searching_for_help

BTW, I reading back through your posts... It's not your job to call Dr. L to set up protocols for IVIG. Your pediatrician should be the one contacting her. The doc at the hematology center we used had already called Dr. L before we arrived for treatment. He has his own way of doing things, but consulted with Dr. L specifically about the PANDAS issue. All we did was request Dr. L's office to fax the notes from our visit to our current doc, and he took care of calling her. You and your family should not be put in the position of setting anything up. Just give your docs office her number, and request the notes from your visit to be faxed, and let your ped office take care of it. They are supposed to be taking care of YOU!

Michel12, Your feelings right now sound so much like my dd's, except she does not have the physical pain and fatigue. You are both the same age, and she also was misdiagnosed for a long time. She would be willing to message you if you would like. She is going through a hard time now, also, but realizes that some days feel worse and some better. Her intrusive thoughts are the hardest for her. She is truly a lovely person when she feels better, as I'm sure you are, but like you said, is quite difficult for us to deal with when she feels bad. It's like a panic takes over and she can't control herself. Then the guilt feelings are overwhelming. I'm sure we don't always respond as we should, because we are tired, too. (Parents aren't perfect either!) People DO recover from this, even people like you and my dd who have had it for a long time. It's just so darn tricky figuring out what the trigger is, or what might help. Have you been tested for Lyme? I think you mentioned minocycline helping - I think that is used for Lyme. But Lyme is best treated with a combo. Let me know if you would like to message or e-mail with dd. I know she actually feels less alone knowing there are others struggling with the same issues. So many people do not understand. Especially in the psychiatric field, sadly. Humongous hugs to you!

I would also suggest using your patient portal to message Dr. L. We were disappointed with our visit there, but Dr. L has been pretty good about responding to our messages on patient portal. The visit was a disappointment because our dd is an adult and Dr. L was unable to set up the PEX there due to her age. Did she diagnose you? Did she have any suggestions for treatment? My dd is feeling the same as you. She can't do it anymore, and desperately wants this all to end. She just finished plasmapheresis, but is not feeling better yet. We are just trying to help her make it through the days until she starts feeling better, but she said the intrusive thoughts are so intense it is unbearable. What are your PANDAS symptoms like?

Rowingmom, Interesting what you said about pathogens in tissue. The PEX we are doing is actually done every other day for 7 visits, which is different than most PEX procedures. (Ours is technically called therapheresis.) The doc there said they skipped a day in between, so the antibodies that were hiding out in the cells could move back out in to the blood. Obviously, he said it differently than that, but that's what my tired brain picked up on! She's had her 6th out of 7. Not seeing much improvement. More like a yo-yo. Worse at times, but brief periods of a bit better. Way to brief, though!

dgfindley, I've sent you an e-mail. Thank you both for the info. The doc who is overseeing dd's PEX doesn't actually think she has Lyme. He says that PANDAS patients seem to test positive for many things, but it's actually just due to their immune systems being screwed up. I'm not sure what to believe. The positive Lyme result came from Neuroscience's new iSpot test, and I don't know how accurate it is. I know the doc overseeing the PEX (technically called therapheresis) is a mainstream doc who doesn't agree with "chronic Lyme". When I said I don't refer to it as "chronic Lyme", but instead I think of it as "untreated Lyme", he reacted more favorably to that term! He just didn't feel there was a need to be on longterm abx, that a shorter dose would take care of it. I mentioned that our dd tested positive for strep (rapid and cultured) after a 5 day course of penicillin, and then 2 other abx, and the docs at the time couldn't believe it, but it did happen. According to the infectious disease docs- that can't happen. But it did, repeatedly. Either way, he really doesn't think dd has Lyme, but if the PEX doesn't help, I'll certainly consider treating the Lyme more aggressively later on.

Just an update for this post. She did the iSpot through Neuroscience and DID finally test positive for Lyme.

My PANS dd is in the middle of plasma exchange, and we just got a call from her NP that she is positive for Lyme. Wasn't expecting that. Does anyone know if PEX helps with Lyme, or is there any reason it is contraindicated? Any info would be appreciated.

Don't rule out PANDAS... We were told our son has auditory processing disorder, but I found it interesting that a top PANDAS doc, who we took our daughter to, made the comment that he felt our son probably had PANDAS, too. We've been too busy taking care of PANDAS daughter to pursue help for son, but definitely want to look more into that when we can. When he was younger he went through a few periods with shoulder tics, became socially anxious overnight, and does present occasionally with urinary issues when stressed. He has some OCD tendencies, and definitely some sensory issues. Just thought I'd throw that out there, in case you've noticed other symptoms.

Dd is in horrible shape. Took trip to see Dr. L for plasmapheresis. Trip about killed her (and us). Get there and Dr. L says, yes, she has PANDAS and needs PEX asap, and begins setting it up. Dd has physical/mental break and begins stumbling, eyes staring and becoming cross-eyed at times. Weight horribly low and not eating. BMI 13.3. Blood sugar 40. Take her to ER at Georgetown, where we stay for 12 hours with nothing but glucose. Wait for call for pex, only to find out that due to dd's age (she's 22, but had PANDAS misdiagnosed since 9 years old), she can not be seen by the pediatric hematologist that regularly do PEX. Then, to our horror, we find the adult hematologist does not believe there is enough research to justify PEX and PANDAS. Dd is not even given tube feeding while we are there. We pull her out against medical advise, as I know I can get her to eat some at home, but we have a 10 1/2 hour drive to get home. We are left with NOTHING. Even called Swedo's office - they are no help at all. Dd is in horrible condition, but we know that if we put her in the hospital, she will exercise constantly. She can't stop herself. This has happened before, and the hospitals and eating disorder clinics do NOT watch her. If anyone knows of an adult hematologist that is familiar with PANDAS and is willing to do Plasmapheresis, PLEASE let me know. This situation is dire. Also, don't let your kids go untreated, as there is very little help for adults. Dr. K is the only one, but unfortunately, IVIG was not successful for us.

I think we should all print out this page from the Pandas Physician's Network, and take it in to all docs too lazy or arrogant to help our children: https://www.pandasppn.org/committee-members/ When nay-sayers start there BS, we can show them that docs from Harvard, Stanford, Columbia, Yale, etc. are on board because they've taken the time to learn about PANDAS, instead of being lazy and not bothering to look into it, because that's all it boils down to. I'm beyond disgusted with the medical community.

I contacted NIMH for info on PANDAS for our doc. They suggested this website: https://www.pandasppn.org/ I research PANDAS daily, and never ran across this site before. Was anyone else aware of this?

I was just diagnosed with Lyme. I get pains that move around, and one area it is recently starting to hit is my right knee. It starts with pain behind the knee, and then feels like a tight band running across the top of my knee, then finishes with a major swollen feeling, although it actually doesn't LOOK all that swollen. It's the strangest feeling - the only way I can describe it to my husband is it feels like I have an "elephants leg"! It feels really big and tight, and it always surprises me that it doesn't look as big as it feels! Thermoimaging might be helpful if you are unable to find out more through a regular doc. It's not cheap, though. http://www.indytherm.com/sportswork-injuries/ http://www.indytherm.com/case-studies/ Hope he is pain-free soon.

Thank you all for your responses. Thing is, she was ALREADY this bad BEFORE we started the metals and Bartonella protocols. Meaning, we started these out of desperation but they haven't started working - at least not yet, if they end up working at all. From what the doc told us, and I've also learned via internet, is that if you have metals, it affects your immune system so you don't respond to abx treatment for other things. She tests positive for stuff and is treated with abx, but they never seem to work. So we are trying to rid metals to see if we can get her immune system working and the abx will finally start helping. He's also working with her methylation system. But things have been so bad for so long, I'm never sure from minute to minute if I can keep her eating and safe. sss - yes, she has had HD IVIG. It was $15,000 down the drain for us. No improvement at all. Yes, she has also tried many anti-inflammatories. No positive results at all. It's almost like no meds, supplements, including psych meds, work. We've tried many of the "relaxing" herbs and supps as well: lemon balm, passion flower, valerian root, GABA, taurine, l-theanine, etc., etc. I've pondered that H.Pylori, or something with the gut, is keeping her from utilizing the meds, but her last H.Pylori test came back negative. She had a positive IGG, but she was treated in the past and the IGM was negative. We've tried meds that would knock out a horse, but it doesn't touch her anxiety. The stronger ones just make her legs feel heavy. Anyhoo, she was in bad shape before the metals and Bart. Something else is going on. Hoping the metals will clear and the immune system will get in better shape. Thanks again for the responses. I appreciate all input!

Does anyone know of a PANDAS/PANS literate doc who deals with adults and has hospital privileges? DD is 22 and is shutting down. Her intrusive thoughts are horrible and she just wants to die. Her nurse practitioner is great about trying things, and has just started abx for Bart. Her psych is doing metals (she was high in mercury and lead). But nothing is helping. Her current docs are integrative, and don't have admitting privileges to any hospitals. The misery she is going through is just unbearable for her and the rest of us. She's also anorexic, and doesn't want to eat. She's over 20 pounds underweight, which certainly doesn't help the immune problems. The eating disorder clinics we've dealt with don't believe in PANDAS/anorexia, and I'm sure won't continue the metals/Bart protocol if we admit her. She also has extreme exercise anxiety, and the places she's been in the past let her exercise all night. The thoughts tell her she HAS to, and the lack of sleep is horrible. We need a doc knowledgeable in PANDAS/PANS, that can admit her into a regular hospital, where I can be there to monitor her eating/exercise. I know we'll have to travel at this point, but suicide is a constant topic and I don't think we have any other choices. Any names of docs that might help us would be appreciated.

I think it's fairly common knowledge that UTI's can cause all sorts of psychological problems, (especially among the elderly and it gets passed off as "dementia") but, like missmom, I'm wondering if there might be another cause. Our dd tends to test positive for about everything. In her case her immune system just isn't working right, but her symptoms are mostly mental, not physical. Strangely, we just did a urine broth culture and she had very high counts of strep D and citrobacter koseri. Sadly, treatment for them did not improve her condition. I agree this little one sounds like she has PANDAS/PANS. I hope they can find someone who specializes in this so she can get help right away. I'm also realizing that for kids like mine who don't respond to treatment, that Lyme or metals could be screwing up the immune system so they don't respond to abx treatment. It's good of you to suggest the right doc for them right away. It may help them to avoid the years and years of horror we've been through. My heart goes out to them.

My dd had a test like this done. Sadly, even the meds that were "safe" for her genetics were unaffective. It was nice to see which meds might be a danger to her, and of course, she had been prescribed some of those, too.

t_anna, Here is a good article written by her on the psychology today website. I think she totally "gets" pandas. Notice in about the 6th paragraph where she says: "There is no other disorder in which patients clearly believe that they do not have the will to resist these impulses or thoughts." That totally sums up how my dd feels. She absolutely feels powerless against the ocd thoughts. Here is the link: http://www.psychologytoday.com/blog/the-mind-body-connection/201401/pediatric-obsessive-compulsive-disorder-ocd-tics

Interesting that you bring that up. I've just been wondering about the same thing. When I was having horrible TMJ and back of skull pain, Celebrex was the only thing that would help with the pain. Sadly, insurance wouldn't pay for it, but nothing else helped. I mentioned to my husband that it was strange that Celebrex was the only pain killer that I tried that helped. He said that was the only thing that helped with his tendonitis. I have not heard of Pain RX. Who do you get that through? I'm thinking since the Celebrex helped both me and my hubby, that it might be helpful for PANS dd.

sss- her mycoP and ASO just came back elevated. She's been on either Doxy or Minocycline for 4-5 months now. Abx don't seem to knock anything out. Yes, she did do IVIG - didn't help at all. sfmom - she did the Real Time Labs mold test where they test for 3 different mold toxins to see if they are in the body. Negative for all, even though she has the HLA genes. She also tried cholestyramine for a week or two. She didn't get up to full dose, but we saw no change either way. juliafaith - Yes, we've tested for h.pylori. It was positive IGG, but the doc treated for it anyway. That was several months ago. She just retested and the IGM is negative and IGG positive, so assume that is showing her past infection. She has also been on Armour Thyroid for a month or so. Haven't seen any benefit from that either. We did get results back from a urine broth test today. She showed high levels of Strep group D and citrobacter something, I think it started with a "k". Not sure what that means yet. Her nurse practitioner should be calling in a script to treat those. I'm not getting my hopes up. She tests positive for all kinds of stuff, and treatment never helps with the mental aspect. Thank you all for your input. All is appreciated.

juliafaith - yes, she has had her thyroid checked and is on Armour Thyroid. Yes, mold checked also. She has the HLA snps that show she might have trouble getting rid of mold, but testing didn't show she had any in her body. Her Lyme testing has always been indeterminate. I'd love to treat her for Bartonella even though she's never tested positive for it, but I'm afraid her integrative doc is worn out trying things and I'm almost afraid to ask. The psychiatrist that wants to treat the metals doesn't seem interested in treating anything else because he thinks getting rid of the metals will solve the other problems. I'm just not sure what to think, but we are all beyond exhausted.

Me again. Nothing is helping our dd. Nothing. Over 10 years of extreme anxiety, (and I do mean extreme), OCD, intrusive thoughts, anorexia nervosa, etc... We're always thinking we've found an answer, but it never works out. Current doc is beginning to think it's just her low weight causing all the trouble, even though we've told her repeatedly that this started years before the eating disorder, with urinary frequency and anxiety. Everyone wants this to be "mental" so they don't have to deal with it. Dd recently became extremely exhausted, nauseus, heavy leg feeling and temp as low as 94.2 - but doc insists it's because she doesn't eat enough protein. (We've told her REPEATEDLY that dd eats LOTS of protein - but once "eating disorder" is thought of they assume it's all connected to that. Ugh... Fortunately, this illness occurred at the same time I requested some labwork, and the labwork came back positive for mycoP and positive for ASO titer. Sadly, she's been on abx for them, and it doesn't do any good. We went to a psychiatrist who specializes in methylation issues. It's obvious from his office protocol that he leans toward metals issues. (You know what I mean... some LLMD's assume everyone has Lyme until proven otherwise!) The thing is, he did do a provoked metal test and dd DID show high lead and mercury. According to this doc, that is why dd takes abx for strep, myco, etc, etc, and rarely clears it. He says the metals are screwing up her immune system so she is unable to respond correctly to the abx. I've researched a lot of what he's said, and it does seem to make sense. (But doesn't it all at the time when we're desperate and tired?) IF he's right, and getting rid of the metals helps her immune system, then all these weird symptoms of so many other things she has might actually go away. Wouldn't this explain why the PANDAS/PANS kids KEEP getting sick over and over? Something like metals is keeping the immune system screwed up, and that's why there are recurring problems? Antibiotics never bring our dd anywhere close to a baseline - although they can help with extreme fatigue and the kind of intrusive thoughts where she literally grabs her head and screams, "Please make them go away!" But the thoughts are always there, and the anxiety for her makes life not worth living. Another year, and college classes have to be cancelled AGAIN. She truly has no life and nothing to look forward to. She worked her butt off to get a wonderful scholarship, and this disorder has taken it all away. Has anyone tried removing the metals to see if it helps, or are we just barking up another wrong tree?

My son was 18 and started getting pain in the groin area. He ended up having to have Varicocele surgery. Seems the veins above one of his testicles were getting kind of knotted and causing the pain. The pain was above the scrotum, on the right side. It was not horrible pain, but uncomfortable. Just wanted to mention that in case anyone else was bothered by pain there. Our son was diagnosed by a urologist who did the surgery.

My dd had weird reactions like this to Doxy. She said it felt like water was dripping on her hands. Those types of feelings weren't associated with being in the sun. That being said, when she forgot about the Doxy and went to a tanning booth, she did get an awful burn on her nose, and really had to watch the time in the sun. But the hand thing was not associated with a burn. I had read online that others had the same reaction.

My dd did the VCS eye test on Shoemaker's site. Here's the weird thing: One eye passed and one eye failed! Does anyone have a clue what that could mean?

wombat - maybe this link will be helpful. This is a case of h. pylori causing a B12 deficiency: http://evolutionarypsychiatry.blogspot.com/2012/11/b12-deficiency-and-psychosis-case-study.html Sounds like for some, H. pylori can be the cause for deficiencies, one being B12, that can cause lots of problems (mentally and physically). I've read that testing B12 levels isn't very accurate, so many docs are unwilling to treat. But there are 3 types of H. Pylori tests - one is a blood draw, one is a breath test, and another is a stool test. The breath test requires you be off antibiotics and aspartame for 2 weeks prior to test. I can't remember, but I don't think you're supposed to use anything like peptobismal either, but check with your doc. That being said, my daughter tested positive for H. Pylori. She had absolutely NO physical symptoms of stomach problems (intestinal problems - YES, but not tummy issues.) We were hoping after being treated that her anxiety and OCD would calm down. Sadly, didn't happen. She is going to retest for H. pylori in about a week. Seems abx don't always get rid of it, but we aren't sure what is causing dd's problems. Doc thinks it could be mold or metals and we are checking on those as well. Hope this link helps.