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  1. 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!
  2. 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.
  3. Was he ever tested for Bartonella? Pain on the soles of the feet is classic Bartonella.
  4. 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.
  5. 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?
  6. 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?
  7. 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
  8. 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.
  9. I have not personally used Dr Keamy. I doubt they treat, I think they just get out the tonsils. Call me if you want to chat. 508-667-0574 Tiffani

  10. 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.
  11. 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.
  12. 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.
  13. 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).
  14. 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?
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