momaine Posted January 7, 2011 Report Posted January 7, 2011 I spent yesterday reading and trying to decide which lyme doctor to bring my dd to. She has PANDAS and has had 4 HD IVIG and while she has made GREAT strides and I am so very grateful for that, her healing seems to have stalled out. She probably improved 70% after the first one but we've struggled to maintain that improvement. It's been one thing or another...another sinus infection, the flu, and who knows. We had lyme testing done with Igenex in Oct. It says negative but there are lyme specific bands that are positive or IND. (I recently learned) So now, I'm investigating lyme. The year our pony came down with lyme (in hindsight, we had him put down) was the year that my dd's symptoms began. Since then, our other two horses and our dog have been diagnosed with Lyme disease. It's not a far stretch to think dd's problems could be a complication of chronic lyme. She is exhausted all the time and sleeps 15 hours a night frequently. (then I wake her up) She still reacts to every virus that goes around and just being exposed to strep sends her over the edge. I feel like we're missing a piece of the puzzle. In the end, I decided to take her to Dr. Jones. I pray it is the right decision. I'll take any thoughts or advice of what to bring. I'll get a copy of all her labs and bring those. I'll have Dr. B's office send her file.
philamom Posted January 7, 2011 Report Posted January 7, 2011 Momaine- We see Dr. J and have been very happy with the progress we are seeing with our daughter. There are so many things she is able to do now, that she wasn't able to do prior to treatment. By examining her and going over her history, he was pretty certain she had Bartonella, even though she had a negative Igenex co-infection panel. He tested through another lab, and it was positive. He also ran a ton of labs thru Quest. My daughter has Lyme, Bartonella, and Rocky Mountain Spring Fever (IGG). I sent my daughter's entire history, including copies of all lab tests to his office prior to the appt. Send me a pm if you are interested in seeing the labs ordered from Quest by Dr. J. Good luck with your appt! Melinda
sf_mom Posted January 7, 2011 Report Posted January 7, 2011 I think your daughter will be well served by Lyme antibiotic protocol. There are many trending much, much better from new protocol when the hdIVIG and PEX were not providing full remission of symptoms. These individual for the 'most part' have stopped the hdIVIGs all together and given their children time to heal. I know there has been mixed results with the treatments (about 1/2 do well and about 1/2 it just extends or maintains low level symptoms and sometimes can't get beyond 70%, 80%, 90%) and I know Dr. J has been recommending them to patients due to his connection with Dr. B. Anyway, I wanted to give you a little confidence that after 4 hdIVIG you might want to let things settle for a while and give her body some time to heal without treatments. In six months or one year if she is not trending beyond 95% then maybe reconsider. So sorry about your animals... I understand WI and MN are having similar problems. We'll all be here for support and looking forward to hearing of further recovery for your daughter.
PacificMama Posted January 7, 2011 Report Posted January 7, 2011 Hi Momaine, I think you have made a great choice. Dr. J was/is my daughter's doc, and we owe him for essentially saving her when the rest of her docs would/could do nothing. Yes, get all your files to him ahead of time. He will review before appointment. My one tip, and I do this for any doc, is to put togther a simple chronology going as far back as you think is relavent (even birth). I do 2 or three columns: Date; Notes; and maybe meds started/stopped. I bold very relavent material. It just makes it so much easier to scan, and of course I keep it updated. He gives such an unbelievably thorough exam, and will get you started on an appropriate plan if warranted. My only other thing to offer would be that while I think he will be invaluable to you right now, he is of course up in years. It is just prudent to have a plan B doctor for the future. That may be Dr. B in a pinch, but ideally should be a llmd that follows Dr. J's protocols. Best of luck! Mary
momaine Posted January 7, 2011 Author Report Posted January 7, 2011 You guys are great and have given me great confidence in my choice. I will keep you informed and take all the things you said into consideration. I have to call the hospital and have labs sent to him as well as call Dr. B's and have the Igenex sent to him as well as her files. Then I need to sit down and update my own files her. Thanks so much,.
momaine Posted January 7, 2011 Author Report Posted January 7, 2011 Does anyone have a hotel suggestion, reasonably priced, not too skanky.
philamom Posted January 7, 2011 Report Posted January 7, 2011 Does anyone have a hotel suggestion, reasonably priced, not too skanky. We stayed at the Premiere Hotel and Suites. They are individual units. We brought my mother along for the visit, so it was cheaper than getting two rooms elsewhere. It's located 10 minutes from his office.
mandyknowles Posted January 7, 2011 Report Posted January 7, 2011 My daughter sees Dr. Jones. When we went to see him, my daughter had to use a walker and a wheelchair and could barely sit up. a year into treatment she is walking, running, jumping, acting like a normal kid. She still has alot of complications from time to time, but alot of the time she looks and acts completely normal.
philamom Posted January 7, 2011 Report Posted January 7, 2011 My daughter sees Dr. Jones. When we went to see him, my daughter had to use a walker and a wheelchair and could barely sit up. a year into treatment she is walking, running, jumping, acting like a normal kid. She still has alot of complications from time to time, but alot of the time she looks and acts completely normal. WOW MANDY...FANTASTIC!!!!
momaine Posted January 8, 2011 Author Report Posted January 8, 2011 My daughter sees Dr. Jones. When we went to see him, my daughter had to use a walker and a wheelchair and could barely sit up. a year into treatment she is walking, running, jumping, acting like a normal kid. She still has alot of complications from time to time, but alot of the time she looks and acts completely normal. Wonderful!
lyme_mom Posted January 8, 2011 Report Posted January 8, 2011 Nobody knows what is and is not Lyme disease and his physical exam is like nothing I have ever seen. He is so compassionate too and held my son's hand while they drew blood because he was so afraid to see another needle after his picc line. The only thing I suggest you do is to add high doses of probiotics and lots of detox to whatever dr jones has you do. We worked with an excellent holistic llmd too who tested for heavy metals and prescribed ldn, low dose naltrexone, a powerful immune support supplement. Seems to be used by the holistic Drs more. Also check your house for high emfs and mold as these can be huge factors in illness. I didn't know of these things initially and 18 months into my son's treatment learned his bed had super high emf readings. We turned the power off to his room as a solution. He is doing very well now and finished his treatment in sept.
philamom Posted January 8, 2011 Report Posted January 8, 2011 Momaine- We had a list of all antibiotics my daughter was on since she was born (got a print-out from the pharmacy). Unfortunately, my daughter was on them a lot for recurrent sinus infections. It helped along with the history, and of couse the examination, to decide which abx to start with, if you end up treating for lyme.
momaine Posted January 8, 2011 Author Report Posted January 8, 2011 Nobody knows what is and is not Lyme disease and his physical exam is like nothing I have ever seen. He is so compassionate too and held my son's hand while they drew blood because he was so afraid to see another needle after his picc line. The only thing I suggest you do is to add high doses of probiotics and lots of detox to whatever dr jones has you do. We worked with an excellent holistic llmd too who tested for heavy metals and prescribed ldn, low dose naltrexone, a powerful immune support supplement. Seems to be used by the holistic Drs more. Also check your house for high emfs and mold as these can be huge factors in illness. I didn't know of these things initially and 18 months into my son's treatment learned his bed had super high emf readings. We turned the power off to his room as a solution. He is doing very well now and finished his treatment in sept. Lyme mom, Thank you for hanging around this forum and helping those following a similar path. I am grateful for your input. what do you use for detox? (is this charcoal and where do you get it and does brand matter?) Do you consider your son completely healed, at this point? How long was he on antibiotics once he began lyme treatment and how long before he was considerably improved? HOw long did he suffer before diagnosis and was he diagnosed with PANDAS first? I've read here so long I should probably know, but I tend to skim stuff unless it seems like it pertains to me. Thank you!!!
momaine Posted January 8, 2011 Author Report Posted January 8, 2011 (edited) edited Edited January 8, 2011 by momaine
momaine Posted January 8, 2011 Author Report Posted January 8, 2011 Momaine- We had a list of all antibiotics my daughter was on since she was born (got a print-out from the pharmacy). Unfortunately, my daughter was on them a lot for recurrent sinus infections. It helped along with the history, and of couse the examination, to decide which abx to start with, if you end up treating for lyme. This is a great idea. I'll ask my pharmacy.
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now