Am I Overreacting?

[cobygurl]

Hi All,

 

It's been awhile since I posted in here since my little guy with PANS has been doing so well. Other than mild flares after being sick he has been symptom free almost 2 years.

 

Anyways, maybe 10 days ago I noticed that some of his "tics" had come back. And in the last 4 days, his major tic (itching/scratching) that sent us down this road, seems to have resurfaced. It is currently nothing compared to what it was but I am so stressed about it! I see it mainly at night when he is watching a video or when we are doing some schoolwork.

 

Do you think I am just overreacting?

 

This summer we have been somewhat relaxed with his diet and his supplements, could this be it?

 

I am also due with my second child in 3 weeks and put off having another child until I knew my DS was better. This feels like a scary nightmare to me that it could be coming back...I have a new baby on the way and I have no idea what the trigger is. He hasn't been sick that I know of. I guess just feeling scared.

 

Curious if anyone has had symptoms resurface after an extended period of time?

 

Thanks for listening and for any advice you might be able to give.

Edited September 10, 2015 by cobygurl

[trintiybella]

I am so sorry your going through this. I hope someone that is more knowledgable on this responds to you. Thinking of you....

[cobygurl]

Unfortunately, my son's tics have continued. I really am heartbroken.

 

He is now having OCD where he is continuously counting things and then needs to tell me what number he is counted to. This happens so many times per day!

 

I read somewhere recently that if I upped his supplements (which we were slightly lax on over the summer) that it could make things worse.

Has anyone found that to be true in a flare? Would anyone suggest taking ibuprofen to see if it helps? We haven't done this in such a long time as I mentioned he was doing so well.

 

Honestly I feel just so lost and would appreciate any feedback...

 

By the way, his original trigger was coxsackie and then later we discovered lyme, no co-infections. He has been treated by an LLMD with supplements as we were hesitant to use antibiotics as he was doing so well.

 

Thanks in advance.

[rowingmom]

Honestly I feel just so lost and would appreciate any feedback...

 

By the way, his original trigger was coxsackie and then later we discovered lyme, no co-infections. He has been treated by an LLMD with supplements as we were hesitant to use antibiotics as he was doing so well.

 

OK. You asked for it.

 

My suggestion is that because lyme is so immunosuppressive, there is no such thing as having no co-infections. If ticcing and OCD are involved I would retest for bartonella.

 

If you are hesitant to use antibiotics, find a LLND or naturopath who will help you with herbal protocols.

 

We didn't find babesia until we trialled babesia herbs and got a babesia-specific herx: air hunger, chest pressure, sighing, dry cough, thigh pain; all symptoms she had never had before.

 

DD had previously tested negative for both babesias through Igenex. It was only by treating the negative-testing babesia that her bartonella symptoms finally fully resolved. Perhaps your son is in the same boat, with an underlying coinfection that is holding him back.

 

For DD, ticcing was entirely associated with bartonella die-off toxins, never with babesia treatment.

 

If by increasing his supplements you are also improving his immune response, then yes, you could be producing a die-off of some kind. He may also be having problems detoxifying so you need to investigate possible MTHFR deletions and address those.

 

We have never used ibuprofen for brain inflammation; preferring to go a more natural route I chose Buhner's recommendation of Japanese knotweed and found it to be very helpful. DD used Japanese knotweed pretty much throughout her antibiotic treatment and we continue to use it now.

 

Buhner also recommends kudzu as a good anti-inflammatory for any type of encephalitis.

Edited September 27, 2015 by rowingmom

[formedbrds]

No you are not overreacting. Yes, it does come back after long periods and can be harder to control the 2nd, 3rd, 4th time around. (speaking from experience) Contact whoever has been helping you managing this and take action now. I don't know lime but for non-lime ibuprofen can help a little. Otherwise, I second rowingmom comment about supplements.