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Nightmare PANDAS/tics newbie - need help/advice


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It's been a while since we posted an update. Basically we are going with an LLMD in our area based on the Advanced Labs result for Lyme. We just got results from a follow up Igenex test - which turned out to be even less definitive than the first we had done late last year. We want to make sure that Lyme is indeed the culprit before we embark on a long term use of Abx but we cant seem to find the test to confirm the Advanced Labs result.

 

I read somewhere that the CD57 cell count was a good test? Has anyone used that?

 

Also is there an alternative to using high doses long-term Abx against Lyme? Is there a treatment that will put less strain on our 7 year old?

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Hi and welcome!   Good for you for testing with Igenex.   Both bands 31 and 39 are lyme specific, meaning that only an infection with borellia (lyme) will result in these bands showing up on the

Steroids are a tough one. They tend to work temporarily for PANDAS kids because they suppress the immune response causing the inflammation in the brain, as well as reduce the inflammation in general.

Update on our situation. We have started our DS on Enhansa for the past week (Advils were causing some trouble) and Immuplex to boost his immune system. We are already seeing some mild reaction / worsening - almost like a Herxing even before starting Abx. Not sure if this is normal. Our son is an overmethylator based on COMT and MAO results but we have him on Molybdenum to prevent the sulphites in Enhansa impacting him too much.

 

LLMD is starting us off on Cefdnir - we plan to start next week just as schools close for winter vacation - fingers crossed. We also plan to use Japanese Knotweed to keep inflammation at bay.

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Just FWIW, my DS cannot handle Enhansa. He too is COMT +/- and MAO+ but his CBS is normal, so no need on our end to manage sulfurs. When he was on Enhansa, he was very, very angry and belligerent and intolerant and just impossible to be with. He couldn't even stand to be with himself. Stopped Enhansa and he was balanced and agreeable again. Dug a little and found that curcumin is an MAO Inhibitor. Since he is already MAO+, this gene is naturally down-regulated in him. So taking an MAO-I on top of that, along with his COMT making him slow to degrade dopamine, may have just left him flooded with more dopamine than he could handle. Aggression can be a trait seen in MAO mutations. So we ditched Enhansa, even tho so many rave about it. It just wasn't a good fit here.

 

I hope you have the opposite experience! But if you don't, it could be the genetics and not a lyme herx.(DS was done with lyme when we tried Enhansa - it wasn't a herx).

 

As for alternatives to abx, Stephen Buhner's books on natural antivirals and natural antibiotics are on my Xmas list.

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Thanks LLM - I think we need to get Buhner's books as well. I suspect we will need Abx for a while - this is going to be a long haul. I am prepared (well, maybe not really) for DS to get worse before he gets better. On the genetics, perhaps our son's MAO is not as much expressed as your DS - I think just because a gene exists doesn't mean it's expressed (?)...anyway am thankful for any small mercies...

 

 

But its good to know that other's have passed this way and come out on the other side to a better place....I'm counting on friends and well-wishers on this forum to help us through the tough time ahead...we'll keep the updates coming.

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Its been a while so wanted to post latest update on our case. Since mid Dec son has been on Abx to treat Lyme - Azith 250mg,Cefdnir and most recently (past 3 weeks) on Sulfamethoxazole (Bactrim). Past week or so (i.e. not immediately after adding three Abx but a few weeks into the regimen) DS has begun to show new symptoms - he "writes" words and numbers in the air with his fingers - and some facial grimaces are back. We have him on Nystatin to keep the yeast at bay and on several anti-inflammatories but these new symptoms seem to be here to stay. Now and then we also use lemon water to detox - I don't want to give DS charcoal and others stuff - poor thing is already on 17 pills....

 

Soon we will be adding Tindamax (pulse) to the triad of current Abx - I know its a powerful drug and have read several posts about the exacerbation of symptoms it brings about so we'll take it slowly.

 

Wondering is anyone has seen similar trends in symptoms with Abx - any advice on how to handle? Tips and traps? Anything we should be doing / thinking about?

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Now and then doesn't work well for detox. It needs to be done daily.

 

Epsom salt baths are important as well. You really need to make sure that your son is either having plenty of BM's to eliminate the toxins that his body is dumping into his intestines before they can be reabsorbed, or take something that will bind the toxins and keep them in the colon (ie charcol). We went the route of soluble fiber - psyllium/metamucil. This also needs to be taken apart from other supplements so they aren't bound in the soluble fiber matrix.

 

We saw the symptom escalation that you are describing only with tindamax, but it wasn't a gradual escalation. DD herxed and was unable to detox from it, and for this reason our LLMD suggested pulsing. For us, this worked.

 

With other abx, DD's herxing would began within a day or two and then resolve within the week.

 

I would concentrate on detoxing and perhaps investigate whether compromised methylation (MTHFR testing) is an issue. You may also be dealing with an abx intolerance.

Edited by rowingmom
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I agree with Rowingmom. It is possible it could be your antibiotic. Bactrim is often not tolerated well because it is a sulfa drug. Those who have CBS mutations do not tolerate sulfa drugs well. We tried my daughter on bactrim also and kept thinking she was having a herx reaction, but after 5 weeks we finally switched the antibiotic and her symptoms stopped. Something to consider.

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