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Everything posted by mdmom

  1. We are into month 3 of treating Bartonella with Rifampin M-F, Azith Sat-Sun (3 weeks on). Flagyl for 7 days in between Rifampin/Azith weeks. We also added Nystatin about 1 month ago (4 pills at bedtime). My DD12's newest symptom is stomach pain. I cannot tell if this is related to herxing, yeast die-off or is it a Lyme or Bartonella symptom. She can hardly eat anything. We are supporting her body with: Detox supplements inclucing MB12 injections. She takes a detox bath everyday. We are gluten/milk free and eat a pretty healthy diet. Lots of probiotics. Any thoughts?
  2. tpotter-- Do you regret doing IV? Or do you feel it helped in some way? Do you know why your son ended up reacting to the oral meds after the IV meds? What was his reaction? Thanks to everyone for the replies.
  3. Thank you all for your replies. I am grateful for a place to vent where people will listen
  4. I live in the Baltimore area and have had multiple interactions with KKI docs. My son even attended the KK school for 2 years and his PANDAS was missed by all. KK folks are very good at identifying behaviors and working with them. I think they are quite narrow-minded in this area and refuse to look at why behaviors are happening and instead focus on dealing with behaviors. My son had neuropsych testing done by a KK doc - she would grab him from the classroom and take him to her office (at that time the neuropsych offices were in the same building as the school). He spent most of the time
  5. My insurance company will not pre-authorize IV antibiotics and placement of a chest port for my DS14. They told us that we need to have the claims submitted before they will decide whether or not to pay. So I'm left playing a game of "Insurance Roulette." My husband and I are not in a position to pay out of pocket for this treatment. The estimated cost of the medicine and home nursing care is $600/week. Plus we would have to pay for placement of the port including hospital, surgical and anesthesia fees. Anyone have any advice? Has anyone else's insurance company played games like this?
  6. Susan, Great positive thing for me to read today. Thank you for sharing your successes, big and small. Can you please tell me which foot detox product your purchased. I've been working with our chiropractor for my DD12 and she has benefitted from the foot detox treatments, but the doc suggested we buy our own system for home use. Curious to know where you purchased yours. Thank you.
  7. Wondering if anyone has used these to support the body during the rought times of treatment. My DD12 just had one today and I am hoping it will pull her out of the misery she is in as we treat the EVIL Bartonella.
  8. JJL--We are headed down the IV path with our 14 yr old son within the next month. Have you started this process yet? I am searching for info on the ups and downs of the chest port as well. I was under the impression that administration of the abx this way would be pain-free once the port was inserted; however, I just read on-line that a needle must be inserted in the port and there is discomfort with this. 9 years ago my son tolerated a PICC line very well at age 4 and there was no pain associated with it once it was inserted. Can anyone help me understand what a chest port experi
  9. Thanks for the explanation LLM. I give Milk Thistle 3 hours before Rifampin (which is dosed at bedtime away from food). It has done a good job at keeping our livers happy
  10. Why can you not take Milk Thistle with Rifampin? My whole family is currently being treated for Bartonella on our Lyme journey and we just added in Rifampin and have remained on Milk Thistle during this current therapy. Is it contra-indicated for some reason?
  11. I just heard about this therapy for Lyme and other diseases. Anyone have any knowledge to share?
  12. I agree. Disappointing coverage of the disorder; they really dumbed it down. However, the "public" is not ready to hear about all of the symptoms of PANDAS and all of the ramifications of the disease once it goes chronic like it has in many of our kids. I am optimistic that these little snippets about the disorder will eventually open the eyes of mainstream medicine. Ironically, reading the Saving Sammy book is what spawned me to start seeking the diagnosis for my son just last year. Dr. N, in a phone consult, said to me after listening to his history, "I cannot believe no doctor ev
  13. Why are you even asking this question? My son showed signs of PANDAS at age 3, but was not diagnosed until last year at age 13. Now at age 14, he is so debilitated after years of struggling with OCD and anxiety and it led, like MOMwithOCDson's child, to delayed social development. He has behavioral and emotional patterns that he used as coping skills all these years of being improperly diagnosed with OCD and Asperger's that we will most likely never be able to reverse. He is finally being treated medically for PANDAS and infections, but in addition to advocating for his medica
  14. It's not coverage for IVIG you need to be worried about. It's coverage for IVIG for PANDAS. BCBS considers this investigative treatment for PANDAS. Some on this forum have been succesful getting the treatment for this dx. Others, like me, have had no success. Some docs are getting insurance approval for IVIG based on immune deficiency diagnoses.
  15. My DS14 (DX with Lyme, Babesia, Bartonella and PANDAS) does not seem to be responding to Lyme and co-infection treatment as well as my DD12. He is losing weight, looks pale, is lethargic, is not in school, and just had another PANDAS episode after a mild cold. LLMD said his bacterial and possibly viral load (in addition to parasites) is most likely very high and we may be considering a PICC line in the next few months. Theory is he has had Lyme most of his life and PANDAS since age 4. Lyme and co-infection treatment started 6 months ago. Ironically, this will not be his first PICC expe
  16. According to my doc, injections should be given in the morning. If given later in the day, it may cause excitability and affect sleep.
  17. My husband, myself and my DD12 all started the injections (daily) 3 months ago. I cannot get my DS14 to do the injections so he takes methylated B12 in sublingual form (it's a compounded liquid like the injectable form). We are all being treated for Lyme and co-infections, plus my son also has a PANDAS dx. The B12 injections help us immensely with mood and energy level. Our doc said we can go down to 3 injections per week, but the days we don't use them, we don't feel as good. B12 is water soluble, so the body will not hold onto more than it needs. Our LLMD says that none of us "de
  18. Could be yeast. My husband had horrible breath until he started taking an antifungal for yeast overgrowth.
  19. Bumping this topic to keep it at the top of the list.... I took the survey. It only took a few minutes. I am going to fill one out for each of my children dealing with Lyme as well. The more responses, the better.
  20. Philamom - We give Milk Thistle with Breakfast and Dinner, just because it's easier to remember. Sptcmom - My ID name is misleading. I live in Maryland, hence the mdmom. I am not an MD, but I sure feel like one some days
  21. 4 PANDAS docs all agree that the FluMist vaccine that my son received at age 9 pushed him over the edge (he is now 14). He had what are now obvious PANDAS symptoms before this, but he has not been the same since the vaccine--he couldn't even function in a mainstream school after it. I am filled with regret. Sorry for the dramatics - but if this helps even one person it is worth saying.
  22. Posting on Lyme board since a lot of us deal with PANDAS too. Front page of the Health section. Yay for mainstream reporting on this stuff!
  23. Front page of the Health section. Yay for mainstream reporting on this stuff!
  24. Sorry to hijack this post, but here's a question for Wendy (SF Mom) or others..... How can I help my daughter with Lymphatic drainage? It is a huge issue for her. Been working with a chiropractor (energy medicine - muscle testing, detox foot baths, electronic laser immune treatments). Tried rebounding on a trampoline. Tried a homeopathic treatment, but probably didn't give it enough time to work. Any other suggestions would be greatly appreciated.
  25. How about CD57 through LabCorp. Always a good piece of info to get when trying to put the puzzle pieces together.
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