philamom

EBV, C. Albicans IGM, IGG, IGA In my daughter's case I check sed rate, c-reactive protein, liver functions, ANA, DNA (DS) Antibody, CMP, CBC, Circulating Immune Complexes, and of course the ones you mentioned. This is not Dr T's list of labs - can't help you there. Sorry to hear something is brewing again - right there with ya. It seems it never ends!

How did the protest go?

bumping

How about the drug resistance gene to Methicillin - is that Amoxicillin?

No strep strain

Thanks for the link! Gives some good explanations/suggestions. Dd tests negative for Babesia, but we all know how relaible testing is.

Was wondering if anyone could offer advice/opinion on my daughter's results. Thanks. Sensitivity- Fungi: Unable to determine sensitivity to pharmaceuticals and botanicals due to the lack of growth of fungi in vitro. Gastro Function Profile: Predominant Bacteria- normal (bacteroides sp. borderline normal/high) Opportunistic Bacteria- no clinically significant amounts Pathogenic Bacteria- normal Yeast/Fungi- Positive for Saccharomyces sp. +2 =>1000 Parasites- Positve. Parasite present, taxonomy unavailable (indicates an ingested protozoan and not a human parasite) Adiposity- normal Drug Resistance Genes- Positive (mecaA- Methicillin) Beneficial SCFA: Total SCFA- Low n-Butyrate- Low Acetate %- Low Buturate- normal Propionate- High Valerate- High Inflammation: Lactoferrin- High (usually found in Chrohn's, UC or infection) Immunology: Fecal sigA- normal Anti-gliadin sigA- High (gluten sensitivity) WBCs- normal Mucus- negative PH- normal, RBC's negative Digestion - normal Absorption: LCFAs- normal Total Fat- High Cholesterol- High (high total fat as does fecal cholesterol usually signals malabsorption)

Gosh...so lucky you saw it. Was it in the belly button? Glad to hear she is being treated - keep appt with the lyme doctor and occasionally check for a cancellation.

I know your daughter reacts easily to meds/supps (as does mine), so if it was my child I would start with a kids or baby version of probiotics. The Culturelle kids packet has 15 billion per packet. You could even start with 1/2 or 1/4 packet daily or every other day. You can slowly add more or switch/add a different brand. I recently started my daughter on Nystatin for yeast (second time on it). She was to take 1 pill twice daily (I think most children do at least 3 pills daily) but her herx was so bad that we had to take it down to one pill daily. After 5 days, I will try to incease back to twice daily. If the once daily remains a problem, I will try once daily every other day for a while. You might try something like this. Its important to be on some type of probiotic while on abx - my opinion.

Hi. My daughter is on her third day of Nystatin and can't get out of bed. She is herxing from it. The same thing happened in August when she was first put on it. We stopped it mid- Sept to run some stool tests. In August, the herx lasted about a week (if I remember correctly). Symptoms: severe headache, nausea,joint pain, difficulty talking, and increased behavioral symptoms. My dd reacts to all meds/supps though. This is most likely die-off from the yeast.

Agree with S&S, some probiotics are necessary. I remember you mentioning that your dd reacts to probiotics, maybe you could start out really small - one probiotic pearl (drugstore) every other day or every third day. Then try to increase or switch to a better brand. S&S (or anyone)- what do you recommend for liver support besides milk thistle? My dd reacted to milk thistle so I stopped. My daughter's LFT's are back in the normal range (happy about that), but unfortunately, her sed rate is climbing back up.

Thanks Connie for sharing. That doctor is right around the corner from me

Yeah!!!

edit- figured out how to make a donation.

My dd was on Amoxicillin, Azith, Minocin, and Tindamax on weekends. We dropped the weekend Tindamax after 9 months, because my dd was unable to tolerate Tindamax while receiving IVIG. Her LLMD suggested she continue IVIG over the Tindamax. My daughter is currently on Amox only though.

Let me know if you have any questions regarding the Advanced Lab lyme culture test - my daughter cultured positive (high) in December. We received a photo with three spriochettes shown in it. The downside is the test still can miss 20% of lyme results (may not be in that sample). And of course, it doesn't check for co-infections. Wasn't your dd positive for bartonella? My daughter was positive with Specialty lab (Quest) for ten months, but recently started testing negative. At the exact time she started testing negative, Specialty Lab started sending her results within the regular labs done with Quest -before it was sent separately by Specialty. I don't know if they changed their testing procedure, but I still think my daughter is dealing with bartonella. Bartonella is hard to get rid of. Also, have you tested for yeast (blood & stool)? edit- we are also in a minor flair since my daughter's last ivig. She is dealing with a vomting phobia (which she's been dealing with off/on for a while - but severe at the moment). But what we are seeing that we have not seen in over a year, is a return of intrusive thoughts and extreme difficulty with decisions. She keeps asking when her next IVIG will be, because it has helped in that area before. I also want to be off this roller coaster ride. Hang in there!

Did you stay at the West house, or the larger, busier house? thx

My daughter has been begging me to take her to an eye doctor lately. With all thats been going on, haven't had a chance to take it a step further. It came on so sudden about 6-8 weeks ago (b4 school started).

Can you walk to the Rothman Center from both Ronald McDonald houses?

Thanks Wombat- I'll check out the link. Good luck with your Honours degree!

Yes, how silly of me. I agree- my dd is at a point where she can handle the therapy... I think. I hope your daughter feels better soon!

Whats BMT stand for?

For those of you that stayed at the Ronald McDonald House, did any of your kiddos have a fight/flight fear response before heading over to USF for ERP. How was it perceived? I'm concerned about the scene my daughter might make - being in front of families that are dealing with much bigger issues (bone marrow transplants, exc). I have no problems with forcing her, but it will probably be a battle at first (day 2-5). Thoughts? Also, for those who stayed elsewhere could you share some details. And, if your child was seen for a fear of vomiting- would you share your experience. You can pm if you prefer. Thanks! Don't have this lined up yet, but considering my options. dcmom- thanks for replying to my pm.

I feel for your daughter. My daughter is not dealing with your level of OCD, but is working on ERP for a severe fear of vomiting and a severe fear of her classmates vomiting. The ERP is very, very difficult. We are working on both exposures each day. She is also often sad and quiet afterwards - it takes alot out of them. Hopefully, your dd will continue to try. SmartyJ posted a website that I've found to be very helpful- www.anxietybc.com. They even have videos of teens sharing their progress with ERP. Good luck with the Minocin.

I also used "racing" for my daughter when she had to take liquid medicine. I would have one of her stuffed animals trot a lap around the table to see who could finish first. Sometimes the stuffed animal would take a fall off the table (and start from the beginning) to allow her some extra time. The stuffed animal would then give her a victory hug or high five after she won.