Suzan

This was on yesterday morning in the hotel as we were waiting to go to the LLMD! My dd's could not believe it (me either)! I kept thinking Lyme too but I didn't say anyting because that's what I always say now and was trying not to be annoying. When we were at the LLMD's office, dd9 tells the doctor about seeing the episode. She asks dd, "did you learn anything from watching it?" dd thinks and says "I learned that the lyme tests are only maybe 50% accurate so you can't count on the test." LLMD says "and probably not even that accurate". Susan

Wow! So glad you liked her! She is starting you on some strong stuff. Diflucan and flagyl are cyst busters. I took flagyl and it made me feel a little on edge but I felt better when I stopped it. I know others who feel it really helped them. Try taking it w oj to avoid tasting it- so gross. Makes sense to stagger the herxing starting with you. I feel so bad for you and what you have ahead of you but know that you will gt better and so will your kids now that you are treating the tbds. Thanks LymeMom and Wendy! Regarding the Flagyl, we are starting at 1 weekend a month to spread it out. I think she feels we need to hit it with the three stages (she drew a great picture that really helped me understand ) I don't know if I learned anything new, I guess in a way it was all new or a deeper level of understanding. But I don't have an idea of how long treatment will be. I'll have to have that in my list of questions for next time! She did say she felt like it will be a long road for me. Susan

We saw our LLMD today for the first time. I don't quite know what to post about, there was so much going on and it was so hard to keep up. I really like her and I think she will be a great doc for us. 5.5 hours of appts today. It was a marathon. She agreed that we all have lyme. dd9 is a clinical diagnosis, dd8 and I were confirmed by Igenex. She is starting me on treatment first so I can see how I do to ensure that I can take care of the children well when they start. This was hard to hear since I am so wanting to get them some help. But since they are on zithromax and probiotics already, and this is a part of what the protocol would be, I do appreciate and understand her position. I am their sole provider and if I can't take care of them, we are up a creek. Her goal is to keep me at work and the kids at school but to also get rid of the lyme, a delicate balance. She can't tell how long I've had it so she is assuming the kids got it from me during childbirth but there is no way to know. So we can't know how much of their symptoms are from lyme. It's just time to start the treatment and see how we do. She is happy to work with our local neurologist so we will talk again at our next appt in December to start the kids treatment. She thinks they will still need IVIG's down the road. I don't know what else to say. My mind is on overload. Susan I start this week after my blood draw with Stage 1 (should take 3-4 weeks) Nystatin, Diflucan, Questran, Plaquinil and Flagyl. Then stage 2, Zithromax and stage 3, Amoxicillian

Hi, I would recommend running the Igenex test again and seeing a lyme doctor. Some will say see the lyme doc first. Either way, sounds to me like lyme is an issue. Good luck! Glad you had those test results! Susan

Wendy, you will be set in the wine drinking after we all have to pay up. Luckily your memory is so poor right now! You may not remember everyone who owes you! Nancy, good luck with the testing. I think your chances are pretty high from what I've heard with this group and what you describe with symptoms! Susan

Thank you Emerson and Matis Mom! I am feeling much better today after dealing with much less complex issues like making my dd's birthday cake (she is 8 today). Only 2 more days and we leave for the LLMD. I know that only means our journey begins then but it is a welcomed journey. I hope I can remember that as things get worse after we start our treatment. I wish I had a big family here to help us but we will keep on pushing through and get better. Susan

Thank you all for your great responses to my "happy about my neurologist" post! That was really great to see your shared excitement about it. I had a really hard day today. I worked from home and had the kids with me and was very busy with lots of meetings and tough issues in front of me. It was the first day that I really worried that I could lose my job if I didn't get myself under control. My brain is so dysfunctional right now it's hard to believe, started at the end of July with my Parsonage Turner Syndrome event. I have always been a quick thinker and could keep many balls in the air at once, great memory and really on the ball, at least where work was concerned. I might not be able to keep my house clean but I could really impress everyone at work! Now I feel like I can barely handle complex situations. I can't remember to finish an email. I can't remember an issue without fully briefing myself from notes. I can't wrap my brain around an issue to fully understand it. I can't handle detailed situations that may require that I organize, coordinate, strategize(is that a word?). This is what my job is all about right now. In searching for a cure for my daughters, I find myself in this lyme fog that I did not expect to find myself. What would I have done if I was not searching for them? If I had not trusted that something was wrong with them, discovered PANDAS and the parents at Lattitudes? I guarantee you I would not have ended up going down the lyme path. My doctors never would have sent me that way. So it's a strange place to be in. I think I gave my girls lyme, but I think they helped to diagnose me. Susan

We saw our neurologist today for my girls. He's the one who has been treating dd9's PANDAS with IVIG's and monitoring dd8's seizures. He is not against us pursuing lyme and actually thinks it's a good idea. He would like to talk to our LLMD and possibly get a working relationship with her if she's interested. He believes lyme could be causing our issues and will be a good resource here. I am really happy about that. Our plan is to start treatment with the LLMD and then check back with him in a few months. He has other ideas after we treat the lyme if we don't get to 100%. He is starting a clinic to just treat pandas, autism and other conditions that are autoimmune/neurological/movement disorders. He is an outside the box thinker and treats the patient and does not just respond by the book. I really like that. He has to go through his process to get to the answers which might take longer than I like. But I feel like he will help give me thoughts about whether something is quackery or not and help me feel OK about going outside mainstream doctors for this. DD8 has to get an EEG in 2 weeks for her seizures. We see our LLMD on Tuesday. Susan

OMG, I am so sorry that this happened. How horrible. How is your son now? Susan

My insurance company sent me back 60% of the cost of the tests. I felt very fortunate to get that! Susan

Great information thank you and I am so glad you are getting answers and results! Do you (or your LLMD) feel that the food allergies will turn around when the lyme is addressed? We have Dairy and Gluten issues here and a few others. Susan

Yes, I have read that too and I have had a very hard time keeping my vitamin D levels up. Susan

I will PM you the info of our LLMD who is very close to you. We see her next week, finally! Susan

I took gabapentin for nerve pain when I had the pain from my parsonage turner syndrome. It worked very well in reducing the pain that the hydrocodone could not touch. It made me very sleepy though if I took so much. It made me sleepy so if your brain needed settling down, I imagine that it could work. I did not have any negative side effects. Susan

Our LLMD requested that we get the Igenex Western Blot, IgG and IgM before we saw her ($200 but thankfully our insurance paid $120 back). She does an undepth review of medical history and symptom history before you get there to hopefully use the inperson visit wisely. That said, we are still waiting on our appt to be scheduled so I don't know what other testing she will need us to do. Good luck! Susan

I did this years ago for a former doctor of mine who missed diagnosing my thyroid problem. I sent him a letter to let him know how I was diagnosed to maybe help people in the future because I really suffered for a long time and he basically was saying I was just stressed and needed to change my lifestyle. He wrote me back and said he would not change anything and did not feel he should have done anything differently. I figure he didn't want a possibility of any law suits. I just hope maybe he thought about it later and maybe added the antibody test onto his standard protocol. I mention this because if you do this, if you can, let go of any expectations of getting any responses back or getting responses back that you did not expect or appreciate and just hope it helps others out in the long run. Maybe there is a way to say, Hey, here's some information you may not have known about when you were diagnosing my child and I thought I'd pass it along since we would have benefited to hear about it sooner and would not have suffered so much.... Just some thoughts off the top of my head based on my experience with it..... Susan

I think you may be right. I hope I have not blown it already with our immunologist. But I can always let them tell me "it's not lyme" and then go see the LLMD. Susan

Are you telling your regular doctor about your Igenex lyme testing and results? Do you find that most doctors poo-poo the whole thing? Are you just moving foward with your LLMD anyway? How much are you involving your regular doctors with Lyme? I am asking of course because we have started with our pandas follow up appts and our first appt went OK but not great. I fear we may be going out on our own soon with the LLMD without the support of our local docs. Thanks,

Do you know why some of the bands like this are lumped together and what does it mean if you are positive to them? That just counts as one band positive right? Susan

Mary, We are in North Carolina, however, I believe I got Lyme in California, if I am to believe that the first time I got sick in 1996 was because of lyme. I guess I just don't know. I still can't believe how many bands are positive! And I dragged my heals getting us tested. Thank you all for your support. You know I will need you! Susan

We got our test results in from Igenex today. Even though I knew it in my heart, I am still in shock. I am surprised dd7's showed so many bands, and me too really. I will send our info off today to the LLMD and hopefully we will all get in to see her in November. I am shaking, I am glad and really worried all at the same time. Me - IgM: 18++ **31+ **34+ **39 IND **41+ **83-93+ IgG: **23-25+ **41+ dd7 - IgM: 18+ **34 IND **39 IND **41+ IgG: 30+ **31 IND **39+ **41+++ dd9 IgG **31 IND **34 IND **41+ Edit - I realized it would be helpful to have the double stars in there. I think I have it right....

Just sent you a PM and asked about your dh's treatment but had forgotten to come back her and finish reading your post. That is great that he is feeling that much better. That is good news. His test results give me an indication on what the LLMD will do for my dd9 since her's were similar to his (the blot anyway). My dd's both get symptoms back if we back off the abx. Are you going to test Meg for Lyme or have you already? Sorry I don't have experience yet to help you with your question about dh. Susan

I really hate to talk about my lyme symptoms before I find out if I have it or not, but today I forgot I had to put the car back into drive from reverse to go forward. It is not a good feeling so I know your chicken experience! I know my LLMD was at the conference so that makes me feel good. I will look into this DVD. I am really enjoying Cure Unknown and I know I will like to listen to Dr. C's talk too. Susan

She could not see us in October due to all the conferences getting her behind so we are going on November. I hope that she will see us all by then. I am sending in my file and dd8's as soon as we get the results in. She really likes to do a full review of medical history, symptoms history and igenex test before doing the physical exam. Susan

No, I was not able to see any of the conference. I am hoping I can go back and see it later, do you know if that is possible? Susan