philamom

Ironically, I was reading this post on Friday during my daughter's check-up at the dentist. The receptionist was talking on the phone loudly about how the child had to receive Nitrous Oxide (assuming for a cavity). It sent chills up my spine. Fortuantely, no cavities on my end. on another note- my daughter who used to react to dental cleanings, no longer does. Two in a row now with no reaction. Yay.

Certain bands are lyme specific, and yes "something" was seen. When I first had the Igenex test done on my daughter (ordered by my then daughter's ped at my request) it was positive for IGM. But I was still uncertain about cross-reaction with one of the bands, so I ran the 31 epitope (?- it's been a while) follow-up. When we had our first appt with an LLMD a month later, he said the follow up test was a waste of money since there was something at the 83-93 band. We went on to find Bartonella, RMSf, and more recently - a positive culture for lyme with Advanced Lab. I would make an appt. with an LLMD. They will help you sort things out. If you or your child tests positive for Babesia (tick borne co-infection) you will need something other than antibiotics to get rid of it.

Can u volunteer for more than one day? ditto- way to go Jodie!!

You will need a magnifying glass to see if you have the tick in the bag. If you do, add a slightly moist cotton ball or blade of grass in the event you might send out for testing. You can find photos of all types of ticks at www.tickencounter.org

The IND at band 31 & 83-93 is enough evidence to suggest treatment. My advice would be to find an LLMD.

Good point with the chapsticks. My dd has a fixation with them - 40+ collection. I sometimes purchase the travel size toothpaste tubes when on sale.

mommakath- may I ask what dosage you are using for the monthly ivig's?

Thanks LLM. I had an appt. last week with our local DO for something else, but asked his opinion on my positive A1298C mutation. He just told me to supplement with B vit and folic acid. Isn't that misguided for this mutation? I have an appt. with the ordering doctor on the 13th. I also tested positive for HLA-DQ8 (one of the variants associated with celiac disease), but all other testing performed for celiac was normal (quest). I did get our local DO to write a script for MTHFR on dd. Had it done on Thursday.

Can you refresh my memory on what is TMG/DMG? thx

Me too. Thx

Just throwing out an idea, as I really don't have the answer. Since Lyme is involved, is it possible the "herx" reaction could be associated more with the prednisone as opposed to the IVIg itself? The first couple ivig"s we didn't use prednisone. But she has a fear of vomiting and found the small amount to hold back the side effect. But I do agree, it makes her very irritable.

Could be everything you've done prior has allowed the abx to be more effective. What abx was prescribed? Anyway, so happy for you.

Kimflow- I was basically given the same explanation as Orion. My dd had a couple IVIG's before lyme diagnosis and 3 while on lyme abx protocol. The herx was horrendous. We were doing them every 3-4 months. Between 1st and 2nd it was almost a year. Her immunologist suggested they should be every 8 weeks. I was hesitant since her post flair would last 2-3 months. Well, once we started every 8 weeks she no longer herxed as much. Her post symptoms now last about 2 weeks, maybe a little longer. She even tells me she loves me the night b4 the infusion because she realizes she'll be mean for a while edit- wanted to mention that I give dd prednisone (15mg dissolvable tablet) on days of infusion. That seems to work for her.

I'm pretty sure dr b checked my daughter's immunity at her first appointment. She had no immunity. I will check when I get home.

awesome phila -- me too! i can't find too much info -- a1298c doesn't seem as discussed or researched as c677t. surprised to see my pandas ds is neg for all mutations. there does seem to be some realtion btween a1298c and b12. my neurologist tested me for this b/c i asked while she was doing other blood work. she is blowing off result but also found me low on b12 and is giving me shots (i see her for migraine headaches). so i kind of feel i'm sort of doing something about it while trying to figure our what to do. please let me knwo what you discover. I have a follow up with the ordering doctor on the 16th. I'll let you know what she says.

Thanks.

My daughter is positive for RMSF IgG through Quest. When first tested in Sept 2010 her titer was 1:256 (normal is <1:64). She has since gone down to 1:64, but still positive. She is positive for lyme and bart too. Her liver functions are always off and she is also always low or borderline normal in vitamin D.

It is a Labcorp test called "MTHFR DNA Analysis," (test #511238). Dr. T is familiar with it and will order it for you. I had it done through Quest- is there a difference?

Ok, I'm going to have go back and read all these MTHFR posts. I am heterozygous for the A1298C mutation and negative (normal) for the C677T mutation. I guess this is more evidence that I should have my daughter tested as well? husband too? thanks.

Oh, but you are very strong and organized! You are taking care of your son and you will both feel better one day. So by all means, appaud yourself. Anyone dealing with chronic illness, whether it be a family member(s), themselves, or both, should be proud of all they are accomplishing, even if baby steps.

That was interesting. I had to read it again today to wrap my head around all of it. Makes a lot of sense though. Thank you. That's very interesting. Do you believe your daughters lyme is congenital? just curious. It was your daughter that did the culture test and was positive, right? possibly, or we both got it at the time of her tick bite- i cant remember if i used my fingers to remove it. but she's had off/on issues since 18 months and then things went haywire after the tick bite. i was positive on the igenex wb dec 2010. just ran neuroscience lyme immune id on myself last week but dont have the results back yet. Yes, my daughter cultured positive with advanced lab in december, a year after lyme treatment, 5 years after tick bite. Of course, she could have been reinfected - who knows.

benadryl & motrin every 6 hours. lots of fluids before/during/after infusion.

burber from nutramedix

oh wow - I have to forward this one. so funny! thx

My daughter's 83-93 was originally ++positive and continues to show up every time +positive. It's been well over a year. Very persistent.