posted
Haven't changed directions quite that many times but still feel like we are spinning in circles.
First off I would like to thank everyone for their support during this trying time.
Would especially like to thank JR -- a fellow Lyme patient in NYC who came and visited hubby in the hospital. We took his advice and were able to get an emergency appointment with an LLMD not too far from NYC.
The Columbia thing was just not happening. After waiting 48 hours for the hospital to arrange a transfer I took matters into my own hands. Called and found out that a bed in the Columbia psych ward would not be available for at least another 48 hours. Plus the hospital had not even called although they had all day Monday and Tuesday -- were told late Saturday night that we wanted the transfer.
Was able to schedule an appointment with an LLMD for the next day. Checked hubby out against medical advice as the attending physician was unavailable to sign the discharge paperwork -- he did not make rounds Tuesday and would not answer his pager or cell phone. The psych doc cleared hubby based on the fact we had a pending medical appointment.
That appointment initially was a disappointment. Hubby ended up in the ER later that day and the doc was unwilling to admit him. Fortunately the IV Ativan in the ER worked to relax the muscle rigors which had lasted for 4 hours at that time.
Obviously stopping the IV Demerol and IV Phenergan plus switching to oral Ativan did NOT stop the muscle rigors -- the neurologist didn't know what he was talking about.
We left the ER and made it to the 24 hour pharmacy to get some scrips filled. Still in shock and disbelief that hubby's new (old) med seems to be working. No episodes of muscle rigors in 24 hours. That is a record -- usually 2 or 3 episodes daily for the last 5 months.
Drove across the Pennsylvania line today before stopping for the night. Hope to be home in 2 more days.
The new doc is primarily into antibiotics -- not interested in nutrition or alternative things. Asked why we were obsessing about Bartonella. Explained that starting Bart treatment is when hubby crashed. Doc did not really know anything about the Fry lab -- thought it was using similar techniques to the old Bowen lab. Despite being skeptical doc did prescribe a Bart med.
Hubby took 1/2 a pill of Levaquin last night. Woke up a few hours later with a rapid heart rate (120) and tremors. I read the drug printout and thought he might have a magnesium deficiency. Of course the ER did not test for this even though we asked. Gave hubby a very small amount of magnesium IV push. His heartrate decreased to 88 and he went right back to sleep.
The 2nd 1/2 a pill of Levaquin at supper tonight made him feel better.
Really hoping this med helps. Hubby took 3 months of Levaquin 3 years ago. Normalized his elevated blood ammonia at the time. We didn't really think it did anything else, but at least for now it seems like it may help.
Plan is to go home and find a new PCP. Also need to get hubby back on a good supplement regimen. Otherwise, just slowly add in the meds we have on hand.
The new doc beleives in symptom control -- also gave us a script for Lyrica. Hubby has never tried that med. Since he is having nerve pain since his hospitalization we will probably give that a try shortly.
For now the new doc was just a one-time consult. Unless a miracle happens we just can't afford to make the trip to New York monthly.
Will keep everyone updated on progress.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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My LLMD is also in NY, but only requires you to go there physically every fourth month, then phone consults the other months.
He also knows all about supplements/herbs.
If you want his contact info, let me know ... I am just getting off Levaquin myself, so I know he prescribes it.
Lyme can be pretty scary .... sometimes I think it's easier being the one who's sick. I can't imagine having to take care of my husband like you've been doing, or like mine's been taking care of me. Hang in there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Think hubby's current LLMD in Missouri would probably prescribe the Levaquin going forward. I just really hadn't thought about trying it again. Hubby had such severe adverse reactions to Zithromax, Cipro and Doxy I am just amazed that the Levaquin seems to be helping.
It is just so amazing how these bugs respond to some meds and not others. Hubby had no luck with Mepron or Larium but had success with Quinine, Primaquine and Chloroquin for Babesia.
Will be in touch when I get things back on track. Need some time to wind down after all the craziness of the last couple of weeks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Scary stuff.
I hope you can get things under control. It is a good thing you were there to fill in the gaps.
Dan Bergman
Posts: 2919 | From Minnesota | Registered: Aug 2006
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bettyg
Unregistered
posted
bea and steve,
thanks for the update; wished you could have finally gotten good news! my thoughts and prayers go out to you all especially on this holiday season!
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Bea & Steve,
I hope that this small miracle continues for the both of you and eventually turns into a HUGE miracle.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
geez.
I hope it bworks out Bea. So sorry I know what its like tpo have everything crash around you and in you.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Bea,
I'm so sorry that you've been having such an incredibly awful time. Your husband is so lucky to have you in his corner. I can't even imagine where that poor man would be without you! I'm keeping you both in my prayers, in the hope that things will finally turn around for you.
My dad has been on Lyrica for quite some time & it has been helping him immensely. I don't know what dose they're starting your hubby out on. I wanted to warn you that each time they've changed my dad's dose, he's been a complete mess for a couple of days.
It was very frightening. He was completely incoherent, unable to feed or care for himself.
Pain management would usually have him start out with once a day for a couple of days then increase to twice. My dad is up to 150 mg, couldn't take the increase to 200 mg. He is also on a fentanyl patch and several SSRIs, so I don't know if that makes a difference.
I do hope that Steve doesn't have the same problems that my dad had but I wanted to warn you in case it should happen. It could seem like major Lyme neuro issues, but actually be the Lyrica.
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Bea:
The Lyrica has been a miracle drug for me. It may help Steve's symptomatology considerably.
I noticed a difference within the first 24. A minor difference, but a clear difference.
Of course, you'll let us know how it goes.
Sending much love to you both,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Bea & Steve,
Love, love love and yes, Fry is just like Bowen, direct microscopy- Hugs to both of you- Best wishes, 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
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Everyone should have a wife/husband like you. He's very lucky to have you.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
up for Fin
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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