Bacillin injection

[tpotter]

Any of you whose child got a bacillin injection...did s/he feel really awful for days afterwards? My son is completely miserable. I know he could herx, and started later that evening, but now he just seems to feel really, really awful. The other herxing that he's done with other meds (like Doxy, which he no longer takes, because of the pancreatitis) was in short little bursts, but this doesn't seem to end.

 

To complicate matters, he told me yesterday that he thinks another child at his school has PANDAS (I already know of one), because she just started tic-ing the other day. He's acting like he's flaring up from strep, and he says he feels like there's strep all around him. He even called me from school today, telling me that one of his teaches is really, really sick. I called the school, and I'm sure they kept him out of the class (he goes to a private school that caters to much of this sort of stuff.)

 

He's currently taking azith (for mycoP that he was exposed to...probably because of my undiagnosed for 3 years mycoP), and had the Bacillin injection last Friday. He's supposed to start on flaggyl next Monday, ad I'm scared to push that on him, too. The LLMD thinks he might have bartonella, because he had what looked like the bartonella rash on his upper arm. My son is the least positive for lyme/bartonella in our family (only 1 band...41), but seems to be the most reactive to the tx. Then again, his neuropsych symptoms were always way worse than my other son, and my husband's symptoms are RA type, and I have mostly a little muscle pain, fatigue and MycoP.

 

Any ideas? Oh...he also had IVIG 3 weeks ago, did great. Had a wonderful response for the first two, and just like 1 1/2 years ago when he had the other IVIG, he reverted at about the 3 week mark. But, we also weren't doing tx for Lyme at that time.

[sf_mom]

So, the growth cycle for Lyme is 3 to 4 weeks (you are 3 weeks post hdIVIG) and with recent the bacillin shot.... I would assume this is a herx. Especially, if no one else in the household is having similar symptoms.

 

I had flu like symptoms and my whole body ached during my Lyme treatment and it lasted several days sometimes. While on the 1500 m.g. per day of Tindamax I was struggling too much and had to back down on treatment. I am finally managing on a lesser dosage of 1,000 m.g. per day and making strides towards feeling much, much better. Sometimes there needs to be a balance between too much treatment and too little. If he doesn't start feeling better by next week, I'd hold off on starting flagyl as you don't want to overload him and create an extended herx.

 

Hope that helps a little.

[lyme_mom]

I doubt it is the bicillin shot causing the herx but it sure seems possible it is herxing from the ivig or related to the sick people around him. My middle son had a more positive Lyme test than others in my family but he was the least sick. Sometimes the more positive you respond to the western blot the better you are handling the infection. Some who are really weakened by the infection do not produce a lot of antibodies to fight it, hence they are leas positive. I would definitely wait on flagyl unless llmd thinks it will help with the latest increase in symptoms. It might actually help but I'd want to be sure the llmd knows the latest info beforehand. Wendy and elizabeth would tell you to detox. We probably could have done

more of that during our Lyme treatment. You may know that bartonella can cause neurological and paychological symptoms out Of proportion to the physicAl symptoms like aches and pains. Bartonella is a separate test from Lyme but is also unreliable. It is a clinical diagnosis too.

Edited December 8, 2010 by lyme mom

[tpotter]

Thanks guys. I'll let the LLMD know. Also, we are doing bentonite clay, and I have been trying to get him to also soak his feet in epsom salts (I've been doing it.) the problem is trying to get all of the meds and detox done on schedule, which is pretty hard with school aged kids. There are days the detox doesn't happen, and the foot soaks really aren't happening. I think I'm going to run upstairs and see if I can get him to do it right now before he goes to bed (his class is going to NYC tomorrow for a field trip, and they have to be at school by 6:45, so he's heading to bed.) I think he'll hold it together, because he has only one time "almost" lost it in front of other people...he holds it in until he gets home!

 

Why don't you think it's from the bacillin? The LLMD said that he might herx from it that day, and it did start that evening.

 

I'm probably going to wait on the flaggyl...maybe an extra week or 2 (I don't want to be doing over our vacation either.)

[sf_mom]

I would agree on taking a holiday break on loading up on the antibiotics. I plan on stopping my Tindamax while guests are in town so a can enjoy a glass of wine or two.

[lyme_mom]

Thanks guys. I'll let the LLMD know. Also, we are doing bentonite clay, and I have been trying to get him to also soak his feet in epsom salts (I've been doing it.) the problem is trying to get all of the meds and detox done on schedule, which is pretty hard with school aged kids. There are days the detox doesn't happen, and the foot soaks really aren't happening. I think I'm going to run upstairs and see if I can get him to do it right now before he goes to bed (his class is going to NYC tomorrow for a field trip, and they have to be at school by 6:45, so he's heading to bed.) I think he'll hold it together, because he has only one time "almost" lost it in front of other people...he holds it in until he gets home!

 

Why don't you think it's from the bacillin? The LLMD said that he might herx from it that day, and it did start that evening.

 

I'm probably going to wait on the flaggyl...maybe an extra week or 2 (I don't want to be doing over our vacation either.)

I wasn't clear. I don't think one shot last friday Would cause such a long herx but I could be wrong. This is 5 days later. Don't know how long it stays in your system. I have read that ivig can cause bad herxing and if this happened before at the three week mark it seems very possible that it is happening again. I am just guessing that ivig has a bigger effect than one bacilli shot. The two together along w exposure to sick people could b a perfect storm.

[tpotter]

Actually, I don't think he herxed the first IVIG...it was more like it just stopped working (never got better, and finally got PEX 2 months later.) He seems ok today, and is going to talk to the director of the school to make sure he and his friends are not put on the same bus with the very sick teacher (the teacher described himself as being "very sick," and my son said that he was sneezing and coughing all over the place.) There's at least one other boy at the school with PANDAS (his mother told me), and my son came home the other day, and said that he really thinks a girl in his class has it (she suddenly started tic-ing.)

 

So, he's afraid he's going to get even sicker, and he's just very frustrated. He's going to tell the director of the school how hard and painful tx is, so he really needs to be "protected." I'm really proud of him for speaking up.[

[lyme_mom]

Actually, I don't think he herxed the first IVIG...it was more like it just stopped working (never got better, and finally got PEX 2 months later.) He seems ok today, and is going to talk to the director of the school to make sure he and his friends are not put on the same bus with the very sick teacher (the teacher described himself as being "very sick," and my son said that he was sneezing and coughing all over the place.) There's at least one other boy at the school with PANDAS (his mother told me), and my son came home the other day, and said that he really thinks a girl in his class has it (she suddenly started tic-ing.)

 

So, he's afraid he's going to get even sicker, and he's just very frustrated. He's going to tell the director of the school how hard and painful tx is, so he really needs to be "protected." I'm really proud of him for speaking up.[

Good for him for speaking up. That is awful about the teacher coughing all over the place. Poor guy. Treatment is hard but he will get better. My llmd says its three steps forward, one step backward as you go through treatment. Is he still doing as poorly as he was doing on Friday?

[tpotter]

No. This morning was a good one (yesterday was pretty rough), but he was going on the trip to NYC (they're going to broadway, Rockefeller Center, etc.), and he was pretty pumped up. It will be interesting how wiped he'll be this evening, but the kids don't have to go to school tomorrow. I'm really hoping that things keep improving, but I'm also really scared to give him the flaggyl.

 

Thanks for asking.

[lyme_mom]

No. This morning was a good one (yesterday was pretty rough), but he was going on the trip to NYC (they're going to broadway, Rockefeller Center, etc.), and he was pretty pumped up. It will be interesting how wiped he'll be this evening, but the kids don't have to go to school tomorrow. I'm really hoping that things keep improving, but I'm also really scared to give him the flaggyl.

 

Thanks for asking.

That's good to hear. I can understand your worry. I took flagyl and although it didn't cause me to herx I did not like it. My son took tindamax, which is a sister medication to flagyl, and that was rough. He only took it two days at a time on weekends. I must say it probably is part of why he got rid of lyme and is better now. It is sure hard to imagine that when you are going through the herxing.

[cobbiemommy]

Don't know how long it stays in your system.

 

Bicillin LA has a half life of 14 days. It most definitely can cause Herx reactions that last up to a week later. DS is wonderful on 1st and 2nd day after shot, but towards the fifth and sixth day, LOOK OUT. I asked the LLMD and she said it is most likely a Herx. She said the Bicillin is a "lazy" way to kill Borrellia; it pretty much gets the Borrellia that is free floating in the body. She said we would go after the Lyme in the tissues later, but this is a good way to lower the body's burden.

 

Cobbie

[tpotter]

Our LLMD put him on Bicillin, because he got pancreatitis probably from the doxy (which we pulled him off of) 2 weeks ago.

 

The symptoms have stopped. We were told that it should get less each time. I'm still deciding whether or not to put him on the flaggyl this month or just wait until next month, but then he gets another bicillin injection, and then another dose of IVIG (2 months from the first.)

 

He definitely seems to be getting better...much, much better moods overall.

[lyme_mom]

So glad to hear that. Flagyl may not cause as bad a herx as he just had And often the herxes get easier. That was my experience. U just never know how each person will react to each drug. I know a number of people who felt better on flagyl when they took it (not just later). If you try It and it does cause a bad herx you can stop it until later. If he is feeling ok now I underatand why u would not want to make him miserable for the holidays but the school break is a good time to deal with herxing when he can sleep in and you don't have to deal w school. Is the school being supportive?

[sf_mom]

I agree with Lyme Mom... I have had different responses to each antibiotic. Tindamax killed me much more than other medications because it brought on headaches that were so difficult they woke me in the middle of the night. The first two weeks were really, really rough and finally I inquired with my LLMD. We lowered my dose and I am now 'on my good days' feeling better than ever. I lowered the dose on November 24th and hitting a stride with the medication in the last week.

 

We were also very hesitant to start a third antibiotic with our younger son and of course we had rages initially but they subsided fairly quickly and he is making marked improvement. So, that gave us confidence to move forward with a third antibiotic for our younger daughter 'last night'.... We have two weeks before guests arrive and if she is doing horribly by then we will suspend treatment through Christmas.

 

With our older son we added 'Olive Leaf Extract' and herbs for Bartonella. I am already seeing the mood issue rear its ugly head so I'll maintain on that through Christmas and add the third antibiotic that we will pulse after the New Year. One thing I've learned..... is to NOT add a bunch of stuff all at once.

 

You just never know how bad it will get or how long it will. With orals you can always stop but make sure you inquire with your Dr. about which are safe to 'stop and start'. I understand it is not good to pulse Rifampin or Biaxin.

 

-Wendy

[tpotter]

Thanks for the suggestion. I'll ask my DS if he wants to try starting the Flaggyl now. He'll probably say "no", but I'll tell him what you all said. He's not going to have a lot of time over the vacation, because we're going out of town for most of it. We were supposed to go in June, but both boys were in a very bad "state."

 

And, yes, the school is being very supportive. They just asked for a letter from the dr, about not always being able to get homework done, and for absences, and that was no problem to get.