philamom

I agree. After being off abx for a few months, my dd's Igenex WB IgM & IgG in December was lit up. First time in over a year IgG was positive. She also cultured positive with Advanced lab. Went back on abx in Feb. and now her IgG is negative again. I think the abx vacation allowed it to frequent more in the blood stream and less in cyst form.

On the site posted- "failure to detect Bartonella Species DNA in a patient sample does NOT rule out a diagnosis of bartonellosis. Bartonella ePCR was diagnosed to overcome the false negative problem in Bartonella detection, however, this bacteria is ELUSIVE and INFECTS at low levels." Of course, we all knew that.

I did the tripe draw. The risk of missing bart is not worth doing a single draw. I even had my dog tested to make sure he was not the source of my bart. I was lucky as my Vet did not mark up the cost of the test. They have been testing animals for years at NCSU vet school. This test has only become available for humans since last fall. Thanks for sharing red. I heard a lot of wonderful things about Edward Breit. My daughter has tested positive continuosly for over a year, but has recently tested negative. The lab we were using made some changes and our LLMD said they were having some issues with it. Sorry for your diagnosis.

Thats great. Did you do the triple or single draw?

Under the FAQ section it mentions that they don't accept insurance but will give you a form with cpt codes to submit. Although, it didn't sound like it was easily reimbursed, if at all. They suggest a triple draw (m-w-f) at $550. Bart cycles in and out of the blood 5-7 days. They have never seen 3 positives from one patient. Single draw is $360.

Our LLMD states that IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction.

It was just a blood draw - no swab so he didn't have to worry about that. Oh, WOW. I think dad now has a new chore. lol

Yes, I meant the Igenex Western blot is fine while on abx. We also have ordered Igenex B. duncani & babesia fish while on abx.

No need to take your child off abx for the Western Blot (IGM/IGG).

Go figure. Did hubby make certain they did a thorough swab?

Thats terrible! Is this a precert test for CVID or PANDAS? Sorry for your day.

Thank you for responding michiganpandas. It sounds like an excellent therapy program! I will reach out to you in a few days with some question, as I'm sure you are exhausted. Have a safe trip home (what's left of it). Thanks again.

dcmom- I would like to look into this 3 week program for my daughter. How do you go about contacting Dr. Storch? You gave me some great advice before when my daughter was dealing with a severe fear of vomiting back in January-March. Since resuming abx (off them for 5 months) she is doing much better. She no longer has the severe nausea (some - but not like before) so her fear of vomiting is not as bad, but still present. Does the child get screened for OCD before getting accepted? What if fear of vomiting is the only OCD issue at the time - can they be denied? Would love to hear more on how this program is initiated, if you have the time. Did you need to fly down for an evaluation and return for the program at a later date? Did you need to get letters from doctors, teachers, exc? Thanks in advance? also- I remember you mentioning that Drexel may have a program. I sort of looked into it, but think it may have been for adults. I need to google again.

Hi LLM. Sorry to hear some symptoms have returned. Did you take her off abx? If I remember correctly from one of your post, you were considering it? Hope you see improvement with the fungal treatment.

No, but am going to look thru this list tonight. DD sees our LLMD on Tuesday and she's having GERD issues and allergy issues again. So I'm kinda stuck on which way to turn (don't think infection is an issue). I've been looking for test ideas and this list is a good place to start. Am thinking we're missing a piece. For your DD, I think some of the tests you could skip - e.g. the biopterin - since you know chronic infection is a component. Have you tested for metals yet? I think I'll print out this list and run it by our LLMD. I'll let you know if the conversation goes anywhere. No, I haven't tested for metals. Next on my list is KPU urine test. Never got around to it. Good luck with your appt.

Has anyone ordered any of the tests this doctor mentions? I'm assuming most are not covered by insurance? thx

Any thoughts on this doctor? He mentions A1298C MTHFR disrupts functions of the BH4 cycle. BH4 is critical for 1)breakdown of ammonia 2) assist breakdown of Phenylalanine 3) helps neurotransmitters 4) cofactor to produce Nitrous Oxide. I ran the OAT test on my daughter a year and a half ago and it came back with very high Phenylactic. Phenyllactic acid is a metabolite of phenylalanine. Her ammonia level was checked a year ago with LabCorp - it was normal though - 72 (ref range is 19-87). edit-forgot to mention my daughter and I have the A1298C MTHFR (heter) mutation.

wow...Interesting that her triglycerides went up so much! Well, it took almost three months to get my daughter on full strength Amox. It's been 7 weeks now. Her Triglycerides are back to normal (75- was in 200's), Total Cholesterol is still abnormal low but rising (120- almost normal). Her sed rate is 53 (coming down from 90's), C-Reactive is now normal. Wbc/Rbc is now normal. Total Iron,binding & capacity are now normal. ANA is still positive but her hexagonal phase confirm is finally negative.

Ok, like myself, my daughter is positive for the A1298 gene (heterozygous). So, would she fall under category 1 or 2? Could you give me some more info. on TMG - is it a supplement you can purchase at whole fields? Thanks :-)

I mentioned this before, but, the invasive plant "Japanese Barberry" could increase your risk of contracting Lyme disease by 40%. Many homeowners plant this popular shrub around their house and property without knowing the risk involved. Perfect environment for ticks.

Good luck - hope it brings some relief!! Any update on Dr. E?

You should speaker to your doctor about this. Maybe he could prescribe Minocin for a while instead. My daughter had no issues in the sun while on minocin - with sunscreen.

Extending you a cyber hug!!

fwiw- when I originally tested dd with Igenex (thru ped) I ran the complete panel. All her co-infections were negative. When we had our initial appt. with LLMD a month later he was certain she had Bartonella and tested by another lab, which she was positive. Glad to hear your son is doing well but keep an eye on things.

Please, please post this on the lyme forum. You need to see an LLMD asap. I have to run but will post later. There are some great LLMD's in CT and Dr. Bouboulis for PANDAS in CT.