TBB plus & OPC for PANS/PANDAS - w/ Clute

[eacampbell67]

my daughter is being treated for PANS/PANDAS - combination of zithromax (25mg) & minocyline (100mg) daily,  NP Kayleen Clute is working with us.

question - has anyone had expeience using TBB plus or OPC?

[Andrea40]

No, I’m sorry I haven’t. My son has been going through what seems to be PANDAS, too.  We live in Baltimore, Maryland. He is 11, and has all new (past ~3 months) severe separation anxiety, intrusive thoughts, great sadness & crying a whole lot, coughing tics, cognitive decline (he was going into “honors class” in 6th grade, but only made it through first 3 days, & then all of this struck him after being sick with what I thought was a cold for several weeks). He cannot go to school (debilitated). Our ped doesn’t “buy” pandas, even though it was that dr office that confirmed he had strep with quick swab. His MRI showed something concerning: (T2 hyperintensities in biparietal subcortical white matter). Currently on Azithromycin after being on Augmentin 2 times, 3 weeks each.  While he is doing better now after being on that (by the way, a wonderful neurologist, Dr. Shafrir, placed him on the Augmentin & I’m  sure that is what helped him get this far), he still has extreme separation anxiety from me.  I cannot go to work. His great sadness has improved, and his cognition is slowly returning. Still has intrusive thoughts and tics along with stomach pain, and constantly wants to be distracted with youtube or video games.

Have you ever heard of LDI?

I want to look into that, but I know it is relatively new.  I’m going to check into it. I’m a little hopeful.

TBB plus or OCP I have not heard of, but am curious.  Also, have you heard of SPM? Something like “specialized pro resolving mediators” only one company makes it.  Metagenics.  I believe that is used once inflammation is already in control. So, later to prevent flare ups.

Dr. Shafrir also wants him on prednisone, which I have been fretting about.  I will do it though, if need be.  I had to wait on the prednisone until his 2nd set of blood work was done (4-6 wks later). (A NP  in Roland Park suggested that one, because blood tests can be influenced by prednisone). I am waiting on those results. 

Hopefully NP Kayleen Clute will lead your daughter in a healing direction!  My NP doesn’t know much about PANDAS, I don’t think,  but he is really trying to piece things together. Is Kayleen known for helping w/pandas?

All the best to you!  I truly wish you well.

 

[eacampbell67]

sorry to hear your son is dealing with this - it can be consuming all the whole family.  we believe my daughter's started this spring ( exposed to lyme & strep) . starting showing signs - anxiety, by summer time - it was cognitive decline (forgot how to read) & light sensitivity  then headaches and sound sensitivity. 

Our Nurse does believe in PANS, she specializes in lyme  so this is right in her lane. we are in week 5 of antibiotics, she's gotten better more herself -  less headaches.  still sensitive to sound...still can't read.  she's going to school but not doing much.  we think its going to take 3 months for her to fully recover at best.  the TBB & OPC are herbal bacterials & anti-inflammatory

What is LDI ?- never hear of it what does it do.  Also never heard of SPM?  I'll look into it - i think we'll need to prevent flare ups down the road.

I know your  son will continue to improve - and stays happy and healthy

[Andrea40]

Hi there,  Thanks for answering about TBB and OPC.  Anti inflammatories are what is needed for us, I do believe, but something as powerful as prednisone.  So I’m not sure where I’m headed in that department. I asked my NP about Serrapeptase, but don’t know yet.

LDI is low dose immunotherapy and it  supposedly uses extremely low does allergen/antigen mixtures in combination with an enzyme, beta gluccoronidase, which acts as a chemical messenger and retrains the immune system to respond appropriately. It is supposed to reboot the immune system.  Sounds good to me, but when I asked my doctor, he said to try it, but don’t spend $100’s on it unless I can find something covered by insurance.  He tends to think along the lines of scam, and just doesn’t want me spending a lot of money.  I don’t know yet.

i do have a new doctor’s appointment for my son with someone who is supposed to treat pandas with LDI in Towson, Dr. Richard Layton. I’m so confused as to what to do, though.  It won’t be covered by insurance, and it is $300/hour. Perhaps 60% may be covered, but needs to go through insurance submission before I know. Definitely worth it if it works. Done sublingually, and requires every like 7 weeks of “core” treatment to retrain T cells or something.  Boosters are also given along the way, which I hear isn’t overly costly, maybe $30-40 each.  I just wish this was better known and understood! If you like, watch YouTube Dr. Karima Hirani. By the way, she Skypes and sees patients from all over.  That one is a $400 appointment.

Have you ever watched Dr. Elisa Song?  (Thriving Child) That is where I heard about SPM, along with low dose naltrexone for keeping flares down, once it is tamed.

All the best to you, I will try to keep you posted.  Please let me know how your daughter is doing, too. I sincerely hope she is doing better day by day!