major herxing today

[aidansmom]

Aidan started on Flagyl yesterday. His is to take only every other Friday

 

Today his eyes seemed dilated. He came downstairs and he said "I'M bleeding" (pretty good talking for him). He had hurt his knee and was bleeding and he was upset and panicky. Afew minutes later we heard his head hit the tile. He had fell to the floor and his breathing sounded funny and loud and his head moved back and forth - only for a few seconds.

 

About an hour later he started losing motor control and couldn't get up to stand or even think about walking. He used to do this and was diagnosed with a movement disorder and when we put him on trileptal that controlled these episodes. But previous episodes usually lasted only a minute - this seems to be going on longer. He is talking pretty well.

 

Any advice - I did not expect it to be this bad. Do we just ride it out? Are there meds that might help?

 

I also expected more behavioral.= symptoms rather than physical.

Edited May 28, 2011 by aidan'smom

[kferricks]

I will be following your post. I'm sorry that I do not have any help for you but I do have a questions. How much does your son weigh and how much Flag does he take? How long has he been treating for lyme and what other meds is he on? I had the opposite experience. I thought it would be physical and it turned out to be stronger ocd etc.

[aidansmom]

He is 48 pounds and he is to take 250 mg of Flagyl 2x day every other Friday only.

 

He is also on:

 

augmentin 600 mg 2x day monday through Friday (Doc keeps him on due to PANDAS diagnosis and history of high strep titers)

 

azith 250 mg 1 x day Mond, Wed and Fri only - previous to this week he was on it Mon - through Fri. This change corresponds to the addition of azith

 

I have seen discussion about pulsing antibiotics on this forum and I guess by our dosing schedule out LLMD believes in that. Although I thought the new schedule was strange I didn't ask the reason for it at our last appointment but will definitely next time I get the chance. I think LLMD expected a possible extreme reaction and that is one reason we are only doing Flagyl every other Friday,

 

We can add vomiting to our reaction today but I hope it is not because he hit his head on the floor when he passed out. He also has been dozing in and out. I think we don't see the behavioral stuff because he just feels so bad physically. This is the first time that I have ever noticed his eyes were dilated in his history.

 

So, if this is herxing it must mean that we are on the right track with the Lyme trail unless it is a reaction to the Flagyl. Sometimes I just feel like I having a hard time believing that it is Lyme we are dealing with whiteout a doubt.

[aidansmom]

I looked up the side effects of Flagyl and it says:

 

"The most serious adverse reactions reported in patients treated with Flagyl (metronidazole) have been convulsive seizures, encephalopathy, aseptic meningitis, optic and peripheral neuropathy, the latter characterized mainly by numbness or paresthesia of an extremity. Since persistent peripheral neuropathy has been reported in some patients receiving prolonged administration of Flagyl (metronidazole) , patients should be specifically warned about these reactions and should be told to stop the drug and report immediately to their physicians if any neurologic symptoms occur"

 

also:

 

"Central Nervous System: Encephalopathy, aseptic meningitis, convulsive seizures, optic neuropathy, peripheral neuropathy, dizziness, vertigo, incoordination, ataxia, confusion, dysarthria, irritability, depression, weakness, and insomnia."

 

This is pretty scary, so how do I tell if this is herxing or a side effect of the med?

 

One reason that I thougt these things were herxing is that they have happened before he took Flagyl:

 

1. When he fell down and was struggling to breath and seemed seizure like for a few seconds happened once before last summer. Interesting enough both happened after he was upset that he was bleeding.

 

2. The episode in which he could not even gain enough motor to stand up is similar to episodes he has had in the past which were one of his first symptoms we noticed when he was 1.5 years old which has been controlled by meds. Yesterday's epeisode was much more prolonged and he had grebbed his wrist right before it occured like he had some sensation there.

 

Yesterday he also slept for many hours in the afternoon after all this all occured.

 

Here's one more thought - could other people that reported these side effect in the past actually have been herxing too? rather than it being a reaction to the med?

[LNN]

It must be so scary going through this- and of course, it's on a long weekend. I'd certainly call your LLMD on Tuesday. In the meantime, keep detailed notes, not just on the symptoms you see, but on your thoughts, such as the fact that it happened once before, etc.

 

I don't know that there's a way to tell the difference between a herx and a reaction. How quickly things resolve will be one important fact. You might also want to talk to your doctor about what you can do to minimize herx reactions (clay? glutathione? other detox agents?). It's possible the change in abx dosing (different zith schedule + adding flagyl) is a factor. Unfortunately, lots of questions that only time and observations can answer. But I'd keep asking those hard questions. It's so tempting when you're so worried, to explain away what you see, so that your mind can be settled. But revisit these questions often. I've sometimes explained away something only to have it rear up six months later and then realize my explanation to myself had been wrong, or incomplete.

 

When he sleeps at unusual times or for prolonged periods during the day, just make sure he can be roused. Scary stuff...you're in my thoughts.

[justinekno]

My son hit his head on the driveway when he was 5 and the next day he was groggy and vomiting. We took him to the ER to have him checked and was told it was head trauma. Not to scare you but you might want to put the Lyme/herxing/reaction aside and consider the vomiting, sleepiness as a somewhat unrelated issue that should be evaluated.

 

 

We can add vomiting to our reaction today but I hope it is not because he hit his head on the floor when he passed out. He also has been dozing in and out. I think we don't see the behavioral stuff because he just feels so bad physically. This is the first time that I have ever noticed his eyes were dilated in his history.

 

So, if this is herxing it must mean that we are on the right track with the Lyme trail unless it is a reaction to the Flagyl. Sometimes I just feel like I having a hard time believing that it is Lyme we are dealing with whiteout a doubt.

[aidansmom]

My son hit his head on the driveway when he was 5 and the next day he was groggy and vomiting. We took him to the ER to have him checked and was told it was head trauma. Not to scare you but you might want to put the Lyme/herxing/reaction aside and consider the vomiting, sleepiness as a somewhat unrelated issue that should be evaluated.

 

 

We can add vomiting to our reaction today but I hope it is not because he hit his head on the floor when he passed out. He also has been dozing in and out. I think we don't see the behavioral stuff because he just feels so bad physically. This is the first time that I have ever noticed his eyes were dilated in his history.

 

So, if this is herxing it must mean that we are on the right track with the Lyme trail unless it is a reaction to the Flagyl. Sometimes I just feel like I having a hard time believing that it is Lyme we are dealing with whiteout a doubt.

 

Yes Aidan had also hit his head when he was about 20 months old and wouldn't stop crying and vomited so I know that hitting his head was a possible cause for the vomiting. I suppose it could be the cause for the sleepiness and the other motor issues but I think he was having symptoms before he had hit his head (eyes dilated, napped Friday upon arriving home from school - seemed unsteady upon awakening). Neither of us saw how he injured his knee which percipitated his collapse. I wonder if uncoordination was there first and caused him to stumble and hit his knee hard enough to have blood dripping.

 

Here is a timeline to the best of our recollection in case anyone familiar with timing of herxing vs drug reaction can help sort out (Sorry some of this is a repeat):

Of course I will get in touch with LLMD on Tues to see what they say.

 

Friday

a dose of Flagyl at 10:20 am

nap at 4:30-5:30 (unusual), unsteady upon awakening a little "off" the rest of the night

2nd dose of Flagyl 8:30 PM

 

Sat

8:00 am awakes = seems fine, eats a lot of breakfast

 

around 9:00 hurt his knee, blood and band aid cause upset and panic, we think we have dealt with it and we start to go on with our business a couple of minutes later falls on back. head might have hit tile (heard a loud boom did not see), for around 10 seconds head rolling back and forth, eyes open but doesn't seem aware, funny noises (breathing?) - suddenly snaps out of it seems OK for a little bit

 

around 9:45 = he grabs wrist like he feels a sensation, leans on us to keep balance, ends up on the floor and can not control limbs to stand up much less walk lasts several minutes, at least 3 minutes and maybe for 5 or even more minutes, when he did start walking around he did so for a few minutes with his Dad he was very unsteady like he was drunk. After a few minutes he sat down cried a lot, then he dozed in and out

around noon = he vomited, then he walked around a bit, coordination is fine at this time seems OK

12:15 went to sleep and slept until around 6:00, seemed more normal after that, steady gate, he did continue to experience a bit of reflux/burping but no more vomiting

 

Sunday

had a pretty good day

[aidansmom]

LLMD definitely thinks what happened to Aidan was a herx reaction and is not at all surprised by it since Flagyl is killing Lyme in cyst form. She does want us to follow up with neurologist to see if there are meds to help support this like raising his seizure med dose, etc. I also feel I need to try to add some more detox strategies.

 

I debated whether to do this but I thought I would share video one of the episodes Thai Aidan had on Sat. (My first youtube upload ever!)