Pamela Hughes – 19 yo male, H/O Pandas, Severe OCD

[William Seeds, MD]

A great question from @pamelahughesdogmail-com

Briefy first case: 19 yo male, h/o Pandas, Severe OCD, Strep is clear. Relapses of OCD, right now we have the OCD in check.. but.. He has + Lyme, Bartonella, Babesia, Significant EBV reactivation, heavy Mold with Ochratoxin and mixed molds and mild candida. Not joking. I am currently treating him for mold and candida slowly, Success with nose bleeds, and some other symptoms.

He has severe Fatigue, somnolence. He was Dx with REM sleep disorder (gets into REM too fast and stays in too long). So never feels rested.

I want to Try peptides beyond BPC 157 (he is on that now for GI protection).

DSIP at this point is what I want to get, would you add Epithalon? would you use TB4 and TA1 at this point knowing his immune system is completely TH1 pushed and trying to fight/kill off these bugs, would it be wise to try to help the balance to get some TH2 healing benefit?

Epithalon? with this?

@kerenkang

[William Seeds, MD]

@pamelahughesdogmail-com another great question!

here is another video reply from Dr. Seeds!

https://neomarkgroup.wistia.com/medias/h00tmuv1z7

Keep us posted on this case doc!

[Pamela Hughes]

Dr. Seeds, Thanks,

I will tell you,  this is my full time job, caring for one family and a few of their close relatives/friends..  The man who hired me, its his son and brother in law.. That said,  cost is no issue at all.  Please make recommendations based on best therapies regardless of any cost.

I am watching the Basic course now, did the Mastermind 1 course,  also trying to master clearmind neurofeedback machine/treatments as well,  so getting there,  I will be at the mastermind 2 course digitally as well.

Thank you for your time and I hope you made your flight!!  Talk soon,

Pam (aka Dr. Hughes)

 

 

[tim blend]

Dr Hughes and others; another PANDAS case

H/O PANDAS with symptoms c/w with above some of which continue i.e. anxiety OCD, depression, hallucinations,S.I. with no attempt except a cutting episode.

Diagnosed age 9 but significant symptoms starting at age 7, had various and multiple strep infections x 6 documented with a T&A including pneumococcal Pn with Ab’s and mycoplasma .

Normal childhood vaccinations except Hep B given when she was young and got 1 of the 3 too soon, no recent vaccinations.

Has seen many specialists (PANDAS related) over the years including MGH pediatric neurology-psych, Tufts pediatric unit, integrative physician Dr Bock in New York and finally Dartmouth clinic with multiple lab evaluations including but not limited to EEG, MRI, autoimmune titers, encephalitis titers CSF and serum, Lyme and co-infections with borderline positive for Babesiosis. Also had Cunningham panel and had positive Ab to DRD1 and DRD1L receptors.

Multiple courses of antibiotics, steroids, vitamin and mineral supplements along with various psychotropic meds some of which resulted in transient improvement. Given IVIG with improvement from 2022-2023, but eventually did not last very long.

Fluoxetine helped for a while.

Hormones and cortisol and NT evaluation past and recent. Previously showed all low to low normal amino acids and B’s,C vitamins and low copper, some of which had been replaced with oral supplementation.

Patient with PMS symptoms associated with anxiety, depression and probably PTSD.

Low Pg on testing, may benefit from progesterone replacement.

sleep: generally good but unsure of REM sleep

energy: low energy

exercise: does play soccer but gets tired easily

weight stable 100lbs 5’3″

Any success with your current regimen if so please let me  k now.

thanks

Tim Blend

 

[Cynthia Keller]

Hello Tim, responding about your PANDAS (+) patient question:

I have treated over 200 patients (since the early 2000’s) with PANDAS/PANS, and got to work with the “greats” who helped champion an understanding of PANDAS during those early times where no one else believed us.  I shared cases with Dr Latimer and went to Georgetown to care for a patient together, spoke with Dr Swedo’s team, and sent countless samples to Dr Cunningham’s lab at the University of Oklahoma while she was doing research that would later become the Cunningham Panel.

In the need to be brief, I would like to just highlight to a few things you mentioned in your case:

-First, there are several reasonable causes for OCD in your patient….one is PANDAS, but also neurological tick-borne-disease (TBD) absolutely can do this, as could PTSD (from having had PANDAS).  And of course there could be an underlying predisposition to OCD (just how they were born)..

It will be very important to figure out what cause/form of OCD this is… since the treatment would be way different (Maybe antibiotics/Steroids for PANDAS, but these same steroids would make most of my patients with TBD worse.  And while SSRI might be first line treatment for “regular” OCD, it will absolutely fire up and worsen an acutely inflamed brain of someone with active PANDAS).

-How to tell the cause (so that you know how to treat)?

  Find out the story of what the ACTIVE CURRENT symptoms are.

It sounds like your patient has had excellent care.  And so here I am asking about the “story” of the current symptoms.

I added here some of a posting I made on a list-serve I belong to for the AAP (integrative medicine subgroup) in 2017 in case some of what I had to say there in response to another case could be helpful for you to hear (esp since I do not have enough time to type too much more here).

***********

My prior posting to AAP list-serve.

I have treated more than 170 kids with PANDAS over the last 8 – 10 years or so.

I will start first with some background about my experience with PANDAS.

 

1) I would ask first:

a) if she had had an illness prior to the onset of symptoms- especially maybe 7-10 days prior (as it takes about 7 days for the body to notice the Strep and treat it on its own.  In fact, the body will usually treat and resolve Strep without antibiotics, and the REAL reason that we all learned to treat Strep is to prevent this antibody production so as to decrease the risk of rheumatic heart disease)

b) Was the change in behavior sudden (like overnight)?

c)Is the anxiety/OCD irrational? This is, for me, the best telling sign.  An example I’ve seen would be .. a sweet 13 year old girl who goes to a catholic school suddenly having obsessions about violent things that she could do to other people’s genitalia, and her compulsion is to tell her mother about it?  Or is a 14 year old boy who loves playing basketball suddenly afraid of dying if he sees or touches a basketball?  I also had an 8 year old who suddenly became totally obsessed with knowing everything about Judy Garland.

I like to explain it this way:

If I had 4 cats run over by buses… I could have a RATIONAL fear of buses.  For this, I could go to therapy and work through my fears, and by extinction therapy finally get on a bus again.

However, if I had not had cats meeting their demise by said buses, and I was walking down the road, and some antibodies attacked my brain…. I could have a sudden IRRATIONAL deathly fear of buses.  For this, therapy would only be able to help me cope with the stress of feeling this way, I could not work through this fear since it is irrational.

Make sense?

2)As far as labs go, I like it when a throat swab, or a serum lab is positive… as this helps me believe that I might be thinking the correct possible diagnosis.  However, as we discussed above, the throat swabs likely won’t be positive after 7 days…and the serum labs are not in my experience related to how severe of an infection the child had.  (So for this reason I don’t follow these serum labs once I have the diagnosis -I use clinical stories after initial diagnosis).  I find that a positive is indicative that this may be PANDAS, but a negative doesn’t mean that it isn’t PANDAS.

3)Treatment for me is simple if you use this over-riding thought process:

a)Get the strep out of the child

(of course treat the current infection, and if recurrent, then discussion of removal of the tonsils is warranted.  I should also note briefly here, that I do get positive swabs from the gums at times – representing I believe oral colonization..  In this case I use a course of chlorhexidine to rinse and spit for a few weeks or a silver tooth paste that I have found effective to eradicate this.)

b)Get the strep out of the family, EVERY member.  Here I am especially looking for asymptomatic carriage in tonsils or gums (testing by throat culture and gum rapid test.)  My goal here is to decrease the risk of repeated exposure.  I think that not thinking of this is the leading cause of chronic PANDAS, since repeated exposure causes continual antibody production in the child, therefore continued PANDAS symptoms.  Also, do not forget to think about best friends and the like, if all family members are “clean”.

c)Lastly, we need to get the child’s immune system to calm down. 

In my experience, if you do nothing in this arena, but you DO take care of stopping the repeated exposure…. then there is a gentle decline in symptoms over the next 3 months.  The MUST here, is to stop repeated exposure.

When I want to help confirm the diagnosis of PANDAS, and quickly decrease symptoms I will often do 5 days of prednisone at 15mg BID for 5 days.  I feel “safe” about this dose, since it is what every kid with asthma who ends up in the ER gets (at least)… and they don’t seem to have long term effects due to this.

I find that some kids have 2 days of worsening symptoms before improvement, while some are 50% back to themselves by the next day.  This improvement helps me reassure the parents that their child isn’t crazy, since mental illness is not treated with steroids.  Only inflammation and immune issues are effectively treated with steroids.

If I see an effect here with steroids, I feel confident that I was correct in my diagnosis.

I also use longer term doses of more gentle anti-inflammatories (outside of the scope here).

Side note about IVIG, I hardly EVER have to use this when I follow the above path.

And if I am even considering it – I have to be 100% (100% absolutely sure) that they will not be immediately exposed again.  I do this by having walked long enough with the family to know for sure that the parents (or the child’s own tonsils) are not chronically a source of strep exposure.

I am not sure that most people are clear about why IVIG works for things like PANDAS and other autoimmune disorders.  My understanding and experience is that when the plethora of IgG floods the system it says to the immune system, “I’ve got this, you can rest for awhile”.  In this way, the child stops making its own antibodies for a while.  Think of it as pushing a “reset” button. This is why we use it for things like ITP and Kawasaki Syndrome.  This means that….unless re-exposed to strep… they will stop making antibodies against strep.  This last part, about not being re-exposed to strep is the most important part.  If they get immediately re-exposed by their mother when she kisses the child goodnight, then these antibodies are made again, and the cost, effort and risk of IVIG is for not.

In this way, for me, IVIG is a ONE TIME treatment.  If you hear about a child needing repeated IVIG, they have missed the IMPORTANT step above about evaluating the family.

Like I said, I almost NEVER need IVIG any more, and I have only done 2 courses in the last 3-4 years or so.  I do have to give a shout out here to EVERGREEN HOSPITAL in Kirkland, WA… who even 8 years ago, allowed me to create a protocol for admission for IVIG for these kids.  This was WAY ahead of the curve.  “THANK YOU EVERGREEN”.

(I should note here too, that when IVIG is used for an immune deficiency, its function is different.  Here, the IgG are used for passive immunity, and will need to be resupplied about every month or so).

Lastly in this section, I will speak to plasmapheresis.  With one of my first patients with PANDAS years and years ago, I flew out with the patient to Georgetown and with the help of Dr Beth Latimer, had this procedure done.  Pls note, this requires an ICU stay (or did then), and it is an arduous experience and I wouldn’t do it again.  Unfortunately in this case,  her grandmother flew out to see the family and re-exposed the child.  Since the child was antibody free after the procedure, and she was then exposed to strep, she made TONS of strep antibodies and became much worse than before.  I understand that this is only an “n” of one, and that Dr Latimer and others have good success at times.  I am only sharing my experience.

And so, this leads us to your case:

For her, if the questions I asked above at the beginning show the correct timing to an illness, and were sudden and irrational in substance, I personally would consider a treatment trial of Augmentin (appropriately dosed for size, etc) for 10 days and see what happened.

Of course, you would need to weigh the risk of inappropriate use of antibiotics for 10 days with the risk of missing the chance to help this IF the diagnosis is PANDAS.

If I am going to treat, I also use boswellia, curcumin or Ibuprofen for the same amount of time.

If this works, but not enough…. I consider the 5 days of prednisone, again weighing the risks of treating vs not treating.

Or if, I have a strong suspicion that it IS PANDAS but the antibiotics didn’t help, I consider the steroid trial.

On the other hand, if my suspicion was low and the antibiotic trial didn’t work, I would not usually consider using steroids.  In this case, I would step back and think about other more standard causes and treatment modalities for anxiety and OCD.

********************

This is me again in real-time Tim……

I also recommend that you ask the patient, what is it that most affects her life that she wants help with first.

I say this since a handful of symptoms you mentioned I think are likely not directly related (like PANDAS and PMS, etc).

If you have heard me speak, or have read any of my prior posts, you know that I like to keep things simple (especially with tough and complex cases); and tease things out one issue at time, trying one intervention at a time.

I do this primarily, because … this way, every intervention can be seen (used as) a diagnostic tool as well (try steroids for a few days thinking that it will help PANDAS.  And if it does… then you at least know that there is a component of PANDAS, etc).

So my recommendation for your patient is to ask what is currently causing them the most “lack of joy”.

And then, go after that.

And if OCD is the answer, then I would use my info above to try to sort out “what kind” of OCD (again as discussed above).

The fact that IVIG worked some, but “wore off” makes me think that there was an ongoing strep exposure (at least during the time of IVIG).

Having said that…. again, your patient sounds to have had excellent care… and so it is possible that much of what she suffers from now …. is no longer PANDAS related.

If instead, “fatigue with soccer” and “PMS” are now her biggest symptoms, then the PANDAS dx (etc) is likely throwing you off (and making things seem more complex than it has to be). In this case,  I would tease out about if symptoms have been very long standing (and if she hasn’t had adequate TBD treatment, etc), or if the symptoms were more recent (like post-CoVid, etc). And then, I would do appropriate treatment trials depending on what seems indicated.

*side note here, many of my PANDAS/PANS patients also had TBD.  And in my experience PANDAS needs to be treated first. For the most part, people can keep going day to day with joint pain, fatigue and brain fog, a lot better than they can go on being a school age girl telling their mother hundreds of times a day what horrible things they are thinking of doing to their father’s genitalia (see example above).

I hope that hearing some of my thoughts behind addressing PANDAS in kids might help your thinking in some way.

Warmly,

Cynthia

[tim blend]

Cynthia, thank you for a very helpful review of your PANDAS experience. this child was probably appropriately treated at age 9 and had some reinfections resulting in 3 hospitalizations, 1 of which was bad enough for the parents to take her out AMA. as a result my Integrative psychology wife felt the case was more severe anxiety, OCD and PTSD from her experiences since age nine. Additionally her mother has been”helicopter like”.

As a result my wife thought that Ketamine would be a reasonable choice given her extensive treatment history (we have been using ketamine iv for >5years with great success with carefully selected patients). Low and behold she is on her 6th treatment out of 6 and has been doing extremely well since the first infusion. your experience helped us with the final decision to try ketamine.

thank you for your concern and help

with gratitude

Tim

[Cynthia Keller]

Tim-

 

How exciting.

Your assessment above sounds “right on” to me.  And, of course, you now know that you are correct …… you nailed it, since she is responding to Ketamine as hoped.

 

I also, REALLY REALLY love the responses we get in the appropriate child/teen/and adult with IV ketamine (also done as a 6-8 treatment course.  With an initial re-eval at around 4 sessions… knowing that if there is absolutely ZERO response yet, they likely do not need any more to know that it wasn’t the correct choice).

We have an almost 100% success rate with the above plan IN THE HANDPICKED patients we have sent for this.  Namely, pretty much we only send patients with post-inflammatory medication-resistant depression (post PANDAS, psychiatric Lyme, and CIRS patients, etc).  In all of these patients, we would send them for Ketamine treatment like this only AFTER the infectious/inflammatory issues had already been eliminated and addressed (exactly like you did above).

Note here, just like I mentioned in my last post that I feel that IVIG should only need to be done once, IF you have eliminated this trigger.  The same goes here for a 6-8 treatment course for Ketamine.  If you have handled that initial insult, you likely would not need any more treatments unless retriggered.  For example, if 6 mos later the patient had a mild PANDAS flare after an exposure at school, or if a CIRS patient was briefly in a water-damaged building… then they might need a 1-2 treatment “tune-up” with ketamine again to get back to their “good” baseline.  However, if one is finding that a patient’s Ketamine treatment course doesn’t hold, or they need ongoing treatments, then I suspect that there is a continued insult which is worth going after.

 

Make sense?

 

NICE WORK! That patient is lucky to have you. And, you are lucky to have your wife to whisper in your ear as well.

🙂

[beth panoff]

CYNTHIA,

Thank you so much for this informative post. I am currently dealing with possible pandas situation with my son.

Is it possible to connect by phone with you?

My email is bpanoff1010@gmail.comhank you!

Beth

 

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