PANS/PANDAS

[Jaelyn Gutierrez]

Hi Dr!
I need some direction again. Jacob recently got sick with a viral infection/cold. We all got it. But it seemed to flare up something in his system. I think maybe he has pans?
He started tearing shirts again and taking the strings out and eating them. He hadn’t done that in over a year.
He is clearing his throat constantly which I read maybe Pans. He has various vocal tics and his OCD is up.
Do you have any protocols for PANS? I read on someones blog that their NP recommended Goldenseal 2 twice daily, magnesium and NAC, for a pandas flare. I’m not sure if that would help for a PANS flare?
Can you give me some suggestions?
Thanks!

• This topic was modified 5 years, 10 months ago by Jaelyn Gutierrez.

Topic

[Jaelyn Gutierrez]

Also Dr,
I found this info about a protocol that Regarding Caroline blog used on her child.
What do you think?
regardingcaroline.com She used this Natural alternative to prescription antibiotics for STREP / PANDAS Disease Goldenseal (GS) — 500 mg, 4-5x per day Oil of Oregano (OoO) — 2 drops, 5x per day (tiny softgels equal 6 drops) Berberine complex — 200 mg, 5x per day Olive Leaf Extract (OLE) — 200 mg, 4x per day* Lauricidin — 1 pellet, 4x per day*

Please let me know? Thanks

[Jaelyn Gutierrez]

Dr Woeller,

I think Pans might be the missing link as to why Jacob is still severely autistic. I can’t rest until I help him get better.

Please help me

[DrWoeller]

Jaelyn,
There is no one specific protocol for PANDAS/PANS, but the one you listed from Regarding Caroline is similar to others. BioBotanical Research as similar products and they have some good support staff that could assist. I would suggest contacting them directly at https://biocidin.com and inquire about their Biocidin and Olivirex products.

Dr. Woeller

[Jaelyn Gutierrez]

Ok thanks Dr! 🙂

[Roshan De Alwis]

What is PAN/PANDAS and how does it differentiate from AUTISM?

[DrWoeller]

PANDAS (similar to PANS) is an autoimmune disorder triggered by Group A Beta-Hemolytic Strep. It can cause vocal and motor tics, OCD, ADHD and regressive behavior problems. There are many children with PANDAS who are not autistic and some kids with autism who have PANDAS. What isn’t associated with PANDAS is the language, stereotypical and social problems characteristic of autism.

Dr. Woeller

[Jaelyn Gutierrez]

Hi Dr!
I’m back! Jacob is regressing again. Same like last year. I think it’s a PANS flare. Im thinking of reordering the supplements before from the above protocol cause they did help. Or I might order biocidin. But I wrote to biocidin just now and they won’t give me any info on what products to order..they said to talk to a dr??

But my real question is: if my son is a pans kid? How do we stop this? Which test will show strep? And what antibiotics should I start with to treat underlying strep issues? I don’t want to go to his Dr. I’d rather do it alone or use you. So please tell me what to do next?
Can you write antibiotic rx for strep?
I also want to try sonic cholesterol.
Trying folinic acid again too. He is still mostly non verbal. 18 yrs old now.

Thanks

[DrWoeller]

Jaelyn,
I cannot prescribe antibiotics out of state or at a distance. I would suggest going with the Biocidin again. What was the protocol again you were using?

PANDAS/PANS is challenging and even antibiotics are not curative in all cases. There are many antibiotic choices, but Zithromax for 5 days (500mg one day 1, then 250mg days 2 thru 5), then 250mg once per week for many months is helpful.

However, Biocidin-LSF can work too.

There are two lab tests that are helpful for identifying strep: ASO Titer & Anti-DNAse B Titer and the Cunningham Panel.

However, these tests only identify immune reactivity to strep, they do not diagnosis PANDAS.

Tell me again about the previous protocol.

Dr. Woeller

[Jaelyn Gutierrez]

Hi Dr! Thanks for all the info!

I ended up doing the following:
1 cap Swansons Berberine complex w/cinnamon gymnema & Fenugreek
2 caps 1 time a day Candida Support by Now which has oil of oregano in it
1 cap Swansons Olive Leaf Extract 500 mg
1 cap rite aid Echinacea/goldenseal 500mg/400mg
2 caps at bedtime Natures Truth Kids Chewable Probiotic-10
1 cap Jarrow biotin 5000 mcg
And I also gave a little coconut oil in place of lauricidin

{{This is the original protocol given to me by another biomed mom
for STREP / PANDAS Disease Goldenseal (GS) — 500 mg, 4-5x per day Oil of Oregano (OoO) — 2 drops, 5x per day (tiny softgels equal 6 drops) Berberine complex — 200 mg, 5x per day Olive Leaf Extract (OLE) — 200 mg, 4x per day* Lauricidin — 1 pellet, 4x per day*}}

Thanks!

[Jaelyn Gutierrez]

So basically … PANS is something I need to keep managed? Right?
Its taken a long time to get to this point. To figure out what the root cause was. He was doing awesome after the protocol above.
And I had even started cbd oil and then added longevity by Modexus.

Then I pulled those supplements thinking he didn’t need them plus they are costly.
But now I see regression… OCD Is way up again.

So I guess I have to start over.

[DrWoeller]

Jaelyn,
Okay. So, he is really susceptible to underlying infections and immune stimulation. You have things covered with Lauricidin and Olive Leaf Extract. The other things are good too. What is difficult to know is which of these ingredients isn’t really necessary? If any?

For Biocidin, I would suggest the Biocidin LSF. It is a liposomal form of this supplement which helps in its absorption and distribution across tissues layers and cell barriers. As you know, Biocidin has various ingredients in it so it may be able to take the place of individual ingredients, e.g. Berberine? You will have to see how things play out.

I think the overall program you have is very good and Biocidin-LSF will complement it. The LSF formulation is quite powerful and often not a lot is needed to get the job done, but again, it is an individualized situation. Therefore, there is no established dose for every condition of person. I would suggest starting with three pumps three times daily mixed in water or juice. If you feel he is sensitive to new supplements than starting at a lower dose is okay too, i.e. one pump three times daily.

Sincerely,
Dr. Woeller

[Jaelyn Gutierrez]

Thanks Dr! I appreciate all the info! I’ll let you know how it goes.
😁

[DrWoeller]

Jaelyn,
Sounds good. Thanks.
Dr. Woeller

[Jaelyn Gutierrez]

Hi Dr Woeller,
I would like to try the Sonic Cholesterol as well for Jacob. His total cholesterol in Feb of this year was 130.
How do I get a referral?

Thanks

[DrWoeller]

Jaelyn,
I just sent a message to New Beginnings Nutritionals. You can contact them directly to order the Sonic Cholesterol. I would suggest four capsules daily. This could be two with breakfast and two with lunch or dinner.

Dr. Woeller

[Jaelyn Gutierrez]

Thank you Dr Woeller…I will order that asap.

I just want clarify on the Biocidin.
You said above 3 pumps/3 times a day?
Cause on the bottle it says 1 pump 3 times a day.
Just want to make sure I’m not giving to much? Jacob weighs 180.

And Jacob is doing much better…i noticed a difference right off the bat with Biocidin. I also added back some other supplements but I think the Biocidin is really making the difference.
😁

[DrWoeller]

Jaelyn,
The dosage on the bottle is just a generic suggestion. They have to put something on the label.

Good news on him doing better.
Dr. Woeller

[Jaelyn Gutierrez]

Thank you! 😊

[Jaelyn Gutierrez]

Hi Dr Woeller,
I just wanted to update you on my son. So I had started biocidin and was doing some of the other supplements for pans but Jacob was just getting worse. He developed lots of tics. He is walking backwards sometimes, scraping his feet on the floor, he curls his toes in and tries to walk that way. He sticks his tongue out like Jack in the Box tongue (I read your article on PANDAS). Except that when he is doing these movements.. I can tell him to stop and he does. So I dont know if thats the same or not? But he has a coughing tic, various vocal tics, facial tics including the tongue, walking tics, ocd stuff. The ocd stuff will be him like doing something over and over again or shuffling his feet in the same spot over and over again. He rubs his arm hard on the desk or his legs on the legs of the chair. He constantly finger flicks and sometimes near his eye where he pokes his eye. He grips his hand in a weird scrunching way and holds his elbows up and walks weird. But if I tell him to stop he can walk more normal.
Anyhow… just to give you an idea of what hes been doing.
I ended up scraping all his vitamins and started over.
So I figured I would concentrate on his gut first. I had not been doing good probiotics for awhile. It was on and off. So I’m being more regular now.
I also readjusted his diet and took away something’s that might make him worse like deli meats, peanuts, small traces of dairy, raisins, splenda in his tea. I use regular sugar again instead. (I know splenda can mess up the gut now) So his diet is gf/cf/feingold/low sugar.

He is currently taking:
Vital-Plex by Klaire Labs
Prodegin by Klaires (really wanted that lactobacillus plantarum because of that recent study on the gut in autism) (just started this one last night)
I also bought Saccharomyces Boulardii from Klaires. I wont start that till next week probably until I see what Prodegin does.
(He had been taking Dr Tobias probiotics for 4 months previous to the new probiotics but the tics never went away so I want to try something else)

For vitamins I started these 2 weeks ago: He is doing b6/mag by Kirkman labs. I had pulled the spectrum complete 2 by kirkmans cause I wasn’t sure if something in that vitamin was messing him up. But I may add back in a multi.
50 mgs zinc picolinate
2 omega 3 caps by Nordic Naturals (690 mgs)
Digestive Enzymes
Just started the real Lauricidin about a week ago. Seems fine with it. I thought I might get a herx reaction but I didn’t. But I started with a little less then half a scoop. I’m working my way up to the full scoop.
Milk thistle

He is starting to be more happy, not as many tantrums. When he gets stressed like during ABA on Zoom. He will start doing several tics at a time…. sometimes he has about 10 tics going. But this last week I saw improvements probably cause of the new vitamins.

I may add back in the biocidin? But I’m not sure yet. I’m going to give the lauricidin a try and all the probiotics to see what that does first.

But my question is I am giving 5 billion probiotics in Vita Plex, 30 billion in the Prodegin and when I start the Saccharomyces it will be another 3 billion.
Is that a good combo? Can I give more of either one of these vitamins?
I heard another med maps dr said once that he gave his daughter on the spectrum probiotics in the billions and billions.
What do you think?
How high can I go?

Sincerely,
Jaelyn

• This reply was modified 3 years, 11 months ago by Jaelyn Gutierrez.

[DrWoeller]

Jaelyn,
First off, avoid any probiotic that contains Streptococcus thermophilus. This is a common bacteria in some probiotics, but not all. It can exacerbate PANDAS/PANS.

PANDAS is hard to define because it not only includes clinical symptoms (similar to what you describe), but lab testing confirmation too. PANDAS is specific to strep, but PANS can be triggered by other pathogens and is similar to PANDAS in presentation.

I do not know if you have to use massive amounts of probiotics, but a good diversity overall, e.g., lactobacillus, bifidobacterium, is fine. The S. boulardii helps to combat fungus. What you listed as far as probiotics is fine, just make sure none have the Strep. thermophilus.

Dr. Woeller

[Jaelyn Gutierrez]

Thanks for the response Dr! I’m aware of the strep strain and I always avoid it, thank you.
Sincerely, Jaelyn

[DrWoeller]

Jaelyn,
Okay. Hope you are doing well too.
sincerely,
Dr. Woeller

[Jaelyn Gutierrez]

Yes we are good. Thank you! God bless! 😄

[Jaelyn Gutierrez]

Hi Dr! So I just wanted to update you on J and so we can keep a record here for reading. Js tics are still going strong. So I’ve decided to try the E-protocol again, the one you gave me in the very beginning. Cause he did so well after that. I also just ordered new probiotics from All Star Nutrition. I am also going to do Fermented Chlorella and milk thistle. I’m gonna try and get him back to base level. I suspect a new supplement I had added a while back really drove his phenol problem back up. And I think doing the E protocol again can get rid of it? Just a theory. Idk? But I figure we can do this detox/inflammation reducer to help his ocd?? Ive tried so much. But I just cant give up. Especially cause at one point he was doing so good after you had helped me the first time. Can curcumin, the good kind be taken indefinitely? Like what would be a maintenance dose? Thank you!

[DrWoeller]

Jaelyn,
Do you mean the Enhansa?

Dr. Woeller

[Jaelyn Gutierrez]

Hi Dr! Yes Enhansa.

[Jaelyn Gutierrez]

Hi Dr, we are on day 38 of the enhansa protocol. He is doing better. Can you suggest a maintenance dose?

I also want to try colostrum after we are done with this protocol. And I also bought inositol for his OCD.
Now that his inflammation is down and a little better…i hope we can make more progress on his OCD.
Sincerely, Jaelyn

[DrWoeller]

Jaelyn,
Can you outline for me what you are doing now. I do not have the specifics of this protocol memorized.

Dr. Woeller

[Jaelyn Gutierrez]

Hi Dr! He’s on 3 enhansas in the am and 2 at night. I have a copy of it, if you need me to email it to you? I will. 🙂
It says for day 37 and on: 3 caps with breakfast and 2 with dinner daily. But it doesn’t say, when to stop? Or to keep that dosage going indefinitely?
What do you suggest?

Thanks

[DrWoeller]

Jaelyn,
I am not sure either, but I do not see any reason to stop it. However, we can modify the dosage. Let’s see if we can get him to a maintenance dosage of one capsule twice daily, but first go to 2 capsules with breakfast and 1 capsule with dinner for 7 days, then finally 1 capsule with breakfast and 1 capsule with dinner thereafter.

Dr. Woeller

[Jaelyn Gutierrez]

Sounds good to me! Thanks Doctor! 😁

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