filinha1 Posted October 22, 2012 Report Share Posted October 22, 2012 Does anyone had recommendations for Lyme Literate pediatricians in Maryland? We have just gotten a diagnosis of PANS from a pediatric neurologist and I'd like to find a local pediatrician to be part of my daughter's healthcare team. Thanks! Link to comment Share on other sites More sharing options...
KaraM Posted October 23, 2012 Report Share Posted October 23, 2012 (edited) There is a Nurse Practitioner from Washington DC that observes in Dr. Jones' office at least once a month and is quite knowledgeable about Lyme as well as alternative treatments. She's not a pediatrician, does specialize in treating Tick-borne illnesses. Maybe she can help. I will PM you (or anyone else who wants it) her info . Does anyone had recommendations for Lyme Literate pediatricians in Maryland? We have just gotten a diagnosis of PANS from a pediatric neurologist and I'd like to find a local pediatrician to be part of my daughter's healthcare team. Thanks! Edited October 23, 2012 by KaraM Link to comment Share on other sites More sharing options...
Hopeny Posted October 23, 2012 Report Share Posted October 23, 2012 We are in NY so I have no specific references for you but my experience has been that there are very few Lyme literate pediatricians. What I have been (so thankfully) able to find after much searching is a compassionate pediatrician who is open minded and will work with DD's other treating doctors. The particular pediatrician we are seeing also has an MPH and I saw on her bio that she had done some stints in far reaching impoverished places. It turned out to be clues that she was more aware of these types of diseases and also a sign of her compassion. I also believe that Beth Maloney has a list of PANDAS doctors, but take it with a greain of salt. My former pediatrician is on that PANDAS list, but is totally Lyme illiterate and does not believe in chronic Lyme, and further his practice missed my DD's case and never suggested PANDAS, in fact when the first round of testing was done in that practice and me not knowing anything asked if she could have "strep in her blood", ASO was not even run. Good luck I know how difficult this is. Link to comment Share on other sites More sharing options...
mdmom Posted October 24, 2012 Report Share Posted October 24, 2012 I will PM you a name. Link to comment Share on other sites More sharing options...
djerock1 Posted April 4, 2013 Report Share Posted April 4, 2013 Hello, I just joined. My fiance has had Lyme for 12 years. We just had a baby girl (2 months old) She's started to become very inconsolably fussy, without obvious reason. We're not so blind as to immediately jump to a Lyme diagnosis... babies can be fussy for tons of reasons. We would like to start getting some tests and information though. Does anyone know of a Lyme Literate Pediatrician in the area? We live in Gaithersburg. Link to comment Share on other sites More sharing options...
filinha1 Posted April 5, 2013 Author Report Share Posted April 5, 2013 Hi there, I PM'd you. Heather Link to comment Share on other sites More sharing options...
tpotter Posted April 5, 2013 Report Share Posted April 5, 2013 Does anyone had recommendations for Lyme Literate pediatricians in Maryland? We have just gotten a diagnosis of PANS from a pediatric neurologist and I'd like to find a local pediatrician to be part of my daughter's healthcare team. Thanks! PMing you right now Link to comment Share on other sites More sharing options...
tranquil1 Posted November 11, 2013 Report Share Posted November 11, 2013 My 11 year old son was diagnosed with lyme in May, treated for 30 days with doxy in June/July (after failing initial amox treatment). Repeat test done in August was negative. While symptoms have improved for his joints, he is now progressively getting worse neurologically: daily headaches, shooting pains in various locations, word retrieval issues, memory issues, confusion, fatigue, etc. I would love to have him seen by a LLMD, preferably pediatric neurology specialty. We are located in Wisconsin, but will travel if the right person is out there. Any suggestions are much appreciated! Link to comment Share on other sites More sharing options...
rowingmom Posted November 11, 2013 Report Share Posted November 11, 2013 Hi and welcome. It sounds like your son may be relapsing or perhaps showing symptoms of a coinfection (bartonella, babesia, ehrlichia) that wasn't addressed with doxy/amoxicillin. Sorry I'm not of any help with suggestions for a LLMD - perhaps start a new post stating LLMD in Wisconsin and others may help. You could try contacting ILADS for a referral, but they seem to be slow in responding. Worth a try though. Link to comment Share on other sites More sharing options...
LNN Posted November 11, 2013 Report Share Posted November 11, 2013 You can turn sero-negative after a period of time, even if the infection is still there. From a symptom standpoint, sounds like something is still brewing. We have a great LLMD in CT if you decide you need to travel. PM me if you want his name. Link to comment Share on other sites More sharing options...
Hopeny Posted November 11, 2013 Report Share Posted November 11, 2013 I just want to second that we use llm's doctor and he is awesome. If he has a wait list there is another doctor in upstate New York that is also extremely well known I can pm you, dr h. He has a new book coming out this week that I am looking forward to reading. I am sorry you are going through this, it is good that you are pursuing treatment Link to comment Share on other sites More sharing options...
Hopeny Posted November 11, 2013 Report Share Posted November 11, 2013 Ps to add Lyme literate docs are familiar with. Lyme neuro symptoms so it's possible to work with a regular llmd for neuro symptoms. Actually I have been surprised/impresses with put doctors in regards to their knowledge about ophthalmic and neuro symptoms. I tried to find a Lyme literate neurologist early on but gave up Link to comment Share on other sites More sharing options...
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