After 6 days in CCU (critical care unit) hubby was transferred to the medical/surgical floor.
Friday and Saturday he was probably the sickest he has been since being admitted. Seizure-like episodes almost impossible to control even with 7 mg of IV Ativan daily plus IV Demerol 3 or 4 times daily for rigors and IV Zofran a couple of times daily for nausea. Attending physician had discontinued quinine for 2 days as it appeared that the Babesia had become drug resistant to the quinine.
But today (Sunday) is a new day. Found another new "miracle drug". Somehow talked the doc into prescribing primaquine. Took the first pill last night. Sweats stopped. No fever today (101 yesterday). It is almost 10:00 am and so far no seizure-like episodes since hubby went to bed at 9:00 pm last night.
Hubby is still taking the Rifampin at 50 mg twice daily -- discontinued the IV Rocephin and the Minocycline for now.
So far this is almost a repeat of the January episode. The quinine worked miracles for about two months and then began losing effectivenes.
In hindsight, I think the extra things I was giving hubby may have worked too well -- after the priapism in late April we really worked on getting the fibrinogen into the normal range (for the first time in 3 or 4 years). I think that whatever was hiding out in the excess fibrinogen may have just been too much for his body to handle all at once.
Anyway, hubby is to take the primaquine for 4 days on and then 2 days off. Probably will remain in hospital for at least the first 4 doses. Maybe he will be lucky and won't have any herx reactions -- he didn't really herx the first time he took quinine -- just started feeling better.
Think doc will be agreeable to adding in cloroquine later if needed since our guess was right that the Babesia was the infection that was causing the most severe symptoms at this time.
Looks like hubby has finally found a local PCP.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Hubby is obviously feeling much improved this morning. Called up food service and ordered a 2nd breakfast -- only got one sausage link the first time and about 3 bites of scrambled eggs and apple juice instead of an apple.
I ended up drinking 2 apple juice but hubby at least got his sausage and eggs.
Bea Seibert
Posted by Truthfinder (Member # 8512) on :
Good grief, Bea.... you and your hubby have gone through absolute hell with this. I don't know how you keep your sanity or your health.
Your husband must be the most complicated case on this board, and that takes a lot.
So glad you've found something that is working. Hope he can get out of that dang hospital pretty soon.
Tracy
Posted by Marnie (Member # 773) on :
Glad he is feeling better.
However, as a grandmother whose daughter was given a LOT of Zofran (block serotonin) to ward off serious N/V of pregnancy (hyperemesis) and whose grandaughter now has serious sleep problems ...falling asleep...melatonin (#2 anti-oxidant defense)not adequate.
If they do...jump at it. It may take a LOT and is very expensive.
Posted by Lymetoo (Member # 743) on :
PRAYING that he will continue to improve, Bea! Give him our best!! Posted by MagicAcorn (Member # 8786) on :
Wow I hope this works out well.
You two have been through so much and are very strong.
I will keep you in my thought and prayers today. Be well.
Posted by valymemom (Member # 7076) on :
So great you may have found a local PCP. You are a wealth of knowledge about these infections and I hope the docs know what a gem you are are.
I know your hubby must thank God daily for your gifts/devotion.
Keep us informed; we are family, ya know.
Posted by 5dana8 (Member # 7935) on :
I am so happy he is feeling better today ~ you both have been threw so much.
Praying & hoping this new med does the trick & he can continue to feel beter. It is frustrating to have to go threw so many till ya find one that works for you.
Hang in there you 2 Dana
[ 03. June 2007, 11:26 PM: Message edited by: 5dana8 ]
Posted by randibear (Member # 11290) on :
bea, i don't know how you hold up.
i sure hope he gets to feeling better and gets the heck out of that hospital. hospital can be dangerous places even if you're well!!!
hope the change in meds continues to work.
you need to take care of yourself too, hon
Posted by Jill E. (Member # 9121) on :
Bea,
You and your hubby continue to be in my prayers. You are obviously a persuasive woman to get the doctors to listen to your expertise, but thank goodness at least some of them do.
I'm glad you're going slowly on the Rifampin. I had to go at the same pace as your hubby. The myoclonic/seizure stuff got worse at first for me, is still pretty bizarre, but a little less over the months. I recently added Doxy to the Rifampin because I can't get to a high-enough dose of Rifampin (I've been on Doxy before for Lyme). I think it's lessening the myoclonus just a tad by getting things into the cells or whatever.
Please continue to keep us all posted. I always think of you as Saint Bea. Everyone should be as blessed to have someone as caring and knowledgeable as you in their lives.
Take care, Jill
Posted by merrygirl (Member # 12041) on :
May your husband continue to get better. God bless
Posted by Carol in PA (Member # 5338) on :
Bea, What is your husband's magnesium status? Is it possible that he could get some elemental magnesium by IV?
Carol
Posted by TerryK (Member # 8552) on :
Thanks for keeping us up on his condition. I'm so happy to hear that things are going well and pray that it continues to improve.
you wrote: I think that whatever was hiding out in the excess fibrinogen may have just been too much for his body to handle all at once.
I think you may be correct. I got petechiae quite badly after taking various things to break up fibrinogen and my health started to decline even more. At that time I didn't know that I had an infection, let alone 3 and none of my doctors knew what was causing all those red dots on my legs and feet.
Prior to taking things to break up fibrin I had read that it can release pathogens that are bound up in the fibrin but I assumed my body would deal with it.
When my LLMD saw the petechiae he said that it might be babesia and some tests indicate that it probably is. We are treating for it and I am having all of the typical responses so it does seem that the fibrin busters may have released babesia or allowed it to proliferate.
Keeping you and your dear one in my thoughts and prayers.
Terry
[ 03. June 2007, 04:41 PM: Message edited by: TerryK ]
Posted by oxygenbabe (Member # 5831) on :
Maybe the body tries to bury the babesia in the fibrin.
Posted by Kayda (Member # 10565) on :
In the midst of this severe trial, there is a silver lining. Sounds like you have a very good PCP!!!! Thank God she (right) was willing to try the new med.
Looks like your hubby has a tenacious Babesia infection. There is a new book on Babesia for medical professionals written by Dr. Schaller. Perhaps you could get it for your PCP and even highlight some things for her.
I'm so glad to hear your hubby is responding well to the medicine.
Kayda
Posted by Parisa (Member # 10526) on :
Hope the primaquine is the key to your husband's recovery. You didn't choose this battle but you're a fighter. Hopefully your PCP will be intrigued by your husband's response and will decide to educate herself.
Posted by Boomerang (Member # 7979) on :
Bea, you and your hubby have been through so much. You are so strong.
I will keep the both of you in my prayers.
God Bless.
Posted by liz28 (Member # 4946) on :
Thank you so much for writing this. Thank God there was something out there to help you. And of course, thank you to Google for making primaquine easier to find.
Minoucat might be interested in hearing your story. Her husband went through the same situation.
[ 03. June 2007, 10:46 PM: Message edited by: liz28 ]
Posted by Marnie (Member # 773) on :
Arch Phys Med Rehabil. 2003 Sep;84(9):E34-E35 . Related Articles, Links
Return of muscle strength and function after use of intravenous immunoglobulin for Lyme disease-associated acute demyelinating polyneuropathy.
Patient: A 58-year-old man with babesiosis and Lyme disease.
At follow-up 8 weeks later, muscle strength had fully returned.
Discussion: This case illustrates that Lyme disease-associated demyelinating polyneuropathy may be treated with IVIG. The potential use of IVIG in this population is based on its efficacy in those with acute demyelinating neuropathy of alternative etiologies. Conclusion: IVIG can be considered as a treatment option for demyelinating polyneuropathy associated with Lyme disease.
PMID: 13680780
The above link no longer works which is very puzzling since it was a ``cut and paste'' on my part. If whoever is reading this has access to a hard copy of this journal, I urge that person to find it and copy it. The Sept. 2003 issue of that journal may be found in hospital or medical school libraries.
Immunoglobulins are very expensive (I believe they have to be obtained from MANY donated units of blood) and are ``reserved'' for very serious life threatening situations such as flesh eating staph infections which kill in a matter of hours.
And...it may take MULTIPLE IV doses of these immunoglobulins to work.
But I still believe in Freedom of Information.
Posted by iceskater (Member # 8655) on :
Keeping you in thoughts and prayers that your hubby continues to improve. You have been, both of you, through so much>
Posted by bettyg (Member # 6147) on :
and the WINNER of the LYME DISEASE "SPOUSE" AWARD goes to Bea Siebert, for her 24/7 loving care she has been giving her DH these years, and for continuing to READ, READ, READ everything she can lay her hands on, and educating all docs along the LONG, BUMPY road they have been going on for far too long!
Heavenly Father, please help bea and dear husband to finally get over these major health episodes, and lead them to the way to REMISSION or with your permission, a CURE for him!
please continue giving bea all the extra strength, encouragement, shoulder to cry on as needed, and persistence on educating the docs to use what she has learned about to help her hubby.
in jesus name, amen........bettyg,iowa
you 2 don't deserve this continuous 24/7 story; i know i've been reading about ALL YOU'VE BEEN THRU for 2 yrs.
bea, we are so glad we all have met you, and admire your fortitude in plunging along time after again. i know you have NO CHOICE, YOU'RE DOING THE BEST WITH THE HANDS DEALT TO YOU. love ya.......
Posted by Geneal (Member # 10375) on :
Dear Bea,
Glad to hear your husband is doing better.
I am sending your both positive thoughts and prayers.
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