mimip

My husband was diagnosed with Lyme Disease, Bartonella, Anaplasmosis, and Bartonella in the Fall of 2011. He was treated for 4 months with various oral antibiotics, but stopped taking them while still symptomatic. He believes he is completely cured, though his LLMD said his treatment should continue 2 months past symptoms. He still has syptoms but is in denial that they are caused by TBI. Now he has a raging case of poison oak and was prescribed oral and topical steroids. We have recently moved to another state (NY) and his primary care doctor is not Lyme Literate. He has no LLMD. I'm concerned about the use of steroids because of "Lyme Steroid Disaster." I believe the steroid use could kick up the Lyme/TBI. I'm also concerned about yeast overgrowth with steroid use, especially after so much antibiotic use (and his "standard American diet"). Any thoughts or suggestions on: - Natural remedies for very bad poison oak - LLMD's in NY (Long Island or NYC), PM me please - The use of steroids with Lyme/TBI Thank you!

When my dd10 (9 at PANDAS onset) came down with PANDAS last year, I first thought it was Lyme (and I *still* don't know if Lyme/co-infections are a factor). She had had an embedded deer tick several years earlier, and 7 months prior to her onset of severe symptoms my husband suddenly became severely ill with what ended up being Lyme and 3-4 other TBI. He has lab confirmation on Lyme, Mycoplasma, Anaplasmosis, and Bartonella, and had very strong symptoms of Babesia (especially horrible, malaria-like drenching sweats) but no lab confirmation on Babs. We were also in a highly endemic area. When my dd's symptoms first started they seemed very similar to my husband's. I had asked her ped for a Lyme test when she first had the embedded tick but was told that unless she got a rash or flu-like symptoms, she was fine (I cringe now even writing that). She had symptoms over the years that I now know are TBI related. I asked 2 different pediatricians for a WB on several occasions after PANDAS symptoms and strep + confirmation, but was denied. They did give her an ELISA, but it is an absolutely useless test. So, the Lyme/TBI and PANDAS symptoms were very similar. Bartonella is an infection to really pay attention to as it causes a lot of swelling (my husband's was *tremendous* in his legs,and his c-reactive protein and sed rate were sky high), and it causes a lot of neurological symptoms. It is very important to investigate co-infections because the treatment is different for each infection. My husband was on 4 antibiotics and an anti-malarial, plus supplements. Also, sometimes IV antibiotics are necessary. BTW, my husband had a very strong reaction to steroids he was given before he was diagnosed with tick-borne illnesses. Basically, it seems like it is difficult to impossible to distinguish between PANS and Lyme/TBI only. You can have PANS symptoms from any number of things as the trigger, and you can have the same or similar symptoms from Lyme/TBI alone, and you can have Lyme/TBI in someone with PANS and have the Lyme/TBI trigger onset or flare while additionally having the infection itself causing symptoms. I'm still trying to sort it all out. I have 6 kids and I'm suspicious that 4 more of them have PANDAS/PANS and/or Lyme/TBI. I believe I have Lyme and Bartonella, as well as having PANDAS/PANS as a child. I'm wondering if congenital Lyme is possibly a factor as well.

Was he ever tested for Bartonella? Pain on the soles of the feet is classic Bartonella.

I don't know if you still need the information, but I know a breastfeeding counselor in MA who has experience with nursing and Lyme. I can private message you with her contact information.

This is probably a stupid (because of being obvious) question, but can a sibling's conjunctivitis cause an exacerbation in a PANDAS child? I'm asking because last night my DD9 started having PANDAS symptoms. She was cranky, throat clearing, anxious, extremely sensitive and perfectionistic, She started having fears of eating last night, and by this morning wouldn't eat. This morning I also saw her licking a piece of chocolate, but she didn't eat it, then she started spitting into a napkin. Her voice sounds scratchy but she won't admit to her throat being sore (if it is). She did not want me to look in her throat or take her to the doctor. I called the doctor and I'm waiting for a call back. Then, I got a call from school to pick up my DS7 because he has conjunctivitis (pinkeye). So, now I'm wondering if my son's pinkeye could be causing my daughter's symptoms. Has anyone ever had pinkeye cause an exacerbation?

I'm going to apologize in advance because I have a lot to say about this. I will try to keep focused, but there is a lot of crossover of issues and overlapping factors. Four out of my 6 kids have been evaluated by a Behavioral Optometrist, including my 9 year old daughter with PANDAS. Three needed vision therapy, and 3 needed glasses, but not the same 3. In other words, there was 1 who only needed glasses, 1 who only needed VT, and 2 who needed both. Also, my husband is legally blind, has complete color blindness (sees no color), as well as other related eye conditions. He also had Lyme and saw an eye dr specializing in Lyme in the same office. The appointments and the vision therapy were all covered by insurance. Here is the link to the doctor: Office: http://www.newenglandeye.org/ Doctor: http://www.newenglandeye.org/our-locations/providers/richard-laudon/ Just to explain a little of what I've learned. A basic eye exam only measures visual acuity, written as a number compared to 20, such as 20/20 vision. This is what glasses help with. In a more comprehensive exam other things will be looked at such as the retina, optic nerves, eye pressure (very important for lyme patients), refractive error, and eye behavior (related to the eye muscles). Refraction is basically how light rays hit the retina. Refracrive error measures if you are far sighted or near sighted, or just right with no "error." Eye behavior is what is being talked about in this thread and what vision therapy helps with. The areas of eye behavior are convergence (eye teaming), accomodative behavior (eye focusing),and ocular motor behavior (eye tracking). They will also look for strabismus (eye turning) and amblyopia ("lazy" eye). So, the corresponding eye problems are convergence insufficiency (eye teaming problem), accomodative dysfunction (eye focusing problem), and ocular motor dysfunction (eye tracking problems). You can have one problem but not another. You can have all of them. You can have 20/20 vision (acuity) but have eye behavior problems. VT can help with acuity and the need for glasses, or just help the eye behavior. I first found out about eye behavior and vision therapy when trying to get help for my now 13 year old son for school and behavior issues. This was long before we had Lyme Disease and PANDAS on our radar at home. My son has been a mystery over the years, and now, because of my daughter's PANDAS dx, I'm wondering if PANDAS could be an issue for him too. His is a long complicated story, but in a nutshell: colicky baby, sensory sensitive, significant visual issues (more on that later), learning disabilities, executive function disorder/ADD symptoms, panic attacks, anxiety, OCD symptoms, bipolar like behavior, rages, and I've even suspected tics. On an IEP since 4th grade now in 8th). After a neuropsych exam showed a much different profile than the school had always thought, and he fit the general pattern and profile of Twice Exceptional (giften with Learning Disabilities) but without technically meeting the IQ criteria, I suspected visual problems. He ended up having *significant* visual problems. He has Anisometropia, sometimes called Refractive Amblyopia. Basically he has normal vision in one eye and moderate farsightedness in the other eye. Because he was not correcting his vision with glasses, and had never done vision therapy, his strong eye was taking over seeing for the weak eye. He was losing vision in the weak eye and is still at risk for eventually losing the ability to see in the weak eye. The condition causes him to also have significant convergence insufficiency, accomodative dysfunction, and amblyopia. Glasses do not fix the problem, and in a way make it harder to see because his strong eye is less able to take over completely and because the difference in prescription between the 2 eyes makes it difficult for the eyes to work together. He has been resisting vision therapy or even wearing his glasses. If anyone is interested, I could explain a little about the "eye hygiene" and vision therapy and how it helps, but this is already really long so I won't unless there is interest. What do other parents think about the possibility of my son also having PANDAS? On the one hand he has a lot of symptoms, we have a family history (my daughter has PANDAS, my grandfather had Rheumatic Fever, another son had scarlet fever, lots of anxiety and OCD, etc), he may be a strep carrier, etc. On the other hand I can't pinpoint an exact sudden onset of symptoms like I can with my daughter. It's almost like he was born with it. I did have strep while pregnant. Have there ever been any studies on exposure to strep in utero triggering PANDAS in infancy?

For anyone contacting the media, here is the link to submit a news tip to Fox25 News: http://www.myfoxboston.com/category/236245/submit-a-news-tip

This hits so close to home for me...literally and figuratively. I'm in the Boston area and this terrifies me, though hardly surprises me. My daughter suddenly presented with PANDAS in early April and was officially diagnosed in July. Several months prior to that my husband became extremely ill with Lyme, Mycoplasma, Bartonella, Anaplasmosis, and very likely Babesia. I have friends who brought their daughter with severe neuro Lyme to BCH and were told that there was no such thing as neuro Lyme, the condition was psychiatric, and their daughter was just trying to get attention. This was about 10 years ago! Elizabeth Wray's story terrifies me, angers me, and saddens me. I will do whatever I can to help this family.I am willing to be interviewed. I will write letters and spread the word. I will contact the media. I'm willing to demonstrate at BCH. I would love to get together with any other local families. Another complication in this situation is that there are some doctors at MGH, including an infectious disease doctor who is considered a PANDAS expert there, do not believe in chronic/complicated Lyme Disease. The ILADS conference is going to be held in early Nov here in Boston. They are doing 2 sessions on PANDAS/PANS. I wonder if there is some way ILADS could help out in this situation.

I will try to be there too.

minimaxwell: Oh wow, I'm going to call Dr Pasternack. He takes our insurance too. Thank you! We have an appointment on Monday with Dr Keamy. I'm also bringing my 7 year old DS due to repeated ear infections, 3-4 with perforated drums and at least 1 after a strep infection. I plan on making an appt. for my 13 y.o. DS too because he has a very large scarred tonsil. Does Dr Keamy also diagnose and treat, or mainly just remove tonsils? EAMom: Okay, so she may actually end up needing a higher dose. I know she can tolerate azith, so in a way I wish they had tried a longer and stronger dose of that before switching.

Thank you all. I gave her the 1st dose and so far so good. LLM, good to know about the length of time it took before a reaction. It was prescribed for 2 months. When she had her amoxicilin reaction, it took a few days and then she had head to toe hives that looked like small pox. It took a week or so to disappear.

Thanks minimaxwell! The forum looks great and it definitely needs a PANDAS topic. And, yes, on a PANDAS center at MGH! There's really no excuse for Boston not to have one. Dr Geller was the first doctor I tried to get an appointment with way back in mid April. His MGH practice is closed to new patients, even for PANDAS, and he can't take my insurance at his private practice. He's been out on medical leave and I've spoken to and emailed back and forth with his back up who happens to be in the same town I'm in. She sent me a provider list from Dr Geller and I contacted every single name on the list without much luck. I'm going to try one of the doctors, an ENT at Mass Eye and Ear, next week, but I think in the end I will just pay out of pocket to get an evaluation by Peggy Chapman in Hingham. I never tried Dr Pasternack at MGH. PM me any experiences you've had, if you get a chance. We went to Dr LaCava and he ordered 4, 3hr sessions of allergy testing. He didn't order any labwork for PANDAS evaluation and recommended pulsing antibiotics, if we wanted. He also suggested she have her tonsils removed. I'm holding off for a little bit on the allergy testing until we get the PANDAS under better control, but I do think it will end up to be a factor. MomtoJake: Thank you for your hugs and your perspective. I think allergies will be a factor for her, and maybe even all 6 of my kids. I had previously spoken to her former pediatrician about allergy testing because she had a hearing test a couple years ago (as a precursor to evaluation for sensory integration disorder and CAPD) and she had some hearing loss due to congestion. The audiologist felt it could be a chronic congestion issue but her pediatrician didn't think it was significant. At what point did your son get tested for allergies? We are only 6 weeks since onset. She had a strep infection at onset, and then last week I became symptomatic and tested positive. A few days later my 13 year old tested positive (asymptomatic). She's so emotional right now that you can't look at her sideways (or actually it's usually if I glance away for a split second while she's talking to me) without a complete meltdown.

Thanks! It is a 250mg per 5ml with instructions to give 1 ts 3x per day for 8 weeks. So, I guess that is 750mg per day. I'm nervous to give it to her because of her cilin allergies but I have some Benadryl ready. My daughter currently weighs 50lbs (she's been going up and down because of AN symptoms).

My 9 year old DD is allergic to amoxicilin/penicilin and was just prescribed cephalexin. The pediatrician and pharmacist both said there was a chance she will have a reaction because of her cilin allergy. Has anyone else encountered this? If so, how did your child do? reaction or no reaction?

Thank you all so much for your support! You are what is keeping me going and keeping me from giving in to doubting doctors. We went to my DD's new pediatrician today. She was very arrogant and defensive. She kept contradicting herself- saying she didn't think it was PANDAS, then saying she never said it wasn't, then saying she thought it was sudden onset OCD with a coincidental strep infection and a coincidental irritated throat causing her to stop eating, but then ordering 8 weeks of cephalexin because that's what she treats PANDAS kids with. First she said she didn't think it was OCD, then she told me tics were a form of OCD, then she said her anxiety was unrelated to OCD. She reprimanded me because the pediatrician we consulted as an expert suggested allergy testing and she said it is unrelated to PANDAS. She said PANDAS is nothing more that a study done 9 years ago linking high ASO titers in kids with OCD. She also hinted at not thinking my DD's ASO was high enough at 400. She said prophylactic antibiotics will cause antibiotic resistant strains of strep. Everything I asked, requested, or stated, she shot down. I asked for a Lyme western blot (not even from Igenex, which is what I would prefer) and she said there was "no way" she could be positive because her ELISA was "negative". My husband's ELISA was negative and he was also Quest Lab CDC negative on his WB, but he is Igenex lab positive, including ++ on Band 31, so he definitely has Lyme. I asked for an AntiDNaseB titer and she said she didn't know what that was, and mumbled something about how I must know more than she does. It just went on and on like that. She hinted that she hoped I would find another pediatric practice. Argh! I'm so frustrated! chase23, thank you so much for making me realize how important the right antibiotic and the right dose are. Your daughter sounds very similar to mine. My daughter is eating better and some anxiety has lessened but I am seeing tics and rages/emotional meltdowns persisting. The doctor today implied that my daughter would have gotten immediately and completely better after 5 days of zithro if it was really PANDAS, so it was a great reminder that the antibiotic and dose are important. EAMom, I printed out that handout, which I think is great, and didn't even get to show it to the pediatrician because she was so hostile towards me. She had the attitude that she is the doctor and she knows everything, and I'm the idiot parent who was being very rude if I even asked a question. The Geller study sounds familiar but I think it is on hold or something. I did get her on a list for a study, which I believe is the same one. tpotter, I think my DD is excluded from the NIMH study because of her amoxicilin/penicilin allergy. I will call anyway, just to make sure. Thank you all again and for allowing me to vent.

Thank you all for your support! Since I posted last there have been some updates. My 13 year old DS tested positive for strep. I am now even more suspicious that he has had PANDAS for quite a while. I'd like to have further tests run but I don't think his pediatrician would be supportive. Also, my DD's new pediatrician, who was on vacation when we first switched to her 3 1/2 weeks ago, just got back to me. She wants to see my DD tomorrow and wants to run some more labs. She sounds very skeptical that it is PANDAS at all. She said that she would have more OCD symptoms, and basically, she wants a dx by a psychiatrist that she has OCD. I think she's also skeptical that her 3 throat clearing sounds and head rolling are tics. My DD is allergic to amoxicilin so she can't take that or augmentin. EAMom, I agree, the current script for Zithro doesn't make sense. Her regular pediatrician had her on 5 days of 250mg of zithro for 5 days (she was 46lbs at the time) for her initial strep at the time symptoms first started. Now she's on about 150mg of zithro daily for 2 weeks out of every month with no provision to increase during recent exposure or exacerbation. So, to me, am not even sure she was initially fully treated, and there are 2 family members in the house with strep. I am hopeful that we will eventually get to Dr B. We are low income and my daughter has a MA medicaid health plan. We can't afford to pay out of pocket and get reimbursed, and medicaid is usually very bad at reimbursing. We are currently in MA but we are planning/hoping to move to NY. We are hoping we can switch to a plan that Dr B can take, or get to another good PANDAS doctor. Mom24, I will PM you for suggestions and to hear your experiences. Thanks again to all!

Where do you live? There is another member here who has a support group in Salem... I'm in Concord.

Thank you, sosudden! Hugs to you too. She doesn't have an IEP or 504. I'm thinking she may need one or the other in the future but she only got sick 6 weeks ago and she hasn't even been formally diagnosed or had an extensive work up by a PANDAS expert. She's on a prophylactic dose of antibiotics without ever having done the initial 3-6 weeks of antibiotics that I thought were recommended for new onset PANDAS. Should I be worried about that? I'm not even sure she was fully treated initially so I'm not certain she's well protected by the low dose prophylactic antibiotics. There is a good chance we are moving to another state in a few months so I just want to make it through this school year. After that we can see where she is in the fall and go from there. My 13 year old (and now I suspect he has PANDAS too) is on an IEP so I know it can be a process to get it in place. I guess she would also need a firm diagnosis of PANDAS too? Luckily, this is the only one of my kids who enjoys school and I trust her to let me know when she's ready. She feels like she can try going mornings soon. She really wants to go back and see her friends. Starting with a favorite class is a good idea, and then see how she does. Thank you for all of your support and great suggestions!

I would be interested. I'm not south shore and I don't have a car, but I may be able to get a ride. Thank you!

I noticed in my 9 year old DD's bloodwork that her WBC was low at 4.6 too. The ped told me it was nothing to worry about and not significant. Is it felt that it relates to all PANDAS, or more specifically to Lyme and other TBI? I had thought of my DD having Lyme and Bartonella before I even thought of PANDAS, but she's never been tested (I don't count the ELISA screening she had).

Thank you, Nancy! I'm definitely concerned about her emotional and behavioral readiness as well. She still has tics (3 throat sounds and head rolling), she still spits frequently especially after eating, she is highly emotional, and she gets emotional and symptomatic after only a short amount of schoolwork. She is eating better, but not normally. We never know what she will be able to eat or when, and she tends to stick with a few different food items and only those for an extended period of time, then she is on to something else. It's in a very obsessive way. Eating tends to cause anxiety so she has an increase in throat clearing sounds and spitting. It's so hard for me to judge because she's so much better than she was at onset, if that makes sense. I wouldn't be as nervous about exposure except that I know she's already been exposed to my recent strep infection, as well as 2 neighbors. We were thinking maybe she could start back by just going in the mornings. That way she could eat at home. I also want to make sure the school knows what to look for in case she needs to come home.

I'm so new to PANDAS (though I do know about Lyme and other TBI) so I don't think I can offer much in the way of advice. I find this very interesting though because when my 9 year old DD suddenly started having PANDAS symptoms, we were in the process of exploring pediatric bipolar for my 13 year old DS. I had been reading Bipolar Kids by Rosalie Greenberg and read about PANDAS. I think that may have been what made me first research it related to my daughter. After finding out more about PANDAS, I'm now wondering if that is my son's situation as well. I really feel for your sister and wish them all the best. Mimi

I first posted in the 'new to this and overwhelmed' about my 9 year old daughter who presented with PANDAS symptoms about 6 weeks ago. At the time my DD did a 5 day course of zithro, but we didn't start seeing a lessening of symptoms until almost 4 weeks after onset. She is now doing better, though not 100%. The last pediatrician we took her to (not a PANDAS expert, but had some experience) gave her a prescrition for low dose zithro that he said she can take 2 weeks out of the month if we want to. I asked about when she could go back to school, if she should be on antibiotics for a certain amount of time first, if we should ease her back, and the types of things we should consider. He gave us no direction, and did not give us a medical excuse for our state's mandated high stakes testing. He said it was up to us to decide, but I feel like I need some guidance. Soon after I decided to get the whole family checked for strep. I had started feeling sick. So far, I tested positive and we're waiting for the results on the other 5 family members. I also made an appointment for next week with an ENT with experience with PANDAS, but I don't believe he's a PANDAS expert, per se. We wanted to go to Dr B but he doesn't take our insurance. The school nurse just called and is pressuring me to get her back into school. I know to the school it seems like it has been a very long time, but I feel like it is short in 'PANDAS time.' My gut feeling is that it is too soon. From the schools pov, getting back to school is the most important thing, but to me it is my DD's longterm health. My DD is very smart and I have no doubt she will catch up, if she even gets behind. What have others done about school? Is it best for her to be on antibiotics for a certain amount of time. Is it a bad idea right now since we know she's recently been exposed to strep? Should her antibiotic dose be higher, and she be on it longer than 2 weeks out of the month? I'm so confused! Any thoughts would be appreciated.

Thank you all again. The suggestions and support have been invaluable. I have some updates which have led to more questions. I brought my daughter to the new pediatric practice about a week and a half ago. I printed out some materials that were suggested and sent them in advance along with her previous health records, lab results, and a symptom diary. I had also spoken to a local nurse who is a PANDAS expert and she sent me a list of lab work that should be done, so I brought that with me. The nurse practitioner we saw felt it could be PANDAS and ran some of the tests requested. My daughter's ASO came back at 400. They did not do an AntiDNase B titer. They also did not want to put her back on antibiotics until she saw a specialist. My daughter started to improve a few days after seeing her new pediatrician. It started slowly at around 3 1/2 weeks after onset. She is eating a lot better, though not completely normally, and her anxiety level has gone down. Her tics continue but they are a lot better. Now we mostly notice them when she is stressed or tired. For example, she did some schoolwork and was working really well, then all of a sudden had a complete meltdown and started having tics. She is still extremely emotional too. She seems to be having GERD symptoms now. I don't know if that's a typical symptom, from not eating, or unrelated. She also complained about a red, painful tongue for a while, and is having urination issues (mainly leaking urine and feeling like she has to pee after she's already gone). We went to a doctor yesterday who is not a specialist but has experience with PANDAS. I didn't really get any clear direction, or even a sense of whether he thought it was PANDAS or not. We still don't technically have a diagnosis. He said she could take antibiotics for 2 weeks per month if we wanted, and we were given a prescription. Aside from that he said her tonsils should come out and that there were some sort of shots (similar to allergy shots?) that we could try. So, my questions are: - She only did a short course of antibiotics. If it is PANDAS would her symptoms get better on their own, even if it took almost 4 weeks to see any improvement? - If it is PANDAS but her symptoms are improving, will antibiotics still be helpful? - She has been out of school this whole time. I'm trying to determine when she might be able to return. On one hand she seems so much improved that I can almost see her returning soon, but on the other hand, especially after her meltdown today after only about 15 minutes of work, my gut feeling is she isn't ready. Should she be on antibiotics before returning? If so, for how long? The doctor we saw last said it was up to me when to send her back, but I feel like I need some direction. - I have 4 other kids living at home. Should they be tested for strep? Are they at higher risk for PANDAS? At the same time my daughter became sick my 13 year old was having explosive anger episodes with rapid mood swings (not unusual for him but there was a significant increase). Is it possible he could have PANDAS too? The doctor said that he didn't think my other kids needed to be tested and he didn't know of a genetic component. - I'm interested in Ibuprofen to help with symptoms. I considered it but was afraid to since she wasn't eating. Any thoughts or suggestions would be appreciated. Mimi

You could try Dr LaCava in West Boylston, MA. He is an LLMD, pediatrician, Environmental Medicine specialist, and has experience with P.A.N.D.A.S. He is a holistic dr and he takes health insurance. I can PM you with his contact info if you're interested. Mimi