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I am getting pretty overwhelmed to know where to go or what to do for my daughter. She has lyme disease. She had a picc line placed in August and has been on Rocephin IV since that. She does 4 days on and 3 days off. She is completing month 2 this week. She feels no better. She has stayed on Malarone for the Babesia symptoms during this time. She sees a doctor here in Indiana. We love our LLMD. I recently talked with someone who thinks we need to see the best person and travel to the east coast. I would love to think we could keep going to the doctor we have. The problem is that my daughter (13) is not getting better. We are at 6 mo with this doctor, and no improvement. I kind of thought that was early enough still to not necessarily see improvement. I have so many hopes and dreams for my daughter…i will go to the east coast if that is what it takes, but it will definitely change our finances to where we have to make some big cuts. I am willing to do that if it is the only way for her to get better, but it will be hard on her to travel like that, and miss even more events in life. I am going to re-read thru the guidelines from ILADS again with a fine tooth comb, and see what would be done differently. Katie has been on steroids in the past quite a bit before we knew she had lyme (due to severe asthma). She hasn’t been on them since Oct 2011 now. The antibiotics are keeping her from getting a sinus infection, so that keeps her asthma in better shape. I am grasping at straws to know what to do. Our doctor here would be open to doing whatever I ask, so I think we could hit the lyme harder if needed. She usually puts her on 3 oral antibiotics at a time. This IV is just new so she is only on rocephin and malarone. Any thoughts you all have are greatly appreciated. You can PM me if you have to use doctor’s name. Maz, do you have any thoughts? Thanks so much everyone!
Julie
Katie 13 yrs old
Lyme x 4 years.
Diagnosis with positive IGENEX Western Blot April 2012
IV PICC line: Taking Rocephin 4 days on, 3 days off
Malarone bid (antimalarial for babesia)
many supplements and other nonantibiotic medsMy understanding is that most very experienced LLMDs do phone consultations. Possibly, Skype, too. You could arrange one in your doctor’s office so that she could contribute and be involved in possibly new treatment plan.
KrysMaz, do you have any thoughts? Thanks so much everyone!
JulieKatie – just thought I’d let you know that Maz is away at the moment, so may not see this for a while.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)
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