wisdom_seeker

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.

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.

Has anyone done CellTrend testing for auto-antibodies?  This test was developed for POTS and ME/CFS,  but surprisingly my son tested high positive for over half the 11 auto-antibodies in the panel. 
I'm treating this as very meaningful for likely AE.  But would our insurance agree and pay for IVIG or PEX, based on a research test from Germany?

Still it's enough for us to want to get serious about getting evidence to justify IVIG or PEX  (both to us, DS20 himself, and insurance companies). 
However, years ago we'd spent $$$ for the Cunningham panel and insurance completely discounted that.  So I'd like to know what other autoantibodies DS has, but I'd also like it to be meaningful to insurance companies.   
What have you found useful?
Candidates I know are:
Vibrant Wellness' Neural Zoomer Plus Moleculera labs' Cunningham Panel   (much better for PANDAS than PANS) Cyrex Labs CellTrend' GmBH's CellTrend Mayo Clinic's ENS2 Labcorps Quest The only ones that are FDA-certified (?) and reimbursable in the US (as opposed to "research tests") are the last three -- the Mayo clinic's  classical autoantibody panel (largely for cancer) and the very limited ones from Labcorps and Quest 
I care about getting info that's useful to us and to insurance companies.  So if one of the first 4 was useful for anyone appealing for IVIG rejection, I'd love to hear that.

1 Psychologist in Michigan:

MICHIGAN

Dr. David Wartel
Psychologist (specializes in CBT)
248-626-1330
West Bloomfield, MI




Several docs in Ohio:

OHIO

Dr. Cheryl Leuthaesuer
Integrative Wellcare
216-696-2320
Richfield, OH

Dr. Ali Carine
Integrative Pediatrics
614-459-4200
Upper Arlington, OH

*Dr. Allen Lewis (Leading PANDAS Physician)
Integrative Pediatrician
614-245-4750
Gahanna, OH
will treat more complicated cases involving PANDAS and Autism

Dr. Jan Kriwinsky
Pediatrician
216-831-7337
Beachwood , OH

http://pandasnetwork...iders/#MICHIGAN

It doesn't actually say that all of these kids remained symptom free. I only skimmed, but one shows a kid who kept getting strep with re-emergence of symptoms each time (patient E). After IVIG, at every new strep infection the ocd returned and the child went on on a treatment dose of augmentin for up to a month. It looks like the kid was on prophylactic antibiotics, too but was getting new strep infections/symptom re-emergence anyway. That's not to say that the IVIGs weren't beneficial or positive. But I wouldn't call this 100% symptom free since the child obviously still has PANDAS and continues to become symptomatic sporadically even while continuing on daily antibiotics.

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.  

Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. ..
The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.)
We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up.
Hope I helped or at least gave hope. Good luck. 

Thanks so much for the offer of help. I hadn't thought of mold and our old house had mold in their rooms (we moved 2 months ago). If you could send me the links to that information I would so appreciate it.
 
My younger daughter had been test d for Lyme but it was negative. She had a condition that included low fevers, stomach pain, headaches, light sensitivity, and pain in her legs, so much so that she couldn't walk for over 14 months. Every 6 weeks or so something else would go wrong and it was truly awful. Especially because no one could/would help her. They just said it's not_____, and then I'd get a referral to the next doctor. Hence me totally ingoring my older daughter's beginning problems.
 
The mold question gives me another avenue to pursue. Thanks

Are you located in Houston? I ask because I saw you mention Katy and I live in Houston. I have a 22-year-old daughter with PANDAS. It took me 12 years to get her diagnosed. Have you heard of the Cunningham Panel? Look it up on google. That’s how we finally got a diagnosis. 

So sorry to hear all this!
Have you tried https://www.amyjoysmithnp.com/ ? She just moved to a practice in Orange, CA and has worked with DS19 for about 5 yrs. to 'bring him back' to a better baseline.

Oh this is so helpful! I will definitely be doing this tonight. Thank you!
 

I'm not sure how to ask "what would be approved?", and get any info beyond what is listed in their IG clinical guideline document. That doesn't even list anti-NDMAR encephalitis -- so it's so out of date.
 
But you're right; if it were a change in rationale, it wouldn't sound forthright. If I were to pursue the deficiency angle, I think I'd want to expand the argument and state what is the truth, i.e., that we're dealing with two problems.
 
However ....The low dose and high dose seem to have opposite effects -- the low dose is immune-stimulatory, and the high dose immune-regulatory. So I'd be wary of making things worse by giving DS the immune-stimulatory dose.
 
But... what if insurance were to approve say 500mg/kg IVIG product for the IgG deficiency, and my doctor prescribed 1.5 g/kg, would insurance pay for the administration and 1/3 of the Ig product, or nothing?
 
I think I've read of someone on this site whose kid had had LD 2x, which didn't help, then the third time the MD prescribed HD and it did help a lot. So i hope the answer is the former.

When I first read Cara's post I thought a grain of rice? I'm giving that and maybe it's too little?!
 
Yes, a rice grain is equivalent to 25 drops and RSHO is much more concentrated. I just switched DS16 last week and I think it works better. The paste is also less messy than the CBD oil that always seemed to get everywhere. I noticed less catatonic OCD moments in the morning and no wet dream type situations, since last week.
 
Still having trouble with OCD in the morning, but after calming down, maybe we're doing better than we think.
 
T. Anna

We tried CBD for DS16 last March 30. I put 25 drops of bluebird botanicals (CBD hemp Oil) into a capsule and gave it with the AM and PM pills. We didn't see anything until April 2 (2 days later) when he had a HUGE break through and started to really improve. Since then we recently switched to RSHO gold from HempMedX to see if it would help get us a bit further along (DS still struggles with OCD). We haven't noticed much improvement except it's much neater and maybe a little more helpful. We are using the length of the capsule. Since it's digested we started higher.
 
We printed the FAQ from bluebird and discussed it. He does refer to it as his marijuana pill, but knows it's completely legal. I tried to get him to use the e-cigarette that they recommend on bluebirds but that was too much.
 
Weight: interesting about appetite. Can you post the link to the article? DS16 definitely eats less nowadays (he has restrictive food issues).
 
T.Anna

Can we start a Babesia subgroup????
Our DS is in the 3rd month of Babs treatment and going for IVIG tomorrow as his encephalitis is bad (CAMKII was 231%). He is on mepron and clindamycin, plus glutathione and probiotics.
 
Sirena

Most people would tell you to do your homework (as you're doing) and then trust your gut and your experiences as to whether Lyme is your culprit and whether you should continue down that path. Labcorp is among the least reliable when it comes to results - at least from what I've gathered in my years of Lyme research. But if you've done the protocols - rotating abx, combo abx, etc - and haven't seen results, then I can understand your reservations about cross-reactivity.
 
But here's my take away - these tests are showing an immune reaction to some sort of infection. And you have enough of a clinical picture to believe that some sort of infection is triggering neurological and psychiatric symptoms. So if not lyme, if treatment for strep and myco haven't brought you sustainable gains - then what's the trigger. And that may be a really hard quest.
 
I can't tell you if you should stay the course or not. I can only share one word of caution/encouragement. Most people on this forum know me from my years of advocating for my son. My daughter was always, in my mind, borderline Pans and was more of a mold story. Then, last year, she became seriously ill, but with symptoms that went beyond my understanding of Pans. It included enormous sensory issues, an inability to wear clothing due to "neuropathy" for lack of a better word, hearing and taste disorders, and a temporary inability to walk accompanied by elevated ANA. A short course of antibiotics helped her walk, but did nothing for her other symptoms. Herbal antibiotics kept issues manageable but didn't seem to make a dent in the overall picture. A 5 day course of prednisone did't make a dent. So after months of looking for that needle in a haystack, we stopped everything and started treating DD's issues as perhaps "garden variety" mental health issues. Well, the s**t hit the fan and DD fell off a cliff. What I thought were ineffective treatments (e.g. the herbal antibiotics) were actually the only thing that was keeping my DD from going totally insane. When she did fall off the cliff, she developed severe anorexia, panic attacks and became a basket case - and it all happened in the blink of an eye. Faced with hospitalization and a feeding tube, we were able to get combo abx, a month-long steroid taper and a team of medical, therapeutic and school staff all on board without the usual skepticism. The turn around was thankfully miraculous, though the healing will take a long time.
 
So my only caution is to not throw the baby out with the bath water. You may not have gotten the breakthrough you're seeking, but the things you have on board may be doing more than you think. It's discouraging to not know what infection you're trying to treat. It can make you question your course. But don't quit before the miracle. Those labs are showing something. Keep fighting for your child.
 
I hope you see good things from IVIG - good luck!

I didn't go to the conference, but will throw in my two cents. From what I have read, 4 days is an older, relatively standard way of infusing high-dose (2 g/kg) IVIg in other, non-PANDAS conditions. I might guess that it is easier for side effects than a two-day infusion. If you saw good results, I'm not sure that the 4-day protocol would be related to the return of symptoms with subsequent infection.
 
FWIW, it seems to me from reading forums like this one that one-and-done IVIg for PANDAs is the exception rather than the rule. One-and-done is probably wishful thinking on the part of certain docs.

I just started taking CBD oil yesterday for my PANS. The main symptom I am looking to improve is my severe anxiety and panic, and I'm hoping it may help with pain as I have endometriosis and ovarian cysts and I get a lot of back pain, joint pain, which could also be from PANS as well. I have been having a rough time this year and have been sick very much even when I was still on Augmentin. I tried an antiviral and had a horrible reaction and so we decided to try the CBD oil.
 
I am 24, weigh 170lbs or so, and I have started out with 2 squirts (which is 1mg) 6x a day. Which is only 6mg a day. I am wondering if I should try more. However, last night, after all of my doses I felt slightly hypomanic in a way. I had so much energy and was able to have a break from the intrusive obsessive thoughts and constant anxiety and I did a bunch of chores and did my homework early. When my boyfriend got home he was surprised to see how much better I was feeling. I didn't even think about it until today, but maybe the CBD oil is helping. I am quite sensitive to all medications and substances, and have had adverse reactions to smoking marijuana in the past actually, so I know starting slow will be best but I'm having a lot of hope for this product right now. I will do anything to get some relief from this anxiety that is ruining my life.
 
I'm thinking of working up to 12mg a day, then maybe 16.

We used it for 6-8 months and it had great effects the entire time. We stopped as a trial to see how she would do now that her viral numbers are dropping and behaviour has improved drastically. She is doing really well now even without it.
 
We used it for anxiety, ocd, bouts of "upsets" (which I gave an extra dose for), and it is antiviral and anti-inflammatory. We started with Bluebird and switched to Cibdex without noticing a difference. I gave kiddo the Cibdex CBD oil 500mg in 60ml and gave 2 squirts under the tongue and had her hold it for a minute. We mixed the natural flavor and the peppermint flavor 1:1 to get a more neutral flavor that was not offensive. Kiddo tolerated, but did not like, the natural flavor. The peppermint full strength was too strong (like trying to hold a tic tac under your tongue for 60 seconds). The mix was the winner.
 
I caught it "on sale" (HAHA) on amazon for 99.00 a bottle both times I bought it. Otherwise it was 160.00 a bottle, but I have not looked lately.

We use hemp CBD oil since cannabis oil would be illegal in my state. I have heard cannabis oil helps differently but similarly to Hemp CBD oil. Both have CBD in them, but hemp CBD oil lacks the THC (psychoactive component) that cannabis oil has.
 
We use Cibdex (500mg per 2 oz). It is "on sale" on Amazon right now. Rather than 160.00 it is 97.00 for the vanilla, 110.00 for the natural, and right at 90.00 for the peppermint. I just re-ordered about an hour ago since kiddo is in a mild flare. We had stopped using it for a while, but now seems like a good time to restart to cut down on some of her anxiety. It still seems to help a lot for her. I ordered the vanilla flavor this time. The peppermint was too strong, and the natural was unpleasant, but kiddo preferred it to the peppermint. I will see how the vanilla goes .
 
It does seem to help with "the upsets" which seem to be anxiety related around here. She gets very emotional and her vocal tic rares its nasty head. This seems to tame that down or relieve it all together. My other choice to alleviate the upsets is klonopin, and while that is cheaper, it is not my first choice for many reasons. It is more sedating, and the scripts are somewhat hard to get. I do not want to use it enough such that it becomes impossible to get.
 
Everything else helps, but is not a magic bullet like these two seem to be. Valarian, benadryl, japanese knotweed, kudzu, iburpofen and true calm all help to varying degrees, but do not alleviate the symptoms completely like CBD and klonopin do most the time.

Depends on the flavor. The natural tastes kinda grassy, the peppermint tastes like a very strong tic tac, the vanilla is strong vanilla. I mixed part of a vanilla and peppermint and that worked out best. Just as they are, kiddo prefers the natural probably because it is not as strong, but she also does not have taste sensory issues.

I went. Would have loved to meet up with other Latitudes parents!
 
What did you think? About the different IVIG protocols, Amy Smith's talk (I was impressed!!), behavioral treatment advice, etc.?

Thanks. I didn't try this one, but we'll see his doctor next week and I'll ask.
In the meanwhile she said to hold off on the Alinia and increase probiotics, and that took care of the stomach issues immediately.
 
WS

Not in Maine - southern New England. Glad to hear he had a better day yesterday. Is he still on the minocycline?
 
FWIW, my DD started a new nasal spray on Friday for her Marcons - vancomycin + itraconozole + edta. Saw an increase in flu-like pain, muscle pain, stuffiness yesterday. Saw big increase in OCD and anxiety today. So back to motrin every 6 hrs, and re-scheduled our day to remove things that are stress triggers. That seemed to help. Pretty sure it's herxing related. It does muck things up for school, to be sure. Makes getting thru the day, doing well on exams, so much harder. But I know from seeing my Lyme son go thru this for 2+ yrs, it's like a hurricane. The sun comes out afterward, and after the damage is cleared, there's rebuilding and she'll hopefully be in a better place.
 
DS went from being a year behind academically to several years ahead. I went from having to help him thru every aspect of homework, had to read to him because he couldn't read and retain at the same time, had to heavily tutor and coach him for 5 yrs. Now, 3 years into recovery, all I have to do is nag him to get off the computer and do his homework. I have no involvement in the actual academics whatsoever and he's an honors student (9th grade). But to get to this point took enormous work and many set backs. So don't lose hope. They can get better.
 
Do keep me posted. I can totally relate to the insanity you're living and the stress and pain you're feeling. You're not alone.

I think this is an excellent summary within the bigger picture of AE. Includes interesting discussion of the function of CamKII and the rest of the Cunningham panel. See pp. 54-65.
 
Autoimmune encephalitis History & current knowledge Short compendium Version 5.8, April 2016
By Finn E. Somnier, M.D., D.Sc. (Med.), copyright ® Department of Autoimmunology and Biomarkers, Statens Serum Institut, Copenhagen, Denmark Adding, I see that pandasnetwork.org already has a related article from 2013: http://pandasnetwork.org/wp-content/uploads/2013/07/Dopamine-related_autoimmune_encephalitis.pdf