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Wilma Jenks

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Everything posted by Wilma Jenks

  1. She is 12 and ready 2 get her peroid any day. It just that this is so out of character for her. All of a sudden she is stuffing her face like we have never seen. I really suspect the steroids. Ugh.
  2. I thought the pimples were from tons of junk food. We tried the bactrim a couple weeks ago and we did not see pimples then. We stopped it, cause it was keeping her up til 6am. Now the doctor has her on a really low dose and tyring to increase it, and we see lots of pimples. She is also ready to get her period any day.
  3. When she was on the steroid burst, she had no appetite at all. As soon as we tapered off... she started eating gallons of ice cream and junk. It was kind of OCDish. She is getting pimples all over her face. Have you ever heard of steroids doing this as your tapering? She also started the bactrim. Could it be that doing it?
  4. When she was on the steroid burst, she had no appetite at all. As soon as we tapered off... she started eating gallons of ice cream and junk. It was kind of OCDish. She is getting pimples all over her face. Have you ever heard of steroids doing this as your tapering? She also started the bactrim. Could it be that doing it?
  5. the doctor starting my child on the bactrim for a week b4 starting the biaxin, since my child typically gets so agressive on meds. i see the bactrim helping with sleep a teeny bit, but ocd is still fierce. do you think i will see this get better once the biaxin is brought on board?
  6. My child did not sleep b4 the Abx. Never got tired and acted very odd into wee hours of the night. I am thinking the bactrim even activates her more, but I am not stopping this stuff.
  7. I tried bactrim 2x's and both times it kept her up even later than usual. She already has severe insomnia. Do you think her body will eventually adjust, and also do you think when I add in the biaxin, it will help?
  8. I am going to give the Bactrim & Biacin a try, to deal with the Lyme. Will this also work for the PANDAS too? Her OCD is so severe.
  9. Traci, I so hope it gets better for you guys. I really feel for you. I don't know how much longer I can go on either. I just pray that I have the strength and I am praying for each and everyone of you guys. This is just too much. I am hoping that the scientists are working on finding more help for us. Keep us posted Traci. Wilma
  10. The PANDA Specialist said she has PANDAS, then he tests for co-infections and said she is possitive for Bartonella. He prescribes bactrim and biaxin. I then call the Lyme specialist we had gone to a couple of months ago.... and he said no,put her on levaquin, because it targets the bartonella better. I want to tell the PANDAS doctor this, but i have a tough time getting him on the phone. Is levaquin better than the other two. Please tell me your experience. The Lyme specialist also said my girls odd symptoms sound like PANDAS, and the PANDA specialist said her wierd symptoms sound like Lyme. I have this girl with severe OCD, distorted thinking that TRULY does not get tired. The Lyme specialist said try treating her for Bartonella, and if that does not work, put her in psych. hospital. I would like to try the IVIG b4 that, but I am concerned about doing IVIG if there is a co-infection.
  11. The PANDA Specialist said she has PANDAS, then he tests for co-infections and said she is possitive for Bartonella. He prescribes bactrim and biaxin. I then call the Lyme specialist we had gone to a couple of months ago.... and he said no,put her on levaquin, because it targets the bartonella better. I want to tell the PANDAS doctor this, but i have a tough time getting him on the phone. Is levaquin better than the other two. Please tell me your experience. The Lyme specialist also said my girls odd symptoms sound like PANDAS, and the PANDA specialist said her wierd symptoms sound like Lyme. I have this girl with severe OCD, and that wont sleep all night long. I just need direction.
  12. My child has complained of achy ankles since she could talk. Now she said there is a shooting pain going up the heel of her foot into her calf. I took her to specialists years ago and they found nothing. Her ankles do look like they roll in though. It is pretty obvious. I wonder if this pain could also be related to Bartonella. I think I read somewhere about someone else haveing pain in feet w/ Bartonella. Any comments are welcome. Thanks
  13. so the bactrim and biacin that my girl is on, could take care of the pandas and lyme that she has, right?
  14. Our PANDA specialist that test our girl found her possitive 4 bartonella. He said she needs 2 be on 2 steroids. Is this typical. I also have an appointment with Dr. Jones lined up. I a also going 2 call Dr. Beal 2morrow to see what he has 2 say, since I just recently had an appointment with him. I as so surprised that he did not check 4 bartonella, with all of my girls severe pych. sypmptons. It is strange.
  15. We were headed toward IVIG for PANDAS and then found our girl tested possitve for Bartonella. The doctor mentioned something like the IVIG is dangerous if your child has co-infections. Do I have this right? Also...perhaps my child just has Lyme and not PANDAS. Something is helping her calm down the last 2 nights. I am not sure if its because we are tapering off the steroid and it has helped something, or is it the small amount of bactrim we added in? Can't figure it out, but something seems to be happenging. I am thinking it can't be the steroids because the steroid burst is suppose to make them worse if they have bartonaella
  16. We see Dr. Beal in Maryland...I brought the Igenex test with me when I saw him. It was +41band. He did a "31" test, but never mentioned testing for co-infections. It was our PANDA doctor that wanted to check for co-infections b4 doing IVIG, and found bartonella. My biggest concern is she DOES not get tired and she is really impulsive and has very bizarre personality at night. Now I probably have to run back down to Maryland to see Dr. Beals, and run up to Conneticut to see Dr. B.(PANDA doc) There is no way I can get these 2 to talk to each other. Dr. B. is so buys that I can never talk to him even if I pay for a phone consult. I feel so in the dark and don't know which way to turn. I feel like I have to be a doctor in all of this. I don't want to be.
  17. Is OCD common with Bartonella infections?
  18. I have heard that my girl should not have been on a steroid burst if she tested possitive for bartonella. I tried contacting Dr. B. to see if this is true and if we should stop steroid burst, but I still can not get through. I don't want to change things w/out a doctor telling me to, but I REALLY don't want to cause her anymore harm. I heard the steroids really can not be stopped suddenly. She is tapering off at this point, but I wonder if the tapper should be quicker than he initially prescribed. Any comments welcome.
  19. I have heard that my girl should not have been on a steroid burst if she tested possitive for bartonella. I tried contacting Dr. B. to see if this is true and if we should stop steroid burst, but I still can not get through. I even tried the correct nurse email. Man, this is horrible. I really need to know if the steroids are a bad thing at this point for her.
  20. I googled the symptoms of bartonella, and I have to say the list I saw did not sound as severe as my child's symptoms. I did not see any pychotic thoughts on the list, or racing brain, very distorted thinking etc...
  21. It is not just Abx. that my child gets wild and aggressive with. It's all medications, suppplements, corn, chocolate, and red pasta sauce. If I stay away from all of this...she is still psychotic and very sick, but those things make her even worse. I also saw Dr. Beal...perhaps I should stick with him until I get the appointment in Sept. with Dr. Jones. Whaddya think?
  22. The doctor had her on a steroid burst b4 knowing about the bartonella. He is tapering her off right now. I know its bad to be on the burst if your possitive for bartonella, but i don't think I can stop cold turkey with this stuff.
  23. Do they do steroid bursts for people w/ Lyme?
  24. I am not able to get PM'd by anyone. I think I need to delete some old PM's perhaps. Thanks
  25. She has a 166 on Cam Kinase. We were headed down the PANDAS path, but now we are told she tests possitive for Bartonella. She gets super wild with Azith., and her insomnia gets much worse when on Bactrim. So what do you do? We currently see Dr. Bouboulis for the PANDAS, but I made an appointment with Dr. Jones for the Bartonella. I am spinning in circles as what will help my girl.
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