Jump to content
ACN Latitudes Forums

PANDAS rollercoaster....Tonsillectomy or Lyme die off


Recommended Posts

Well, riding the rollercoaster again. After multiple failures with different antibiotics, something about the Rifampin seemed to work a miracle or maybe it was the combination of going through the "die off" with clindamycin and then the rifampin. By the end of this 5 weeks, our son has many of his symptoms diminished.

 

Now we did the tonsillectomy and day 1 and 2 he was the same. By day 3, he seemed to go downhill. slept 12 hours. This was the last day of the rifampin. Day 4 postop of tonsillectomy, we started liquid augmentin. Verbal triggers, choreiform movements, everything is back to the way it was on the clindamycin.

 

Is this PANDAS flare from the tonsillectomy even though we did IV Ancef intraop?

 

Is this Lyme die off? Someone said that we could be experiencing die off form Rifampin but he was best he had been over 10 weeks on Rifampin after hte clindamycin?

Keep in mind that initially zithromax and later first go around on augmentin caused increase choreifrom movements within hours of dosing. I am seeing that he seems to have "dieoff,reaction" several hours again after dosing augmentin. It is just stronger this go around on augmentin. And to make it even more confusing, he gets another dose in the evening as we do not see this type of reaction. I have no idea what is going on.

 

Our CD 57 came back at 24 so we are most probably dealing with Lyme. In addition, I think I am suspecting bartonella even though he tested negative. Why......feet things going on. When PANDAS came, my son began pushing his soles into the back of the carseat so much that eventually the carseat back broke. I also note that he doesn't like to walk on wood floor. PRefers to scale furniture as much as possible. This also seems more prominent in the morning. Finally, after the first dose of augmentin yesterday, he had a "crisis" where he was crying real tears of pain down his cheeks.....c/o toe joint pain it would seem. This was about 2 hours after his dose.

 

Please help if you have any guesses on whether the augmentin is helping or not or maybe we should go back to rifampin. It sure was nicer for him adn everyone on that antibiotic and alot of his symtoms had lessened.

 

Thanks.

Link to comment
Share on other sites

Seems like the rifampin was treating something! With the foot pain and the improvements on rifampin I would also suspect bartonella (rifampin is very good for bartonella). His CD57 is very low. Have you run any additional test for Lyme as it is not clear in your post? Are you seeing an LLMD? I am a little surprised to see you on a single use antibiotic of Augmentin to treat Lyme as it is not typical.

 

Sometimes individuals when on the right antibiotic or combo of antibiotics you can see improvements fairly rapidly. The reverse is also true depending on how you are infected and if you are not on the right antibiotic/combo you can see an increase in symptoms as quickly as 2 or 3 days (Bartonella), 1 to 2 weeks (Babesia) and 28 to 34 days (Lyme) when stopping or switching antibiotics like you did. These timelines are growth cycles and potential herx cycles.

 

However, when on the right combo of antibiotics there can also be an extended herx lasting months... i.e. my son was TIC free and shortly after starting a specific combo of antibiotics some tics resurfaced lasting at least 6 months however we saw unexpected improvements in other areas over the same timeframe knowing the antibiotics were working. It took a very long time for tics to settle this particular time but they did and we had an overall improved baseline.

 

I think you need to speak with your Dr. and see if you can't back to rifampin immediately. I suspect you'll witness similar improvements again when restarting.

Link to comment
Share on other sites

SF mom,

our story is convoluted, that's for sure. With the Clindamycin followed by the Rifampin, we were treating PANDAS that would not respond to other antibiotics. The Rifampin seemed to be the charm. We are under care of PANDAS Dr. L and in the mean time, I got Lyme and coinfections done. Came up only exposed but immune to Parvo and lyme bands 41 and 66 positive. I saw LLMD and asked for CD 57 to rule out Lyme before we went on to IVIG end of June for PANDAS.

Today I see lyme, pandas, and autism person at NIHA. I hope she has some answers and yes, I hope she puts us back on Rifampin. He also takes zithromax 250 mg as immunom. of pandas symtpoms. This too seemed to really help. maybe she will have us on that on higher dose??? I know that Rifampin is not to be given long term singularly or you set up resistance.

 

Thanks for you reply.

Kim

Link to comment
Share on other sites

Kim,

Sorry to hear your son has relapsed but I would second the suggestion to ask doc for the rifampin back asap. Also I do think this is related to the procedure. When the anesthesiaologist (spelling??) puts the tube down your sons throat for T&A the bacteria in the throat is pushed to the stomach. I was told this by our anesthesia doc when my son had his procedure. He actually warned me of this stating strep lives in the throat and that is why my sons throat needed to be clear before procedure we had to reschedule a couple of times.

My guess is the iv abx was not the right one to hold back the bacteria or the immune response.

 

 

Take care I hope things turn around quickly.

Link to comment
Share on other sites

He started back on rifampin last night. and I have a bunch of other medicines to start treating Lyme/bartonella?. I am very hopeful. And it doesn't stop us from getting the IVIG for the chorea,pandas....in fact she said that if you don't treat the Lyme first, then there is the potential for the IVIG not to work as well as it should/could. I am not sure sure how long we treat the Lyme before we can go to the IVIG.

 

Regarding tonsillectomy...yes, it could be flare but weird that the flare didn't start until Day 4 postop and it was the first day off of Rifampin and on Augmentin. I tried to think of everything I could. He was at the end of 3 weeks of clindamycin and 2 weeks on rifampin during tonsillectomy and the rifampin is the ABX that seemed to clear the strep as best of all the antibiotics. They gave him a gram of Ancef which is a whopper dose for a 50 pound kid and Ancef is what the PANDAS doc. suggested. His tonsils were not that large but I have heard it mattters also about the crypts in the tonsils too.The culture is pending.

 

I am hoping that it has more to do with coming off Rifampin. Crossing my fingers or else we'll just have to wait until the flare is over again.

 

Alot on my plate again. When you get more answer/more of a new plan, it feels good but then reality sets in and you have to get yourself pumped for the path ahead again. Does that makes sense? I am tired this morning....thinking too much. :-)

 

 

Kim

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...