Suzan

How do you schedule all the medicines and supplements for school aged kids? I'd rather not have the school administer any of them. I need to fit one more amox dose in there between after school and bedtime. Or what about just giving all the amox in the morning? Does it have to be spaced out? I also want to fit in some activated charcoal but don't know when to do that either. During the week, we are only awake at home for 4-5 hours a day. She wakes up at 7:00am and we leave the house at 8:15am am - zithromax and amox after school (4:30pm) - colestid (pill form of Questran for bile binding, has to be taken away from other meds) pm (7:00pm) - proboitics, nystatin and any other candida treatments Asleep by 8pm usually Thanks for any ideas!

I gave dd the lorzapam last night for the first time. She was having an emotional breakdown of sorts and was out of control. I got the courage to try it and it calmed her down and made her sleepy. She seemed to have less pain in the evening too but that may have also been the epsom salt bath. I don't think I'll use it every night but it's nice to know I can try it again. I only used 1/4 of a pill. I just don't know if she will react like this every time or if it could be random reactions. susan

My heart goes out to you and your friends family too. Please know you are not alone. I agree with the others, seek out grief counseling if you can. It was most beneficial for me when my son died. Susan

I have UHC and was paid 80% back of our $200 bill for each of us. s

Do you know which FAR Sauna you are going to buy? I think I'm buying the portable one today (it's the only one I can afford).

Wow, amazing news (amazing in an OMG way). Lyme and Addisons! OK, well, now you have this information and can move forward even more. It is great that you have your diets so cleaned up which will only help with lyme treatment. I don't have much time but wanted to recommend this book to you in case you have not read it yet. If you can't take abx, the protocol might help you and might even let you see if you herx, maybe draw out a positive (if you have lyme). http://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630/ref=sr_1_1?ie=UTF8&s=books&qid=1293540475&sr=8-1 I am taking abx and doing the core protocol at the same time. Susan

I don't know, she did not request it for either of my dd's yet but in our orig. appt with her, she did not suspect co-infections so maybe she just started with me. I will let you know if I find anything out about it. I don't meet with our LLMD until end of January. Susan

Really nice information on that link. I like the info about false negatives and false positives and other viral infections that it could be if not lyme. I was the one who had the VEGF testing. Our LLMD uses it as a tool if she suspects Bartonella. I had it done through Labcorp. My LLMD suspected bartonella for me and my result was a little high so she will watch it and see what happens with treatment. Susan

sophiesky, I don't know if you intended this for my post or not since it seems so random, but I do see now that there was another post on this subject so if you were pointing that out to me, thanks.

http://www.neuroscienceinc.com/index.php?option=com_content&task=view&id=604 I see there is another topic on this so I will go and see what others have to say....

Do you have hard copies of the test results? Can you type the test, result and range? How many do you have? Do you have specific ones that are related to lyme or that others have said may be suggestive of lyme? Susan

I noticed a rash today on my 8 yr old dd (positive for lyme but has not started treatment yet except for her zithromax for pandas and seizure meds to stop her seizures before continuing on with her lyme treatment). The rash is sort of under her arm on her torso, right side. It looks very circular so of course I think of bullseye. But I've never seen one before, don't even know if she could get one at this point (she probably has congenital lyme). It's pretty light when she's dry but when she gets into the tub it's very noticable It's about 3 inches around maybe and almost a perfect circle. On one side it gets a little fuzzy around the edge. dd9 has itchy spots on her torso and lower back. It looks kind of like razor burn maybe, that's not a great example. They are irregular and like little cuts (not scratches). In the tub she is covered in a fine web type rash. It's gotten worse since starting her amoxcilin and her other lyme meds on Friday. Any way to know what might be lyme related or co-infection related? I took picures of them in case I needed it. I don't know how concerned I need to be or whether our LLMD needs to know about it. Susan Edit - in looking at some pictures on the internet, it does look like some of these rashes, the lighter, less angry looking ones, just no internal bullseye.

At our house it turned out to be lyme. I am very senstive to light. I agree with ruling out other infections. HGUS!

I like the idea of the deodorant. I think that if it works, it would be good for my daughters especially. Thanks!

For us it is the opposite if at a high enough dose. {{HUGS}} Susan

We already do benadryl and melatonin and 5-htp. These all help a lot but not enough. I am scared to try the lorzepam after all the responses. I just hope that the lyme treatment will be what really does the trick. I know my herxes have given me a lot of anxiety and feelings of irritation. I hope her herxing will not be the same. Susan

The non-generic name, Ativan, brought back pandas board search values so I was able to read up on it from the pandas perspective which shows good/bad results. I guess I'll proceed cautiously. If anyone has lyme related experience, let me know.... Susan

Hugs WD! I will chime in although you have already gotten excellent feedback. Based on our experience with pandas and lyme, I would consider your test results to be lyme specific and lyme treatment warranted. I feel, that if there are things here we don't understand (and I imagine there are) and if pandas will skew the lyme tests to false positive, the treatment of lyme will still help as we have seen from those here who have gone before us. My dd9's lyme test came back IND and dd8 and I were positive. So for the two of us who are positive we are moving forward with treatment and for dd9, we are doing a trial period to see #1 how does she respond (improvement and/or obvious herxing) and #2 to see if we can draw out a positive test (common after a period of treatment). In one way, I am glad I can experience with medication what my daughters will experience and after 6 weeks on treatment it's nothing short of amazing. I have improved in so many ways that although I have a long recovery ahead of me, I am looking forward to seeing my daughters respond as well. At any rate, good luck and I will look forward to hearing how things progress with you guys. Susan

Oh yay, I really was starting to think I dreamed it because I have been known to do that . Your dd's symptoms sure sound like what we have going on in our house! Now, we may have gotten our lyme from California but I know the NC LLMD(s) are swamped with patients.

So dd9 has a lot of anxiety as we know from being parents of pandas kids they worry a lot to say the least. So I guess it's part of lyme too. Our LLMD wants to start dd9 on lorazepam. She said it's not generally recommended for children but she uses it in her lyme treatment. She wants dd to get less anxious around her bedtime routine and work towards her no longer needing to come into bed with me which still happens 1-2 times week. She is sleeping in my room on a mat on the floor all other times but she has high anxiety around bedtime and worry about whether or not she will be able to fall asleep or get back to sleep. We have a very tailored and non-traditional bedtime to say the least but I know with you guys, you understand all that. Anyway, just wondering if any other LLMD's have suggested any meds like this for you or your children. I am to give her 1/2 a pill of the smallest does you can get at night and see how it goes. I can't imagine transitioning her to her own bedroom but I know we are taking baby steps here. susan

I don't think so. She said the test is used for different things, not specific to lyme so it can be used to help find or identify cancer and also various infections that includes bartonella. Also, she said I have past symptoms of HPV (human papillomaviruses) infection which could lead to cancer so I think she wants to determine if the high VEGF is related to lyme infection and wants to watch it. If it does not get better with lyme treatment, I would want to be sure to be watched for cervical or other cancer but my symptoms of HPV are a past history of planters warts and skin tags, not the symptoms that might lead to cervical cancer. dd9 did NOT do well with her first dose of Nystatin. It is a liquid and she almost threw up. Does that come in a pill form? I'll have to check. I increase her to 500 mg zithromax daily and introduce diflucan, nystatin and whatever the bile binding agent that I'm taking, I forgot the name. Flagyl once a month and no plaquinil for her right now. I'll post a separate post about the anxiety meds she wants to start her on. Susan

CD57 result is 36 (range 60-360). VEGF was 733 (range 62 - 707). This is a test our LLMD is running that is important in active infections of many kinds including Bartonella and also in the cancer process. She will be watching this because she is wondering about Bartonella for me because of the VEGF and my herxing headaches in the front of my head. Also Bartonella is known to cause vascular lesions and my dd8 had 2 hemagioma birthmarks (forehead and spine). Overall LLMD was very pleased with my progress and is going to keep me on the same course for the next month. She feels she has all her ducks in a row to most positively say I have lyme (in case there was any question ) I am to increase the flagyl to 2 days each week and increase the yeast meds. I am to start a slow exercise program. I think I'm ready for that. dd9 is to start her treatment today with the intention of treating for 1 month. Then at 1 month, we will either stop and retest a few weeks after to draw out the positive test, or if I see marked improvement and obvious herxing, I can elect to continue. dd is very upset about starting before Christmas but I told her we'd go slowly. dd8 is probably going to start at the end of next month. Slow but sure wins the race! Susan

Yowza! This is great! I hope to be there soon. Susan

Excellent, wonderful, Yay! Great update, great news all around! Susan PS... I have to say, I too am grateful for the parents and pandas forum who pushed us to test. My children have not started lyme treatment yet but I have and I am doing SO MUCH better. If it were not for my pandas journey, I would not have been diagnosed myself. I keep saying that but I can't help it

My children do not respond at all to amoxicilin. Zithromax has been wonderful and at a high enough dose, close to amazing for periods of time. They have been on it for a year so far with no issues. We do take probiotics daily. Good luck! Susan