philamom

laura- it's really tough when there is so many variables to chronic disease. I recall someone (maybe dcmom?) posting success with Clindamycin for resistant strep while on other abx. But, you need to take a good probiotic while on it because it increases the risk of c-diff. I really hope it turns around for your daughter soon...prayers!!

My daughter has been really complaining of tingling in her arms and legs lately. Any suggestions for some relief? Do heating pads or cold compresses help?

Thanks...I will start taking the chlorella prior to eating. That's a total of 20 tabs daily, correct? It is actually 20 tabs before each meal. I know, it seems like a lot (they are small tabs) but he has shown a huge need to detox. You may want to start at a lower level until talking to your LLMD. Wow...that's a lot. I'm taking 6 BioPure Chlorella Pyrenoidosa with breakfast, lunch and dinner - 18 total. I have no problems with the taste, but then again I don't have issues with swallowing pills. I take them with a green smoothie that taste like kiwi & apples. They are very small tabs.

Thanks...I will start taking the chlorella prior to eating. That's a total of 20 tabs daily, correct?

There is a rally today in Harrisburg to pass Senate Bill #210 "The Lyme Disease Bill". If you live in Pennsylvania, please call in to your Senator's office and let them know that you want this bill passed this year! Senators need to hear from you that this bill is crucial, and PHYSICIANS need to have the RIGHT to diagnose and treat Lyme disease according to BOTH current standards of care (ILADS & IDSA) - and we have the right to have a VOICE in our treatment. Let them know that our youth is the face that they see being affected by these diseases. Pennsylvania is #1 in the country again, and yet we have no public health strategy to combat this disease or ensure patients get the best possible treatment available. For more information on today's rally in Harrisburg, see www.lymeactionpa.com for details.

Em- sounds like a good appt. Here is the elevations in my daughter: Mycoplasma IGG- 1.08 Cytomegalovirus IGG- 1.91 C. Pneumoniae IGG- 1:128 HSV 1 IGG- 4.11 Herpesvirus 6 IGG- 1:80 Epstein Barr Virus (VCA) IGG- 1.20 Epstein Barr Virus (EBNA) IGG- 2.97 Rickettsia IGG - 1:64 (was 1:256) Elevated Cholesterol, Triglycerides, AST, ALT She only mounted a response to two of the 14 Serotypes of S. Pneumoniae. She alos had a low response to H. Influenzae (0.22 L).

Great Plains bentonite clay for dd. I was directed to take the chlorella at breakfast & dinner with other supplements (for myself).

Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. We use advil daily in the morning, and Synergy multiple vitamin has coQ10, ALA, resveterol, quercitin, B12, so covers a lot of bases for mood swings. The contamination OCD is what makes her so miserable. She has tried to explain Lyme to her friends, but I think they (and their parents) still judge her/us. My dd won't share any of it with friends at all. They just think she's avoiding them. She has become very angry with me for sharing ANY information with close family and friends. She feels so different and calls herself a freak. I wonder if there is an online support group for our kids? EXACTLY the same here!

Just got back some labs from Quest. Dd's urinalysis showed traces of Ketones. Probably related, huh?

Laura- Very good idea to take a break. Please, please, please keep an eye on her. Sending prayers your way!! Melinda

Well, my daughter's dietary habits are not the best. Add an additional sensitivity to taste and smell, and things get worse. Jodie, how many capsules of the Metabolic would a child need to take daily? Anyone else, please.

You could also check out www.honeylocator.com

It's time to start adding some good quality supplements to my daughter's treatment protocol. I don't think her Trader Joe's chewable vitamin is cutting it anymore (cute teddy bear container though). Can I get some recommendations on what y'all are giving? Also, any other vitamin/minerals you give separately? Thanks!

Could you share the brand your using? I may go back to theralac but its only 30bil per pill and very expensive for just thirty days Klaire Ther-Biotic Detox Support, Florastor/Florastor for kids, Culturelle/Culturelle for kids, integrative Probiotic Pearls, Custom Probiotics. All expensive (sigh).

Tough call. I went with mommy instinct...it could have been die-off. We had the packets and never even came close to the amount we were suppose to give per doctor. I am now giving 300 billion cfu daily with different probiotics. I plan to add another to the mix next week.

Good luck with your continued journey! Please keep us posted.

I had no luck with the VSL. My daughter was wild on it. I always assumed it was the Strep Therm. in it, but not really sure.

I started with a "Quintessence/Viressence" cocktail myself two days ago. I add in Samento next week.

Essential: Probiotics- Currently using Klaire Ther-Biotic Detoxification Support, Sacch boulardii (Florastor for kids), and Culturelle Detox- Nuramedix Burbur & Parsley (15 drops am/pm) Multi Vitamin Plan to add Bentonite pills, SyImmune, and Custom Probiotics next week.

Are you using these products together for your children's anti-viral protocol? Sy Immune - is two chewables a day? thx

I'm so happy to hear your children are off antibiotics for the most part. I think of you and your family often! Did you run the urine test for KPU...just wondering?

Can you share what brand you're using? Did you come across any pill forms that would be good options? I'm already looking at having to get a drink into him with fiber/miralax to prevent constipation/encourage BMs, so don't see much success in having to get multiple "disguised" drinks into him. I see NOW Foods has a 1000mg chlorella tablet - that might be an option. Any input? Justine - Yes, also read bad stuff about Actos - things that made me discount it as an option for us. But now I can't find it again. I just started with Chlorella (Pyrenoidosa) by BioPure. They are tiny round pills that are very easy to swallow. I was told to take six with breakfast and dinner (and lunch if I wanted more). I think you need to purchase it through a doctors office, though. Six pills equal 1200mg. This amount is for myself (not daughter).

Specialty Labs is owned by Quest. Our llmd runs the Bartonella IGG/IGM and Ehrlichiosis (HME & HGE) IGG/IGM with this lab. It is covered by insurance. He prefers this lab to Igenex for these 2 tests.

My daughter had an elevated marker for Phenylactic with the "OAT" urine test. It was 0.53 (ref range <0.27). Never followed through on the results...thought it was a genetic issue at birth? Can you tell me what led you to explore it. You can pm me if you like. thx

May I ask what brand Chorella you use?