For the adults with PANDAS /PANS....

[BeenThere]

If you are o the East Coast are you aware of the relatively new Lyme and Pans Treatment Center in Cohasset MA? I don't know anyone who has gone there but it seems comprehensive and they will work with adults unlike the other major Pandas Centers.  Has your son had comprehensive testing for Lyme and other co-infections?  When we finally got the Igenix testing in Jan '18 I was shocked at how many co-infections my son had.  He was asymptomatic for them.  He had systemic yeast, mycoplasma, babesia, bartonella, and strep titers still at 500 after 12 months on abx - starting at 950, eventually down to 300, now back up again.  He is on 3 abx now (zithro, alinia, keflex), but that has varied over the last 4 months, and many supplements to attack the lyme co-infections.  His blood tests are getting better.  We hope to clear out all infections and get to IVIG and hope for success.  My son was desperate 5 months ago: had to withdraw from school.  He is feeling better today although we still have a long way to go.  I have to say the neuro-psychiatric symptoms for all the above co-infections are pretty much the same as for Pandas/Pans.  We aren't sure whether his symptoms actually derived from Pandas or everything else or a combination.  Also, the die-off caused by treating lyme and babesia is really rough.  He was in a very dark place - we were worried to leave him alone.  He is better enough today to go and take a couple of classes at school and try to get his life back.  He is still treating the Lyme and prophylactic abx for strep.  He follows a pretty strict diet for Lyme and candida - mainly paleo. We think this has contributed to his ability to eradiicate the yeast and reduce the lyme.  He still has babesia IGM at 40 so still work to do.  

I would get the tests for co-infections.  Either rule them out or start working to eradicate them as they are immune-suppressors or can be Pans triggers - as I understand it.

Edited June 26, 2018 by beenthere
added detail

[bobh]

On ‎6‎/‎25‎/‎2018 at 12:27 PM, msmom said:

He had sinus infections constantly as a child. Still does

msmom, I would pull that thread, as to what can be done about those sinuses.  I am not familiar with the options, but because it involves biofilm, I would think that abx may not completely eliminate an infection there.

[MsMom]

5 hours ago, bobh said:

msmom, I would pull that thread, as to what can be done about those sinuses.  I am not familiar with the options, but because it involves biofilm, I would think that abx may not completely eliminate an infection there.

bobh, I am all ears.  What do you think the next steps for the sinus infections would be?  My son is hesitant to get IVIG because of the terrible reaction my daughter had to it.  My daughter recently had her tonsils out, so my son is kind of open to that.  My daughter had horrendous pain after the tonsillectomy though, which isn't uncommon, but still was awful. (She was 24.) Son is 27.

[BeenThere]

MSmom, my son had tonsils out last December at 22 and fared pretty well.  Extreme pain for 1 day but pretty much fine by 8-9 days.  He used a humidifier at night so did not dry out.  He only had to take the strong painkillers one day then just motrin and aleve.  Slept with head elevated to allow drainage and reduce swelling in throat.  Best part though is that he started sleeping through the night, could breathe through his nose and not wake up with congestion.  He had always sounded like he had sinus congestion and that all cleared out.  I have to think if your son is prone to sinus infections, getting tonsils out could help.

[bobh]

Yes, tonsillectomy (and possibly adendoids) is one step.  I once tabulated tonsillectomy experiences here from this forum, and concluded that those that seemed to do best had abx both before and after the operation.

Some sinus infections are also only cleared with surgery, is that true?  As I say, I haven't researched this one, but I thought I have heard of sinus surgery for the purpose of removing infections that otherwise don't budge.

[StrenthandSunshine]

30 yo PANDAS survivor here. I’ve been working towards recovery for 24 years. AMA. Hopefully I can be of some help. Still looking for answers myself.

[BeenThere]

@strenthandsunshin.  I will say that, hearing you are still working toward recovery after 30 years, well it kind of took my breath away.  I keep hoping that it is possible to get to a long-lasting cure or remission.  Are you strictly PANS - PANDAS or lyme and co-infections.  What has been and is your experience and treatments?

Thanks for sharing....

Edited September 29, 2018 by beenthere
misspelling

[BeenThere]

Also, to this forum I wanted to update my son's progress since June:

--He was able to go back to college and very successfully complete 2 summer school courses.  This was pivotal as he had been worried that he was losing cognitive function and possibly experiencing permanent cognitive decline.  His coursework was very advanced, requiring a lot of reading and practice sets.  He pulled As in both classes.

--we continue to test and treat for lyme and co-infections.  So far he tests to have eradicated mycoplasma, erlichiosis, rhichettosis.  Still has babesia at 40, tested positive for bartonella (Galaxy) but then DNA not present, so conflicting result.  Dr. says DNA must be present to be positive result.

--ASO and D-nase B titers still high - maybe exposure but not active infection.  All other tests looked much improved.

So exactly 4 weeks ago we did a two day regimen of high dose IVIG, 1.55/2Kg.  Son experienced extreme headache for a day and a half and then dull headache for another 2-3 days.  He had been pre-treated with iv drip and solemodral (sp?)and also had prednisone for headache.

Now we are waiting for any reaction, improvement, change.  It seems like things are better, definitely more stable, than last January when he left school, and even better than when he went to summer school.  Son is functioning. He has a consulting job, is working out every day, has full cognitive function.  If you spoke with him you would not suspect there is anything wrong.  He is a good actor.

He still feels somewhat depressed and/or apathetic.  He still feels social anxiety and therefore has no social life, can't even see best friends. Even a text from them makes him anxious. He only goes to work, to the gym, and sees me and his dad.  He is not happy.

For anyone with experience with IVIG:  when might he notice a change in emotional state?  When should we consider another round of IVIG?Is there something else we should consider or try?

I feel pleased that he is able to function, but it's not a happy life, not even close to what it would be without PANDAS.  

Thanks for any insight............

Edited September 29, 2018 by beenthere
added...

[tj21]

1 hour ago, beenthere said:

For anyone with experience with IVIG:  when might he notice a change in emotional state?  When should we consider another round of IVIG?Is there something else we should consider or try?

 

Hi - Sorry, though sounds like there's some progress. DS19 is scheduled for HD IVIg every 3 months. We had to postpone the latest b/c he was sick. When he went in sick to his last one, he was flaring badly and continued to for about a month post-IVIg. Then we had a significant turn-around at the one month mark - reduced vocal tics/screaming, much less anxiety, lower OCD, and overall happier (partly b/c he felt so much better!). He's due for the next HD IVIg in 2 weeks. Fingers crossed.

[BeenThere]

@tj21 Thanks for sharing your experience. The experience of helping an adult child is so challenging. 

I neglected to mention that my son experienced a flare starting 2 1/2 weeks after IVIG and it lasted about a week.  It consisted of apathy / depression, in addition to the social anxiety.  However, even during the flare he continued to go to work, work out, read.  He is living 3 hours away so I came to stay with him.  He seems better now, but still isolated and socially anxious.

Is your plan of IVIG every 3 months due to Immune Deficiency or PANDAS specifically?     Are you dealing with co-infections or lyme as well?                                                                 Have you considered anything else - plasmapheresis?  rituxamab (sp?)? 

We are not expecting to regularly have IVIG - although we are not against another round if needed.  Insurance does not cover, so we want to be sure it will be at least somewhat effective. Overall, do you think IVIG is having positive results? 

[tj21]

@beenthere - hi again. My understanding is that sometimes IVIg can trigger an immune response or flare, depending on how dysfunctional the immune system already is. 

PANDAS specifically even though it was approved under hypogammaglobulanemia. No co-infections and trying to avoid plasmapharesis and rituxamab. Still on Augmentin 500mg./daily prophylactic (was on 1000mg/daily for 4 years).

[BeenThere]

It has been 7 weeks since 2 days of HD IVIG and there has been no perceptible change, I am very saddened to say.  I am surprised as DS health has never been better - gut health good, no strep or colds since Dec when tonsils removed, gluten free, sugar-free, dairy free diet.  Strong pro-biotics and de-tox.  But he is feeling the same - very socially anxious and isolated with depression that waxes and wanes but never goes away.  Dr. says it's early after IVIG but I read about kids who respond in 2-4 weeks, at least have some improvement. We are running a huge panel of tests again to check for infections but he has killed off all except babesia duncani at 40 - but he has no symptoms at all for lyme. 

Has anyone had this experience?  How long did you wait to try something else?  Did you do another IVIG.  I have heard that in some cases it can take 3 or 4 IVIGs to see a change.

[MaryAngela]

We did not see dramatic improvement for my DS 14, until he was put on the encephalitis protocol for IVIG, which is monthly HD.  He has had 5 so far. This was started after limited success with weekly LD IVIG. He has shown lasting improvement with each treatment.  Tics gone, OCD 90% gone.  He still has anxiety, focus issues and sound sensitivity.  We are hoping for some relief from those symptoms with future treatments.  

[BeenThere]

Hi Maryangela,

My DS' official diagnosis is autoimmune encephalitis with PANDAS.  His Dr has always said one round of IVIG should take care of it., although she originally requested 4 rounds of IVIG over 4 months.  Insurance co said NO - because he was also diagnosed with Pandas.  Were you able to get insurance cover with the encephalitis protocol?  Is your monthly HD IVIG projected to continue indefinitely?

 

[MaryAngela]

@beenthere

My son also has a PANDAS/PANS diagnosis, but MD submitted IVIG request under AE.  We paid out of pocket for one HD IVIG 18 months ago, because insurance denied.  Current MD was able to get approval though.  Initially denied, but ultimately approved.  MD uses BriovaRx infusion service.  They handle to appeal process.  DS was most recently approved for monthly HD until the end of 2018 (7 HD treatments). This did involve a peer-to-peer call with insurance.  MD said he may request more if there is regression after treatments end.  Although not diagnosed until 2016, DS has been dealing with this since at least 14 months of age, when he stopped eating solid food following a virus. It seems the one-treatment IVIG protocol works when the child is diagnosed and treated right away.  We recently added SBI Protect (Bovine IgG). I’ll let you know how that goes. It’s been less than a week, and I think it takes 8 weeks to see improvement.  I’ve heard other parents describe similar products as IVIG in a capsule.  

I hope your son sees some relief soon. My DS was severe. He was completely debilitated.  I thought this day would never come, but he’s doing great.  I wish the same for you.