Michel12

If you have read my posts before I had IVIG Dec. 4th. I am still not feeling the beneficial effects from it. As far as pandas treatment goes I am on Keflex Minocycline and Celebrex. The minocycline which was the drug that started me on the path to wellness has seemingly lost most of its effect. I do not want to go off it though because I have before and I get much worse and it seems ot have a novel effect on the brain. I am on 200mg though and do not think I cant increase the dose anymore. The keflex we added because of the sore throat before I got my tonsils out and I dont know if it does much. The clebrex or minocin is at 4.5mg and not benefitting my head pain enough. I am looking for medicines to add that will hopefully abate my chronic head pian and agitation like the minocycline did. We tried low dose naltrexone and that made me worse. My next IVIG infusion is Jan 7th and a double dose. I am starting to lose hope about it because it has been almost a month since the first one and not what I expected. I had also been on the augmentin at the saving sammy dose but it did not work as well as the minocycline and we switched back. Any ideas for treatment?

I was just documenting how it was for me so it is the case personally.

From my recent posts you guys know I recieved IVIG. I have some benefit where my muscles are more relaxed and I feel a little calmer. But how long did it take for IVIG to work for you guys. My doctors have kind of skirted around saying 3 weeks or its different for everybody and I'd really like ot know what to look for so for parents of children who had IVIG what did they start to notice?

Cyn I sent you my email and facebook if oyur son wants to to talk to me

I am a patient and I notice this consistently too. Usually when I eat something with alot of bread and carbs or with sugar. It is astounding how much of a player it is on my mood and head pain. It is so hard though to follow gluyten free and dairy free though because I feel such lack of pleasure all the time and am agitated and pych meds make me hungry that I want to eat those foods for the pleasure it will give me. ALthough i always regret it after.

Thank you Thanks I am hopeful to see progress

I shouldnt have eaten the hamburger we got at the food court while I was getting it . My doctor wants me to avoid gluten and dairy it makes me feel naseuated. He also talked about how he went to a conference and they talked about MAst cell activation disorder. I have been diagnosed with POTS and had heard the term before but I get alot of facial flushing and he said this was one of the main symptoms. He said we c ould try something like benedryl and some of the anti-histamines for it. Anyone know about this?

Hello I recently posted a thread about how I was struggling and mentioned I would be recieving IVIG. I recieved it today at my ped's hospital and it went well. Got there at 9.00am where I was first given a saline drip through an IV. The nurses guided me through deep breathing while getting the IV in which was nice. I followed DR. L's protocol on the IG. I am back and feeling ok. A bit of a headache. Just wanted to let you guys know.

I am managing today and I think my mom is going to take me out to see a movie but on Thursday this week we are doing the IVIG so I will update everyone on how i'm feeling after that. I believe they said it would take a couple of weeks to see improvement. Thank you all for posting. I do see a therapist everyweek. But somehow still feel isolated being at home all the time and not knowing alot of other people who are going through this. Thats why I love this website so much. I have gotten some recomendations for some LLMD's before but I think because of cost effectiveness we were staying with our ped who was managing it but we will look into them again definitely.

Thank you. Yes I have been tested for lyme a million times with the western blot and it always came back negative. I'm still on the minocycline now at 200mg but it feels like it lost its affect. The first time I took it I felt warm throughout my body. My muslces felt less tense and my head was calmer. It was the first time I felt good. My doctor says it could have been lyme even though it was always negative. I would love to talk to your daughter I will send you my email. We finally got through today and they said they faxed it to him several times so I hope he got it. My mom usually has to handle a lot but my ped is sill thourough. Yes asides from the PAndas when I was in the hospital I was diagnosed with POTS and so see a pediatrician who specializes in it. The lyme test even with the western blot and I believe along time ago the PCR always came back negative and we did it many many times. IT wasnt until last year though that we found the minocycline worked after trying it. My mom had read brain on fire by sussanah calahan, and that put us on the PAndas trail where we then saw Dr. L. I would love to talk to your son also.

My Pandas symptoms. I feel such activation and agitation in my head. I cant think and am so perseverative. I have such headpain everyday that exacerbates it. I feel no pleasure. Its very hard to explain. We have donme alot of things through the pychiatric route and that really traumatized me because it did not make me feel better or address my symptoms. ANd i yell at my parents about it among my other perseverations. I'm just going insane. IVe had this disease for a decade most ofit undiagnosed. I stay in the house all day because of my chronic fatigue and pain. I just cant wait anymore this is torture. I even have IVIG scheduled for THIS thursday. But i have no idea if its gonna work and Dr. L hasnt even told my doctor the specifications for it. I mean what is this going to do really? What can anything do really? Ive been on all the pychiatric meds ive had ECT. And I feel worse and terrible.

Hello everyone and sorry for the delay, my dad took me out to get out of the house and get some fresh air. Its just so hard dealing with this and feeling like no one understands. Dr. L did diagnose me and I had the high cunningham panel. ITs just that I feel like no one understands me. I drive my parents crazy with this and im in such pain yet no one understands the whole picture. My pychiatrist doesnt understand pandas and my treatment team is not communicating with eachother. ANd I feel I need acute care but everytime I wne to a mental hospital they denied the PAndas and just did what they wanted to do and it didnt help. Dr. L wants to do IVIG but we keep calling her and calling her and she wont set the protocal up with my other doctor. For weeks. I cant talk to my parents because I yell at them. I'm 22 btw. but still see a pediatric doctor

Hi same person. I just need someone to talk to right now if thats ok if anyone can pm me? I'm feeling really suicidal

Hello i'm a Pandas patient in maryland who for a whole freaking decade has been dealing with this illness and ruined my family. I need a doctor now who is going to treat me,. I am not on any medicines right now. The pychiatric medicines dont work and the only thing that did the most benefit was mionocycline and anti-inflammatories. I need an autoimmune doctor who is going to treat me aggresively. Dr. L has not followed up and been of no benefit. I need to see someone NOW. Please I am beegingg you guys recommend me someone who can see me acutely because I cannot tolerate this illnesss any longer

Thanks for responding everyone. I think we might just keep the pychiatrist we have now. He is kind of accepting of Pandas and not really combative about it and as we only need him for meds we might keep him. I'm hoping once I go through my IVIG Dr. L will be able to help perscribe medications.

Hi i'm looking for a pychiatrist who knows something about Pandas and neuroinflammation as a role in mental disorders and how autoimmunity merges with pychiatry. Preferrebly as close to Baltimore as possible.

Pandas is considered as an encepheltitis because encepheltis literally means brain disease. Why don't pychiatrists identify other mental illnesses as encephelitis or diagnose pandas then? You would think if someone was so activated and had such head pian thenb that would be considered...

What symptoms are you needing relief from? Here are some common otc meds used for some common issues: Omega-3s (inflammation) Bio-enhanced curcumin (inflammation/yeast) Ibuprofen (inflammation) Lemon Balm (anxiety/ocd) Some benefit from these prescriptions: Mobic (inflammation) very low dose SSRIs (anxiety/ocd) antivirals (if viruses are involved) anti-fungals (if yeast is involved) Hey thanks for the response. I'm on minocycline and mobic now. My symptoms that are most troublesome are the severe activation and agitation. Also the deppresion and anhedonia flat effect. The anhedonia has not been succesfully treated even after many antideppresents. Im hoping the ivig helps because from the cunningham panel my numbers for D1 receptor was 16000. Im hoping once that is reduced my deppresion will go down because im guessing dopamine plays a vital role in anhedonia. I will look into tghe curcumin and lemon balm. I take fish oil. and i cant take ibuprofen because of the mobic. I also notice eating gluten and dairy upsets my stomach and makes me feel flushed and agitated. But it is so hard fro me to stick to gluten free because the clomipramine im on and risperdal make me want to eat all the time. i also nbeed a rememdy for head pain which i get frequently.

What symptoms are you needing relief from? Here are some common otc meds used for some common issues: Omega-3s (inflammation) Bio-enhanced curcumin (inflammation/yeast) Ibuprofen (inflammation) Lemon Balm (anxiety/ocd) Some benefit from these prescriptions: Mobic (inflammation) very low dose SSRIs (anxiety/ocd) antivirals (if viruses are involved) anti-fungals (if yeast is involved) Hey thanks for the response. I'm on minocycline and mobic now. My symptoms that are most troublesome are the severe activation and agitation. Also the deppresion and anhedonia flat effect. The anhedonia has not been succesfully treated even after many antideppresents. Im hoping the ivig helps because from the cunningham panel my numbers for D1 receptor was 16000. Im hoping once that is reduced my deppresion will go down because im guessing dopamine plays a vital role in anhedonia. I will look into tghe curcumin and lemon balm. I take fish oil. and i cant take ibuprofen because of the mobic.

I'm on the antibiotics for Pandas but they are not providing enough relief for me until I get my IVIG. My cunningham lab results were sky high. What are some medications I would be prescribed by DR. L to augment the antibiotics? I have been on augmentin and 30 day steriod taper but it was not as effective as the current antibiotics im on.

I have noticed the same thing with myself. It feels as if it puts a stopperr on the activation.

Yes I have tried the gluten free but it was too difficult to stay on maybe I will when agitation dies down. Yes the deppresion is still there when I take minocycline and by feel really good I mean better then Ive felt on other treatments but still not near "ideal" No I am not afraid of IVIG and have encouraged my parents to pursue it. I just really hope it works because I feel like ive ran out of options after it.

Ive been diagnosed with PANDAS about 7 months ago by a Dr. L. I also did the cunniungham panel which showed highly likely for PANDAS with very high D1 levels and CaM Kinase !! levels. My symptoms began when I was around 12 though and im now 22. In that time I had tried all sorts of pychiatric medications to no relief, even ECT at 15. The severe anhedonia and deppresion did not pass nor my severe OCD and agitation. The only pych med that seems to help is anafranil to keep me stabilized. I have been on minocycline for about a year and feel really good on it. But it is not enough. Dr. L Tried Augmentin with steriod taper down but that did not benefit me as well as the minocycline. Now she said she wants to take tonsils out and do IVIG. I have high hopes for this because of how good i fg with the oceel on minocycline but I want to be sure it will relieve my deppresion along with the ocd and agitation. I dont find severe anhedonia really talked about with PANDAS but it might be included in emotional lability. Is there a chance this will improve with PANDAS treatment?

I was diagnosed clinically too before the Cunningham. It was kind of so we could have it on paper. Minocycline worked very well for me. But that wasn't prescribed by this doctor. Im hoping the augmentin works the same but im nervous that I did not feel good on the taper down steroid. Also are those results high?

A couple weeks ago I got my results back for the cunningham panel through Doctor L. The results Dopamine D1 titer: 16,000 tublin: 2,000 CaM Kinase II: 192 Other two havent shipped yet. I was perscribed a steriod and augmentin. I did not feel like the steriod helped and i'm not sure about the augmentin yet. My pychiatrist was unsure about the panel basically saying it wasnt s cinece and he had no idea what these number meant. He doesnt think there is enough body of evidence to discern what these numbers mean. Although he said he doesn't know much about PANDAS. Should I call Dr. Cunningham like Dr. L recommended I do? I hope this augmentin works but I don't know how long I will need to see results.