philamom

Thanks Jill. Looking forward to it, get some rest first!

Thank you!

Hi Jill, You are definetely moving mountains girl! I'm so impressed with your cross country hike and equally estatic to hear your daughter is doing well post ivig! I hope at the 12 wk mark you will see even more gains!!!

Thank you for this information. I am going to ask my daughter's ped to order it. Can she fax them over a prescription or do I need to call first to order the test? Thank you for posting your daughter's story. I wish you the best!

I'm sorry. I can't find it. Or was it for someone else?

This was mentioned before before but thought it was worth repeating. IgeneX holds the blood sample for 3 months, so you can always run additional test at a later time with another signature from your doctor. They can fax it over. My only regret was I ran the Basic Western Blot Lyme Panel ($200?) which only requires the serum and when I requested additional co-infections at a later time, there was a few I couldn't do (needed whole blood). I wish I would have ordered the Inital Lyme screening ($400?) from the beginning. But the price...Ouch! We have a positive result, so in the long run it's saving me money because of all the other treatment we were seeking. Now i can begin to do things right...get the right antibiotics...and start to get some results! I hope this makes sense. I'm rushing to type before my daughter comes in to the room. She doesn't even know she has Lyme yet...a month ago, a friend had a tic on her and for days afterwards my daughter asked me constantly "do i have a tic on me?" 30 times a day! I guess i should have checked

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I don't have any info. on the elevated C3D but wanted to say that heartburn/reflux and GI distress is on the symptom list for Lyme. Look at the symptoms of Lyme Disease "The Basics" at www.LymePa.org. You could also Call IgeneX and ask them.

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. Can a parasite be the trigger? When I read your comments it gave me goosebumps. A year ago we were camping for a few days and at the end he started with extreme stomache aches for 3 mos. We then found our current Dr. and she put him on gluten-free diet which helped pretty quickly. Since then he has continually been getting sick and was diagnosed with PANDAS when he never fully recoverd from his illness this March. You really bring up an interesting point. At our last Dr. visit we had decided to re-test him for the parasite just to make sure it is gone. Cannot remember what it was but you can get it from rivers, lakes etc. Thank you for much for your insight! Yes, in our situation most illnesses and (parasite) infections do. It sounds like Giardia. My daughter had this in February. I would recheck for that and whatever else they can run in a stool sample.

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Thank you!

My understanding is that Mycoplasma can cause a positive 41. I just found out my daughter has Lyme and she also has slightly elevated Mycoplasma titers. I was told elevated Mycoplasma is common in Lyme patients. I don't know...maybe someone else can chime in.

How do you post a reply without repeating the initial post? Sorry...how embarrasing!

Hi Melinda, I'm a newbie here too. My dd(6) got diagnosed with PANDAS 1 month ago. I'm so sorry about all you have been through! I see that your daughter struggles with Clostridium. My daughter just finished 2 weeks of Flagyl for high Clostridium levels. I was shocked to see how high her clostridium markers were (over 5x the normal limit). I was wondering why your daughter keeps getting reinfected. Is it from antibiotics? I have seen such improvement with my daughter's tics since starting the Flagyl and I'm worried that all the progress we made will be lost now that she's not on it anymore. Do you know if there is anything you can give to keep clostridium away? I have my daughter on high levels of probiotics and I'm adding s. boulardi but I don't know what specifically targets clostridium. Any suggestions? Caring Mom Caring Mom- I didn't realize you could test for markers...Quest Labs just writes "detected" on results. I was told in 2006/2007 that it was the probably the same infection, just not properly treated. I'm not so sure...my daughter was on constant abx due to sinus infections. Just recently, i think it was because she was on 12 weeks of prevacid which lowers the stomach acid, leaving you vulnerable to other GI infections. Could be wrong though. Was your daughter retested? I always give my daughter Florastor in the morning and now experimenting with different probiotics in the evening (culturelle, custom probiotics, VSL#3). I also give her good belly non-dairy individual drinks (found at whole fields). Good Luck and please keep me posted! Hi Melinda, My daughter did a urine test through Great Plains Lab. The urine test also tested for yeast/fungal metabolites (also came out very high despite us being on an very strict and extreme anti-yeast diet for 16 months now!!), bacterial metabolites (including clostridia markers) and some other indicators that I have no idea what they are:) My daughter had three separate sinus infections in an 8 month period. They were about 8-10 weeks apart from each other. Her tics went away after the first two infections but only temporarily. They stayed after the third sinus infection and are still here. She was originally diagnosed with Tourettes and most recently PANDAS. I have the people on this forum to thank for that. After reading the countless stories that people poste here I realized my daughter might have something else going on. Right now I have my daughter on Custom Probiotics (lactate free)twice a day and am going to be adding the s. boulardii tomorrow. She is on Fluconazole and Azith 2x/day. I heard about Culturelle supposedly targeting clostridium but with everything else that she is on I don't know if we can add that as well. I guess it couldn't hurt? Anyone want to chime in? Take care Melinda! Caring Mom edit

My daughter was pulling at her eyelashes and eyebrows. It has resolved with IVIG.

Hi Melinda, I'm a newbie here too. My dd(6) got diagnosed with PANDAS 1 month ago. I'm so sorry about all you have been through! I see that your daughter struggles with Clostridium. My daughter just finished 2 weeks of Flagyl for high Clostridium levels. I was shocked to see how high her clostridium markers were (over 5x the normal limit). I was wondering why your daughter keeps getting reinfected. Is it from antibiotics? I have seen such improvement with my daughter's tics since starting the Flagyl and I'm worried that all the progress we made will be lost now that she's not on it anymore. Do you know if there is anything you can give to keep clostridium away? I have my daughter on high levels of probiotics and I'm adding s. boulardi but I don't know what specifically targets clostridium. Any suggestions? Caring Mom edit

I really need to stress the importance of running the Igenex test before pursuing IVIG/PEX treatments. Like Wendy has stated in previous posts, if this in an underlying cause, IVIG won't be as effective until your on the right course of abxs. Plus, if your paying for it (like we did for the first one) you want to rule it out. Also, after IVIG (I think) you have to wait a certain amount of time before checking for Lyme.

We did our IgeneX test thru Quest Lab. We were running other labs so they didn't even charge for a drawing fee. You take the kit from IgeneX and have them spin the blood into serum or just use the whole blood depending on the test(s) you order. It must be shipped on Mon, Tues, Wed...i think. Look at the form. Also, a doctor must sign the form.

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Are you sure the parasite is gone? Was he retested to be sure? It could be a trigger.

Yes, I know. I've been to CHOP (Neurology and Dr. Elia) with no success! I deal with Dr. K, Dr. Trifileti, and most recent--Dr. B. (Truly Remarkable Doctors!!)

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You may want to try some Tums to see if that helps. My daughter also stopped eating and quickly lost weight and that's when we started the Prevacid. Try eliminating citrus fruits, anythng acidic, and chocolate. We were told not to give Motrin/Advil in case it was due to ulcers. We also put 2 blocks of wood under the head of the bed....you just can't raise the pillows. We are still dealing with a fear of vomiting...not as severe. My daughter used to ask me at least 50 times a day "am i going to throw-up". Johnsmom, I've been lurking and plan to post my daughter's story tommorow but wanted to comment. Is your son still on 250 Aug twice a day? You may want to comment to Dr. K about the heartburn. Six months after Ivig with Dr. K my daughter was having difficulties swallowing her antibiotic. She then vomited one morning and two weeks later (out of the blue) began with SEVERE heartburn. This then led to a SEVERE fear of choking and vomiting and she was unable to leave our house for three months. I'm pretty sure she contracted strep right before it began (of course negative culture/titer) because a friend had it in her classroom. When I contacted Dr. K he thought it was definetly due to the PANDAS. Her GI doctor prescribed prevacid for 12 weeks and we raised the head of her bed...she also had a lot of problems at night time. We eventually did IVIG again...but i'll post tomorrow. Maybe Dr. K may want to increase the Augmentin slightly higher for 14 days...I know you recently thought your son had strep after IVIG? Thinking of you-