posted
Feeling very discouraged tonight. Hubby is back in the hospital. PCP unwilling to continue any antibiotics.
Hubby is scheduled for a repeat brain MRI (I think this is number 10 in the last 6 years) and an EEG tomorrow. Will see a new neurologist tomorrow also. Head CT tonight was "normal" of course. Last EEG was unreadable due to artifact (muscle tremors).
ER doc didn't even want to admit hubby, but I talked PCP into admission. However she has stated she is unwilling to continue tickborne treatment -- does not feel qualified and is not convinced of ongoing infection.
Hubby has had muscle stiffness/rigors for about 12 hours now -- IV Demerol quit working on rigors. IV Ativan had lost effectiveness a couple of months ago.
After he shook for about an hour hubby became confused -- he still didn't know his name or my name when I left the hospital. And yet because he has some lucid moments and can answer yes or no the ER doc was not convinced he had encephalopathy.
PCP would be willing to transfer hubby to Duke University or Wake Forest University Baptist Hospital of even University of Virginia -- we have already been to each of those places during the last 6 years and don't feel like wasting our time or money.
Anyone with a positive hospital experience ANYWHERE or know of an LLMD with admitting privileges? Starting to get a little desperate here.
Pretty sure this is a Bartonella issue -- hubby had a great day yesterday -- had stopped Cipro for 2 days and got out of bed for first time in a week. Today was his 2nd day on Cipro at an even lower dose (125 mg). It was right after he took the Cipro that things started going downhill.
Bea Seibert
P.S. I don't believe in the permanent brain damage theory but PCP is leaning that way.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Bea said:
quote:P.S. I don't believe in the permanent brain damage theory but PCP is leaning that way.
I'm with you, Bea.
My LLMD has admitting privileges in Northern Va, but he doesn't go to the hospital like he used to do. Not taking new patients either, that I know of.
I hope you are able to find someone who will help you. I don't blame you for avoiding the hospitals you mentioned.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sorry to hear this, Bea.
I know lumbar punctures are not a walk in the park -- trust me, I REALLY know.
However, sometimes they can be useful to detect encephalopathy. (Elevated proteins, compromised blood brain barrier, etc.)
I do realize chances of Bb in spinal fluid are next to nil.
It's still under certain circumstances a useful test.
If he can get admitted, or even outpatient, this might be helpful.
Sorry things aren't better.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Bea
I am sad sorry to hear this
Don't have any useful suggestions, just want you to know you are both in my prayers Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I wish I could offer more.
Sending your husband and you heartfelt prayers and Angels to hold you both.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
Bea,
I am so very sorry your husband and you are going through this painful and scarey time. Just remember that you are not alone. There are people who care even if they don't have anything specific to offer.
This is a terrible, terrible disease.
Prayers your way
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I am so, so sorry Bea- Give him a hug from me!!! And one for yourself, too. Wish I could help- Sincerely, Sarah
-------------------- 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
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Bea,
My good wishes for relief and positive life are with you.
As you know, I've also been presenting many odd neuro symptoms, that have been difficult to pinpoint. Reading your post, I had a shiver of what could happen to me, and I'm glad I just saw a neuro who seems to be open. I'm going through systematic testing now. And I'm on Lyrica.
Has your husband tried Lyrica, or other anti-convulsants? My heart goes out to him and you.
One thought: do you think it could be useful to try and contact Dr. F. at Columbia? Maybe they could admit him there, or perhaps help with advice now until he is stable enough to travel there, if they are open to it?
My prayers are with you all the time. With best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
posted
Still waiting for a visit from the neurologist. Hubby and I have decided to be nice one more day and then if the neuro tests don't show anything new then we are going to insist on a trial of IV meds for Bartonella.
If the doc wants to discharge hubby then we are prepared to call Medicare and insist that he be kept in the hospital until the documented Bartonella infection (2 positive bloodslides this summer plus a positive titer) is treated.
Encephalopathy has improved. We know most of the nurses here after 5 stays at this hospital this year. Several other LLMD's I have contacted are not even taking new patients. Our current LLMD is willing to talk to the docs here by phone so there is really no need for a tranfer to another hospital.
The obvious solution is to treat the known infection in a supervised setting so that any adverse med reactions can be monitored.
Will post an update when we know more.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi beae
Thanks for the update.
sounds like you are on the right track. And I hope you can get the bart treatment soon.
I am still praying for you & your hubby & hang in there Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
GOOD FOR YOU BEA!!!!! He is lucky to have you!!! I am glad he is a fighter, too!!! I am glad you are pressing ahead like that- makes sense!!
-------------------- 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
| IP: Logged |
posted
My prayers go out for both of you. I do hope you can get the treatment he needs. Love you both!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
| IP: Logged |
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Bea -- I would have said the hubby was a good candidate for the "permanent brain damage" dx, and in fact he sort of got a dx like that at one point (memory loss, grand mal seizures, etc. etc.)
He's MUCH recovered now. No seizures in several years, and other sx I associate with bart -- the blinding, sudden rages, the intense back pain, and a lot of the muscle pain, plus balance issues -- have gone since he treated bart (with cipro)
Bartonella seems to be the culprit in some of the grossest of his neuro issues (the seizures, for one thing). Babesia also played a role (the severe, to the point of being disabling, anxiety).
He's over the bart now; we'll see if he's beaten the babs. Bb still hangs on.
I don't know how the Fallon's thing at Columbia works, but is that a possibility?
I dont suppose it would help if those of us with bart recovery stories wrote to your PCP with our own personal tales?
Best of luck to both of you. Take good care of yourself.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
praying you get a md who will listen and go OUTISDE THE BOX to help hubby get diagnosed correctly and the correct dosages of treatments!
YOU ARE OUR FAITHFUL SOLDIER PROTECTING YOUR DEAR HUBBY! we give you our moral support, thouhts, and prayers that YOU/DOCS WILL FIND THE PROBLEM, and hubby can start down the remission road. best wishes our friend.
do you have dr. fallon's paper that i sent yu on web; dr. f' email is in it!! ok; good luck!
IP: Logged |
posted
Praying your PCP will reconsider & give your dh the right antibiotics. I hope and pray your dh recovers fully from this. May God bless you for the wonderful care you give your dh.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
tailz
Unregistered
posted
I feel for you. I'm not sure if you could find someone to advocate on your husband's behalf. I'm trying to think of who to call for my own problems getting abx.
I don't think it is safe at all, however, for your husband to be getting repeated MRIs, and your doctors should be aware of this. My symptoms worsened following a SPECT scan of my brain, and they kept zapping my lungs whenever I'd go to the ER, too.
I am severely electromagnetically sensitive now. I would look into the possibility that your husband could be suffering from that (electromagnetic sensitivity or hypersensitivity), and not only chronic Lyme or bart. I think these infections and EMF exposure work together, which is why I would avoid future MRIs unless it is life-threatening.
I would also purchase a gaussmeter to see what your home levels are. This could be making hm worse - I know this is a HUGE part of my chronic Lyme.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Bea ![[Frown]](frown.gif)
![[kiss]](graemlins/kissing.gif)
BEA 
Printer-friendly view of this topic