posted
Just not sure if that combo is ever given? Can't reach hubby's LLMD by cell phone.
Hubby is in hospital again and I somehow convinced his PCP to give him some IV rocephin. But the dose is only 1 gram daily. And of course they stopped his minocycline.
Amazingly they did keep him on all his babesia meds -- malarone, flagyl, ivermectin. Did stop levaquin though and not sure about lariam as that is currently only on Thursdays.
Bloodwork shows another die-off of RBC. Still uncertain if the infection is just multiplying or if the meds are working really well.
Hubby was vomiting in the car on the way home from his LLMD appointment. I stopped at a gas station and he started to get out of the car to walk around. Got really dizzy and fell down and had a really bad shaking episode and started stiffening up (dystonia). I couldn't get him back into the car.
Lots of good samritans stopped to help but we had to wait 15 mintutes for the ambulance. They gave him 2 mg of IV ativan in the ambulance and then 6 more mg of IV ativan in the ER. Hubby and I were both really upset over that. They got way too carried away since he does not really have seizures. He has never had that much ativan in such a short period of time (about 1 hour).
Yesterday when I got to his hospital room at 7:00 am there were 6 or 8 nurses standing around his bed. They couldn't wake him up. And then within 30 minutes when he was ready to wake up the seizure-like activity started up along with the dry heaves and dystonia. They finally got orders to give 1/2 mg of IV ativan which was not enough. So it was 2 or 3 hours later before I could talk them into giving him another 1 mg of IV ativan.
After that things calmed down some and once the PCP made rounds I emphasized the importance of getting him back on a regular schedule of IV ativan -- 1 mg every 6 hours for now. He did have one more bad episode of seizure-like activity after lunch but then after the IV rocephin he did pretty well the rest of the day.
Now the big hurdle will be talking the PCP into putting in a PICC line.
Most likely hubby will be released either today or tomorrow (the usual 3 days).
He did not have any fevers yesterday -- so I am keeping my fingers crossed that maybe the meds are actually working and we killed off some babesia and are over that hurdle. He has had daily fevers for the last 7 weeks since restarting meds.
Got to sign off now and head to the hospital. Will update this afternoon or tonight.
Bea Seibert
P.S. So far the bite site looks good from his 2nd dog tick bite this year on May 29. The tick was dead when hubby pulled it off -- found it on his should when he was putting on his testosterone cream. We think the ivermectin killed it.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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dbpei
Frequent Contributor (1K+ posts)
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What an ordeal for you and your hubby. I can't even imagine. I hope he is on the mend and you both can have some better days.
My LLNP, who has been pushing IV rocephin for me, told me that I would be continuing with the doxy and rifampin if I were to go with IV rocephin. I have not started this yet, but just wanted you to know that she would have had me taking both at the same time.
You and your husband have been through so much. My heart goes out to you both. He is lucky to have you on his side fighting for him - but nobody deserves what he is going through. You either... I am thinking of you both and sending positive thoughts/prayers.
Posts: 2386 | From New England | Registered: Aug 2011
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Hubby's PCP was in an incredibly good mood this morning -- is flying to Kosovo to visit his family for 2 weeks this afternoon. He agreed to continue the IV Rocephin for a week. Discharged hubby and wrote orders to get a PICC at the hospital tomorrow and get the infusions done there.
We thought we had a plan and things were moving ahead. Since I can't get in touch with his LLMD until Tuesday hubby and I decided to just add the rocephin to his existing meds and not make any other changes.
I guess that was the wrong decision. We had to drive back to the pharmacy to pick up a prescription and he got out of the car and got dizzy and fell and started vomiting and having bad seizure-like activity again. Back to the ER.
After 2 1/2 hours the third thing they tried stopped hubby's seizure-like activity and he was discharged. This ER visit was actually ok as far as an ER visit can be. The admitting doc remembered hubby from a year ago when we had seen him and the doc filling in for his PCP took plenty of time to get a thorough history.
They ended up prescribing a seizure med which hubby had taken before. We thought it might have been slightly helpful in the past -- at least it came the closest to working of the 6 or 8 that have been tried.
So hubby is home for now and we plan to stop the minocycline. The daily fevers increased from around 99.1 to 99.8 during the last week when hubby was on the mino instead of the doxy.
On Friday before the ER and hospital visit his LLMD had wanted him to go ahead and increase the mino to 200 mg daily -- assuming hubby was herxing. And we do think that is what was happening -- but he just can't tolerate that particular med combo right now. Had previously taken mino for many months with no major problems.
Hubby still feels that the rocephin will be helpful -- will just stick to 1 gram daily until we can get in touch with his LLMD.
Hubby is really worn out but at least now that all of that ativan is out of his system he is no longer angry and is just hopeful that getting the PICC line back in is a step in the right direction.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I have been on 2g Rocephin IV with Minocycline (and doxy before mino). 1g of Rocephin is likely too little but I know you are dealing with PCP. I hope you can reach his LLMD soon!
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Rumigirl
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Oh, Bea, I am so sorry to hear about hubby's recent troubles!! As if you both hadn't had enough already!!
I, too, have had doxy with rocephin---rx'd by the top LLMD anywhere. That is definitely ok.
Why don't you lobby for a port, if you can? It makes much more sense than a PICC, considering he is on IV meds long-term. If you can't get anyone to rx it, that is a different story. I had to lobby hard for one for a long time, before someone would rx it. But in his case, you would think that it would be a no-brainer.
I hope that someone can get a better handle on what is going on and what he needs soon. At least he is on Ivermectin, too, that is good. I assume that you've checked on what else is given for the Fry bug, in case he has that. (Didn't someone find that in him?).
I pray that he will do better soon. I know how hard it is to keep hope alive when going through so much h____.
[ 06-04-2012, 04:53 AM: Message edited by: Rumigirl ]
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Lymedin2010
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1G is way too small of a dose. He will need 2G twice a day for serious infections, anything less might be a temporary fix, but overall a waste.
It could even make symptoms worst if it is not enough to bring down the load, but enough to bring down ones immunity.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Hubby is getting very discouraged. All of the old seizure-like and dystonia symptoms are back -- had been gone for over a year except when he ran the high fevers above 101.
He ended up in the ER for visit number 4 today since last Thursday. Did his IV Rocephin at the hospital out patient infusion center, ate lunch and then got dizzy walking to the car. Vomited lunch and then started with the full body tremors and dystonia.
ER gave him the same med as yesterday -- had not researched it and found out they lied about the type of drug it was. Told us yesterday it was a mild muscle relaxant that they used for babies so they could calm them and get blood draws.
Found out when we got home that Geodon is an antipsychotic that should not be taken with levaquin or lariam -- he is on both -- as it can cause long QT syndrome. Plus it is also contraindicated with the sinemet. No wonder hubby's brain chemistry is screwed up.
He did have another seizure-like spell when he got home but came out of that one on his own after 10 or 15 minutes.
He is getting a PICC line put in on Wednesday.
For now until we can talk to his LLMD tomorrow we stopped the minocycline and levaquin and his babesia herbs and the sinemet. Trying to keep him on a minimum number of meds til his brain gets calmed down and we can sort out what to do next. Can't tell if the seizure med topamax is doing anything or not as he has only had a couple of doses.
Hubby and I are pretty convinced that the bloodwork shows the main problem -- he had a bad hemolysis event which showed on Friday's bloodwork -- we are assuming that he killed off some babesia.
Then I gave him some liver herbs like I had done back in April when he ended up in the hospital. Both times when his bilirubin dropped from the herbs (lowered by about 50 % each time) his liver enzymes improved. We are pretty sure that this is a good indicator that his babesia or whatever bloodborne parasite he has is hiding out in his liver and then he gets sicker when it is chased out by the herbs.
We have been convinced for a long time that he was going to need primaquine and chloroquine as part of his babesia treatment. But the first step is getting him back on IV rocephin to reduce brain inflammation so he can tolerate his babesia meds again.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
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Oh, Bea, of course he would be discouraged!! Who wouldn't? It seems so unfair.
Did you say in another post that he'd had a tick bite or two this season? Or am I thinking of someone else on LN? I hope not! Because, of course, he can ill afford any more exposure. Of course, the darned nymph ticks are probably not even visible often. In any case you guys need to take extreme precautions, as do we all here.
How horrible that the ER lied to you about the Geodon!! That is so dangerous! Yeah, right, if they give that to babies, I pity the poor babies!
I had a prolonged QT interval once, due to drug interactions. It was horrific. And I was a plane ride away from home, away at my husband's family's for Christmas! So I toughed it out on my own. Not sure it was a good idea, but ER's . ..
Does he do glutathione, either IV or as a suppository? It seems to me that that would be helpful here. I do both, depending on which I need more on a particular day. It definitely helps to clear the toxicity of either a herx or the meds.
Coffee enemas, of course, are invaluable, but right now may be beyond the scope for him. If he could do them, though, they would help enormously to clear out the killed babs, etc. You can even put magnesium or glutathione in the enema, and it gets rapidly absorbed that way.
I hope that the LLMD will be able to find a way through this difficult time. It's unreal how relentless these pathogens are. The two of you are so strong to keep pressing on.
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