Suzan

Bells Palsy is a symtom of lyme. I think you should get yourself tested. Do you know which lab? If you need to, get the Igenex test, it is the most reliable. Between your BP and your son's symptoms, it sounds on the surface to be likely to be lyme. HUGS! Susan

How good to meet a fellow lyme/pandas parent to talk to! I am sorry for your diagnosis but glad that you will be getting the help you need. It sounds like you have a good plan. I hope your herx is not bad on doxy. I'm having a heck of a time right now on it but working my way through. Keep us posted on how you do! Susan

GOOD LUCK with the wait! It seems like forever but it will be here before you know it (easy for me to say after the fact right?). Susan

dd9 was itchy all the time. She would even scratch in her sleep. Going gluten and dairy free helped a lot. She also has bad allergies so staying on a daily zyrtec and nightly benadryl helps too. But still, she has flairs of itchy skin and I think it's related to lyme somehow. dd8 has not been so itchy but now that she's on lyme treatment, she seems to itch more. I don't know if it's the medication or the lyme. Susan

Despite her pain, dd9 has stayed very active. Her sport of choice is swimming. She joins the summer swim team and does very well. Last year, before our lyme diagnosis, she found that the only place she felt really good was in the water. I just hated what the chlorine did to her skin. She did join the winter swim clinic to stay in shape but we found it was too hard to continue to do that during the school year. dd8 is not up for any sports. I'm happy to get her to a bounce house or out to a park to just get some movement. Susan

Thanks! That link is very informative. I've been confused lately about coinfections and treatment and I think this will help. Susan

Thanks to all. I upped my probiotics today and the frequency too. I took a epsom salt bath and that seeemed to help. I made it through the day. Tomorrow will be day 3 of the increased dose.

Hello and HUGS! We found our first LLMD by writing to ILADS http://www.ilads.org/ and they sent me a list for my state. If Dr. Ann Corson is in PA, I would go to her for sure if possible. We see a neurologist who treats them for pandas but who is taking over some for lyme. He can't do as much as we need though (hospital rules against lyme) so I'll probably be taking them to my LLMD soon as our old LLMD stopped practicing. I have been on treatment for 6 months, my dd9 for 4 months and dd8 for 2 months. We have seen various levels of healing so far and I have high hopes for us all. Susan

Thanks smarty, I do feel dizzy too... I really wanted something stronger than the amoxicilin so I hope I can adjust. But if not, I'll have to do something different. Also, I noticed a few days ago something is going on with my knees. I can hear and feel them crunching and creeking around under the knee cap. It doesn't hurt but it's just not right. It gives me the hebegeebies it's so creepy. Susan

Last week I started doxy with one pill a day and I am to work up to 4 pills a day. First few days on 1 pill, I had wicked smelling diarrhea (sorry) and was sick to my stomach, flu like symptoms, etc. I increased my probiotics and ate a lot of yogurt and things calmed down after a couple of days. This week, added one pill and same thing is happening. I can't imagine taking 4 pills. I'm going to call LLMD tomorrow but I'm wondering, the diarrhea, can that be herxing or would that be the candida/yeast issue from killing all the good stuff in my gut? Can I just say I hate Candida? It complicates everything so much. I guess I really hate antibiotics and mostly I hate lyme. Susan

The way you describe feeling nauseous, I think that may be similar to how I feel when I feel really bad. I'm so bone tired that I feel sick. I find that sitting in our sauna or with a heating pad helps a lot. Something about the heat helps. My herxing or symptoms or whatever they are seem to come around the same time of day for me too. It's about 3:00pm I start to get really tired and I feel like I can't function until about 7:30pm. I spent today worried that I am becomming a hoarder for the fact that I am too tired to do much around the house. I am getting further into debt since I am too tired to cook that we eat out WAY too much. Now I did just change abx and I'm all messed up right now so I hope it will change soon. Only other thing that I've tried that seems to help is ibuprofen. I take it every 4 hours when I'm doing very poorly. Can you talk to your doctor about it to see what he/she thinks? Susan

Trust me, I know the need for therapy sessions on here! I am so sorry you are going through this! I don't know if any herbal treatments would help fast enough. I hope you get to see the LLMD soon. I have heard of people purchasing abx through pharmacy's outside the united states that don't require a prescription but I have never done that before and have no idea if it really works or how long it takes. Are you in Canada? I thought the one I had heard of was there. Susan

When I called last year, they said to wait 4 weeks after IVIG. I did get the same information as you did though about the abx though. susan

Wow, great testing you were able to get and i hope you get a lot of information from the tests and cultures. I will be interested in hearing how it all turns out. T&A at older ages are so hard to recover from! Poor thing, good luck! Susan

I did just increase her zithromax to every day rather than m-w-f but I don't think it's that since she has been on zith so long and at varying days/dosages. However I suppose it could be herxing from that. Regarding the rapid, she never would get a positive throat culture anyway in the past (at least not since she was very young) so I don't imagine it would show anything now on all these abx. She is afraid to go to school tomorrow. She says she can't recognize when she is acting this way so she can't plan ahead with some action to take. That's a very old behavior too, not being able to tell the difference in how she's acting. Sorry about your son too. I'm glad you can pin point it to the meds. That at least helps to just hang in there and work through it. Susan

You have so much going on with Shae it's so easy to ignore big signs in yourself. As far as the ID doc goes, good job fighting that one off and standing up for your baby!

What do you think about this? I got a call from dd9's teacher today. She was being so bad he actually had to leave the class to call me. She refused to be quiet and kept talking and laughing and being disrespectful and challenging. I could see it last night that she was on edge and her OCD was coming out. I immediately thought it was a strep reaction since the last time this happened at school there was a direct strep connection. I asked about strep and he said there is a boy in the class who had a sore throat and swollen tonsils this week but who never had a day off school for anything. I don't know any details about whether he was checked out for strep or not. When we get home, dd9 said her eyes vibrated (something that used to happen to her and I attribute to lyme but has not happened in months). She does not feel well at all. I want to keep her home from school tomorrow but I can't really afford to miss a day of work unless I really have to. How can I know if this is a lyme die off reaction or strep exposure?! I'm so upset, she was doing so well. Susan

I trust this source: http://www.canlyme.com/ticks.html I'd be on the look out for any rashes or changes in behavior I guess. If it looks like it bit her, and you are concened, maybe a call to a lyme doc to see if you should take any action? I don't really know what is best. Scary though to see such a big one on your dd! Susan

Nancy, this just fits one person, your head sticks out of the top, it zips up around your neck. I like that your head is not in the heat because I don't like to breathe in the hot air. I have not seen a portable one that is for two but maybe they are out there. I was also looking at infrared products that are like heating pads. I think we wolud benefit from that too for herxing. Susan

I've only read two books so far on lyme, "Cure Unknown" and "Healing Lyme..." by Stephen Buhner. This book is great for information on natural herbal healing treatments for lyme but does not go into diet. It does sound like you are on a very good diet for lyme patients. I've basically heard what the others have already said. Plus with the addition of antibiotics, low sugar and carb is always best to help prevent candida. We do a VERY POOR job at this at our house. I hope to do better. Welcome and I am sorry you find yourself here but I KNOW you will find help. Susan

I don't know about the T4 but I do know my doc says thyroid needs to be monitored with Bartonella (I think it was Bartonella and not lyme) but I assumed it would be low. Obviously I don't know I hear you about the happiness of finding a bad test. I am glad you are on the way to some action and healing. Susan

Nancy, I am very glad to hear you are doing better even though you still have a ways to go for yourself. I hope the change in meds is what your dd needs to help her, I am sorry she is having a hard time still. As far as the sauna goes, we love it! We all use it. The girls don't sweat much in it yet but I'm hoping that will change. They don't use it often enough now that it's warming up. I didn't sweat in it in the beginning either but now I do like crazy! I guess it helps with detox just from the sweating process, but I find it helps with herxing. When I just don't feel well, I hop in there and it's like a huge heating pad. I want to use it every day but in reality now it's probably once a week since I'm feeling better but when I'm crummy, every day helps a lot. This is not where I bought it from but this is the same one.... http://www.amazon.com/Deluxe-X-large-Infrared-Portable-Weight/dp/B0027831QS I don't know if I got the extra large one (it doesn't seem that large) and unless you are a very tiny person, I would recommend the x-large. My LLMD also recommends ALA and I take it daily. Susan

Our future after lyme treatment totally stresses me out and it's not just ticks anymore I think, that's the sad thing. Susan

Thanks Bill, that is very useful hearing your experience. I agree with what you say here and I wonder how likely it is to find a professional like this. Luckily between our neurologist, chiro/neuro and school, I think we will be OK but something like this evaluation, in THEORY is interesting. Susan

My dd8 is biting, kicking and hitting at school and refusing to talk. She's grabbing things out of our hands and throwing temper tantrums. Our Neuro/lyme support doc said it's either herxing or candida dieoff reaction. I'm starting to chart it to see if I can see a pattern. He said to call back in 3 days if it's not calmed down to discuss further candida treatment. I don't know what he'd do, she's already on a bunch of stuff for yeast. Susan