philamom

We'll - I'll be the black sheep. My dd's choleserol have been low since Sept, when she started with other abnormal labs (elevated sed rate & c-reactive, +ANA, elevated LFT's). The normal level is 125-170 with Quest - my dd's results are 111, 105, 90, 106. Her triglyceride levels have jumped into the 200's though since December.

Hi laure, I'm a little confused - I was under impression that the Igenex WB only tests for borrelia (lyme). How would this rule in/out co-infections? I don't know how the doctor could say lyme only, unless other tests were run (and even thats not always reliable)??

Oh geez! So sorry. You can find info. on tick testing under lymediseaseassociation.org. There's also a good tick identification guide at www.tickencounter.org. It gives pictures of all types and stages of ticks in your region. You double click on the tick for a close-up view to identify.

I am so sorry that your whole family is effected, but at least you have an idea of what may be going on. Lyme is spreading quickly and there will soon be alot of sick people and their doctors that have no idea what is going on. I agree - I think there will be many more cases this spring/summer, especially on the East Coast, from what what they are prediciting.

Thank you so much. I appreciate you sharing.

hugs2day- can u elaborate how u aggresively treated the gastro symptoms. Thanks.

Awesome!

I know there are different opinions regarding the lyme testing. But, for what it's worth my daughter always tests negative for lyme on the Quest western blot. She does test positive with Igenex, and more recently she had a culture done with another lab (Advanced Lab) that showed the spirochettes in her bloodstream. They sent us a picture - so denying it. Unfortunately, the latter test is expensive and not covered by insurance.

Your post brought a tear to my eye. How is your son doing with the IVIG? Thinking of you!!

As recommended by my daughter's Immunologist and LLMD, we are doing IVIG every 8 weeks.

Mary, that's WONDERFUL! I'm so glad to hear it is going well. Great news!!!

do you mix it with anything or just have them drink it straight up, since it is tasteless?

Hugs2day- pulling up this older post for a question - what type of Aloe Vera juice do you use? Someone just recommended St George's brand to me. Looking for a brand that doesn't taste too bad. Do you use it to keep the bowels moving, or for another reason? thx

My daughter to a T - except for the shaking. Although, her one foot constantly shakes. I strongly agree with checking for lyme and possibly co-infections, although I believe PANDAS can cause these symptoms as well. If you decide to look into lyme, I suggest asking for advice on the lyme forum. The standard elisa testing has a high false negative rate. My daughter is dealing with lyme, bartonella, and PANDAS (or PANS).

I was just reading about xylitol gum. Xylitol sounds like something we should definitely try! Thanks! Biotene make's a gum with Xylitol. Also mouthwash, toothpaste, spray.

Yes, Lyme can cause a herxmeirer reaction (increase of symptoms), but I believe other things can as well. Before we knew my daughter had lyme she was put on azithromycin for PANDAS and did horribly - after 10 days I stopped it. We eventually went on to find lyme and she was put on zith again. We worked through the herx which wasn't as bad the 2nd time around. I suggest you post on the lyme forum. Most of us there don't recommend testing by Elisa standards and can give you suggestions if needed. My daughter mostly deals with anxiety, ocd, and behavorial issues - not tics (just an eye blink), but there are many on the lyme forum who do. Unfortunately, you also can't rule out PANDAS with a normal strep titer. You may also want to check for Mycoplasma, which is causing issues in some children as well.

I'm having problems with my computer -maybe it's my end. Fixit- I tried to send you a pm. Let me know if your inbox is full. Sorry for the confusion.

I just tried to send you a message. Your inbox must be full??

I give my daughter one packet of culturelle daily. I also give her Florastor, Integrative Pearls, and Klaire Ther-biotic Detox Support daily. Sometimes I use Custom Probiotic as well. Good luck!

Thanks. I guess I can look at the 1/2 full glass. My grandson is with my PANDAS kid's ped and he knows a lot about PANDAS and will treat and I know that he does not push the vaccine thing. My daughter has already decided no to the HepB. So, I guess we know enough to recognize and deal with it early on if we have to. Can a breastfeeding newborn take probiotics? Have they developed their own flora already? Baby Jarro - "small amount of powder may be dabbed on mother's wet nipple before breast feeding." Or mixed in formula.

Is Dr. T and/or Dr. K treating any adults for PANDAS/PANS like symptoms?

So exciting - Congrats!!! Jarrow is a good brand probiotic for babies/infants.

My daughter had a Cam K of 136 in June 2009. It was shortly after a steroid burst with Dr. K. All four Anti-Neuronal titers were also elevated. She had IVIG days later. After six months we tested again, her Cam K was normal and only 2 of her Anti-Neuronals were elevated. BUT, she still had symptoms. Her 2nd IVIG was April 2010. It wasn't until we started treating for lyme (discovered in July 2010) that we really started seeing improvement. But we're still struggling some - setback last 6 months. We also continued with IVIG.

I don't have personal experience with this lab, but I thought to mention there is info on it, at the better health guy website, he gives feedback on various labs and their profile. I think Clongon is fairly new. Thank you. A little discouraging, as he says "more and more I've heard discussion that many of the tests from Clongen have come back negative". I guess I'll just have to trust Dr. J's judgement on using this lab for the parifin testing. He doesn't use them for my daughter's blood tests. I hope I get some coverage because the cost of the testing is $695. So far I've been pretty fortunate in getting reimbursed with other labs.

Two and half years ago, I had my cats cultured while being under for dental procedures - they were both positive for strep, but it was alpha hemolytic (something like that, it's been a while). I was told it was always present in cats. Knowing our situation, the vet treated them with antibiotics anyway. edit- maybe it was G strep? I might be confusing it with a stool test of my daughters that was postive for alpha-hemolytic.