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Posts posted by sarojane

  1. I agree with Rowing Mom, my DD gets tonsillitis every 18 days, sometimes strep sometimes not. Positive Bartonella test. We started treating the Bart and Lyme with combo abx and herbs approximately 3 weeks ago. She has gotten tonsillitis while on Augmentin.


    This last fever/throat cycle only lasted 2 days instead of the usual 3-5. Her PANDAS symptoms have continually been going down since we started taking Japanese Knotweed, High CBD Hemp Oil, Burbur/Pinella, liposomal vitamin C, Oxylent, Bowellia Serrata over the past 9 months.


    I have heard it's a long road to recovery, so I am hopeful that she will keep improving.


    It seems more than coincidental that so many PANS/PANDAS kids have positive Bartonella tests . My kid's came back positive the first try. Not happy to have such an infection, but it helps to know what infection to fight.

    Can you tell me more about your children. My son was tested this summer with a +Bartonella test with Dr. B's office(working with his partner Dr. K). We started on Arithro and Bactrim and I saw an overall increase in his tics( with ups and downs) over the 1.5 months he was on these meds. In the meantime with did Igenex testing. We just got the results last week and they came back negative for Bart, inconclusive for Lyme, and + Erlichiosis. I am totally confused! The doctor could not explain the inconsistency. Prior to the recent results she did suggest switching to Doxy in case we were dealing with a different infection. Tics have slightly decreased overall, but continue to be up and down over the past 3 weeks on Doxy. Maybe these have nothing to do with the TBDs we may be dealing with. I just wish we could be sure we are on the right track. We have been dealing with motor and throat tics for over 3 years now:( I know we are all on a challenging journey...do you have any insights???


    All I know is that we luckily got two positive tests, FISH and IGG IGM back on the first try for Bartonella from Igenex. I do not know what the a+ test is. I have heard over and over that it is very hard to get a result, and that is why Galaxy does the MWF blood draw. Is it possible the increase in symptoms are a herx? I would talk to Rowing Mom here on the forum her DD had Bart with tics and she ended up treating for Babesia as well, and then there was real progress with symptoms.


    Right now we are using Ceftin, and have a script for Mino and Ripfampin, and we have not started it yet. We are a little nervous about the Minocyclin and Rifampin side effects, have an appointment Monday and want to switch to Azith and Rifampin or Azith and Bactrim to start.


  3. All I can tell you is it seems like MANY have found that bartonella/lyme disease is the cause of their child's PANS/PANDAS and that when they begin treatment of the Bartonella, Babesia other confections and the lyme things seem to get better. Unfortunately here in the States, it is very difficult and expensive (most insurance does not cover testing for lyme and confections) to get the diagnosis. We are in the process of waiting for our test results. I don't want my kid to have Lyme and or confections, but on the other hand, it would be great to know what exactly we are fighting when we give our child antibiotics.

  4. So we are about 7 days away from our Igenex lyme/bart/bans test results for my dd.

    Over the past 9 months she has had 11 cases of tonsillitis and PANS/PANDAS. We would of had her get a tonsillectomy months ago, but now we have heard from llmd that getting a tonsillectomy when you have lyme and coinfections you run the risk over more neurological infection.

    Even if the test comes back neg, there is still a chance she has it. How are you even supposed to decide what to do?


    We moved to a different state 3 years ago and now that our DD is so sick and probably because I have been open about it, "friends" of ours and our daughter have stayed their distance. No phone calls, no invitations, ignored texts etc.


    I have had to homeschool this year to try to keep her well and so that she can catch up from last year. All of this is so horrible and isolating. I just want my kid to be able to be healthy.

  5. Hi,


    Just wanting to follow this, we are on the cusp of trying to decide whether to go through with a tonsillectomy or not. My daughter has not gone more than two weeks without a recurrent strep infection for the past 8 months. She could possibly have lyme, and now the Dr. is telling us there is a danger of brain infection with the lyme because of the tonsillectomy giving access to the blood brain barrier. How are we supposed to even decide!


    I hope your daughter feels better soon!

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