philamom

Dabel- Is there anyway he would take money as a bribe? I would offer my daughter $1 for every pill (or dose) she would take. As soon as she got a little better I was easily able to stop, and continue the meds. A little costly at first, but well worth the pay off. Great news about the Lyme wing!

I agree -- Thanks Wendy!!! norclamom- Wow, that is a very high titer. What abx was your son on to treat it...zith?

This weekend's cycle ended with a twist. She had usual moodiness along with a wicked headache and some increased anxiety. She didn't make it into school Monday until after lunch. In the evening she told me her ears hurt, so I took a peek and the back of her earrings were embedded into her skin. After being unable to remove them, I was advised to take her to the ER. She handled it well! Her biggest fear was having to get a shot (4 ivig's and bloodwork every 2 months and she still has that fear - go figure). It was a quick visit...I think the longest part was giving her medical history and mentioning all the medicines she's on. Today we begin the love-part of the cycle. She got up and couldn't wait to go to school and brag about her experience. Yes, a love-hate relationship!

Heck...I say we sign Wendy up as a speaker!

Thank's Mary. I don't have any experience with either - very helpful. I look forward to your post about your younger daughter.

When I use the powder probiotic I like to add some Psyllum Husk to the mix, to keep things running smoothly. I buy the 365 brand from Whole fields (very fine) and mix it all together in applesauce topped with cinnamon.

Is the elvated Mycoplasma IgG or IgM? I haved asked three PANDAS doctors and one LLMD their opinion on an elevated Mycoplasma P IgG. Two say it's not relevant, one say's maybe, and the other say's yes...it should be treated.

Thanks Jill! I missed this post the first time around. Your right, love the song now...although, I was told she aint no Eartha Kitt or Madonna! LOL Good luck this month!!

yes...many tears! I will be adding some prayers too! Melinda

My daughter started taking Tindamax on the weekends only, the end of September. The first three weekends, she herxed with it, then the next two weekends I only saw improvement, without herxing. We then did our 4th ivig, backslid, and saw no difference on it for a couple of weeks. Now when she takes it...she herxs Saturday evening, Sunday, and a little Monday morning...but then I see great improvement. I can't tell if I love this antibiotic, or hate it.

Yeeahh! Keep up the fluids. Also, on one of my daughter's infusions she had a massive headache a week later (only lasting one day). Just fyi! Keep us posted on your success!!

deleted

I edited my original post *not shown above*. I just posted part of a handout our llmd gave us. Other llmd's may feel differently. What I should have said, is Igenex doesn't include the five non-specific 5 bands (except 41) when giving a positive result.

Thanks Worried Dad for the update...look forward to hearing what you learn at your appointment! I want to clarify that Dr. Jones is only recommending ivig with patients that have PANDAS. He did ask to see our Cunningham results. I will see him shortly, and again bring up the topic of ivig...as we have decided to hold off on any more infusions for the time.

fr88- IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction.

My daughter had a positive IgM and negative IgG & co-infection panel through Igenex. Two months later my daughter tested positive for Rocky Mountain Spotted Fever IgG with Quest and Bartonella with Specialty Labs. They are tick borne diseases (co-infections). She also has elevated IgG for the following: Mycoplasma P Cytomegalovirus C. pneumoniae HSV 1 AB Herpesvirus 6 Epstein Barr Virus VCA Epstein Barr Virus EBNA Failed 10 of 14 Strept Pneumoniae Serotype Failed H. Influenzae Response Elevated Liver Enzymes & PTT LA Screen Low level of Carbon Dioxide

Thanks for the info guys. I think I'll wait and bring up at our appt in two weeks.

Yes to fever. Yes, it should subside with headache. It's been 2 days correct?

In no way did Dr. K infer he would like to see side effects, just stated in his experience, many patients who had major side effects right away...went on to have a quicker conversion. He also does what it takes to minimize the headaches and vomiting.

Thanks! She has no physical complaints of yeast. We do high doses of probiotics and one Florastor daily. I really don't give many supplements, because she seems to react...and then I back down. She is currently only taking abxs, burber for detox, multi-vitamin and probiotics. On the weekends, I sometimes add in bentonite clay. Maybe I should consider an anti-yeast product. Afraid to rock the boat though!

Yes, I agree...Dr. B's nurses are the best! As soon as she started with a headache, they slowed the infusion down and wrote it down in her record. They also know of my daugher's phobia of vomiting, so they did everything they could to prevent it from happening. It worked...no vomiting with IVIG 3 & 4. But of course, that's not the case for everyone. Hang in there Phasmid!

Yes...I agree. It's in her chart to NOT do a "deep cleaning", but I let my guard down and forgot to remind them. When she came out holding her mouth...I knew I was in trouble! She is on daily abxs. Fortunately, there was not an increase of ocd! Thanks!

Fixit- I seem to remember you posting about yeast before. Let me start by saying I don't really get it...unless it's obvious to the eye, I'm confused. But like I said in another post, since returning from a dentist appt (the very moment) she's been extremely squirmish. In your opinion, does this sound like yeast? And why did it begin EXACTLY when we returned from the appt. Could the dental cleaning have released yeast systemically(sp)? Or maybe it's just a symptom of inflammation? It has gotten better, but still apparent. My daughter has high liver enzymes, so I'm hesitant to try difflucan/nystastin. Anyone?

I've just noticed you replaced your opening thread...thank-you. Everybody might not agree with what works for each child, but I bet every poster here, helps at least one other. Thanks again!

Are you symptom free today? Can you share more of your story? I had a very had time dealing with PANDAS in college and made a lot of mistakes which impacted my health. I was symptom free for about ten years. Currently I am not symptom free due to my carelessness and inability to accept the disease in college. I am however, still living just fine. I graduated college with honors, have friends and have a full time job. PANDAS is a very difficult disease to accept from the childs perspective. I went through a lot. I was diagnosed in 1998 so I went through all adolescence wondering if I had permanent brain damage. - Now it's known the antibodies only interfere with neuronal signaling. Things were simply difficult because there was a lot less known than now. Are you currently taking any medications for treatment? Forgive me...if too personal!