Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Everything posted by Ebersolk

  1. You can email me atkerry.ebersole@yahoo.com
  2. Are the numbers borderline or not? How long have they been off ?
  3. It is all of them basophils esoniphils and the other one or two
  4. Has anyone had low white blood count after years of antibiotic treatment? My daughters are in the 2 range after treating Lyme for 3 years and pandas for 4
  5. How do you get the code to order from Klaire labs? Thanks.
  6. My daughter originally was dx with Bart and Ehrlicia. Most recent tests have not shown either but the Lyme is still there and we recently saw an increase in strep titers (from a low of 60 back up to over 400). She is allergic to penicillin so it is hard to find stuff that works. Thanks for the help!
  7. My daughter is currently on 100 Bactrim, 300 omnicef, 250 azith daily and then tindamax twice (once daily) on the weekends. She takes 1 theralac probiotic daily and two on the weekends (30 billion units) We are changing out the omnicef for rifampin either 300 mg daily or 600 (i have to check rx). What kind and dosage of probiotics do you recommend with this dose of medicine? To date she has not had any issues with what we are on but it seems like rifampin is stronger. Thanks!
  8. What can anyone tell me about the use of Rifampin? Our treating doctor wants to change from omnicef to this. She is also on numerous other meds so I am a little concerned.
  9. We have actually seen Dr. T (first)), then Dr. L and now see Dr. B along w/Dr. Jones due to Lyme and co-infections. I had called Dr. Elia when my daughter's symptoms first started over 3 years ago and they never called back. I had thought that Dupont was not Pandas friendly and was just wondering in case I have an issue. Also, it would be nice to have someone close by to add in to our treatment. Do you think it is worth my adding her in? I also know someone who had an appointment with her upcoming and wanted to make sure that she did not just dx only and not treat.
  10. Can someone advise what type of treatment Dr. Elia provides and if DuPont has now become PANDAS friendly?
  11. You may want to try to get in with Dr. Bouboulis in CT or if you can't get in for a while with him, one of his staff. He is an immunologist and does take insurance. We have Cigna. Just be prepared if you get him to wait for awhile- a morning appointment would be better. We have been seeing him for Pans as well as Dr. Jones in CT for Lyme.
  12. Can you get an appointment with a Pandas doctor? I do think your daughter may need longer antibiotics and she may need different types. She could have PANS and not have it only be treated by strep but by viruses or lyme etc.
  13. It could be because of the Lyme that the strep won't clear.
  14. Does anyone have any recommendations from switching from Azith?
  15. You should find a PANS/Pandas treating doctor as your daughter may need longer term antibiotics or other things. If you post where you are near, someone will post the closest doctor. My daughter was originally diagnosed with OCD, one year later with Pandas and then after 2 1/2 years LYME with co-infections. At this time, I am not sure if strep started it (she had high titers), the chicken pox vaccine (given within days of her symptoms) or the Lyme which was chronic by the time she was diagnosed. My best guess is un-diagnosed Lyme which started the autoimmune process. Her original western blot was negative and it was not until she did a test from Igenix with a co infection panel that we learned she had Lyme. We are over one year treating for Lyme and she still has it. A knowledgable PANS doctor can assist with all of the testing needed.
  16. Not sure how old your child is but my daughter turned 13 in October. She has been having issues with her thyroid numbers for awhile so we saw: Dr. Judith Goldberg-Berman 4 Dearfield Dr Suite 102 Greenwich, CT 06831 She does not take little kids. At this time, we are still monitoring. I believe she has worked with Dr. B and Dr. J as she knew of both of them and I got her name from Dr. J.
  17. I would be interested in this ENT near Philly info also. Thanks! Kerry
  18. I do think you should follow up with LLMD if you can. My daughter tested negative on western blot but then when we did Igenix and the co infection tests. Her Igenix Lyme while negative according to the CDC had several indeterminates and other CDC non-lyme positives. The co infection test showed she was positive for Bartonella and Erhlichia. We followed up with a LLMD who diagnosed her with Lyme. This was over 2 years into our journey but I am not sure that the undiagnosed Lyme is not what started our auto-immune process in the first place. Since then we have been actively treating the LYME and while not a 100% she is much better. Kerry
  19. Have you tested for Lyme with Igenix? When strep keeps coming back or is chronic, Lyme can be the culprit.
  20. I agree. Your daughter definitely sounds like she has Pandas or more likely PANS as it is now called. If you let us know what state you are in, people can let you know who is the closest Pandas/pans specialist.
  21. Two books that I have found helpful are Freeing Your Child from OCD (Tamar Chansky) and What To Do When YOur child has OCD Aureen Pinto Wagner (she also has others for younger kids - UP and Down the worry hill which also may help). I also think it is good to get a therapist but you also have to do it at home and reading these books helped me while we went through 4 therapists before finding the right one. You need to start slowly in that most recommend coming up a fear hierarchy. Don't start at her most difficult thing to do. I would sit down and rate which is the easiest for her and do that first. I think as you start off slow and she gets some success it will help. For instance, maybe have her just leave a finger out or a foot from the covers and go from there. My daughter had alot of what your daughter has (bathroom, clothes, dirty) plus much more and I can tell you that it is so much better now. She was diagnosed at 9 1/2 w/OCD and over 1 year later w/Pandas. Hang in there! Feel free to email me with any questions.
  22. I would also test through Igenix for Lyme. We did the standard westernblot which was negative yet after doing igenix testing for lyme and the co infections she was positive for 2 co infections and then a lyme doctor gave us a lyme dx on top of the pandas/pans diagnosis we already had. You may want to call and see who you can get in with first. While there may be other doctors I would say the top treating doctors are Dr. Korvacic (spelling) in Chicago, Dr. Trifilletti (sp) in NJ, Dr. Latimer in VA and Dr. Bouboulis in CT. DR. T and Dr. L are pediatric neurologists and Dr. B is an immunlogist.
  23. My daughter had Lyme, Ehrlichia and Bartonella. Before the lyme diagnosis we had been on many antibiotics for PANDAS/Pans but had been at that time on 300 omnicef. My daughter is allergic to penicillin. Lyme doctor added azith and minocycline. Minocycline caused her to have issues w/her teeth ( any cycline antibiotic can give you issues w/discoloring of teeth and gums especially if you do not have permanent teeth it may be an issue) so we switched out to bactrim. Recently we added in tindamax so she is on omnicef, azith, bactrim and tindamx only on the weekends. Our last blood draw showed no more ehrlichia or bartonella and the bands are going down for the lyme however I have noticed increased strep antibodies. Not sure if from exposure or from treating the lyme. At one point we were down to 60 from greater than 1,360 but now are back up to over 400.
  • Create New...