Most Effectives Treatments for PANS/PANDAS

[eacampbell67]

my 14 yr old dd - officially diagnosed with PANS ( combo of lyme exposure, & strep)

we are in week 3 of treatment (we along with our provider suspected is was PANS)- 

daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, probiotic, herbals - TBB plus & OPC

 

Our provider doesn't believe in steroids, so we are this course for now.  We are new to the PANS/PANDAS ( 3 months to get to this diagnosis) - we've heard about other treatment options - just wanted to get others opinions

 

thanks 

[msimon3]

If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters".  The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease.  You will need to make a decision and choose a side.  If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, such as Flagyl.

Here are some links that may be helpful:

http://columbia-lyme.org/patients/ld_chronic.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/

[bobh]

I would like to suggest that one "treatment option" is to not add too many things or make too many changes at once.  These kids can react so individually and differently, and a "throw everything but the kitchen sink" strategy can result in a confounding "who know what is causing what" situation.

For example, in some (rare?) cases, vitamin D makes some kids worse.  That is even when they might be low on vitamin D in their blood - go figure (and some have went and figured, and have explanations for this kind of paradoxical thing).

Somewhat less rare (in my humble opinion) but still rare, are kids that get worse on probiotics.  Our son was measurably worse (I keep track of daily soap use as a measure of his OCD) on many different probiotics.  Some kids react strongly to some probiotics, some parents mistake that (in my opinion) for herx, and some (such as my son) get mildly worse on probiotics.  And of course, many have no problem with probiotics.  But if you don't introduce them separately (i.e. have them on it for a week before abx), you won't know what is doing what.  You can also try to figure that out by removing things later.  There is more than one story of a mom that in desperation (when her child was not improving) took the child off everything - and the kid got better.  But again, you won't know what was the culprit unless you remove one at a time, wait and watch, add back in, wait and watch, remove again, wait and watch, remove another, wait and watch, etc.  It is a long road, and also a less-travelled path (because we can't be patient enough - we want a quick fix).

[eacampbell67]

thanks msimon & bobh - for the insight, very good for for thought

[bobh]

On 11/9/2017 at 2:09 PM, msimon3 said:

Here are some links that may be helpful:

http://columbia-lyme.org/patients/ld_chronic.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/

I have finally gotten around to reading the 2nd link above.  It seems to be a very exciting development for lyme treatment, but then it says "Direct extrapolation of these in vitro findings to human treatment would be unwise and premature."  Has anyone had experience doing the 3 abx in combination anyway?

[jan251]

7 hours ago, bobh said:

I have finally gotten around to reading the 2nd link above.  It seems to be a very exciting development for lyme treatment, but then it says "Direct extrapolation of these in vitro findings to human treatment would be unwise and premature."  Has anyone had experience doing the 3 abx in combination anyway?

Daptomycin, mentioned in that second link, is an IV abx.  Dapsone is the oral version.  My understanding is that Horowitz has been treating lyme patients with oral Dapsone for a couple of years, in combination with high dose folic acid (the study says folic acid was used for the purpose of mitigating the small risk of potentially very dangerous side effects of Dapsone, but on his FB page he says it was, indeed, methylfolate, i.e. natural folate rather than synthetic folic acid).  He has a paper on it.  https://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.php?aid=7159

From the anecdotes I've read, like anything else, it helps some and not others.  Personally, I'm very interested in the anti-inflammatory and immune modulatory effects of Dapsone in addition to its antibiotic qualities.

For a lyme angle, there is an interesting discussion here http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/136190

Edited November 18, 2017 by jan251

[DsMom]

My DS is now 17 and applying to colleges, never thought we'd see that day. Like BOBH  mentioned my DS reacted to Vit D and O3's like we had given him LSD. Super scary. But he was a paradoxical reactor as so many PANS kids are.

He also was super sensi to Probiotics but I vetted the ones he took like no-tomorrow and keep copious notes on how he reacted to everything. He's the full meal deal - PANDAS Plus who never stopped flaring once he started for almost 4 years, missed almost 4 full years of any type of school he was so impacted, and was also diagnosed with Lyme and POTS. I think he was on Abx for over 4 years straight.

Game changers for him were getting the Strep out (took over 6 months and a tonsillectomy) at the beginning of his illness, then 2 years later him getting Plasmapheresis  (TY Dr. L), and now for the past year HBOT has been UNBELIEVABLE for Lyme symptoms, so we now have one of our own. Look into hyperbaric oxygen therapy for Lyme...

My boy was almost 12 when he crashed, IVIg didn't help at all, Abx kept him from getting Strep again but didn't help him stop flaring, ibuprofen took the teeny tiniest edge off him and he took 3 caps every 4 hours for 12-18 months if not longer. PEX was huge for us, although he got worse before better, but we got the suicidal depression and schizophrenic crazy gone and our boys mind back as a result of it.

He's 17 now talking about perusing an engineering degree. Dec 11th as the 6th year anniversary of his crash. It's like a bad dream we are waking up from finally, thank gosh. I sincerely hope your boy gets well soon.

[Sirena]

If lyme and strep—make sure that there aren’t other tick borne co-infections at play. Check out lyme book by Horowitz as a good overview.