Robinhubb

Hi there! I’m 25 now but was diagnosed at 7. I had intrusive sexual thoughts, thoughts of hurting others (these were rare and mainly about the people who took my blood because I was entered into a testing program since PANDAS was new-ish), intrusive thoughts about my parents dying (I think this is where a lot of the separation anxiety comes from for PANDAS kids because I was afraid
to say the stuff out-loud in case it came true, I didn’t want them to get hurt I was afraid of losing them every moment of everyday), intrusive thoughts about really bad things happening to my dog (I remember fighting an OCD urge to make a symmetrical mark on my
paper in first grade and suddenly I heard a yelp (I had hallucinations as well) and my brain kept telling me she was dead, intrusive thoughts about people coming to hurt
me or take me away in the night. 
 
If you have any other questions I’d be happy to answer any of them. And if it helps at all, I’m a functioning adult (I work in an OR and i’m pursuing being a physicians assistant). I know it’s terrifying but I promise you, you and your kiddo are strong and will make it through this ❤️

Oh do I understand the stuck and pissed, and $$$ stressed and tired.
 
If you want to talk over what you've already done and seen, and brainstorm, give me a call.  I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources.  And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway"  and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps".
So if I can help with the detective work, I will.
Where are you located?
Lucy
PS. I'm a night owl on PST, in the SF Bay Area.  Send a DM.

@bws1565
My DS now 15 had PANS symptoms since he was an infant.  He didn’t have MMR until he was 9 or 10 years old.  I believe he had a reaction to DTaP at 6 months old, though.  

We did a whole bunch of different probiotics—Culturelle, GutPro, Flora, etc. For antibiotics the ones that he was on longest were a combo of Biaxcin/Augmentin and then later  Clindamycin/Rifampicin because the strep came down, but not the Myco p.  (The Clindamycin was really rough on his stomach though).

Hi, my daughter has also struggled with PANS/ PANDAS and her mycoplasma titers have been elevated this year as well. She never tested positive for Lyme until she had a recent test through our LLMD, who has treated her in the past even though she just had indeterminate test results. She has also been treated effectively a few years ago with IVIG from a PANDAS specialist. It helped, but symptoms came back, and she was showing more fatigue and aching muscles the past year. My hunch was this is Lyme.  So she saw the Lyme doctor again recently and she recommended this time that she get a urine Lyme test through DNA connections. It came back positive for Lyme, Bartonella , and Erlichia. I am so glad she had that test, and we could stop wondering whether Lyme was a factor or not. I’m frustrated that past diagnostic tests for Lyme weren’t positive and thus she continued to suffer. 
She is currently being treated for Lyme again, and Bartonella and Mycoplasma. There are new regimens the LLMDs are using for persistent/ chronic Lyme, including Disuliram, which is still experimental but showing promise, and a combination of Dapsone along with other antibiotics such as minocycline and rifampin. None of these approaches are easy, but they are reports of people getting better after 3 months with Disulfiram, and a few months or more of Dapsone protocols. 
I STRONGLY recommend you get the Lyme panel DNA Connexions test. It is not cheap- 650 dollars, but you don’t need a doctor’s order- you go online and pay and they will mail you the kit. There are too many people walking around with Lyme that are undiagnosed. Lyme can manifest as predominantly neuropsychiatric symptoms in children as well. 
I don’t work for the company  I’m just a mom that has dealt with this was for too long, and now I think there may be hope for kids and adults with Lyme  Your doctor- even some PANDAS docs and most PCPS- won’t even be aware of this test  
Good luck!
 

My DS responded very well to Clarithromycin after showing high Mycoplasma titers.  It’s common for kids to get yeast issues from antibiotics even while taking probiotics, so it’s important they have the probiotic 2 or 3 times a day.  Be sure to space the probiotic at least 2 hours away from antibiotic.  I’ve used Gutpro (expensive) and Jarrow (reasonable).  I wouldn’t skimp and use a generic grocery store or drug store brand.  Yeast can cause issues itself.  I also give my DS a yeast control supplement, especially while on abx, and for a few weeks after.  We’ve used Candicid Forte and OrthoFlora yeast support (Protocol for Life Balance).  I’m sure Whole Foods also sells yeast control supplements.  
I prayer that your daughter finally  gets some relief from the abx.  Keep us posted.  

We found 3 doctors in Illinois that immediately (after seeing bloodwork) recognized this as PANDAS and/or Autoimmune Encephalitis).  Unfortunately none accepted DS medical coverage. The first said that if we could not get insurance to pay for IVIG, we needed to “beg, borrow or steal” to get it, or he would be institutionalized.  By this time we had already gone through our savings (including retirement savings) due to unpaid time off and unpaid medical expenses.  We used crowd funding to pay for first IVIG.  We saw immediate improvement, but it was not lasting.  We stopped seeing first two PANDAS MDs, mostly due to location, cost and accessibility.  Third MD ordered Cunningham Panel and was able to get IVIG covered under AE.  Although this doctor does not take DS insurance, IVIG is considered a prescription and it is covered.  I sometimes see on these posts that a child may only need 1 or 2 IVIGs.  This was not the case for my DS (possibly because the illness went untreated for so many years).  For your daughter, 1 or 2 may work.  Read the book “Saving Sammy”.  Beth Maloney’s son was cured with antibiotics alone, but again his illness went untreated for maybe a year or so.  I think that’s what makes the difference.  
I believe it’s important to find a doctor experienced in PANDAS/PANS, not just someone who is open to the possibility and willing to give you antibiotics for a period of time.  

I’m sorry your daughter is still suffering and hasn’t seen much relief from the supplements.  Her symptoms sound like autoimmune encephalitis (AE).  This is the diagnosis that was used to get IVIG approved for my son from late 2017 thru present.  In 2016, a rheumatologist (who had limited experience treating PANDAS kids) prescribed a high dose of Augmentin for 30 days, which worked like magic.  Unfortunately his symptoms returned when she lowered the dose.  IVIG was not covered for PANDAS, and she refused to order under AE, because he was not experiencing seizures.  From what I read about Susannah Calahan (Brain on Fire book/movie), she was lucky to experience seizures, because that’s what led her to the doctor that diagnosed her with encephalitis.  Apparently, some people (including my DS) have encephalitis without experiencing seizures.  So his rheumatologist was wrong.  

Maybe a PANS/PANDAS specialist could do a Skype/phone consult and at least give you a script for all the blood work? Also this thread has info on doctors people here have seen and I think various states are mentioned. 
 

I know that “inexpensive” supplements can add up, but we also used 5-HTP for our DS.  It was recommended by an otherwise unhelpful psychiatrist.  This was when DS was at crisis level.  Need to use on empty stomach.  I was able to get DS to and from bloodwork appointment on public transportation because of the 5-HTP.  I don’t recall why we stopped using it.  This was in 2016.  I believed we stopped a couple months later when we finally found a doctor to prescribe high dose of Augmentin.  
What form is your Oil of Oregano?  Again, we saw improvement, but used a high dose.  15 drops of undiluted 5x a day (mixed with orange juice). 
Something else we use as antibacterial and anti inflammatory is tea made from ginger root.  I grate a hunk of ginger root and steep it in boiling water, then strain.  It’s pretty spicy, but we like it.  We’ve been chilling it and using as an alternative to unsweetened iced tea. 
At the risk of bombarding you with information, those were a few things I thought of.  

My son had strep and myco P. Try testing for myco P.  I had never heard of it before they tested for it (I had never heard of PANDAS until pediatrician told me). The first dr we saw after pediatrician was an infectious disease specialist—he tried a whirlwind of antibiotics over a course of two or three weeks and nothing really helped. It was only after 6 weeks of Biaxcin plus 2 weeks of Augmentin on top of that that we saw a difference (that was with Dr T—specialist in NJ). My point is that you aren’t doing anything wrong —just that most times this is a long haul. I think there are a few kids who recover quickly with one two week course of antibiotics, but I think they’re the exception not the norm. From what I’ve gathered it can take 4-6 months (in our case it was 6-7 months) to return to baseline after the initial exacerbation and the exacerbation can last for weeks, too. I think time is a big part of the healing process. The inflammation needs to come down and even if there are no strep titers, there could be ones from myco p. Have you also checked for Lyme?
Oh, and even with a solid PANS diagnosis from multiple drs, I did also wonder if my son was mentally ill and that I was deluding myself. So, I know how you feel. And we were offered psychiatric drugs almost immediately as well (from the infectious disease dr).

Yes we just used a doctor thst didnt use my insurance...he just ran strep teiter thats it. Called my kid crazy and left.
Im not totally against phych drugs but thats what drs immediately put her on because they dont know whats wrong. Frustrating!!!!! 
Ty so much. I know we will get thru but being in the storm is always rough

I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances.
I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness).
While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind.
Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing.
Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child).
(((Hugs)))

My heart breaks for you and your family.  Since your DD’s onset is recent, there should be so much hope...if only the doctor’s weren’t working against you.  
What bloodwork did they run?  Did they check for Mycoplasma Pneumonia?  
We spent years trying to find someone to evaluate our DS for PANDAS/PANS.  Ultimately we used doctors that don’t accept our coverage or any coverage.  

I'm sorry you're having trouble getting a doc to help, it's so frustrating. This board was so helpful to me. Like many kids, my 15 year old daughter was diagnosed with PANS after many years of suffering. She is on a lot of supplements, so it's hard to know which ones are really successful! We use:
Enhansa for inflammation - follow the guidelines for slow introduction, we noticed a big herx as is said might happen. For anxiety, we use CDB oil and Lithium oratate. Her 23 and me showed folate issues, so she takes Methyl Assist. Magnesium Citrate along with Buffered Vitamin C for constipation (as needed, which used to be all the time at the beginning of treatment!) - I can't stress enough the brain/gut connection to think about during treatment. She takes Thera-lac probiotic too And Super Lysine Plus for immunity support. To balance out the stress of so many years of anxiety and poor sleep we use Cortisol Manger, and Seriphos - I think these are at the bottom of the list of what I think has really been helpful though And, she is on the low-FODMAP diet Upon initial diagnoses, her PANS doc put her on Augmentin which was amazing. Came off of it, flared, tried Zithromicin, didn't work, went back on another month of Augementin, came off of it, and stayed well. During flares, unless her bloodwork shows something, we use a month of Naproxen (regular over-the-counter Aleve) - and it works beautifully. So, treating the inflammation seems to be key during flares. I would think also that a too-short supply of antibiotics is not going to help.
Now, my son, who does not have PANS that I know of, but is suddenly dealing with extreme intrusive thoughts and OCD (my daughter's was just EXTREME separation anxiety and EXTREME generalized anxiety) I'm taking what I know about inflammation and scouring this board for help - and trying some things with him:
NAC - an amino acid that has had some documented success helping OCD in larger doses L-Theanine - another amino acid that promotes relaxation and calms the brain and elevates GABA and serotonin I just started him on Enhansa last week. Reason being we just found out that he's allergic to EVERYTHING - grass, trees, weeds, mold, dust, cats, chickens (we have eight), dogs (we have three) guinea pigs (we have two). So he has started allergy shots, but in the meantime I can only think that there is inflammation in him from all of these undetected allergies. His probiotic is called Mood-Super strains - with strains that are geared specifically towards anxiety and depression I just learned about this product yesterday from my sister-in-law. My son's cousin, who has OCD, takes 5-htp (another amino acid) and he says it helps a great deal. She uses the Natrol brand. He does not take any pharma for his OCD/anxiety, and said when he stopped taking the 5-htp he noticed he felt a lot worse, so he now takes it again.
As far as pharma for my daughter for her anxiety, we held out as long as we could, but she became unsafe and jumped out of a moving car. So we eventually we put her on an SSRI - it worked a bit, but never really well, so we switched to another, it also worked a bit but never really well, so we added in another, which, as expected, worked a bit, but never really well. Fast forward to a year after PANS diagnoses, and this truckload of supplement she takes!, she is off of all pharma, she took a class at the local high-school (and I didn't have to sit in the class with her, lol!), she now sleeps over at friends houses, and is enrolled in the Community College for the fall. So while the psych meds helped a bit, they were not the final answer for us.
Sending you good thoughts for your daughter - and lots of good thoughts for you too! Hang in there mom!

Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist?

After suffering with OCD and intrusive thoughts for over 3 1/2 years, we finally were able to get a rheumatologist to prescribe a high dose of Augmentin for 30 days for our DS in 2016. During the 3 1/2 years we tried unsuccessfully to treat his symptoms with pharmaceutical meds.  The doctor let us start the abx before his bloodwork came back, which ultimately showed normal Strep titers.  She said we may continue the abx for the 30 days if we chose to.  He had no response for the first ten days, but on day 11 or so his symptoms began to rapidly improve.  Again, his bloodwork had come back normal.  I think if the infection was too far in the past it doesn’t show up on the bloodwork, although the misfired antibodies continue to attack the brain. The Cunningham Panel is what got the PANS diagnosis for my DS.  
With PANS, there are 3 things to address: the infection, the inflammation and the immune response.  
 

My son had a major flare this past February after a dental cleaning and two teeth falling out/then almost immediately the adult teeth came through.  It lasted several weeks and was the worst episode we had seen since the initial onset.
And my heart goes out to you regarding the intrusive thoughts--they were one of my son's hardest symptoms.  He would sob in the middle of doing something or talking to us because they were tormenting him.  Night time was the worst.  He was so miserable and it took a long, long time for him to share some of the thoughts--basically he was afraid he was going to hurt us.  I just kept reassuring him that there was nothing he could think that would make me or his father love him any less.  And I kept reminding him that these thoughts were not him.  I had him picture a stop sign in his head and then say to himself "I'm having an OCD thought about . . ."  Also, grounding himself in the physical world helped. Tapping his feet slowly and calmly in a rhythm or focusing on three blue things he could see in the room and three things he could hear and three things he could feel with his hands--basically having him use his 5 senses to reground himself in the physical world instead of feeling trapped in his head. 
It is overwhelming--but you will start to find methods that help her.

I know.  It is so overwhelming.  Let me know if you start the Oil of Oregano.  If I recall we saw an improvement within a week with a high dose of Oil of Wild Oregano.  

My DS’s first major sudden onset of OCD at age 8, happened within 48 hours of dental work.  The conventional psychiatrist he first saw said it was possibly triggered by the Nitrous Oxide.  Apparently it can deplete vitamin B6 or B12 (can’t remember which). She threw that theory out the window after his labs showed no B Vitamin deficiencies.  
Years later, another PANDAS mom informed me that dental work is a common trigger for PANS/PANDAS.  It can unleash hidden bacteria.  Now my DS starts an antibiotic a few days before dental appointment (even cleaning), and continues for 2 weeks after appointment.  
I’ve been skipping the fluoride treatments for him.  The dentist disagrees, but I don’t want to take any chances.  

I watched a documentary this winter called "Healing From Vaccines" .  It was available online for free while running but you might be able to get it still.  That gave me the final push to do homeopathy.
I believe my DD's problems are vaccine related too although I cannot prove it.  Her issues were executive function related, which are very painful for a bright kid like she is.  And she did have intrusive thoughts at one point too....
I have stopped vaccinating about 7 years ago, although I was coerced into giving the MMR due to the outbreak in NYC. And YES I have seen reactions.  And now we have lost the religious exemption here.....   I will not put my younger kids at risk; looking at my options.
I would advise you to stay away from ALL vaccines for your entire family. Perhaps have this reaction reported to VAERS, or at least put into her file.  Risk of a flu or even measles is just not worth what we are going through.
To quote, "It takes a of a lot of money to get rid of what a free vaccine did".

Are you doing anything anti-inflammatory?  Try ibuprofen 3x a day for a week and see if it helps.  Or try turmeric 2x a day.  If she does even slightly better while inflammation is reduced, it's helpful to know, as it suggests something autoimmune is involved.  Steroid tapers have helped my son several times.  If you can convince a doc to prescribe them for a couple of weeks, that may be something worth pursuing.
So sorry you are going through this.  Sending virtual hugs.
 

We are having good success with homeopathic remedies.  I've been to a homeopath 4 months ago.  She put DD onto a annual program, with the remedies being changed about monthly.  We are currently moving onto month 4, and thankfully seeing good results.  This is not a quick fix though.

I’m so sorry you’re dealing with this—it’s heartbreaking and overwhelming. My now 8 year old son was diagnosed last August—his triggers were strep and myco p. He was on daily antibiotics for months —several different ones and combo ones too—before we started to see improvement. He battled anxiety and OCD—rituals and intrusive thoughts. Has she been tested for myco p? I know you said you’re in TX—maybe a PANDAS doc could do a phone consult with you and order blood tests that your local pediatrician could do? And unfortunately most of the PANDAS specialists don’t take insurance and do cost a fortune!
Oh, and not sure if this really helped or just coincided with him getting better, but cutting out gluten and dairy seemed to make a difference. They both can inflame the body and since PANS/PANDAS is an autoimmune disorder it makes sense. As it was explained to me the problem is two fold—getting rid of the infection and bringing down the inflammation.
Also does she seem to get any relief from Motrin? That can help with inflammation too.
Good luck. You will get through this.

Let me know how the CBD oil works.  There is also a supplement called NAC that we had some success with.  There was a Yale clinical trial for OCD with NAC. You may want to ask her new doctor about it.  The dose for the clinical trial was 900mg 3x a day.  My son stopped taking it a few months ago, because he was tired of taking supplements, but recently said he wants to start it up again.  It’s easy to find...Whole Foods, etc.