation & obstruction.
Did your husband vomit water containing bowel contents/poop? My dd did and she was diagnosed with "vomiting and diarrhea" and sent home. She was in the hospital a week later with a fecal impaction.
My dd's x-ray at the ER showed her colon was still full of bm, but they said "it was normal...go home...she's fine." If she was fine, why did she still have pain, still couldn't have a mb, and feel full of it?????
Give Dr. S a call; her number is on her article at ILADS publications. She'll return your call.
I'm praying for you and your dear husband.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hiker53
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posted
Bea,
You and your husband are in my prayers!! Hang in there. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 9018 | From Illinois | Registered: Aug 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Bea, I hope he's feeling better soon. Hang in there and take care!
Has he been tested for porphyria? (just curious)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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I can't believe what you and your poor hubby have been through. I'm saying prayers for both of you.
I'll also say one for the doctor who tries to send you home too early!
Posts: 460 | From Illinois | Registered: Aug 2005
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hshbmom
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posted
Hi Bea,
I sent you a pm with the contact information.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
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posted
bea, my heart goes out to you/hubby for all you both have been suffering thru for so long! best wishes they get this turned around, and he finally shows IMPROVEMENTS!
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Jill E.
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posted
Bea,
I always think of you and your hubby, wondering how things are. I am so sorry you are both dealing with yet another challenging episode.
Did the doctors at the ER at least believe he has Lyme Disease? Usually, that's a hurdle for all of us, on top of everything else.
Please keep us posted.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
so sorry to hear about this bea!
do you have any other people who can take over when you cant be at the hospital?
I am an expert at foley catheters now--i had one for the month of sept and two week this december. If hubby is released with it, let me know if you need some tips!
best of luck, and speedy recovery, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Hubby is still in the hospital. They are keeping him one more night. Should be released tomorrow (Saturday) if all goes well.
He had a soft diet today and was actually hungry. If he has a normal bowel movement tomorrow I think he will be released. He has had some diarrhea today so hopefully things will be working more normally tomorrow.
Not sure they really believe he has Lyme etc, but at least this was a fairly obvious problem that they knew how to treat.
He saw 4 docs and as they were older they decided to be conservative with both meds and treatments.
After we got past the ER doc it was better. The ER doc would have just sent him home after the pain meds helped (kept wearing off and had to be medicated 3 times) except that he kept vomiting even with the compazine and phenergran.
The admitting doc called me out of the room and went through the "It's all psychiatric" routine. The reason for this conclusion was that hubby was not vomiting normally!!!!! In the 30 years this doc had been in practice he had never seen a patient who had tremors/myoclonus in conjunction with vomiting/dry heaves.
I politely explained that he had been seen by numerous psychiatrists and that the only meds which had really significantly helped him during the last 5 years were IV Rocephin, Quinine/Clindamycin and IV Primaxin.
Next he wanted to know in what way these meds had helped -- I told him that hubby knew who I was and didn't get lost anymore and could usually walk a straight line anymore and had stopped passing out and no longer had episodes of temporary paralysis etc. I must have been convincing as he was very friendly this morning.
Without the pain hubby's tremors/myoclonus can be mostly controlled with the IV Ativan. The doc could see the difference this morning.
The doc even thought to test for toxoplasmosis when I couldn't remember if hubby had had that test before -- asuming it was negative. And to cover any G.I. bacteria the doc ordered an IV antibiotic which I had never heard of -- IV Mefoxin (Cefoxitin).
The admitting doc said there was no such thing as a Lyme specialty in medicine and when I mentioned ILADS to him he had never heard of them. Thought we were talking about some kind of alternative medicine practice. Think I will print out their guidelines and some general info for him when I get a chance.
The G.I. doc was actually pretty friendly according to hubby -- he ordered a gallbladder ultrasound just to cover everything. That was normal. The doc even asked hubby about Phosphatidylcholine and the P.K. protocol -- seemed interested.
The G.I. doc felt that possibly one of the 2 viruses hubby had (end of October and end of November) might have contributed to the paralytic illeus. Hubby did have milder G.I. symptoms when he had the ER visit back on 12/3.
The neuro was also somewhat helpful. Will order a lumbar MRI to rule out any obvious cause for hubby's low back pain (new symptom since August). Also decided to try a low dose of a muscle relaxant while hubby is in hospital. He will get 5mg of Flexeril before bed tonight.
Overall this was probably the best hospital experience hubby has had. We were surprised that the hospital docs were so friendly when we can't find a primary care doc here in town.
Hubby knew some of the nurses and had worked with relatives of some others so the nursing staff also got good marks.
Thankfully I had read about Nancy's horrible experience before and had read the journal article by Dr S. We did casually mention to a couple of the docs that a paralytic illeus had been documented in the medical literature as a potential Lyme complication.
If my printer had been working I would probably have given the docs a copy of the journal article to further their education. I may still do that in a few days as it never hurts to get the word out.
Thanks for the prayers and well wishes. I think hubby will be fine -- just need to revisit the acetylcholine issue again and figure out how to keep this problem from reocurring.
I think hubby's G.I. muscles actually spasmed so hard they become temporarily paralyzed -- which is what used to happen with his skeletal muscles.
Constipation had nothing to do with his problem. He actually had 2 bowel movements around 10:00 am. Had vomited some supper the night before and some breakfast that morning. Tried to eat a little lunch and that is when the pain got much worse. We waited a couple of hours and tried several things before he went to the ER.
The unusally loud stomach noises and the sweating episodes were the real clues that something was not right -- plus the pain which hubby rated as an 8 or 9.
Signing off for the night now. Will post an update tomorrow.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea- prayer sent for a good outcome. Posts: 2708 | Registered: Feb 2005
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Michelle M
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Member # 7200
posted
Bea, you are an absolute Goddess. A national treasure.
Sending my best wishes to you and hubby and glad your ER experience was a relatively good one.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
michelle, you took the words right out of my mouth; GLAD this was a POSITIVE experience and drs. are receptive to you/your educating them!
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posted
I might get a swollen head if you all keep on!!!
Hubby is very unhappy -- docs decided to keep him another day. Doesn't feel as well today. Had a pretty bad seizure-like episode this morning which the nurses recorded.
Of course the nurse initially left the room to go get the blood pressure cuff etc to check his vitals. When she wasn't back in 5 minutes I went and got another nurse.
The second nurse was more experienced and said to give him the IV Ativan even though it had only been 4 hours since his last dose. Episode lasted a total of about 15 minutes and included tremors, myoclonus, head shaking and teeth chattering. Hubby froze up and couldn't talk and he had a claw hand as well.
He came around somewhat when the nurse decided to change the dressing on his PICC line. Mumbled something about the "blond babe". No not me -- the nurse was blond. At least he didn't grab her hair and ask her not to leave him like he does to me sometimes!!!
The neuro wants to put him back on seizure meds -- will give Keppra a try again. He doesn't think hubby was on it long enough before to know if it would help.
Don't think hubby will be able to take the Flexeril (muscle relaxant) -- has anticholinergic properties as do all muscle relaxants. Think it has slowed down his G.I. today. Will wait until he is more stable and then maybe try it again.
Thanks again for all the kind thoughts.
True -- Don't think he has been tested for porphyria, but not 100 % sure. The blond nurse actually had a virus herself and was in the hospital for a week recently with a paralytic illeus so it is possible this wasn't even caused by Lyme etc.
Trails -- they took out the catheter thank goodness -- doesn't sound like fun to be stuck with one.
Nancy -- Your mailbox is full.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Dear Bea,
I hope your husband is doing better.
Please forward the contact info of this dr so I can go punch him for you.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Bea,
Haven't been over to general in a while & I am so sorry to hear your hubby is so ill in the hosital.
Thanks God he has you to watch over him- like a gaudian angle.
I will keep both of you in my prayers
sending healing thoughts & hugs
Hang in there and I hope he can be released & feel better soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
rats; another day in hospital; so glad he has you bea! they broke the mold when god/your parents created you.
as you said, it's a good thing he didn't grab the rn; might have scared her off ... glad the blonde babe helped him when you needed someone too. keep updating us as you feel up to it; we love you both bea!
never heard you mention hubby's first name; what is it please? i'll name him in my prayers ok!
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hshbmom
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posted
Hello Bea,
So glad to hear you dh is improving. I know he's probably chomping at the bit to go home, but at least they're waiting until he's better.
I'm glad you're having a relatively pleasant hospitalization.
I emptied my mailbox.
BTW, my dd is now on Lortab 5 and Ultram ER and hasn't had one incidence of digestive problems. She was so scared to take them because of their potential problems, but the pain got so bad she was willing to risk GI problems. She's still on narcotics...and has been about 2 months.
I was hoping this problem in her spine would fade away in 6 weeks like the digestive problems did. It hasn't happened yet.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Hubby released from hospital Sunday afternoon -- may have been too soon. He is having worse back pain this morning and stomach rumbling and cramps -- time will tell I guess.
Had about 3 seizure-like episodes daily while in the hospital. Various degrees of severity. Nurses did a pretty good job overall. Unfortunately doesn't look like the Keppra (anti-seizure med) will work out -- caused stomachache, headache and eye pain.
Thinking back I am wondering if those other episodes we thought were viruses in late October and late November were actually milder versions of a paralytic ileus. The abdominal xrays from 12/3 showed an excess amount of stool, but did not show the distended stomach and bowels that were visible this time.
Waiting to see what the lumbar MRI report says -- scheduled for Thursday. Hubby thinks the back is the key to the G.I. problems, but I think the back pain is simply referred pain -- am curious as to which of us is right.
Bea Seibert
P.S. Nancy -- Sent you a p.m.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
bea, thanks for posting update!
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dontlikeliver
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posted
Hi Bea,
I've only just seen this. Sorry to hear of the hard time your husband and you are going through. Hope he comes out of this soon.
Hugs DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
I, too, just saw this, Bea. I hope he is better soon. Hugs to you both!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Jill E.
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Member # 9121
posted
Bea,
You and hubby continue to be in my prayers.
I can't remember if I asked you this before, but has hubby ever been treated for Bartonella?
My myoclonus, tremors, weird hand movements, head movements, etc. did not come on until about the same time my Bart test went positive.
We are having to take Bart treatment very slowly with me because one time I woke up with my hand moving downward so strongly, I thought it would go into a claw hand.
I asked my LLMD if these weird hand movements and other myoclonus and all are typical with Bart, and he has seen it.
Just throwing one more thing out there because I can relate to so many of your hubby's scary symptoms, and I am correlating mine with Bart worsening as the best guess.
Are there any GI Motility Departments at any of the hospitals near you? I used to go to one in Los Angeles before I realized it was Lyme. I have since heard that several of the patients being treated for motility issues and small intestine bacterial overgrowth have told the doctors there they are Lyme patients.
I doubt a motility lab would understand Lyme but maybe they would have some helpful advice for symptomatic treatment.
Please keep us posted.
Jill
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Boomerang
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Bea, I just saw this. Hope your hubby is feeling better!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Update -- Tuesday night. Hubby has been home for 2 days now. He is mostly back to his usual symptoms -- still some additional upset around mealtimes. Don't think any of the new meds are going to work out.
Will get MRI of lumbar spine on Thursday -- maybe that will give us some more info.
Put hubby back on oral liquid Phosphatidylcholine -- starting at 1 tablespoon instead of 2 tablespoons. Will add back other supplements slowly.
I have pretty much been laid up in bed myself the last 2 days -- caught a really really bad chest cold in the hospital. So far hubby has not caught the cold.
Hubby has been looking out for me -- bought me gatorade and kleenex and cough syrup and got me some chili from Wendy's.
Hopefully I will be up and about tomorrow and can talk well enough to make some calls to docs and get some things lined up for hubby. We just seem to be spinning our wheels lately treatment wise.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Boomerang
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posted
Glad he is home.
Sorry to hear you've got that "crud" stuff. A lot of that going around. It seems to last quite a long time.
Take care.
Posts: 1366 | From Southeast | Registered: Sep 2005
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bettyg
Unregistered
posted
bea, sorry the flu hit you too since your immune system is down with hubby being in hospital and your staying on top of all his health issues/talking to drs. etc. best wishes and prayers to you both.
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hshbmom
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posted
Hi Bea,
How are you guys doing now?
Jill's post is true for my daughter too.
I learned last week that my daughter's "stretch marks" indicated a Bartonella infection. They aren't in the normal direction that stretch marks should be in. Some are normal, some are more diagonal, others are completely the opposite direction that they should be.
These marks are light pink and are on her abdomen, back, and upper arms. She's very shy. I'd never seen the ones on her lower back, below her waist. She's grown so much the past 3 years I thought this was normal. She's 5' 8" with a large frame.
The LLMD said he frequently sees seizure-like movement disorders in Lyme patients. He said their EEGs and MRIs are often normal because these are sub-cortical seizures.
He said the sub-cortical region of the brain controls the limbic system. EEGs only measure cortical seizure activity. If they could measure sub-cortical activity the EEG would show abnormalities.
Has your husband been evaluated for Bartonella? Bartonella can severely affect the body, especially in conjunction with Lyme...and it can cause Lyme treatment to be ineffective.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Thanks for your concern Nancy. Wish I could say all was smooth sailing, but I just got back from hubby's 2nd ER visit this week. Two days ago they did an abdominal CT -- indications of paralytic ileus. Today they only did abdominal x-rays -- hubby's back and stomach pain were worse, but supposedly xray was normal.
Just trying to hang in until Monday. Have a flight to Pittsburgh, PA to see a new LLMD neuro.
Hubby has been treated for Bartonella -- 3 months Levaquin, could only take 20 Rifampin pills over about 30 days and then 1 month of Cipro. This was a clinical diagnosis by the Dr B based on history of G.I. symptoms primarily.
He does have some abnormal EEG's -- no seizure spikes though. MRI also abnormal -- shows 4 or 5 white matter lesions.
Hasn't had a thorough neuro exam in 3 years as things were improving until he developed back pain last August -- basically no antibiotics since early August as well when he had gastritis, duodentitis and superficial gastric ulcers on endoscopy.
I am leaning more towards an untreated Ehrlichia infection contributing to the overall mess. Will see what new LLMD thinks. Not exactly looking forward to the trip, but know we need some help from someone with a new perspective.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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5dana8
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posted
good luck Bea with your appointment in Pa
I hope your new LLMD can come up with some solutions & a good treament plan
praying & hoping he can find some releif
You hang in there Bea too. It must be very stressfull for you as well ay this time
hugs & healing Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
bea, you are such a strong soldier beating the drum continuously to get your husband better!
my he's so lucky to have your DETERMINATION that if this doc can't me; i'll research to find one that can help my beloved hubby!!
thoughts and prayers headed your way for your trip to new dr. MAY THIS BE THE MIRACLE HE NEEDS/DESERVES!
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