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Everything posted by adkmom

  1. Thanks. I'll take a look. He was at both those parks..and only those.
  2. Hi everyone, A relative of mine has had many Lyme or co-infect. symptoms since hiking in national parks in Southern CA and Nevada mountain range. Does anyone know if there are certain infections more common in CA that he should ask his doctor to test for? (He doesn't yet have a LLMD but has the Igenex test kit, so his doc can fill out the requestion but needs to know which tests to order. Thanks for any guidance. darlene
  3. Laura, Sorry to hear you're having troubles again! Our cases are so similar sometimes. Dr. B suspected Colin had sinus infection several weeks ago (he was pulling at his eyes, throat clearing - now we know from post-nasal drip and his behavioral symptoms had increased). Based on those symptoms, Dr. B put him on 4 day steroid to treat (And he said he spoke with Dr. J about this and got his approval). By day 2, his symptoms had disappeared. So, Dr. B's hunch was right. He said when there's so much inflammation from a sinus infection, the antibiotics won't do anything because there's no way to drain. (I never knew this before.) Hope she starts feeling better. darlene
  4. We're suppose to crush it. Is that the herxing reaction it's causing? Did your daughter have untreated Lyme for awhile? Wondering why it reacts differently on different people/kids.
  5. I'm trying to decide whether to start Tindamax for ds4 this weekend. can anyone tell me what typically to expect as far as reaction/side effects? Really need to prepare. thanks and happy holidays to everyone!
  6. Dr. J. prescribed Bactrim for my ds4 for Bartonella. So sorry, it's taken so long for you to find an answer, of some sort. Terrible! Unfortunately, it doesn't seem that uncommon. Bartonella is hard to pick up. Probably no consolation, but at least you've got the positive test and can pursue the proper treatment! We're retesting ds4 through another lab but symptoms all point to that and he's definite positive for Lyme. Also, treated for Pandas. As the others mentioned, Dr. J said Bartonella is very hard to get rid of and it's predominant neuropsych symptoms. So when treatment has taken care of other symptoms (joint pain, ect) and the behaviorial, cognitive stuff remains, he looks for Bartonella. And our guy has LOTS of ADHD and aggression (bursts). PS - What state are you in?
  7. Kara, I'm sooo sorry. I've been there. We changed meds, knowing nothing about herxing, right before Florida/disney trip! We almost didn't make it on the plane. Colin doesn't have OCD symptoms but major ADHD and aggression bursts which made for a not so relaxing vacation! We realized it was herxing after we got back and spoke to the doc. Hope it gets better for you guys. If you are doing a Disney vaca., let me know, we were saved with the special "disability" passes we got. darlene PS - I'm with you. It totally sucks!
  8. Thanks so much for presenting this! My sister is an OT in NYC school system. I added to Facebook to share with her and her friends. Also, my ds4 just saw an OT who was soooo curious and asking lots of questions, so I'll share it with her organization as well. I wonder is there an easy way to email this out? darlene
  9. Thanks Laura. Do you give her meds all in the a.m.? I give Colin all 3 in the a.m. and then 1 at night. wondering if it makes any difference, breaking it up? And did Tindamax make it even worse? We start that next weekend. (I really need to prepare myself.)
  10. Hi Kara, My ds4 just started Bactrim for suspected Bartonella. He's also being treated for Lyme and Pandas with Azithro. and Cefdinir. The day after starting Bactrim he started a motor tic. That stopped within 2 days but then his symptoms of hyperactivity really shot up, along with aggression, inability to focus, impulsivity and opposition. And yes, I've been told by Dr. J that those symptoms ADHD are classic Bartonella. Colin also started behaving more child-like too but he's young, so it's hard to say if that's just a passing phase unrelated to meds. The hyperactivity definately is related...at least for us. hope that helps. has she gotten any better? darlene
  11. Thanks Ladies. I haven't tried any detox strategies. So maybe that's an option. It's so hard seeing the symptoms worsen and then trying to keep telling yourself, he's actually getting better. What a messed up disease this is! thanks again. i'd truly be lost without the support of everone on this board. what a blessing you all are
  12. To update...we finally took ds4 to Dr. J last week. Went well but expected all the changes that he made (based on what I've been reading on the forum!) He strongly suspects Bartonella and ordered a test through Specialty labs (which is now under Quest - FYI) so will be covered by insurance. He thinks Bartonella because his neuropsych symptoms outweigh the physical symptoms and we're dealing with aggression issues and LOTS of impulsivity. So, still on Azithro, Cefdinir but added Bactrim to target Bartonella. Start Tindamax every weekend starting next weekend. (will be an interesting Easter) He said he would hope to see some improvement in a few weeks and symtoms could initially stay same or get worse. They've gotten WORSE!!! It's scary, I almost dread giving the Bactrim because it seems to bring out this really dark, mean, angry, aggressive, oppositional side! It's terrible. He's been on it for a week now. The aggression/rage don't last long, but have bursts of it alllllll day long. And the opposition is terrible. Ran from me in a parking lot and yelled "what are you going to do about it if I don't come!" didn't even sound like my kid... Does anyone else experience this behavioral stuff when treating Bartonella? Did it last long? Anything help? It doesn't seem to be herx. Just an increase in those symptoms. His tics haven't started up. I just keep saying to myself...this is the disease...he doesn't need psych meds...It can get so tiring! Sorry I'm really VENTING. darlene
  13. I asked Dr. J about this..which tests to order for my son's twin brother. The whole Igenex co-panel? He said, not to bother. Just run the 2 Western Blot tests ($200). If that helps.
  14. We've been out of touch. But hope you feel better!
  15. Hey Laura, Sorry to hear things are so rough! Hang in there. We just got back from our appt. with Dr. J and Dr. B. Jones made the changes I expected. Suspects Bartonella and ordered more tests. Started ds on Bactrim and in 2 weeks to start Tindamax on the weekends. He did mentioned that if things got bad on Tindamax, cut back from 2 days to 1 day. I wonder if that would be helpful for you? He suggested we check in after our first week of treatment. So, maybe you can call and check in with him, if you haven't already. When I asked if I should suspect things getting worse on Bactrim, he said maybe not, the other antibiotics may have already cleaned most of the toxins out...or something to that effect. But was more concerned about the effects Tindamax could have. And to start it off slowly. Your dealing with different symptoms, but he did say he'd expect to see improvements begin in about one month (I'm leary of this after everything I've been reading and don't want to get my hopes up) Sorry I don't have more suggestions!
  16. Kara, Thanks for all the info. Glad things went well. Definetly want to try some of your doc's suggestions. darlene
  17. Will do. Very excited and relieved. It's coming just in time!
  18. Ask for the "we care" rate, it's $84 night. cheapest around. good luck. yes, he's very popular and extremely nice.
  19. Just wondering if any other PANDAS or Lyme parents are seeing Dr. B this week? I'll be at the Doubletree Tues. thru Thurs. Seeing Dr. B. on Thursday. would love to meet some others dealing with this!
  20. Just wondering if anyone is seeing Dr. Jones on Wednesday? Would love to meet other moms. Or Dr. Bouboulis?
  21. Does he give any timeframe for treatment or improvement in all of this?
  22. Laura, I sent you a PM. So glad to hear it went well. I've been thinking about you. Wasn't sure if you took that appt. So happy for you!!
  23. Yes Aidan was so wiggly - I think he rolled over very early but it wasn't like it was something intentional that he had done he was just so squirmy it happened. Also my 2 other kids sat up (barely) for their 6 month picture at their baptism but Aidan could not - I really thou gt he was strong enough too he just could sit still enough to hold it. It took me a while to really think about it but it is interesting about your twins with one having similar symptoms as my son from infancy (that I am thinking may be attributable to Lyme) while the other one did not have these symptoms. So, does it mean that the symptoms from infancy are not really symptoms of Lyme? Or could one of your twins have got Lyme from you congenitally but not the other? Or did they both get it and it is more actively attacking one twin over the other? Or did it make infect a certain part of the body in one twin but not the other(such as the brain since there are neurobehavioral symptoms)? It does seem to affect some people more than others. I also think that from stories I have read that it can be in your system and not really have a big affect until all of sudden you have the symptoms often brought on by some other trauma or stress (or maybe some never get much symptoms at all). Or some may have one type of symptom at one time and another at another time. I guess that is what I see in my other children - like the 2 years ago my son Sam got stomach aches and felt dizzy and it seemed to be worse once a week. He missed school every Thursday for a few weeks in a row, He also had one incident of a racing heart at that time. The doctor never found a reason for it and it eventually stopped. But now I am thinking - was that Lyme? I am curious if your twins are identical or fraternal. This could be really interesting to a researcher if these symptoms do turn out to be from Lyme! Elizabeth They're both boys and fraternal. So, they're very different in many ways. We still have to have his brother tested for Lyme.
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