philamom

Hi Susan. I hate all these unreliable tests. I did run the culture from advanced lab, so let me know if you have any questions. But you still have the issue of co-infections. The advanced lab test is for borrelia only. And it's not cheap - 595. But no denying a positive. In the beginning of our lyme treatment we ran the entire panel from Igenex. My daughter was only positive for the borrelia, none of the other TBI's. We than checked for bartonella through Specialty (division of quest) and it was positive.

Yay! I'll take the number of your GQ guy - we have a couple of ground hogs that are driving me crazy. lol

I would get it done now to help with getting the IEP.

Interesting. My daughter's thyroid labs are normal. My daughter is the opposite- abnormal low total cholesterol since Sept, but elevated trigylecerides since Dec. Her Sed rate, which has been in the 90s since Sept is now 77. Still very high - should be <20.

My daughter's cholesterol results continue to be out of whack. I know it's infection driven, because along with some other labs it drastically changed since Sept. Prior testings were normal. Nothing has changed with her diet.

I do believe we had tested for PANDAS long ago, but I will double check this week. Unfortunately, there is no definitive test for PANDAS. Some doctors will say it is not PANDAS if strep titers [ASO/D-Nase B] are negative or if you have a negative throat culture. That is not necessarily the case. Given their history with strep I would certainly look into it again. Plus, other infections may cause symptoms as well (PANS). You can post on the PANDAS forum for guidance if needed.

July 1st

Dr. T will now be administering IVIG at his location (PANDAS/PANS Clinic)

In my dd7, die off looks like PANDAS, whatever that means. Hyper, IRRITABLE, impulsive, vocal noises (or tics?) just to be irritating, not sleeping well- she will often 'take it out' on little sister- holds it together at school- stomach pains. Anxiety. Her OCD has greatly improved, now it comes out by asking for verbal re-assurance about a situation- but manageable. In a nutshell for us (minus the vocal tics). Also, frequent nightmares.

Thanks! . I ordered some of the Coleman wipes (IR3535 20%) to compare to the other wipes I ordered (picaridin 20%). I'll try them in Fl if there are Mosquitos. I could do one type of wipe on each side of my body to see what works best (at least for Mosquitos). Just an fyi on the coleman wipes- the package is difficult to close (at least the one I purchased). I could see my daughter not closing it all the way and them drying up. If your dd takes them to camp you may want to place in a ziplock bag. I sure hope it's the IR3535 that is the protection factor and not something else combined with it in the Avon line, because I actually prefer the unscented coleman products. I'm not crazy on the "gentle breeze" scent in avon.

There is a company that uses tick boxes (Maxforce Tick Management System). I think they advertise to be better than the tubes, but also a lot more pricey. Boxes are child resistant. www.tickboxtcs.com (not available in all states)

Wonderful - thank you for sharing.

Thanks for sharing Priscilla. I'm so glad to hear your daughter is off antibiotics and doing great. Can you share what has helped her to get to that point. Did you detox for the metals? My daughter lost a tooth with an amalgram filling a few weeks ago - YAY. Two left- I think. I found a great new dentist that doesn't use them, so never again.

Yes, I caught the Tennessee after I posted. Poor Kiddo. I probably would dose Motrin around the clock and discuss extending the doxy, especially if symptoms are still present after 14 days.

I would use the Daminix tubes. Just be careful with your 2yr old.

I am so sorry. Does he have an all over body rash? The symptoms you mentioned can be from lyme and/or any of the co-infections, but I'm assuming they ran a blood test, or was it a clinical diagnosis? An acute infection of RMSF can be very dangerous so make sure he is being treated properly. What antibiotic was he given and for how long? I think there may be different strains of RMSF depending on where you are located.

Crazy- everyone coming up with the mutation. I haven't had a chance to read the article yet, but always get lost when trying to follow the MTHFR posts. I just got tested today and my daughter will in a few weeks. I hope y'all will be able to guide me some with the different mutations. Do you know if IVIG will affect the results? Thanks for posting the link LLM.

For worrying, the younger kids might enjoy Felix and the Worrier by Rosemary Wells, Wemberly Worried by Kevin Henkes and Is a Worry Worrying you? by Ferida Wolff/Harriet May Savitz.

Silly men. You're too kind - not the words I was thinking. I told him he better be good, because lousy golfers get lyme disease.

Just pulled a tick off my husband's golf shoes. I asked him to put them in the garage on Monday so that I could spray them. Well, I just took them out of the bag they were in and there was a tick in the bag. It's so small. I moved it into a smaller baggie so I can show my family just how tiny they are. I hope this is a wake up call to my husband who feels I nag him too much and constantly tells me that he never sees any ticks while golfing...not to worry.

Yeah, I wouldn't want to spray this near food to be eaten. Thanks for the link dcmom.

wow that is proof positive! - I wonder what the CDC/IDSA response would be to have the photo of the Spirochetes and the negative Elisa! Yeah...also this test could be a game changer for the claim that there is no proof of chronic Lyme and 3 weeks of doxycycline will be enough. After all, the Lyme naysayers will say the Igenex tests (if you are positive through Igenex) is just giving you a false positive. But, if you have the culture, they can't debate that. Agree. This was after a year of treatment for lyme & then 3 months off antibiotics b4 testing. Also, ran Igenex a month prior to the culture test, which was also positive. The only negative result was the Elisa.

Philamom, did you get anything back on the new Lyme culture test? No. I didn't fight real hard. I'm afraid to throw out any red flags, since so far, our insurance has covered almost everything.

Sorry...it's fixed. Tried again - still not working.

Yes, he does not recommend stopping abx to run this test. My daughter was off abx for other reasons, so we decided to take advantage of it and order it. She resumed abx shortly after.