philamom

off topic- but wanted to mention there's a Barnes & Nobles 5 min. down the road...and also a bowling alley (for the night before the infusion). I haven't done the bowling though. And don't forget the hot apple cider & hot chocolate served with the cookies! Jag- I had my annual ob/gyn scheduled for today (3 years behind) --cancelled due to snow...now I have to wait another 2 months.

SF Mom recommended a product called Burbur for detox. I find it helpful with my daughter. It's a liquid..you work your way up to 10-15 drops am & pm. It's from Nutramedix.

I would like to get a second opinion for my dd with Dr. Beals, but concerned about the billicin injections. Even though I feel it would be a temendous help, my daughter would not allow it. And it took me over a year to get her to tolerate needles, so not sure I want to walk that fine line. Are the injections always part of his protocol? Melinda

Also sending prayers!

I give the bentonite clay (1-2 tbsp) mixed with applesauce/cinnamon on weekends. I'm considering adding some capsules as well. I try to separate probiotics-abx-bentonite clay 2 hours apart.

I put my dd on the waiting list the end of July...have not heard back yet.

Wow Susan...great, great, great to hear! That deserves a bunch of bananans!!

Thanks Michael, I think I will. The day of the blood draw, the only 2 workers there had a difficult time figuring out what the test was.

Arrggh! I just had this done last Friday...haven't received the results. Would it be in my best interest to call the lab to see if the test was performed the same day as the draw?

I can't remember if it was due to the flagyl not being absorbed properly with the milk thistle or if there could potentally be a reaction. I will see if I can find the info again. I remember reading it at canlyme.com or LDASEPA website under drug interactions. It stood out to me, because I was considering the milk thistle for elevated liver enzymes. Found it: Milk Thistle and Vitamin C can undermine Flagyl treatment: -Silymarin (milk thistle) has been shown to reduce blood levels of Flagyl by 30%. an effect that could lead to therapeautic failure. -Vit C (250mg twice daily) combined with Vitamin E (200mg twice daily) reduced the effectiveness of Flagyl. It's listed at California Lyme Disease Association under Lyme 101. Go to Lyme disease and then Treatment...it's at the bottom of the page (considerations while on treatment).

I can't remember if it was due to the flagyl not being absorbed properly with the milk thistle or if there could potentally be a reaction. I will see if I can find the info again. I remember reading it at canlyme.com or LDASEPA website under drug interactions. It stood out to me, because I was considering the milk thistle for elevated liver enzymes.

We purchase it at Rite Aid (behind the pharmacy counter). They always keep a box in stock for us. It doesn't need to be refrigerated. I don't rag on her if she forgets to take it...just hope for the next day. I don't want her to throw it out, lie and tell me she takes it.

fixit- I take florastor/Culturelle while on doxy...just 4 hours apart. Do you feel differently? Isn't there a potential of die-off with any probiotic? Thanks Just want to mention that Milk Thistle should NOT be used if taking Flagyll. I know some are treating with flagyll for the lyme...so thought it deserved being repeated. Thanks for the reminder on the thistle/flagyll i'm sorry ..i need to edit..its diflucan and sach that are bad mojo ...i don't chance it...when i have to use DIFLUCAN i don't like to give probis with abx either....but during the week, if i don't give something before he leaves for school..it's 9 hours before i can get them too his sytem...and not sure if its another 30 minutes before they, open up..so to speak....i have read several times about those 2 holding up and not so much die off reaction...so i'd rather do that then have his system be naked all that time, as i know he has some gut issues... on the weekends....i do wait 2 hours.. I agree...many times I have to give probiotics (culturelle/florastor) with my daughter's abxs. I like to put a Florastor kids packet in her lunch box...she just rips it open and swallows. Then I give her a big dose of Ther-biotic or Custom P before bedtime, so some of it has to be working. I'm taking the doxy, so I'm able to space my probiotic 4 hours apart.

Thanks...Yeah! Finally a result to smile about!!

fixit- I take florastor/Culturelle while on doxy...just 4 hours apart. Do you feel differently? Isn't there a potential of die-off with any probiotic? Thanks Just want to mention that Milk Thistle should NOT be used if taking Flagyll. I know some are treating with flagyll for the lyme...so thought it deserved being repeated.

I was told by her LLMD that it's very common in patients with lyme. So maybe the same with other infections as well.

Just received the results of the "OAT" test by Great Plains done on my dd9. Never ran this test before and probably won't speak to the doctor who ordered it until next week. It looks pretty good...only 3 results out of range: Yeast & Fungal Marker: Arabinose- 70 H (ref range <56). This was the only elevation out of eight yeast/fungal markers. Krebs Cycle Metabolites Acontic- 10 L (ref range 11-35). This doesn't seem to low. Amino Acid Metabolites Phenyllactic .53 H (ref range <.27). It mentions in remarks that it may indicate increased intake of dietary phenylanine, and something about (PKU). I'm very excited to see her Clostridia marker at 14 (ref range <227). That seems pretty good...I guess the probiotics are doing their job. My daughter had c-difficile in April and also in 2006/2007. Any opinions? Do I need to treat for one Yeast/Fungal marker? She does not take any anti-fungal product...just florastor and other probiotics (250 billion). Thanks!

My daughter's LFT's are elvated. We just ran them again--waiting for results. She was never on Difflucan or Nystastin. She has PANDAS and Lyme (PITAND). AST Nov 09: 34 (H) June 10: 49 (H) Sept 10: 36 (H) The reference range is 12-32 ALT June 10: 42 (H) The reference range is 8-24

I get this taste when I am constipated.

I must have a stomach of steel...day 14 with no problems. I take the brown/white capsule (100mg) 2x day with a Snackwell cookie.

Kathy- When we ran the Igenex basic panel it included the IFA (we're not from NY) and we received a positive IFA, IgM, and negative IgG. We then saw an llmd in CT eight weeks later who retested the Western Blot without the IFA. He said he doesn't usually test for it, which saved us some money.

Hi Jill- We had first IVIG with Dr. K (Gammanux-sp?) and next three with Dr. B (Gammagard) with no reaction from switching brands. But there was a 10 month span between 1st and 2nd. Good Luck! Melinda

Jodie- you are an amazing, strong woman!! Being in a car accident that landed you in a coma, breast cancer survivor, and now a family diagnoses of lyme...you will fight this too! Thanks for keeping us updated on your (and son's) appointments!

Well, I'm sure by now you ran some of the generic tests, but I'll list them anyway. I was suprised when my daughter tested for Giardia. clostridium difficile toxin A and B campylobacter giardia salmonella and shigella ova and parasites smear rotavirus antigen helicobactor pylori We just recently did an "OAT" test from Great Plains Lab. Still waiting for results. They also have a "MOAT" test , which I think detects more parasites. I use a variety of probiotics (Custom Probiotics, Florastor, Culturelle for Kids, Theralac), but the one that seems to work best for my daughter is Ther-biotic Detox Support. She seems to have no issues when taking this product. Unfortunately, it's so expensive! I recently ran out, and saw an unpleasant change in her bowl movements...she's back on it and their again normal. Of course, every child reacts differently to products. At one time, we were using Metagenics "Glutagenics" - powerful gastro lining support, but my daughter balked at the product. A year ago, my daughter had a sudden onset of heartburn. We used Prevacid daily for 3-4 months. But one doctor we saw mentioned it can open the door to other stomach issues...I don't know, but it gave her relief. Good luck Mary! I hope she soon finds relief!

I think Giardia does.