posted
Good news, bad news, strange news -- the roller coaster continues.
Hubby has been in the hospital one week now and will be released Sunday or Monday if everything goes as planned.
I am at home waiting for a shipment of IV Cipro -- if it got on the plane yesterday in Florida with the storms. If not maybe it will show up tomorrow.
Oral meds just were not working for Bartonella. PCP started hubby on 125 mg IV Cipro. Hubby could tell with 1st dose that it was getting to his brain and calming the nervous system. This med is one of those given in D5W -- hubby always does better with those.
Next increased to 200mg IV and last night increased to 400mg. Starting today will be at 400mg IV twice daily.
The really good news is that because the med is being supplied by an infusion company insurance will pay 100% as hubby has already met out of pocket maximums for major medical.
The infusion company will accept the insurance allowance rate even though they are a non-participating provider. The med will not cost us anything as it is already premixed. By declining nursing care -- I will administer meds -- it only took about 48 hours to get his approval processed.
The bad news is that now if hubby needs future IV antibiotics it will be a major insurance battle unless we pay under the prescription drug plan -- maximum of $5000 annually paid by insurance company already met this year.
I wish the insurance was paying for some of the more expensive meds -- we paid more out of pocket for the IV Primaxin than they are paying for the IV Cipro, but right now we just don't have an extra $1800 to pay for 28 days of IV Cipro.
Good news is that hubby did not need to be transferred to another hospital. We gave PCP info on I.D. docs in Roanoke, VA -- a dead end. She called and they do not believe in "chronic Lyme." We weren't surprised at the response.
I think now the doc understands what we have been up against in getting treatment. She has never doubted that hubby is sick -- she just didn't feel qualified to treat him.
She doesn't understand why hubby is doing better on the IV Cipro when he couldn't tolerate it orally. In our opinion the Bartonella is in the G.I. as well as the brain, plus there is the gastritis isssue as well.
Will add in a 2nd oral med for Bartonella in a week or 2 -- probably Zithro or Minocycline -- we already have some of both on hand. May eventually try Rifampin again when IV is over.
LLMD appointment is 11/12 -- Plan to drive as hubby does not feel up to the airport hassles. It is about 945 miles each way. Will probably turn into a 10 day trip. Will be a real good test of hubby's nervous system. When he is really symptomatic riding in a car is very disturbing to his nervous system.
Now for the strange news. Hubby was finally seen by a neurologist last Saturday. I had gone to do laundry or some other errends. Anyway -- based on the EEG, repeat brain MRI and neuro exam the neurologist gave hubby a good report -- I see no evidence of a neurological disease etc....
Monday morning hubby had another bad shaking spell. He was confused again and had very bad muscle rigors. Symptoms did not respond to IV Ativan or IV Demoral.
The neuro examined hubby and said he had never seen anything like Steve. He could not explain what was happening neurologically -- he ordered some send out bloodwork which has not come back. Neuro said it was definitely not stiff-man's disease.
The neuro said that a malfunction in one part of the brain could not cause the symptoms hubby was having (for example a seizure focus or a tumor). He didn't know if infection would explain the symptoms or not. Hubby and I feel like the SPECT scan explains it best -- global (entire brain) hypoperfusion consistent with encephalitis or vasculitis.
Anyway, this is when I talked the PCP into trying the Cipro IV -- hubby continues to have 1 or 2 milder shaking/muscle rigor episodes daily, but no more confusion and episodes which last for hours without stopping.
Tuesday morning the neuro was amazed that hubby was back to himself. Hubby continues to live up to his medical diagnosis -- a former neuro called him a STRANGE MAN WITH A STRANGE PRESENTATION.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
A strange man with a strange presentation*)*)!*)! !*)!*)!*)!*)!*!)*)!*!)*!)!*)*!)!*)*!)!*)!*)!*)!!
Bea, I am glad he is back on IV Cipro. Cipro is what got me to being completely symptom free, my last remaining symptoms had been presumptive Bartonella. I am so glad you have persevered!!! MOST people would have given up and I am so, so glad you have stuck in there with your honey!!! He deserves to be at the highest level of wellness he can be- and his ymptoms don't dound like fun for you or for him. I am glad the neuro is open to things which have no names, many neuros would also have just insisted on trying to categorize him as X or Y regardless of the data, seen it too many times...
Keep us posted, many of us here are rooting for the both of you- HUgs & prayers- 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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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Bea, you are truly an amazing wife. I love the way you continue to fight the battles and do all you can to help your spouse.
I hope this tx protocol helps turn the corner for you guys.
There's nothing like trying to educate the medical field as we go along.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Thanks for the update, Bea.
I imagine the doctors must be as amazed by YOU as they are by Steve. I should think when they sit down for a round-table consult on Steve's case that you would be invited too, as you are such a wealth of knowledge and history.
I do hope that somewhere in all of this there is a small window of time where YOU can find a well-deserved break to rest and rejuvenate!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Ditto what Michelle said. You are amazing and I, too, always read your posts.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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quote:Originally posted by map1131: Bea, you are truly an amazing wife. I love the way you continue to fight the battles and do all you can to help your spouse.
Ditto! Glad to know your husband's name. It's easier when it comes to praying for him! Mr. Seibert sounded a bit formal to me!!
Sure hope this works long term to fix the problem!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi bea
Thanks for the update
I am so sorry steve is having to be in the duck motel for so long. But good to hear you may finally have a treatment plan that works. I hope the meds will help knock out the bart & your both can be sharing good times soon
You are both continued in my thoughts & prayers
healing hugs Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Bea.
I had just done a search for your handle to find out how your husband is.
Thank you for the update. You know many people are thinking of you and Steve.
I am sending you both my good wishes. Please let us know how it is with the LLMD. Did you try contacting Dr. F.?
Are you certain that airport isn't the way to go? I prefer airport travel with neuro symptoms. If you arrive a little late, and have previously requested wheelchair, it can be fairly painless. I can't stand driving. Every turn of the car, and every start and stop feels like my inflamed brain is gently banging against the inside of my skull.
It doesn't surprise me that the neuros still can't find anything. It has been explained to me that there are very specific constellations of symptoms that if you don't fit into, is difficult to diagnose.
You were the one who warned me that it wasn't likely that I was going to get a seizure diagnosis. Now I say, "I have seizure-like events".
Your husband's problems are worse than mine, but I have done very well on Pregabalin / Lyrica. Have any neuros tried adding this to his symptom management?
*I could tell something was *up* with the first dose* Pfizer conducted a study that one of their pharmacists read to me over the phone, which stated that people treated for complex partial seizures noticed improvement on day 2. He might notice improvement as I did, and apparently the people in the study, fairly soon, if it's going to take positive effect.
With speedy very best wishes,
-------------------- 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
I'm curious about these "seizure-like events." I am starting to suspect bartonella since Cipro is helping my severe cardiac symptoms. I have also had seizure-like episodes since my heart got bad. I thought they might be myoclonic seizures since my limbs will start jerking. Is this a bart symptom? What exactly does it look like? Also, did your husband have heart complications with the bartonella?
Many good wishes for the IV Cipro.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Fortunately hubby does not have any cardiac problems from tickborne illnesses. He has a mild mitral valve prolapse heart murmur that he was probably born with.
I think the one supplement that he has taken consistently since very early in his illness has prevented any heart complications -- a very good neuro who could not diagnose hubby put him on CoQ10 to help protect his brain from oxidative damage. Hubby had extremely high levels of lipid peroxides.
Hubby has taken a minimum of 400mg of CoQ10 daily for over 6 years now. During our medical travels we met a lady whose mother had been diagnosed with congestive heart failure. She was advised to enter a hospice.
The family put her on CoQ10 and she was at home living on her own -- this was a year or two later. I do think this supplement can work miracles for some people. No -- it can't kill the bugs, but it can protect and prevent further damage in my opinion.
Hubby's seizure-like episodes have changed over the years. First started as a simple Parkinson's tremor which got more and more severe and went on pretty much 24/7. Then he started having loss of consciousness episodes.
Several ER docs actually thought he was having tonic-clonic seizures at one point. EEG's did not show seizure spikes though. At that time he actually had loss of bowel and bladder control several times. This change was brought on by a trial of an herbal formula for Lyme -- at the time hubby had had no antibiotics.
If I remember correctly it was a trial of a psychotropic med which started the myoclonus -- muscle jerks. May have been a coincidence, but we refused to continue that med after one dose.
Hubby's tremors/myoclonus improved greatly with Babesia treatment. Then this past summer he started having muscle rigors -- his muscles would freeze up and he would be temporarily paralyzed. He couldn't move or speak. It would start with tremors and he could be frozen up within 5 minutes.
Hubby has tried several seizure meds in the past and none of them were of much help. The IV Ativan that he has been on for over 3 years will usually stop the myoclonus, but it doesn't always stop tremors. Didn't work on muscle rigors either.
This summer an ER doc suggested IV Demerol for muscle rigors. It had been working until hubby ended up in the hospital this time.
Amazingly hubby did not need any Demerol today -- he did not have any episodes of muscle rigors -- the first time in about 3 months this has happened. The rigors continued even during the 6 weeks he was on IV Primaxin. Obviously the IV Cipro is working on something.
Another strange med that currently helps with muscle tremors/myoclonus is IV Phenergan. Hubby has had constant G.I. problems -- mostly nausea and dry heaves -- since he first got sick. We are pretty sure there is some involvement of the vagus nerve.
Hubby's LLMD has stated that Lyme or Babesia or Bartonella all can cause tremors/myoclonus. I saw a list in a neurology textbook once of the causes of myoclonus -- if I remember correctly they were all infectious illnesses.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
wow, steve and bea, you both are kept running for everything; so many strange things hppening and for so LONG!
bea, have you ever tried getting an anngel flight for steve/you? especially since it's almost 1950 miles roundtrip.
may god provide some miracles for you both SOON! you've both been thru way to much crap!
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Bea (and Steve),
It's good to hear from you again.
My daughter continues to have pain and "seizure-like events"...though the nature changes.
She's being treated for Bartonella now...hopefully we'll see a good change soon.
Hang tough.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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This is so interesting. I too have had something resembling temporary paralysis along with the jerking seizure-like episodes (sometimes afterwards, sometimes all on its own). I was calling it the "coma-like state." I sometimes go into this state where I can't move or speak. It feels from the inside like there is a disconnect between my brain and muscles, and also like my muscles simply have no energy to move. By disconnect I mean that my brain is saying "move! talk" and nothing is happening except that I might be able to make small noises. It lasts for awhile and is very scary and weird. I thought it was a cardiac-related thing but I haven't ever heard it described elsewhere until I read your post.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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