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Everything posted by mdmom

  1. Our PANS/Lyme doc orders the IVIG and and an infusion company sends a nurse to our home to administer it. If you could get the doc to order IVIG, then this would be a good option for you.
  2. Many on here deal with Lyme and yes, I agree it can kill - not only by directly affecting a body system, but it can cause extreme depression and has led to suicide in some cases. It has wreaked havoc on my family, my finances, our family's future. The more mainstream press this awful disease gets, the better.
  3. Sorry you are having to fight so hard...I completely understand. I had to fight most of last year to get my insurance company to approve IVIG for my son (who has a valid immune deficiency). Just wanted to point out that for us, it doesn't matter that the doc ordering the IVIG is out of network. Our LLMD (who is out-of-network) orders IVIG and an in-network infusion company sends a nurse to our home to administer the IVIG. Can you get the doc to order it for home infusion?
  4. Have you looked for other infections? What are her total IGG/IGM levels? I trusted our LLMD when she dx my son 2.5 yrs ago with multiple infections based on clinical symptoms only. It was only after 2 years of treatment for infections and 4 IVIG treatments that he tested positive for the infections that he was being treated for all along. His immune system was not mounting a response to infections and therefore all tests had been negative (most infection panels that docs order are antibody-based and docs assume one's immune system is making antibodies when infection is present). My so
  5. I would like to add that some children with PANDAS/PANS also have immune deficiencies and therefore, they do not produce enough antibodies to properly fight infection. My DS16 also has a primary immune deficiency. In our search to find help for my son (who was 13 and a chronic case by then), we ended up at a Lyme-literate-medical-doctor (LLMD) who clinically diagnosed my son with multiple infections (some tick-borne). He was negative on all the infection panels except for strep and mycoplasma. But I trusted our doc and she aggressively treated him for Lyme, Babesia, Bartonella, Mycoplasma,
  6. It used to be the rule on this forum that doctors' full names should not be posted. Instead, we usually refer to docs by their initials and their location - like "Dr. G in North Carolina." Most likely most of us that have been around this forum for awhile will know who you are talking about. I have seen many recent posts with doctor's full names being listed - especially in the topic title. We owe it to our treating docs to use more discretion. Many docs treating Lyme and PANDAS are taking risks to treat patients with protocols outside of standard practices of treatment. Some docs
  7. My DS15 never has a normal WBC. LLMD thinks it's a combination of things: overload of infections, autoimmunity (PANS) and Babesia, which suppresses WBC production. His levels usually hover around 2.0. Family doc is urging us to see a hematologist but I know the hematologist will blame long-term antibiotic use. Last week his WBC dipped to 1.1 with a neutrophil count of 200. Yikes! Has anyone else experienced this with their child? Our LLMD expects this issue to resolve once he combats Babesia.
  8. My DD13 has a wicked case of some strain of Bartonella that we haven't figured out and she is the reason I was planning on going. However, she went to visit her grandparents home in PA (4 hours away) and went into a Bart flare as soon as she got there. I had to go retrieve her and bring her home since her gparents aren't understanding or comforting. I was bummed, as I was hoping to gain more insight about this awful disease. Our LLMD heard him speak and said he is awesome. Our doc also knows some of his story... Dr. B is convinced that his own father died of Bart (on the Eastern
  9. My DH had an imbedded tick a few weeks ago - I freaked out since I know first hand how much damage those little buggers can do. We left the tick attached and I sent him off to Patient First - an urgent care clinic. The clinic not only had the proper tick-removal tool, but they also gave my husband a prophylactic 30-day rx for doxycycline. I was impressed, to say the least. You might refer your friend to an urgent care clinic. According to our LLMD, the choice drug for a new tick bite is 2 Tindamax followed by 1 week of 1 Tindamax daily.
  10. Our LLMD prescribes everything for us - abx, IVIG, etc.
  11. I'd like to offer that one of the best things we have done for my son (and yes, it seems drastic) was put a central catheter in him. When we started IV abx in Jan 2012, doc ordered a Hickman (central IV line in his chest) to be inserted. He has refused to eat (fear of vomiting) and we were able to give him TPN through thte line instead of sticking a feeding tube in him. He gets monthly IVIG through the line. He gets daily IV abx. He gets weekly blood draws - blood is drawn directly from catheter. We give him hydration (Lactated Ringers) when he feels "funky," and it pe
  12. This is the doctor who is a veterinarian by trade who has done the most research on Bartonella strains. WEDNESDAY, July 17th, 7:00 p.m. Bartonella - An Emerging Disease Speaker: Dr. Edward Breitschwerdt, D.V.M. Where: Kennett Friends Meetinghouse, 250 N. Union Street (Rt. 82), Kennett Square, PA If you live anywhere in the area, make sure you make it to this meeting - it will be well worth it. Dr. Breitschwerdt has been studying Bartonella (a common tick-borne disease) for over 20 years and has written hundreds of papers. This is an organism that we all need to understand. Dr. Breitschwe
  13. My son was suicidal at age 9, 4 years before he was properly diagnosed with PANDAS/PANS and multiple infections. My mother's instinct told me to keep him safe, check in with the family doctor and seek out therapy. We chose not to take him to an ER because I knew it would cause him trauma. We also reduced his stress and removed sharp objects from his reach. We found out that the suicidal ideation (again, not knowing it was PANS-related) was most-likely OCD related. It was an obsessive thought that he might kill himself. He even had a plan. It was scary and confusing time for ou
  14. Bill's son and my DS15 have almost identical histories. My DS15 went undiagnosed for 9 years as well and by the time he was properly diagnosed with PANDAS (or PANS), 4 doctors considered him a tough, chronic case and told us he would definitely need IVIG. Rather than jump to IVIG since we would have had to pay 100% for it, we found an LLMD who uncovered infections the other docs were not willing to look for: Lyme, Babesia, Bartonella, EBV, Strep, Mycoplasma, yeast. We started with 8 months of oral antibiotics, antifungals, antivirals with some success. Eventually moved to IV abx, antif
  15. My son gets HD-IVIG every 4 weeks - we use Gammaked, which is identical to Gamunex. Octagam is stabilized with sugar, some other brands are not. Here is a good chart comparing each brand: http://www.bdipharma.com/Comparison%20Chart%202013/Intravenous_Immune_Globulin.pdf Lots of people post that their children have side effects from IVIG. My son has never had nausea, vomiting or headaches with his monthly IVIG treatments. Our doc also does not use steroids. Instead, our doc pre-hydrates before each infusion with 400mg Mag Sulfate/25g Vitamin C. We also dose 600mg Ibuprofen eve
  16. Sorry to hijack this post... But I'm wondering if you who have done PEX with your children have gotten it covered by insurance. If you have, what dx code was used?
  17. I was told that Brian Fallon does not take pediatric cases.
  18. Not sure how old your daughter is. Both of my children took oral Rifampin and Levaquin. My DD13 is currently being treated for Bart with IV abx - Rifampin and Zosyn. We have had a difficult time getting rid of Bart in her. Have you considered IV drugs? It was the best decision for our son, who had mostly psychiatric symptoms.
  19. My DS15 has follows very rigid rules of social behavior and it's mostly based in his OCD. When we went to Rothman last winter for ERP therapy, his therapist actually had him practice breaking social rules by cursing and even telling little white lies. He did this to demonstrate to my son that nothing bad would happen when he broke minor social rules. My son was sure that God would strike him dead or something else horrible if he broke a rule (e.g. No foul language, no lying). He still struggles with grey areas and he holds everyone around him to the same standards he holds himself.
  20. We have been tackling infections with DS15 for 26 months now. The last 18 months, he has been on daily IV meds for Lyme, Mycoplasma, Strep, Babesia, Bartonella. The last 6 months, we had hoped that we had infections knocked down enough (but hard to tell b/c he has an immune deficiency) that we thought he was ready for IVIG to do the rest of the clean-up of residual PANS symptoms. And it just so happened that the insurance company finally agreed to pay for IVIG at this time. He has had 6 HD-IVIG since January. He has had no change in his symptoms. So now we must consider other is
  21. My DS15 was diagnosed age 13 with PANDAS. 6 months later after seeing 4 PANDAS specialists, and not being able to find the help we needed because he was so chronic and had gone undiagnosed for so long, we ended up at an LLMD who found multiple infections. My son's medical issues have now become, sadly enough, my hobby. I research, read anything I can get my hands on, participate in this forum, attend conferences, etc. I have the knowledge that mental illness and in our case, autism (Asperger's) has a huge medical component. Using my gathered knowledge, I look at people with mental i
  22. What dose? What brand? Any side effects/herxing I should look for?
  23. philamom- Please PM the info for Dr. Sw. Jenkintown is near where I grew up. To all of you that have replied -- I cannot thank you enough for responding. I am always encouraged that there are others out there like me dealing with this "weird" stuff. Thank goodness you all understand.
  24. Thanks everyone. mama2alex - PMd you. tpotter - would you be willing to share your ART practitioner's info with me? We live 1.5 hours from your area so we could travel there. We have a good one here who studied under Klinghardt, but I cannot afford him and he doesn't just charge for ART - he's an integrative dentist who puts everyone on TMJ therapy first b/c he says he have to correct TMJ in order to do ART. I believe this is true, but I cannot do everything at once. Also have an appt with a PANDAS-friendly ENT for possible tonsillectomy for DS15. We cannot irridicate his stre
  25. LLMD admitted today that I have 2 of the sickest and slowest-progressing kids that she's ever seen. Lyme, Bartonella, Babesia, EBV, Mycoplasma, Strep. They both have central IV lines and we've been treating with IV meds for 18 months. Son also gets HD-IVIG once a month. Tons of supplements and ILADS protocols are being used. Yes, we have addressed methylation too. Daughter is mold susceptible according to HLA testing. Tested C4a in both children and both were normal. LLMD put calls into 2 of the well-known LLMDs to ask advice. I'm thinking it has to be mold that i
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