philamom

Wendy- How did he come to the conclusion that your son is in the cyst stage? Is it because of the length of time he's been on the abxs with cycles of herxng or is it because of the length of the illness? Thank you -Melinda

SF Mom- It sounds like you had a GREAT appointment today...I wish I could find someone local for help. May I ask if you are using the flagyl as the cyst buster? Melinda

I ran the Basic Panel and when it came back positive, I had the co-infections done on the same sample. My daughter's ped just faxed over a new slip. But, there were a couple co-infections that couldn't be done without whole blood sample. So in hindsight, I wish I would've done the Complete Lyme Panel, which includes you sending in serum and whole blood.

I believe when I called Igenex they said 4 weeks post ivig would be fine. We waited 10 weeks post ivig and received a positive IgM & negative IgG Western Blot.

Jill- I sometimes use the walk in clinic at Walgreens at 5 points. They should be helpful with a note from Dr. K. I don't discuss PANDAS,I just mention my daughter gets strep without the traditional symptoms. I go there to get cultured when I have a sore throat...long wait though. Melinda

Jill- Call me when you return! It seems my ped is a little more understanding--even prefers to work with other doctors who are more knowledgable about PANDAS. Hope the girls are feeling better and try to get some R&R on the cruise...please have a pina colada for me! Melinda

Gatito- Is the vomiting a side efect from the Mepron? Or is it believed to be herxing from the Lyme? I recall you mentioning she vomited on the way to Dr. Jones appointment? Good Luck with the IVIG this week! Tell Louise about the vomiting, so she can give her extra fluids. Melinda

Great news about your daughter!

No Flu shots here...not even the Nasal Mist!

Also, what's the screening process of Lyme for the IVIG? Is it the regular western blot that is usually negative anyhow? Scary!

GREAT question! I also was wondering this as well! Melinda

Thanks Elizabeth! I'll look into them. How about the charcoal brand? Again, mixing 1 Tbsp daily into applesauce but can't seem to increase. She is starting to get tired of the daily applesauce.

Elizabeth- My daughter is the same way...she won't take it if she can taste it. She can also only swallow very small pills. I have her on 1 adult scoop of the Custom Probiotcs mixed in applesauce with Lots of Cinnamon but if I increase, she can taste it. Can you give me the brand name of the Probiotic and Charcoal pills? On a side note for all, Whole Fields WILL let you return opened products if you mention your child can't tolerate the taste...even foods. Melinda

Thank you Dut! I can't see my husband buying into the gritty oreo types either

Dut- May I asked what Udi's stand for?

Thanks for the great info. Can you recommend some good GF pasta? Can SAM E bread be purchased at whole fields?

Immunoglobulins A,G,M Immunoglobulin G Subclasses Panel (1,2,3,4) Immunoglobulin G, Serum Tetanus Antitoxoid Antibody (EIA) AB Haemophilus Influenza Type B IGG Streptococcus Pneumoniae IGG AB Serotypes CBC with Diff EBV Mycoplasma Pneumoniae Antibodies (IGG,IGM)

We used the lidocaine cream last ivig and it actually flatened my daughter's vein. After applying heat they were then able to get the needle in. But, it took some extra time.

Martin Fried, MD (GASTRO doctor who treats Lyme. He has info on his web site). Colts Neck, NJ Our Quest lab draws the blood (drawing fee) and then you ship it Fed Ex. Igenex requires it to be shipped out on Mon, Tues, Wednesday. The package from Igenex includes the free shipping label.

Martin Fried, MD Colts Neck, NJ Our Quest lab draws the blood (drawing fee) and then you ship it Fed Ex. Igenex requires it to be shipped out on Mon, Tues, Wednesday. The package from Igenex includes the free shipping label.

Dr. Jones is in Connecticut. We are seeing an Intergrative doctor who treats Lyme in Wayne, PA. He was recommended by our Local Lyme Chapter (illads). Melinda

Thanks lyme mom!

I'm not sure it this accurate (hopefully someone with more knowledge will chime in) but I thought if you had a persistent/chronic Lyme infection it could be negative one month, positive the next...so forth. That's why some LLD will treat on symptoms alone and re-test to see if it then shows a response? I could be wrong. Yes this is true because it can take a while for a coinfection to show up in a test. You may never get a positive coinfection test result but you can still have a coinfection. Just like with lyme there are so many varieties of coinfections. WIth Babesia, for example, there are at least 13 types and they only test for two types. So you get the idea. There are also multiple types of Bartonella and that is why Dr. Jones uses several labs and still doesn't rely on a negative result. What matters more than a test result is an evaluation by a lyme literate doctor. The llmds I know will tell you that a negative coinfection test does not mean you are not sick with babesia or bartonella, for example. My kids always tested negative for coinfections but that didn't mean anything. They had symptoms of coinfections and those symptoms cleared up after they were treated for the coinfections. This was hard for me to grasp when we first started our lyme treatment but I have learned that it is typical of most lyme cases now: most people have multiple tick-borne illnesses, not just lyme. The ticks are carrying more and more bugs. Please don't take this the wrong way...but then why test for co-infections if you're going to treat anyhow? Just curious.

The test you are ordering has the PCR Panel which requires you to be off of antibiotics. The Basic Western Blot does not. So it's best to comply to get the most accurate picture. Hang in there.