Tonsillectomy for Lyme/PANS? thoughts, experiences?

[chubbermommy]

Hello all! This particular topic is worrying me and I would welcome any thoughts, ideas, experiences you may have.

 

My ND feels strongly that DS10 should have his tonsils out (although that is probably a very slim possibility as we do not have an MD or an ENT on board). She believes his tonsils are harboring a lot of infection and this is preventing him from progressing in treatment. DS is positive for lyme, tested negative for co-infections, exhibits severe motor and vocal tics, slight OCD, no "typical" lyme symptoms like joint pain, brain fog, etc.

 

A quick background - DS has never had strep throat. After tic onset in September 2013, he was positive on a throat swab for strep in October 2013, but no other symptoms. He was put on amoxicillin for 6 months. He had flares of symptoms over the winter, subsequent throat swabs were always negative. He did have the ASO and antiDNAse tested but I don't know the numbers. Because he didn't test positive for strep again, PANDAS was ruled out by the neurologist. Instead, he was diagnosed with a 'movement disorder' - i.e. tourettes or something.

 

In May 2013 he tested positive for Lyme. Put on Augmentin for 6 weeks, no real changes in symptoms. Then clarithromycin was added, great improvement for a week, then back to previous levels. Did that combo for Sept/Oct/Nov 2014 (+ nystatin in Nov). Dec 2014 started azithromycin (in place of the clarithromycin), very slow improvement over 3 weeks. Tried tiny dose of grapefruit seed extract for yeast over the holidays - immense exacerbation and we stopped everything. He developed a horrendous screaming/swearing vocal tic and became hypersensitive to everything, panic attacks, aversions/phobias.

 

He's better now, still some sensitivities (tics triggered by his sister's noises) and motor/vocal tics (screaming, a little bit of swearing) still there. Have been treating for yeast with nystatin and we are on a half dose of azith while we start the Cowden protocol for Lyme.

 

Now if you've read this far, does it sound like we should consider tonsillectomy? His tonsils appear fine, but I know they can look okay but still not be. What could explain his lack of progress? Yeast? wrong abx? maybe abx don't work for him?

 

(Don't get me wrong, I really like our ND, she's very experienced in treating Lyme and has studied with Dr. J. She's basing some of her recommendation on Dr Klinghardt's treatment of PANDAS. I'm just worried things may not go well with it for DS, but also worried that we're missing something by not doing it....)

 

Thanks for reading

 

 

[melmix]

Hi -

I am not sure this is that helpful since we are 7 days post tonsillectomy and have no idea what the long term results are but will give you my experience.

My son had one (know of) strep throat infection in his life. He was 4. He started pulling his hair out at the time but we did not know of PANDAS and went

in another (non-helpful) direction. He has since had high levels of ASO, DNASE positive streptozyme (along with Lyme, Myco, etc etc). We were thinking

Strep might not be the major trigger but my son was on probably 7 different (some concurrent) abx over the last 7 months and although his strep went

down a little originally in December it started going up again. We decided to get his tonsils out. He has never had really red tonsils or inflammed or anything

like that. I assume all of the strep is inside. Day of surgery he came out and had the best behavior we had ever seen. Only issue was he would not swallow

pills (abx or painkiller) and wouldn't take the liquid or melt away tablets. Two days in he had the largest flare of his life - almost uncontrollable - so angry

and hitting kicking and biting and could not look at anyone (or even have the blanket on top of him look at him). He had major OCD. We finally got a prescription for

Omnicef and gave him that in a drink (no flavor unlike his other ones when I opened them). That night he had a fever of 105 - we took him to ER (they kept saying

flu or virus). I knew it was strep. They did get a rectal Tylenol in him and fever came down and we took an rx for flu but didn't fill it. All flu and virus tests came back

negative later on -- so it definitely was not a virus (he is not even in school so don't know where he would catch it). Since then he is getting slightly better on the Omnicef and we have been able to have him take a couple Azithromycin.

So my take away for you is -- maybe find out the numbers on ASO and DNase (I have some doctors that told me his 800+ range was actually normal). Also my son really never had a sore throat, has mutliple other infections but the one thing I can say is something massive was released after his tonsillectomy so something was in there. I am glad I did it although the recovery pain and flare have been almost unbearable. I can't even be alone with him and my husband has no more days off - he has to request sick days to be donated to him. I can only hope that his horrible reaction means something came out that will make him better in the long run.

Hope this helps.
Melmix

DS - 8 Lyme, PANDAS, PANS

[fuelforall]

It's hard to say. Most of the PANS MD say better safe than sorry. Not sure what the right thing to do is, esp as you don't have a kid with strep. Same as me. We did it but his numbers did not change years later when we re tested. The suspicion is that my son is a carrier and it's way back in his sinuses (he has struggled a lot with sinusitis in the past, changes of diet seemed to have helped that).

 

So if the strep is in the sinuses then I don't think removing tonsils and adenoids is going to be much of a help. It would be nice if all of us knew exactly where the infection was lingering.....

[T_Anna]

We went to see Dr.L last week and she recommended looking into a possible T&A for my DS16. Her thinking was that he didn't do well enough after PEX in 8/2013 because maybe he still had infections or his siblings still had strep (DS14 is PANDAS-light, but had titers of over 1200). She has just completed a study and they found staph in the tonsils of PANDAS patients, they also found T&A helped resolve sx even in kids who did not respond to IVIG and/or abx. I cannot find the study and verify that data, when I do I will link. We are going to see an ENT (and ID) on 3/10 or 3/11 and we hope to have some answer then about proceeding with 1 or all of us having T&As.