Suzan

We are on it daily for our allergies, once a day at night. My step mom takes it nightly for the same reason and has for years. According to our allergist, it's fine. I try to get us off of it during the winter when we don't have as many allergies to give us a break but we start it up again in the Spring and take until the Fall. Susan

Sounds likely to me based off my experience that you do have lyme. When you take your daughter to the LLMD, certainly ask them about it. Getting myself tested and starting treatment has been a life changing step. Our chiropractor ordered our Igenex tests for us. Susan

I thought bactrim was used to treat acne? Could she be detoxing already? If she has been in the sun I would keep her covered and out of the sun as much as possible and reassure her that this is part of the process and it will get better. My girls have had all sorts of skin issues with their treatment (and before) and it is hard on them but so far, everything is/has cleared up. I know she's nearing the teen years. Could this be a part of puberty? Maybe not so likely if it's come up so soon after starting the bactrim. Susan

We use chiropractic to manage the pain and our chiropractor does help with that. But I would not say he helps with healing the lyme, just managing the symptoms. My dd8 went to a neurolo/chiropractor recently. That was very interesting. He was doing specific adjustments to help what I would consider side effects from the lyme related to her neurological function. I saw some improvement. But still getting rid of the lyme bacteria is most important and possibly chiropractic can help with the lingering symptoms or damage. That's how I view it anyway. Susan

I am not familiar with these abx either as we have not used them. But I do know my dd8 worries about getting old and dying and I think it is worse when she is herxing. She has not been doing it lately at all. Good luck. Hang in there. Susan

Glad you are feeling better! I know the feeling about not realizing how sick you are. Mine was because I was busy holding everyone else together, I could not think about me. It took my arm being paralyzed last year for me to say OK, something is really wrong. Susan

Our first LLMD considers the OCD to be more pandas than lyme. She believes we will need IVIG's in the future but needed the lyme treatment first. My dd9 had 3 IVIG's, all relatively low dose (1g/kg was the highest one). They helped her mental state but not her body. Now that her body is almost better, I'm ready to ask to see if we can go back to IVIG's and maybe kick out the rest of her OCD. Susan

I emailed them to find out if it were true and why they were pulling it. Here's the response I got. Hi, WGBH has revised its decision to include the film “Under our Skin” on the WORLD channel. The decision is based on our own, internal editorial concerns that surfaced on closer review of the film. WGBH takes no position on the subject of the film or the issues it discusses. We do recognize there are those who feel strongly about the topic, and we regret any concerns caused by our scheduling change. Meanwhile, please visit our facebook page to share your concerns with our community: http://bit.ly/WorldCompass Thanks, Team WORLD

Last night I was trying to google about how lyme may have caused my premature grey hair. I am 44 and probably 50% grey by now. I came across this product (wouldn't it be awesome if it actually worked)... http://www.getawaygrey.com/product which got me googling about catalase and hydrogen peroxide. This brought me to this (VERY LONG) forum post.... http://lymebusters.proboards.com/index.cgi?board=supplements&action=print&thread=12126 Has anyone seen this and tried to get through it all? This guy is not a doctor but seems to know what he is talking about but take that with a grain of salt I guess. But this talks about very interesting things about amino acids, magnesium and hydrogen peroxide in the body and how it directly relates to Bb. I was trying to determine if catalase would be beneficial to lyme or not and of course now I'm just plain confused. I'll try to get through this again. Susan

Fantastic! Even if she backslides, this is real improvement that will continue! Congrats!!

WOW! Luckily our local PBS already played it on 5/17, it was scheduled anyway. It was on a station that DISH does not carry but Cable did. I hope a lot of people watched it. I will look into supporting the cause and complaining about this for other stations (or for any replays in my area). Susan

If you go to your inbox (click on your name above and click on Messenger) there is a little box to the right of each message. Click on the ones you want to delete. Then go to the bottom and click submnit. The delete option should be defaulted. I hope that helps! Susan PS...I did try to PM you and it would not go through. I think you are right about your inbox being full.

Hopefully the lyme doc can help you with these symptoms. I would assume she is herxing when she takes the antibiotics. They can make her worse for a while before bette.r Maybe you can start slow and work your way up to the desired dose as her body works through it. Are you having her take any probiotics or detox supplements yet? When do you see Dr. J? Susan

LOL, I just bought paperplates and cups to get through swim practice. I think I will get forks and spoons too! Now you have me wanting a glass of wine!

The only thing I've had that sounds similar is when my lyme was triggered it started with horrible pain in my neck, shoulder and arm. The only thing that helped me through it was constant ice and lots of pain medication. I didn't know about lyme then though. I assume this is a herx, do you agree? Our LLMD recommends constant heating pad and rest and pain meds. I am so sorry this has happened! You are going through the wringer with this $%^&*# lyme. Susan

Thnaks both of you for your suggestions. I am feeling better this morning, but I always feel better in the morning than I do in the evenings. Jodie, I took flower rememedies when my son died and I think they really helped so I will try them again. Nancy, our schedule just went up a notch with swim practice so I know this is one thing that is making things worse. I have decided we have gotten all we can out of dd8's chiro/neuro so stopping that appt will be a great help too since it takes us 30 min to drive there it's a lengthy visit. Susan

Has anyone found any supplement or medication that helps with the feeling of being overwhelmed with every little task? I am constantly stressed out and anxious because I can't make phone calls too well, make appointments, start a job like cleaning a room in the house, sorting through stuff in the house, etc. It's particularly bad right now and it's really bringing me down! I don't know if it's a symptom or a herx. I have not specifically tried the sauna or epsom salts for that. Maybe it would help. Maybe I need a heating pad on my brain. I am super low and feel like we will never get better. Maybe because it's coming up to the year anniversary of when I got so sick. Susan

My girls go to a public school. It is a montessori program however offered by our school district. It has been a very good environment for them and the school has been very good about working with us to help us with any needs they have had. We have a 504 plan in place. I have been very lucky so far that they have been able to be in fairly good shape at school and fall apart at home. But also this school is flexible so they can arrange their day a little more around their needs (for example dd9 can go to a quiet corner of the room when she is overwhelmed and she wore noise reducing headphones for much of the year when the class got too loud). Susan

After starting dd9 on Chlorella, she is (I think) detoxing and I'm glad I started her on 800 mg a day (that is 2 caps of the brand we are using). She got a very bad cankersore, increased senstivitiy to clothes (she felt they were sharp against her skin), very annoyed and irritated, maybe some other symptoms. I'm assuming this is good detox. I am thinking of switching to th biopure since this seems to be working for her maybe we need a better product to really hit this out of the park. How do they taste since they are tablets? One thing is that she is so tired of taking pills, I hate to increase it. Also, Regarding the clay, should that be taken away from all supplements and probiotics? I'm finding it hard to find a time to give it to dd8. Susan

Yay! I'm so glad you got one! I love mine too. I meant to get in it tonight but ran out of time. I just started Cats Claw and I feel crummy so it will help my herxing! Susan

My dd9 and I are taking 2 400 mg pills a day, we just started last week so we were starting slow to see how it went. I don't know how much to work up to though. We just have Jarrow brand, nothing fancy or special so hopefully it will work! Susan

I have heard that CD57 shoudl really be run through Labcorp (although I have not heard anything about how reliable Igenex test is, it may be fine). But also that it is not reliable in children. Susan

I remember reading this with great interest and feel that it is very important. But I came away not really knowing what to do next. I wish I had a doc that knew what direction to take. I'll ask our neurologist next time we go if I can get this printed off. If we can come up with a biotoxin protocol with testing and treatment, I think it would help a lot of people. Maybe it's already out there and I just don't get it. Susan

We were all tested by Igenex. We were all positive by Igenex standards but negative by CDC standards. DD8 and I were one starred band away from CDC standards (if I'm remembering correctly). I also had my CD57 taken and it was 30 which is not a diagnostic for lyme but it is a good indicator especaially along with the other testing. Susan

It's an antimalarial drug. I have it spelled wrong, it's actually plaquenil but the real name of the drug is hydroxychloroquine.... http://en.wikipedia.org/wiki/Hydroxychloroquine