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Everything posted by Santi

  1. The generic version of this is called Cefixime which is not sold in the US. I believe I may have found the cheapest at quality prescription drugs in Canada. Andrea
  2. My son is 9 and 71 lbs. He takes 450mg 1X/day and tolerates well. Andrea
  3. I am trying to find the cheapest place to by Suprax. In the US the cost is between $500-$600. I found it for $192.00 at Quality Prescription Drugs in Canada. Anyone know of another place I can try? Andrea
  4. My son has lyme and he was on prednisone for 1 week for his asthma. Much of his symptoms returned and they were HORRIBLE!!!! I called his LLMD and they informed me that steriods is NOT recommended if you have Lyme unless its absolutely necessary. Once he was off the steriod, he immediately improved. Andrea
  5. I am surprised he does not see children. Much of his research is done on neuropsychiatric disorders associated with Lyme and you see this is many children. Andrea
  6. My son has been on this for about 3-4 months. It is used to help calm him down. Apparently, it can take up to 6 months for its effects to begin to work. Just recently we have been noticing a change in him. He is much less hyper, but seems a little tired, sluggish which we've NEVER experienced with him before. He actually started to play chess (can sit for 30 mins) something we've NEVER seen with him!! Andrea
  7. That's what happened to us. My son was on Rifampin and Azith but I can't say all symptoms disappeared but the worst of it did (rages and anxiety). Since he became extremely hyper we had to change abx and symptoms started to return. Then he was put back on Rifampin and Biaxin and ALinia and we are going on our 5th week and just beginning to improve once again. We are starting to see a very different child. I pray that it keeps going. Andrea
  8. Hi Lily, I am so sorry to hear how tough its been. We are in the same boat. I also noticed problems around the age of 2 and by 3 I was visiting a psychiatrist. He is 9 years old. How old is your daughter? My son has been on treatment for about 5 months and we are still trying to stabalize him on the right abx. For him, what seems to work best is the Rifampin. His LLMD seems to think that the Bartonella is his biggest problem and the Lyme is only secondary. When we took him off of the Rifampin his symptoms began to resurface. Now that he has been back on it for about a month, we are seeing improvements again. I am sure your doctor will find something new if its not working. Where do you live? Andrea
  9. How old was your child when you first new something was wrong? Have you noticed that treatment is working? Andrea
  10. My son has Lyme and Bartonella and a huge portfolio of psychiatric problems (which may all be due to lyme??). We have gone down the PANDAS route and its unlikely he has it. Andrea
  11. My 7 year old son has significant OCD. We have yet to figure out if its truly OCD or tics. He is constantly repeating what others say, and do, its extremely difficult to have a conversation with him (since he's always repeating), and he does the same things over again (i.e. certain movements, gestures, etc.) His writing was beautiful and now he has a need to place hooks at the end of letters, and its become messy. I can tell he needs to retrace the letters which takes up a lot of extra time. He's starting facial grimaces and neck jerks. Of course, stress aggravates everything. He's been seen by a neurologist and she couldn't tell yet if it was OCD or tics. He does take his baths but I notice that he "holds it in" especially at school. The "not going to the bathroom" thing you mentioned may be in fact OCD, not that she is forgetting to go. Watching your child have OCD is really tough. Andrea
  12. Hi Lyme Mom, My son is also 9. He has a huge portfolio of problems but I would rate rage/anger/irritablity the worst. He has a diagnosis of Lyme/Bart and borderline Babesia. His Lyme doctor believes that the rage is mostly from the bartonella. If your child has lyme, I would definetely check for the co-infections. Bart is notorious for rage as I'm learning. My son was taking Rifampin and Azith but we've since switched. I must say that it has worked very well on the rage/anxiety/anger piece. We are truly thrilled about this. I can actually touch him now and he doesn't tear our house apart. Good luck with this! Andrea
  13. We are now replacing Rifampin and Azith with Biaxin and Alinia. Has anyone had experience with these? Andrea
  14. Yes, very much so. I appreciate this information. Andrea
  15. My 9 year old was prescribed 1mg of Naltrexone for his hyperactivity. It is a very low dose narcotic. But the fact that its a narcotic makes me nervous. Has anyone had any experience with this? Andrea
  16. My 9 year old son has been on this for about 2 months. It has helped with his anxiety. However, he is being taken off because he has become extremely hyper and his eosiniphil count is elevated significantly. According to his LLMD, Rifampin can do strange things to the blood. But, it does work great on Bartonella, in our case at least. Good luck! Andrea
  17. With the exception of swolen glands and frequent sore throats, his symptoms are mostly psychiatric. These include: rage, anger, agitation, ocd, anxiety, adhd, sensory issues, and sleep issues. His doctor thinks that his problems are more Bartonella than Lyme. We are definetely seeing the improvements being on the Rifampin. His anxiety is down. Now we got to work on bringing his ADHD down. You have been very helpful! Andrea
  18. Excellent info here RN mom. I have 2 questions: 1. Re: skin - I always wondered about my son's cheeks. They are red with white spots in it, like there is no pigmentation. When I press on it, it becomes completely white. I believe you called it blanching. I wonder if this is the Bart?? 2. You mentioned cycling probiotics. We do 100 billion per day. My son takes 2X 50 billion a day several hours away from the abx. Is this what you mean? Andrea
  19. Thanks so much for posting this. It is very encouraging. My son will be 9 and he is also on Rifampin/Azith. I agree, it has helped with the Bartonella because his anxiety/anger/rages/OCD has decreased significantly. But, he is very hyperactive which has me worried. His eosiniphil count is elevated. His doc initially thought it was the Rifampin, and now we are leaning towards the Azith. I think the next step is to switch the Azith to Doxycycline. I've heard that not to many people can tolerate this because of stomach upset. May I ask what types of behaviors you were dealing with due to Bartonella? Andrea
  20. Thanks everyone for the feedback. His WBC's (eosiniphils) are quite high since starting the abx. His LLMD thinks the activity might be due to the high count which is an allergic reaction possibly to the Azith. I meet with him next week. Andrea
  21. I know I sent this message before, but I was hoping to get some more feedback. I have never seen my son so hyperactive like he has been for the past 3-4 weeks. HE is currently on Azith. and Rifampin. His anxiety is down, Yah!!!! He is happier, more affectionate, much less agitated, angry and we've had no rages in a long time. HOWEVER, his hyperactivity is through the roof. I've never seen him this way before. Maybe when he was on CELEXA 3 years ago. Manic, not sure, but I have thought of it. He is driving his teachers nuts, he's been in the office twice and he's twirling like a tornado all day long. What is this? Is this part of the healing process? Anyone deal with this? Andrea
  22. I had cellulitis a couple of years ago. One day I could not get out of bed. The fatigue was so overwhelming. Then, I think I got a fever. The next morning I woke with a horrible red rash all over my lower right leg. I got treated with abx (not sure what) and it got better fast. Andrea
  23. My son has been off of Rifampin for over 1 week. Now he's been off Azith for about 3 days (checking to see if he is allergic to either one). After 3 days of being off the Azith, the anxiety has surfaced. He has begun to wet himself, destroy items and have meltdowns. Is it possible for such behaviors to return in such a short time? We did not see this when he came off of the Rifampin. How bad is it anyway to come off of abx so abrublty? We need to wait till Monday to recheck his bloodcount. Andrea
  24. Per our LLMD, I took my son off of Rifampin and now Azithro to check his eosiniphil count in 1 week (this will be 2nd week off of Rifampin). You mentioned that your son was taken off abx as well. How did he handle the removal/change of abx? Did his symptoms return? Andrea
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