Hopeny
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Posts posted by Hopeny
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I'm not sure how far The maritime aquarium is but we love that place . Good luck with your visit
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Physician needs to ask for a quantitative test or they just say + or -. Joybop do you know the difference between the two tests?
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I think it wd be wise to ask the doctor, you can have an allergic rxn after several weeks on a med, it happened to me
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The spirochete changes forms which make it difficult to detect. Igenex tests for many more strains of the Lyme bacterium, as does stonybrook which takes insurance. Another issue with labs is they don't report all bands which are needed for assessment. Igenex reports all bands and stonybrook will if you specifically request it. Western blot on its eon is not a definitive test. Rachel as well it takes 4-6 weeks for antibodies to start showing after infection do typically tests they are run when symptoms first appear will come back clear.thats what happened in my daughters case so Lyme was erroneously ruled out. People have different Lyme specific bands at different times. To show you how flawed the tests are, my daughter came up igm positive (active infection) for Lyme a year after heavy treatment and for a chronic case. That's why it's important to work with an llmd who understands the tests. Given your geographic location, limited resources and situation personally I wd ask the cardiologist to send to stonybrook report all bands, and to test for co infections including Rocky Mountain spotted fever to regular labs. This will be a start . I believe ilads can provide a resource to work with your cardiologist in terms of testing, evaluation and treatment just my thoughts...
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Rachel it would be good to see which bands came up ind or positive to see if your son showed responses for Lyme specific reactions, the ones listed in my post being the ones generally agreed by the ilads doctors to be significant.
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for a lesson or something like that and the teacher says "Oh I have a bad sore throat".? That happened to us today at horseback riding grrr
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I am just bumping this up for folks that are new to the forum. I know there are differing opinions on this topic, so just offering this up for consideration. In my own case, having lots of information available to help me to understand and make decisions has been incredibly helpful
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Is this dr M in CT? If yes he's an amazing doctor and you are in good hands. My daughter had similar symptoms such as skin picking, school issues and strange fears. Skin picking is a compulsion, some people clean , some pick their skin. She told me she was afraid her clothing would hurt her and that the world was a dangerous place so she could not leave my side. I put up a post some time ago with more information on the western blot, which is commonly mis read and misunderstood. I will try to find it and post the link. As others have said the Lyme co infections need to also be properly evaluated. A pediatrician typically wd not be well equipped to help. They are good for the. 95% of kids with typical boo boos. I have found it's best to use specialists generally. Ps it took me a year to get an appt with Dr M and I consider it worth the wait (we had other llmd at the time)
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I am sorry that you are going through this. I am sorry to to constantly ring the Lyme bell but the symptoms you are describing including POTS and being wheelchair bound are very common and specific symptoms of Lyme and co. Lyme can be very difficult to assess for a doctor who has not seen and treated hundreds/thousands of cases so unfortunately it is not uncommon for Lyme to be ruled incorrectly. There is a new book out called why can't I get better by Richard Horowitz. It may be worth a look for you, he also discusses pots. I would recommend getting an evaluation by a true Lyme literate doctor who can interpret the tests. Ilads.org should be able to recommend a doctor. There is definitely Lyme in Texas along with ehrlicia and Rocky Mountain spotted fever.
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Maybe keep on for the school year? My little one non pans was out on zith prophylaxis by a major children's hospital because she has an immune issue. We discussed doing so suring the fall/winter. We have been trying to taper off my pandas dd to a prophylactic dose of zith but she just got a sinus infection/walking pneumonia and the ped put her on augmentin. Her strep titers have skyrocketed since stopping one of out combo meds so I am at a loss on that front. My kids both have immune complement disorders so that remains an underlying issue. I was comforted a bit by the fact that the major children's hospital didn't hesitate to use abx prophylaxis as a treatment options so had planned to keep pans DD on for the school year.
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Have you tried seeing if Dr O will get her in? Dr O practices integrative medicine but she is trained in pediatrics. I have a consult with her on Monday if you pm me your name I can ask her if she can squeeze in an emergency case. One other thought is to fax Dr B and tell him it is an absolute emergency. Check in with dr m too if they can move up your appt. my daughter had a food choking issue at her worst exacerbation, too. We used a team of doctors so I wd say keep going at all fronts.,Hang in.
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For immune problems they do monthly ivigs. I would try it. Our llmds have discussed ivig as an option on the radar. I am do sorry you are facing this from Lyme
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Hi sorry you are going through this. Just a couple of things I wanted to mention. To echo what the others said, Strep can definitely cause frequent urination and my DD who was 8 at the time began bedwetting at the worst of her exacerbation. Also you mentioned you had an autoimmune disorder with joint pain. Just throwing this out there that Lyme & coinfections are complex and commonly misdiagnosed, and can have the symptoms you described. Lyme & Co transmitted in utero can cause some of the issues that you describe, SPD, visual disturbances, also floppiness. Lyme symptoms wax and wane as well. It's hard to say what's what but might be worth having yourself evaluated too for infections given what you are experiencing. all the best to you
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I can't paste it for some reason but on ILADS.ORG, under publications there is a fabulous article from Psychology Today on what the school psychologist could see from Lyme. I might not give to the school psychologist but it would probably be useful for the pediatrician. Good luck.
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What are the implications of elevated anti-DNASE? DD has never had elevated DNASE previously, and her ASO level which was previously elevated has been under control for six months. Her DNASE just came back off the charts (486 with a reference range 0-170). She has been doing generally extremely well, and we are weaning her off antibiotics moving to a prophlylactic dose.
however we have had blips: some return of skin picking, intermittent handwriting decline, some anxiety, emotional outbursts. She generally quickly recovers and I had just assumed the emotional swings had become part of her "fabric" or were in response to strep exposure. Also at this stage, I see many of the girls her age are "dramatic". however now these last test results had me wondering what's up.
In our new school in NJ, we do not get strep notifications so I have no idea when the outbreaks have been or how many.
What do you make of this? I have to do a drs follow up soon in Feb but in NJ you get the results direct from the lab, I'm not sure if I should wait till Feb or what? DD is going down to Zith 2x/week, 250 MG. Staying on our supplements. Does this elevated level need treatment?
She was just swabbed because she had a sore throat (which has gone away) and no surprise because of the Zith swabbed negative. This bloodwork was 2 weeks before the sore throat.
Thanks in advance.
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Hmm the stomach issues/pain can be symptoms of Lyme. My dd had the same swallowing issues when she was at her worst. I agree to get to Dr B and a Lyme literate doctor. Dr b has a huge wait list. Due to the urgency of the situation I would propose an alternate doctor in Connecticut who is knowledgable about Lyme and pandas. Dr O, a number on this forum see her and you can get in quicker. If interested pm me and I will give you her details. We dealt with a number if the same symptoms that were brought under control with abx
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My experience has been that only a Lyme literate practitioner can properly assess Lyme. Most immunologists are not experienced enough with Lyme and co., though Dr B is as good as it probably gets in terms of an immunologist who can evaluate for Lyme too. Try calling ilads.org for a Lyme literate practitioner who is in your area. All the best
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Just to consider, extra time in our school meant testing in the help room outside the classroom with a different teacher. It's just something to be aware of as that may worsen the situation
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Qannie I wish I had an answer for you but I don't. We have used combo abx and herbal remedies for about 18 months and are weaning off. Unfortunately too testing is only of mild help and must be done by a very experienced lyme literate practicioner. Fortunately for us my DD tested "CDC positive" and was diagnosed by my pediatrician, I say fortunately because many people waste years being told their tests are negative. In our case my DD had clear symptoms of Bartonella (neuropathy as you described, foot pain, psych issues, visual disturbances etc but tested negative for Bart, we treated her for it anyway) If you are up for the very detailed reading there is a new book by Richard Horowitz "Why Can't I Get Better" which discusses the testing, symptoms and cures. In many cases the co infections, which can include Mycoplasma, are more difficult to clear than Lyme. Dr Horowitz proposes a treatment model for multiply infected patients, the problem with Lyme is that it wreaks havoc on the body (chicken or the egg, or is it that people with low immunity are more prone to Lyme?) and you have to attack on multiple fronts. I recall he even discusses the O bands and spinal taps. In our case Rifampin/Zithromax and a compounded low dose Arteminisin have been most effective in clearing the Bartonella symptoms. We are hopeful that DD is mostly recovered and will need only short term treatments for flares in the future. All the best to you
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to thesuzie, one of my DD's had a severe and I would call it life threatening reaction to Bactrim. She developed a high fever (105!), mottled skin and severe neutropenia, her ANC was so low we could not leave the house, and elevated liver enzymes. Bactrim can cause bizarre and seemingly unrelated symptoms. We saw pediatrician, Infectious disease and consulted immunologist and no one figured out it was the Bactrim until finally a cardiologist (we saw to rule out Kawasaki's) figured out it was the Bactrim, the others were unfamiliar with those side effects. I am sharing this for you to consider if Bactrim has caused those symptoms your DD is having (I know albuterol can cause hand shaking too) and to consider not using in the future.
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My pans Lyme dd had pins and needles tingling from Lyme/bartonella. Her limbs also would easily "fall asleep" it went away with treatment. My non pans dd had what we thought was a mosquito bite, a few weeks later a bullseye rash appeared in the exact spot. I do wonder if a mosquito transmitted her Lyme (they can carry it) or if it was a short tick bite that looked like a mosquito bite. It was a memorable bite but we never saw a tick in either case
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I have seem a huge turnaround with my non pandas dd with enhansa, I had no expectations and was using for immune health but have seem a phenomenal improvement in behavior, attention etc I know others have not always had a good experience but it may be something to considers. There is good info on the lee silsby site.
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Btw to add I just couch our issues if I need to go outside the circle as chronic strep, no one seems to have any issues with that positioning, and no one has ever gotten in a tizzy when I put it that way.
Not sure what to make of this.....
in PANS / PANDAS (Lyme included)
Posted · Edited by hopeny
Awesome! We did have some pretty spectacular results very quickly with antibiotics of the psych stuff, though it is a long haul
don't get discouraged. I think even within 24 or 48 hours of starting Doxy, when that happened I knew we were on the right track. Lyme physical symptoms (pain, muscle stuff etc) took longer. The fastest working abx for us were Doxy, Augmentin and Biaxin. With Rifampin/Zith combo it was more like a slow but steady result. I found we had a really big improvement like 60-70% quickly and the rest has been the long haul. Of course there is hope, with the right treatment, prayer, perseverance and commitment she will get better. With Lyme & co, the spirochete changes forms and so do some of the con infections so you go up and down a bit according to the life cycle and herxing. I frequently felt like I was playing whack a mole. Sometimes it's two steps forward and one back. Just keep learning and watching.