philamom

Sorry I havent been on in a while...Things have been hectic with work and kids haha...She is doing much much better now. Hardly any jerking at all. She still has the chest spasms but its only like once a day. We have another appt in CT on Feb 15th...wonder if we will get snowed in?? Great to hear!! Don't get me started on the snow...they're calling for more, again next week in Philly. We have our follow-up in two weeks.

We stayed at the Premiere Hotel and Suites. They are individual units. We brought my mother along for the visit, so it was cheaper than getting two rooms elsewhere. It's located 10 minutes from his office.

I've decided to post an update on my daughter. She is almost 4 months into treatment, and we are seeing many positive gains. She started treatment mid September, and after some minor herxing, reactions to illnesses & exposure to strep, she was doing fairly well by Halloween. We then did her 4th IVIG, and she lost many of the gains she made on the combo of abxs. Ironically, she herxed the most on her 2nd ivig (just finished two rounds of Flagy--lyme treating abx) and her last ivig (7 weeks into lyme protocol). Things began to settle five weeks after the infusion, when I took her for a dental cleaning and many symptoms returned. One of the most apparent symptom that started the minute we got home, was major squirmish movements...like she needed to get out of her own skin. It looked a lot like yeast symptoms (from what I've read here). It was different than the usual surge of ADHD and impulsiveness that happens to her with the ivig. She also had increased oppositional behavior just like before. Things have once again settled. She still does have some remaining fidgetiness, but overall things are going very well. Here are some things she is doing since treatment: going to bed without a fight sleeping thru the night--no constant nightmares doing chores goes to school-loves school. she even sang "santa baby" in front of the class doing well in school-good grades going to movies, even saw two 3D movies Her ocd is very minimal (mainly some remaining hoarding), her phobias are still present but at a very low level, and she has some very minor anxiety. We still have some oppositional/defiant behavior, but hopefully that will diminish as well. She is back to giving me lots of love & smiles--well, on most days. Just wanted to post for those who are struggling right now. I know this may change (again), especially since we might be switching or increasing abx shortly, but I'm keeping my fingers crossed. Thinking of everyone and praying for recovery!!

Dawn- Congrats!! Please keep us posted! Melinda

Momaine- We see Dr. J and have been very happy with the progress we are seeing with our daughter. There are so many things she is able to do now, that she wasn't able to do prior to treatment. By examining her and going over her history, he was pretty certain she had Bartonella, even though she had a negative Igenex co-infection panel. He tested through another lab, and it was positive. He also ran a ton of labs thru Quest. My daughter has Lyme, Bartonella, and Rocky Mountain Spring Fever (IGG). I sent my daughter's entire history, including copies of all lab tests to his office prior to the appt. Send me a pm if you are interested in seeing the labs ordered from Quest by Dr. J. Good luck with your appt! Melinda

Hi Wendy- Do you know if the capsules are of smaller size? And, can you tell me if there's any advantage to taking the clay over the capsules. Thanks!

I agree with Elizabeth, since treating for lyme, my daughter is responding less and less to other illnesses. Here to hold your hand, if needed edit to add: Fixit- you might want to hold off until your next week's appt. before making any changes to your abx/supplement routine. It might get confusing to explain what's causing what. JMHO

Thank you! How's the taste?

Oh Susan...hang in there, it will get better! I know your concern about the gut issues. I'm always in constant fear with my daughter having 3 past c-diff infections, but I've been amazed that we have less stomach issues/complaints since treating for lyme. I even allow her to have pizza, ice cream, and other dairy once in a while with no problems. Just keep up the probiotics! Just wanted to let you know I'm thinking of you and the girls!

kmom-wonderful, wonderful, to hear! good luck with your follow-up appt!

Justine- I'm intersted about the fiber drink...may I ask what it's called?

Just a reminder that milk thistle shouldn't be used when taking the antibiotic flagyl.

Susan- I put a packet of Florastor for Kids in her lunch box. I give her two probiotic pearls after school at 3:40. Antibiotics with breakfast and dinner. Burber (detox) right before breakfast and dinner. Culturelle for kids at 8:00 and Klaire Thera-biotic probiotic capsules right before bed. Multi-vitamin at breakfast.

How much Amox? We give our daughter 500mg Amox and 250mg Zith in the am and another 500mg Amox (and Minocin) at dinner.

Jodie- I was under the impression all yogurt is made with streptococcus thermophilus...it's whats needed with the milk to make the product? I could be wrong. I'll check into the Emmi yogurt, since i've been avoiding yogurt, kefir and probiotics with Strep T because of it. Also, I have to say, this is the first fall/winter my daughter hasn't had any major sinus infections in years. She's had a couple of sinus colds, but fortunately was able to clear it. She is on daily zith. Sorry to hear what your kiddo is dealing with. :-(

When we did Dr. K's steroid burst in June of 2009, my dd was off the wall. Her intrusive thoughts were so bad, she was running around the house, raging, hurting herself in hopes to stop her brain. After 10 days it settled some. We moved on to ivig and did see some improvement. In the fall prior (Aug 2008), we did 7 days of steriods and 3 weeks of Augmentin for a sinus infection, and did not have a reaction. In fact, it stopped the PANDAS episode that was brewing at the time! We then did a total of 3 ivig's before discovering she had lyme, and another, two months ago. We have seen the most improvement with the combination of antibiotics she's on for the lyme.

My daughter always has an increase in symptoms when starting a new product (Anything: supplements, vitamins, medicine). It usually takes 3-5 days to settle, if I last. Also, with probiotics, it's best to start small, and work your way up. I know that's a capsule (it's the product I use) of 50+ billion cfu....if you want to start smaller, you can try Culturelle (10 billion) or Culturelle for kids (1 billion). Just a suggestion.

Hi Jodie- My dd is currently on Zith 250 daily (plus others) for Lyme. Before we received the lyme diagnosis, she has at times, taken Zith 500 daily. Is your plan to treat the Bartonella at this time? I don't think the Zith works as a cyst buster--correct?

Feb 28, 2011 - Tentative Speaker - Dr. Elizabeth Lucas, MD - Dr. Lucas is a Board-certified Internist who practices just North of Baltimore, MD. She attended Medical School at the University of Oklahoma and did her residency at the Greater Baltimore Medical Center. She has been in practice for more than 15 years, beginning her career in Western Medicine and gradually adding more and more integrative medicine. She now specializes in functional medicine, nutritional medicine, and homeopathy along with traditional medicine in a holistic approach to Lyme and tick-borne diseases. She is a member of ILADS. This is part of an email I received from our local lyme chapter.

H. Influenzae Type B Antibody IGG My daughter's level of protection is low.

Yes, after many calls explaining to them that if was two distinct tests, they covered. We had the Igenex testing done on my dd in July, and again in Sept, and on myself in November. No appeals...just many calls. I'll pull out my bill's and pm you over the weekend.

Oh EM- So sorry! Take time to grieve, but always remember, we are here for you!! Sending prayers...

Can each of you tell me who you see for a doctor and what drugs your children are on? Philamom, how long has your dd been being treated for lyme and who is your pandas doc. Are you all working with multiple doctors? How do I even begin to start this journey? I guess I'll call and talk to her pandas doc and see what he thinks. We use the same PANDAS doctor. In July, after my daughter's 3rd ivig, we received a positive Igenex western blot. She was placed on zith 250mg for the lyme. In Sept, we took her to Dr. J in Ct and he added Amox daily and Tindamax on the weekends. After some minor herxing (compared to many here) and some reactions to illness, she was doing pretty good by Halloween. Then we did another ivig and lost much of the improvement we've seen. After 4 weeks, things began to settle, until I took my daughter for a dental cleaning...by the time we got home she was flaired again. 19 days ago, we added Minocin to her daily regime and are now once again seeing improvements. So yes, we are working with both doctors. At this time, we are going to postpone further ivig's until later into treatment (if needed). Only, because, in our case it caused too much of a herx with her last infusion. Some are doing better treating with abx and ivig, some are not.

momaine- Igenex also states at the bottom of their report "presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance". My daughter also had 4 HDivig and still reacts with PANDAS/PITAND symptoms when she has a virus or is exposed to strep. But her flairs don't last as long now that she is being treated with the correct antibiotics. Actually, my daughter just started with symptoms of a cold two days ago, and I have yet to see an increase in behavorial symptoms (keeping fingers crossed). This would be the first time in almost two years she hasn't reacted to a virus!

Yes, after many calls explaining to them that if was two distinct tests, they covered. We had the Igenex testing done on my dd in July, and again in Sept, and on myself in November.