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Hello,

My DS8 whom has been treated for PANS/Pandas and suspected Lyme for 2 1/2 years with Azithro daily with occassional 2nd antibiotic added and also the last 4 months with flagyl and diflucan recently went from 90% to about 80% so we decided to pull away everything (including most supplements, only left a few dosing daily) slowly and get a new baseline. The waters were getting muddy and he also had an elevated liver panel for the first time ever so it was necessary.

 

Well taking him off everything he looks better than he has in a long time. Eyes look good, skin, sleep good, for a whole 9 days. But on day 10 he had some intrusive thoughts usually either early morning or late evening but is stable the rest of the day. We pushed through the scary thoughts with talk therapy and strategies of talking back to the ocd. He is still holding strong today but I fear the signs of intrusive thoughts creeping back in are indicative of something bigger coming.

 

I am treating him for allergies as I know pollen is high here where we live. That helps some.

 

He has Gut issues since birth, chronic constipation and tends to get his intrusive thoughts right before he is going to get a bowel movement.

 

 

He is getting scoped in a couple of weeks but I don't anticipate a breakthrough. Mainstream doc that wants me to give him miralax daily for the rest of his life. yada yada

 

I am going to try diet changes because I was thinking maybe leaky gut triggers his PANS. He used to have chronic impetigo but that finally stopped. It seems his immune system is trying to wake up and act normal. He responded normally to a stomach virus this past fall and actually threw up. That was a first he usually suffers with just behavior but won't mount fevers or respond normally to illness.

 

I really think the main issue triggering PANS is now yeast. I think his gut was a mess before treatment and now is a bigger mess.

 

Here is my question? Should I go back to giving Azithro every 3 days prophallaixis dose or continue to push through. I feel like if I do I counteract the efforts I am making trying to clean up the gut, which is likely the trigger. Or is the zithro needed to modulate immune system and prevent a breakdown.?

 

He is never well for more than a couple weeks since the first huge episode two and half years ago while on antibiotics and now while off its the same pattern.

 

I am so confused. Sorry for babbling I just need some support and maybe it will help me find clarity.

 

Thank you for reading.

 

 

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I totally understand your dilemma. Did abx help in the past? Or was it just a way to prevent illness from setting you back? Have you re-tested liver?

 

What I found after doing 23andMe was that some of the supplements I was giving was good for one kid but bad for the other. Even things that are
supposed to be good for everyone - like milk thistle - was bad for my DD because it's a sulfur that my DD has a CBS methylation block that makes it hard for her to process sulfurs, which instead poison her with ammonia. I stopped the milk thistle and the garlic (which I was giving her to prevent yeast) and I also stopped the B6 which is so good for detox (unless you have CBS issues). She improved over the past 2 weeks. I re-started the B6 and within 2 days, she was ramped up with anxiety. Stopped it and she's happy again.

 

Conversely, I stopped some things for DS and am seeing that he's slipping. He needs some of the things I had stopped. So I think what you're going thru is a normal "spring cleaning." Time to stop and reassess. And unfortunately, sometimes the only way you know something was working is by stopping and seeing what happens in its absence. Like when your spouse goes away for a business trip and you initially enjoy having the bed to yourself but then (hopefully) miss him in other ways and are glad to have him back home :)

 

Of course, someone is bound to ask you if you've ruled out other infections, so I'll put that on the list. The fact that he hasn't enjoyed long periods of wellness suggests that you haven't gotten to the bottom of things yet. But whether that's due to infection or gut or methylation or .... well that's the million dollar question. Maybe if you're inclined to list what you've tested for, if you've done stool tests or tested for yeast, we can help you brainstorm. Out of 10 ideas, maybe one will strike a chord.

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As our family has found out........ yeast can be a huge problem. SO, I think your intuition regarding potential yeast was right. However, Flagyl is similar to tindamax and a very strong cyst buster. If your son had not been treated for the cyst form of Lyme yet I would expect there to be an increase in symptoms when starting Flagyl. How often were you giving it?

 

We have also tried taking younger DD off or down on antibiotics twice and each time she was definitely worse within 1 to 2 weeks. It just made us realize we had to keep digging for answers and we are now focused on heavy metals plus other appropriate supplementation. Our Dr. said the antibiotics are keeping the infections from causing symptoms but not fully resolving infections due to the heavy metals. I hope chelation gets us to the next level. Heavy metals can cause yeast and deteriorate gut similar to antibiotics. So, possibly something to check for if you haven't all ready.

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Flagyl was 4 months at 15 days straight each time. It cause yeast so he was prescribed Diflucan in conjunction. Initially Flagyl was giving amazing results a healthier happier child and great poops. But then it seemed to turn on him and caused severe ocd rituals . Now that he is off the med the ocd rituals have stopped. He just has the occasional intrusive thought. And its always the same intrusive thought that he didn't win. Gets upset cries wtih anxiety and fear and gets over it quickly. Neuro thinks it could be simple partials causing it so he is scheduled for EEG on the 19th. I believe in my heart with all my research and journaling of his symptoms the answer lies in the gut. He is just a mess in his GI tract.

 

He loves alka seltzer gold said it makes him feel better and gives him energy. He is constipated since stopping all the antibiotics even though I have increased his probiotics. I stopped the nystatin too but I am thinking about adding that back in. It seemed like the die off was too much for him. I do see improvement when he drinks activated charcoal but I am not sure how safe that is to give to him on a recurring basis. I feel our doc is a little bit of a loose cannon and switching.

 

Very confused that is why I want a knew doc knew perspective. I am also trying to figure out how to start the SCD diet not easy. Thanks.

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I should add that he had a long history of strep and had to have his tonsils removed because they were touching when he was 5 then Pandas showed up 6 weeks after the surgery. Then he went thru a phase of chronic impetigo. Now it seems to be yeast cycling can't bring down yeast his symptoms are the deep itching, foamy urine , ammonia smelling urine, giddy, climbing and brain fog or agitated. He had yeast test thru Quest negartive, yeast test thru great plains positive. Same with clostridia.

 

Western blot and Bartonella negative. haven't been able to do Igenix.

 

The new dr I found is recommended on Pandas network and treats lyme and pans so I am hoping to get more answers. Like the testing for MTHFR I brought that up to current doc and it really didn't go anywhere.

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Obviously, the C-Dif is going to be an issue, cause symptoms. I am surprised you are not treating that directly with something like vancomycin. I know Nancy D's daughter is on or was on a very aggressively protocol for C-Dif and you might reach out to her or check her history.

 

When you got your results from Great Plains did it tell you the best choice for treating specific strain of yeast? Based on our comprehensive stool, it was Nystatin, Grapefruit Seed Extract and Oil of Oregano in that order. We us a compounded nystatin that is 2,000,000 units per day. Our Pediatrician who is very versed in dealing with chronic yeast is prescribing the nystatin. It is a very high dose (much higher than LLMDs prior prescription) but has really made a difference for all our kids. We also treated the entire household because yeast can be passed back and forth easily. We used homeopathy (Candidate) on top of nystatin. Plus we took Boluoke, enzymes with Nystatin prior to meals to help break up yeast biofilms. It took a good 8 to 12 weeks to really make progress.

 

Due to intensity of deep itch, I am wondering if there isn't a fungus involved as well. We only caught the fungus after treating yeast due to rashes (ringworm and one other unspecified fungus).

 

As for methylation it is a tough topic to understand and respect those that have attempted it on their own. I have relied heavily on our Pediatrician for guidance on methylation, mitochondria damage, heavy metals, neurotransmitters, genetic testing similar to 23andme, etc. As you know, not all Dr.'s are created equal and her addition has been as valuable to our success with treatment as our LLMD. Even though LLMD understands all these issues, tests and treats he is limited by time (overwhelmed with patients)... our pediatrician is the "expert". BUT, she came highly recommended with regards to these issues from LLMD. These Dr.'s all seem to know each other and experience level. It might be worth a call to them for a referral to your local area. You are not that far if I remember correctly, at least more west than east.... PM me if you would like their contact information to request referral or at least confirm the new Dr. is 'truly' versed in these issues.

Edited by SF Mom
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I recently took 6 weeks off of AZ and doxy to be retested by Galaxy for bartonella. I was not finished with antibiotics by any means; the test was to gather further information.

I declined severely while off meds and I notice my GI problems returned. In my case I will have multiple loose stools and get completely washed out as a result. This problem returned after a few weeks off antibiotics.

Just one take on at least trying AZ and see how he responds.

Red

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If it were me I would start the azyth every three days for protection just until summer. Not sure if your son is in school or homeschooled, but due to that exposure along with all the springtime allergies, I think you should wait till summer to try stopping all meds all together. Just so you don't have any of the allergy stuff contributing to symptoms. Also, we live in the south and spring is the worst for strep around here. My son has always gotten strep every spring. Anyway, just my two cents.

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Thanks for all the posts. I did add Azithro back to the mix at 2am Sunday morning as he woke up with irrational fears, intrusive thoughts in his sleep at first then he woke up and was crying. Then fell back asleep and then woke up crying. . Clear sign of PANS. I also gave him nystatin. He is declining some, we asked the dr. to retest liver this week and are waiting for a Quest slip.

 

Today he woke up agitated and dialated eyes. So we are treating with IBu/nystatin and supplements. Tomorrow we give Azith. Hoping his liver panel is back to normal. Will know by the end of the week.

 

It is a dicey time. I feel scared all over again like the early months several years ago. We have come full circle and not in a good way. I hate this disease.

 

SFMOM _I am going to PM you. I do need a new dr. for him to get second opinion and new perspective.

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