ShaesMom Posted April 25, 2011 Report Share Posted April 25, 2011 I called a Doc in MO who happened to have a cancellation for tomorrow! So, I'll be able to get Shae in for a full visit and myself for just a 15 minute visit to become an established patient. It's a five hour drive so we will be leaving after school today. So--how do I prepare for this on such short notice? What is the most important questions I need to be asking? Link to comment Share on other sites More sharing options...
MichaelTampa Posted April 25, 2011 Report Share Posted April 25, 2011 Gosh, that's great, but yes, now it's short notice. Hopefully whatever various blood and other test results you have, bringing copies of them might help a lot. Link to comment Share on other sites More sharing options...
mama2alex Posted April 25, 2011 Report Share Posted April 25, 2011 That’s fantastic! Nice job mom!! Off the top of my head, I’d say you need to bring any/all lab reports (copies for him to look through and keep on file) in chron order. A list of any/all symptoms/illnesses she’s ever had would be helpful – something simple, without dates, that he can just run down quickly. Also, a simplified timeline with the most relevant changes in her condition, such as when you saw her first symptoms of any kind, when PANDAS started, when you started IVIG, onset or diagnosis of major illnesses, onset of recent rages, etc. If you can do the same with your history, including your tick attachment, that will give him a lot of important information. If you have videos of behavior or pictures of rashes, that would be good too. Bring a pen/paper and force yourself to take notes - it may be hard to take everything in during the appointment, so its good to be able to look back at it later. I’m sure others will chime in with things I haven’t thought of. It’s a lot to do in one day, but whatever you can get done will be helpful. Good luck tomorrow! Looking forward to your update. Link to comment Share on other sites More sharing options...
justinekno Posted April 25, 2011 Report Share Posted April 25, 2011 (edited) Great news! It might not be possible since it's such short notice, but I find taking someone with me so that I have another set of ears can be helpful too, especially on a first appt. Other than that, I agree with everyone else's suggestions. Bring all of your labwork and a chronological history of illnesses, symptoms, appts, vaccines, etc. Good luck! Edited April 25, 2011 by justinekno Link to comment Share on other sites More sharing options...
cobbiemommy Posted April 25, 2011 Report Share Posted April 25, 2011 Are you seeing dr C or Dr R? Dr. C will be very thorough, Dr. R's nurse will be very thorough but she is a little scattered. Write down your questions. Also, for now or in the future, start a binder with lab results and track dates and treatments. Good luck... Cobbie Link to comment Share on other sites More sharing options...
ShaesMom Posted April 25, 2011 Author Report Share Posted April 25, 2011 (edited) Are you seeing dr C or Dr R? Dr. C will be very thorough, Dr. R's nurse will be very thorough but she is a little scattered. Write down your questions. Also, for now or in the future, start a binder with lab results and track dates and treatments. Good luck... Cobbie We are seeing Dr. C. I've heard good things about him. Have you seen him? I already have two 3" inch binders filled with her medical history so I think I'm prepared in that area. Last several months of sx are written down in planner so I'm good in that area too I hope. Edited April 25, 2011 by ShaesMom Link to comment Share on other sites More sharing options...
sf_mom Posted April 25, 2011 Report Share Posted April 25, 2011 So excited to hear about your appointment. Good luck. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted April 25, 2011 Report Share Posted April 25, 2011 I have been thinking about you and so happy that you have an appointment!!!! YEAH! Elizabeth Link to comment Share on other sites More sharing options...
pixiesmommy Posted April 25, 2011 Report Share Posted April 25, 2011 Whew!! So glad for you. Sorry I didn't email you back last night- Pixie WAS on abx when we did the Igenex. I read someplace that you shouldn't be, but then I have read that abx can draw more bands out, so I think it's 6 of one, half a dozen of another. Let us know how it goes. We see the LLMD tomorrow too. I'll be thinking of you. Hugs Link to comment Share on other sites More sharing options...
EmersonAilidh Posted April 25, 2011 Report Share Posted April 25, 2011 Happy for you! Link to comment Share on other sites More sharing options...
Suzan Posted April 25, 2011 Report Share Posted April 25, 2011 Yes! I am so glad! I can't wait to hear what the LLMD has to say about Shae (and you). Susan Link to comment Share on other sites More sharing options...
justinekno Posted April 26, 2011 Report Share Posted April 26, 2011 I think you can be on antibiotics for the regular IGG and IGM testing but not for the PCR tests. I called Igenex when we did our testing and I believe that's what I was told. We ended up going off of antibiotics for other reasons so I didn't retain the details but I'm pretty sure that's what I was told. Whew!! So glad for you. Sorry I didn't email you back last night- Pixie WAS on abx when we did the Igenex. I read someplace that you shouldn't be, but then I have read that abx can draw more bands out, so I think it's 6 of one, half a dozen of another. Let us know how it goes. We see the LLMD tomorrow too. I'll be thinking of you. Hugs Link to comment Share on other sites More sharing options...
philamom Posted April 26, 2011 Report Share Posted April 26, 2011 (edited) y Edited April 29, 2012 by philamom Link to comment Share on other sites More sharing options...
pixiesmommy Posted April 27, 2011 Report Share Posted April 27, 2011 How'd it go? We ended up at our LLMD yesterday and I was telling him about Shae and that you were trying to get in w/him. He said he would be happy to do a phone consult w/you before June if you have your Igenex results. He has a few Lyme patients w/EE. Thinking of you. Link to comment Share on other sites More sharing options...
ShaesMom Posted April 27, 2011 Author Report Share Posted April 27, 2011 So we both saw the Doc yesterday. He did a full new patient workup on her and I got a quick 15 minute overview so I could be an established patient and get treatment. I had my paper and pen out but once he started talking I never bothered to write anything down. I should have given the paper to my husband. I liked him-he was very nice and has been treating TBI for 20 years. I don't remember his exact numbers (can you say "brain fog") but it was something like he has tested 450ish patients in the last couple of years and 370ish have come back with positive ASO & Anti Dnase B titers. He has had 5 children with high titers get their tonsils removed and 4 have completely improved and 1 is 70% improved (strep wise & raging). He uses the WB and does some other testing but does not test for the coinfections-just treats for them based on sxs. I specifically asked about MycoP because she has never been tested for it but he didn't want to test for it (I would though). I think I would also like to know for sure if she has the other infections or not. He gave me Rx's for Lyme, Babesia & yeast. He gave her Lymes, Babesia, Bartonella, & yeast. He did not say "Yes-I think you have TBI's" but would rather wait for the WB results and abx trial. I'm going to have my ASO & Dnase checked and then start on Ceftin. He gave her an Rx for clindamycin & alternating amoxicillan for the strep to start after her blood is drawn for the WB in two weeks(waiting on IVIg) and then will start on Zithromax after WB results are back if necessary. I'm very intrigued by the fact that Pixiesmommy's Doc has other patients with EE. I feel this complicates TBI treatment as did the MO Doc. The MO Doc also talked about some alternative treatments in regards to the EE that just don't jive with what I know about EE. He had never heard of EE and I had to explain it to him. So-I think I will keep the appt with the other Doc for her and get a second opinion. It also gives me hope that maybe her EE is infection related from the Lymes and may be curable. That would be a miracle!! Link to comment Share on other sites More sharing options...
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