colleendonny Posted February 16, 2012 Report Posted February 16, 2012 Hi all, Was wondering something. We have been seeing Dr.B. We have seen him once in December and once in January and will see him again on the 29th. My DD also has ehrlichiosis and a suspicious IgeneX test results for Lyme. I'm assuming Dr.B will refer us to Dr.J, whom I already have an appointment with. But there is another LLMD in the area who I would like to see that I have an appointment scheduled with. I'm leaning more towards the other LLMD integrative doctor. But I still don't want to not see Dr.B. I would be worried that with PANDAS in the news so much lately that he will eventually not be able to see new patients. And I don't want to be stuck not having a PANDAS doctor who is so knowledgable about the disorder. Does anyone see Dr. B and see an LLMD who is not Dr.J? I'm just wondering if he would be willing to work with another LLMD. And again, if one doctor doesn't agree with another doctors efforts with treatment options, how does one know which route to go? I'm confused
Tamistwins Posted February 17, 2012 Report Posted February 17, 2012 Hi all, Was wondering something. We have been seeing Dr.B. We have seen him once in December and once in January and will see him again on the 29th. My DD also has ehrlichiosis and a suspicious IgeneX test results for Lyme. I'm assuming Dr.B will refer us to Dr.J, whom I already have an appointment with. But there is another LLMD in the area who I would like to see that I have an appointment scheduled with. I'm leaning more towards the other LLMD integrative doctor. But I still don't want to not see Dr.B. I would be worried that with PANDAS in the news so much lately that he will eventually not be able to see new patients. And I don't want to be stuck not having a PANDAS doctor who is so knowledgable about the disorder. Does anyone see Dr. B and see an LLMD who is not Dr.J? I'm just wondering if he would be willing to work with another LLMD. And again, if one doctor doesn't agree with another doctors efforts with treatment options, how does one know which route to go? I'm confused Do u mind to share the name of this other llmd, u can inbox me if you don't want to post on here. I don't think u need to worry about seeing another llmd. I think as long as your llmd keeps you on an abx that protects well against strep in addition to fighting off the other issues then you should be fine.
Orion Posted February 17, 2012 Report Posted February 17, 2012 And again, if one doctor doesn't agree with another doctors efforts with treatment options, how does one know which route to go? I'm confused PM sent. When DD's doctor's haven't agreed, then you have a decision to make as to which protocol to follow. You know your child the best, you need to weigh the pros and cons, then decide what makes the most sense, or which treatment feels the most right. The doctors we have been dealing with, have been most professional and have accepted our decisions. [caveat: Except for once, when DD's PCP screamed at DD when she had a convulsing episode and pretty much fired her as a patient. Turns out the PCP believed she was faking them. It wasn't til after he fired DD that he contacted her neurologist whom I know set him straight in a hurry! The point of this is that if the doctor's don't agree, then their true colors may come out, and you are better off knowing that.]
tpotter Posted February 17, 2012 Report Posted February 17, 2012 you have nothing to worry about with Dr. B. We see another LLMD, and he has no problem with it. They do not consult with each other, which Dr. B. and Dr. J. might (I don't know for sure if even they do), but Dr. B's primary concern is covering all bases, which includes making sure your child does not have lyme also. He was one of the first PANDAS specialists who actually jumped on the bandwagon with lyme. Since Dr. J. is close to Dr. B, and Dr. J. has a good reputation, it only makes sense that Dr. B. would have started referring to him. But, again, don't worry if you want to use another LLMD. In fact, we see 6 different docss (Dr. B, Dr. L, LLMD a holistic chiropractor, a DAN doc,& a primary care doc. I do all the coordination (because none of them seem to have to the time, so I make sure they all know what the other is prescribing, and all test results.
Bill Posted February 17, 2012 Report Posted February 17, 2012 I agree with tpotter and we also act as the coordinator. In cases of disagreement, we make the best decision we can. To keep it a little cleaner though, I have designated one doctor as the official lead in my son's care. Dr. J. is for consult. Dr. B is providing the IVIG so the only decision there for us is whether or not it's worth it and not to add to much at a time. A fourth is our psychiatrist who just helps us monitor the psychological angle and drug interaction. The doctors all know who we are working with and that I am arriving with all of the latest information from the others. At the end of the day - they all really do understand the road we've been down and understand that many of us now proactively take the lead for our child's care. The good ones do not get offended! bill
bulldog24 Posted February 20, 2012 Report Posted February 20, 2012 I think I know the doctor you are considering,Dr.. M? I say go for it, I have seen him myself for lyme. He is excellent, He will work with dr, B. I have asked him this myself. as far as dr. j goes, he is excellent, but with his age and current state of affairs I wouldnt go there.
colleendonny Posted February 20, 2012 Author Report Posted February 20, 2012 Yes,.it is Dr. M. I am excited to meet him as he sounds like a wonderful doctor. My concerns with Dr. J are his age as well. I trust that he is an excellent doctor, but who is to say the the doctors that are currently working with him now will be just as excellent? I would love to see both but it is just not in our funds. Are you coming to the Hanover meeting? I would love to chat with you more!
Orion Posted February 20, 2012 Report Posted February 20, 2012 (edited) I do all the coordination (because none of them seem to have to the time, so I make sure they all know what the other is prescribing, and all test results. The doctors all know who we are working with and that I am arriving with all of the latest information from the others. bill I agree, and when working with a team of doctors, this is very important. In our case we have a PCP who helps with the insurance issues, the primary LLMD, neurologist, endocrinologist and opthamologist. All are Lyme literate (Lyme is the underlying reason for the PANS diagnosis), but look at the same test results, even the basic CBC, from different lenses. No matter who we are visiting, we provide them with their own copies of the latest test results and complete medication list. This can get confusing as to who needs what test results, and can take a good bit of organization! Some of the doctors are more prone to commenting and give their suggestions on how to tweak things. Others wait to be asked for their thoughts (especially if there seems to be a potential conflict of opinions.) It is nice to have imput from a different perspective. Edited February 20, 2012 by Orion
missionmom Posted February 20, 2012 Report Posted February 20, 2012 Have looked in the acronyms and can't find LLMD or DAN doctor. WIll someone define these for me please?
Orion Posted February 20, 2012 Report Posted February 20, 2012 Have looked in the acronyms and can't find LLMD or DAN doctor. WIll someone define these for me please? DAN = Defeat Autism Now LLMD = Lyme Literate Medical Doctor; basically a Dr. who disagrees with the IDSA (Infectious Disease Society of America) position on Lyme Disease and the treatment thereof. They are more apt to follow ILADS (International Lyme and Associated Disease Society) protocol realizing that Lyme Disease is not hard to catch and not always easy to cure. Their practice is generally geared to treating mainly Lyme disease and co-infections (Babesiosis, Ehrlichiosis, Bartonella, etc.
bulldog24 Posted February 20, 2012 Report Posted February 20, 2012 Yes i am excited to go to the hanover meeting. Dr. M treated my lyme while i was pregnant. He did a great job and my baby is lyme free. I spoke to him about pandas. He told me he works with dr. B all the time. I do know he is close to dr. J as well because he called him right up during an appt of mine to ask a q. So in my mind its like getting a 2 for 1! I aso like that dr m is aware of financials and tries to keep the costs down.
bulldog24 Posted February 20, 2012 Report Posted February 20, 2012 The only negative i can think of is that he is 3 hours away! Looking forward to the meeting
colleendonny Posted February 20, 2012 Author Report Posted February 20, 2012 Glad to hear of another who loves Dr. M!! I think the 3 hour ride every few months will be worth it I'll meet you on Monday
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