PANS/PANDAS-Feeling Lost!

[mama2alex]

Well, this board - just a separate post with a title that reflects what you're looking for...

[nicklemama]

When bacteria are killed off, they produce bio toxins and you can see reactions, such as you are seeing with tics and a worsening of symptoms. This is called a Jarisch Herxheimer reaction. Things will get better.

 

Unless you have tested with a lab like Igenex, the Lyme testing done was worthless. My son was originally diagnosed with PANDAS back in 2010. With proper testing, we learned he had Lyme, ehrlichia, anaplasma and bartonella and have been treating that and finding a lot of success.

[philamom]

DD13's PANS was caused by bartonella infection, and one of her earlier symptoms was recurrent strep infection. PANS/PANDAS doctors are not very cognizant of the effects of lyme and the coinfections. If you are not seeing a good response with one of these doctors, I would look for an ILADS LLMD or LLND in your area.

 

Unless Dr T has run a lot of immune function testing, I don't think he can say that your DS's immune system is fine. The coinfections effect different components of immune response which I believe can not be assessed through Pneumoccoccal vaccine serotyping.

 

Antibiotics are making his symptoms worse because they are causing die-off of gram negative bacteria and release of their endotoxins. These endotoxins (and the inflammatory cytokines that are produced by the body in response to them) are the cause of his primary symptoms. Antibiotics just produce more die-off and toxin release than his immune system was capable of.

 

You have to use probiotics. Culturelle is a good one, but the gut contains thousands of species, and replacing 1 species won't help much. A main portion of the immune system is housed in the gut and is the result of a properly functioning beneficial microbiota. We rotate Align, Culturelle and ReNew Life Ultimate flora. As well as consuming fermented vegetables on an almost daily basis.

Rowingmom- silly question, but do you rotate your probiotics during the day or on different days? I was thinking of adding another one to the mix - maybe align. thx

[rowingmom]

 

You have to use probiotics. Culturelle is a good one, but the gut contains thousands of species, and replacing 1 species won't help much. A main portion of the immune system is housed in the gut and is the result of a properly functioning beneficial microbiota. We rotate Align, Culturelle and ReNew Life Ultimate flora. As well as consuming fermented vegetables on an almost daily basis.

Rowingmom- silly question, but do you rotate your probiotics during the day or on different days? I was thinking of adding another one to the mix - maybe align. thx

 

We rotate through the day and on different days as well. Mon, Wed, Fri - Align at 10:00 am, Tues, Thurs, Sat - Culturelle at 10:00 am. Then at 5:00 pm we use one of either ReNew Life Ultimate Flora, AOR Probiotic-3, or Prescript-Assist, rotating daily.

 

Sundays are off.

 

We also eat fermented vegetables (inoculated with both ReNew Life Ultimate Flora and AOR Probiotic-3) at night after tooth brushing to help colonize the mouth and sinuses while sleeping.

[Bella1604]

You mentioned that Mycoplasma was high. It can take s long time on antibiotics to clear that as it is a big PANS trigger. We were for a 30 days on very strong antibiotics Biaxin and my Dd's igm numbers went down only 40 points. What was your son's myco igm?

This was helpful to me. Both of my children are high on IGG and IGM. Patience. NOT a strong point for me.