Suzan

Oh geeze! I didn't know this! I hope it's not ruined! Thanks for bringing that up.

It is about $125 a month for both bottles (Multi-Immune and LymPlus). I think the LymPlus is $80 and the other is $45 or so (if I have that right, it's early here.. ) I'm still working my way up to a full dose and I'm still herxing! If it helps as much as it's making me feel crummy, it will be worth it. So these two bottles will last 2 months or more but once up to full dose, it's only 1 month's worth of pills. Susan

I get sores in my mouth if I take too much vitamin C. I used to have the thought process that you just void the excess that your body does not need but if I take more than 1000 mg a day for a few days the sores appear. I don't know why. I don't supplement vitamin C right now with the girls but I have in the past, as much as 1000 mg 2x a day but that was pre PANDAS and Lyme. Susan

The purple lips make me think of not enough oxygen. My dd's cardiologist had me look for "blue" lips when she was younger. How does she feel otherwise? When did it start? I would ask the doc about it today. Susan PS.. Soooo sorry about the ankle too.....

We are on three types of abx. The flagyl (cyst buster) my dd's take only once a month and I take it once a week. We have them on zithromax and amoxicillian three days a week and I load them up on probiotics and caprylic acid (antifungal) the other days and they also take diflucan once a week and nystatin every day. We don't test for candida at this time, I acually assume they would test positive. Just trying to keep it at bay until we treat the lyme. Hang in there, I hope you get some other good advice! Susan

My heart goes out to you and your family. I wish I could help somehow. You are in my thoughts and prayers and I hope this wonderful nurse can help. I don't have any experience with IV abx though. Big Cyber hugs to you. Please keep us posted. Susan

For us it was lyme too. My dd9 had pain so badly at times that she could not walk. I had painful knees when I was young and had to wear tight bands to be able to walk without pain. In retrospect we think it was lyme. But I would have him checked out by the ortho and also tested for lyme. Good luck!

Yes, my daughters (who have pandas and lyme) were 143 and 118. 143 was about mid range pandas and 118 very low range although I found out later that the taurine she was on probably lowered the result. So 166 is getting to the upper range of PANDAS and possibly Lyme. What was your other test from Genova? HUGS!! Susan

I found this article helpful for some initial information. http://www.wellsphere.com/lyme-disease-article/getting-rid-of-gut-biofilm-and-the-critters-it-protects/420746

OMG. It packs a wallup. 2 hours after taking my first dose, I was irritated, annoyed, stressed, shakey and headachy. Feeling slightly better a few hours from that. I'm taking Transfer Factor Muti-Immune and LymPlus. Susan

Thanks! I hope I remember this when I'm looking to increase my girls supplements! Interesting products. Susan

Our LLMD required Igenex tests #189 and 188 (Western Blot) before she would see us although a positive result was not part of the criteria. It cost $100 per test and my insurance did reimburse me for 80% which was a nice surprise. I know not all LLMD's do that up front test requirement though. Susan

Hello and welcome. I am sorry for everything you and your family are going through. Our experience, when we started on zith with no other antiboitics (before knowing about lyme and thinking it was "only" pandas), my dd's did not react poorly. But when we started our lyme treatment, we started with amoxicillian and when it was time to start the zith our LLMD recommended taking one dose and waiting 3-6 days for the herx and once it subsided, to work up slowly to full dose. And I did herx a lot from that one dose. So I do feel like it could be a reaction due to lyme or coinfections, at least enough to investigate further. I am glad you have an openminded doctor! I hope open to the subject of lyme too. Susan

Will someone send me Dr. Beals contact info? Thank you! Has anyone heard of Dr. K (female integrative doc who only takes lyme patients) in Chapel Hill? My jaw is worse this morning. I'm realizing I can't go too long without and LLMD. Susan

Nice! I use a word doc and just make notes whenever there is something note worthy. This is important for me otherwise I can't remember anything. But then I have to do a lot of searching to find the symptom or time period I need to reference in a doc appt and it's hard to find. A spreadsheet like you mention might be easier. I also tend to only write when things are bad or if nothing changes for a long time I get tired of saying the same thing day after day. Susan

Bad experience with my hopeful new doctor. She is not a lyme doc but an integrative medicine doc so I thought she would be open minded. But she's in the CDC camp so it was a bust. I was not hoping for lyme treatment from her but for local support with the whole thing and willingness to work with the llmd's. She will work to prove I don't have lyme I think. I guess someone trying to prove that might uncover some other things but I don't really need the fight right now. Her explination to the improvement on abx was that I probably had something else that responded to the abx but that I should go off everything now and see how I'm doing. Time to get serious about finding a new LLMD. I have unexpected jaw pain tonight. It came about after I did my exercising and sauna. It feels like it's almost popped out of joint and hurts when I chew (I actually can't chew). I hear this can be a herx or lyme symptom but I've never experienced it before. Other than that, I'm feeling really good today. It's the first day in years that I actually felt better after exercising. I'm up to 10 min on the treadmill and 2 min on the mini-tramp. My LLMD wanted me to ramp it up and start building up to more so I'm trying. I guess I just wanted to talk to my lyme family tonight after my bad experience today of having to try to defend my position to that doc. s

This may have been posted already but with reading this speech made me want to google Dr. K. Lots of interesting info here. http://www.klinghardtacademy.com/Lyme-Disease/

In addition to the benadryl and motrin, I have also used oscillococcinum and sarsaparilla. I know this is late info and you probably don't have this in the house but I thought I'd pass it along. Hope she's doing better today. Susan

Yowza, thanks! Susan

Thanks for the discussion and links and experiences. I just got the bill. Wow, it's expensive. I hope it's worth it. Susan

I'm glad to see your update! I was wondering about you. I haven't been over to the pandas board recently but I need to continue stopping by there too. That totally bites about getting strep. I am very glad though that you will be seeing a lyme doc soon. I can't wait to hear that update. Good and bad news about your Mom, I hear you there. I hope her personal interest in lyme now will end up benefiting you more to make it all worth it. Hang in there. Susan

My dd8 was the same way, on taurine for her seizures and had a low camK at the onset of an episode (low end of pandas even though obvious strep connection and now positive lyme). I will bring this up with our neurologist when we go (but we are not going until March). He is getting involved in Lyme and very interersted in pandas and pitands. I don't know whether taurine helped us or not either. We were doing so many things at the time. It was all pre-pandas/lyme Susan

I agree about getting your eyes checked but with checking with your LLMD too. Our experience with weird eye things: dd9 would say she saw bright dots when her eyes ere open that would cover her vision. We never found anything wrong (except PANDAS and now Lyme). I would get ocular migraines only while pregnant (although I did get one mini episode last year). The bright lights would start on the left side and overtake my vision in both eyes until I could not see at all. It would last exactly 20 minutes every time. I had all sorts of tests but they never found anything wrong. These don't sound exactly like what you are talking about but I do wonder if it can be a herx or symptom of lyme. Susan

Our LLMD gave us Lorazepam for dd9 for her anxiety and over the top outbursts and uncontrolable emotions. I was afraid to use it after hearing a lot of negative reactions by PANDAS kids. I used it one night during an episode that sounds similar to what you describe. It calmed her down and allowed her to get in the salt bath and calm herself. We are lucky that these events have been very few in between since we started her lyme treatment but I'm glad to know I have the lorazepam if I need it. I only gave her 1/4 of a pill since it is not generally intended for children. Susan

I am so pleased with dd9's lyme treatment. It's been 1 month, I know we are only just beginning. But she is doing so much better emotionally. She is a lot more reasonable, understanding, kind, caring, able to handle emotions much better. I don't think I have ever seen her like this. Please remind me if we backslide and I start to freak out....that things are getting better. She just took her monthly flagyl dosing yesterday and today so I expect things will be stirred up soon. I had to post how happy I am about what I see right now. Susan