Finding a doctor

Once we figured out that my son had probably been exposed to lyme disease, my first step was finding a doctor who could confirm my layperson’s diagnosis and help us determine how to treat him. I felt a sense of urgency because I was worried about the 18 month lag in treatment (minimum) and the presence of neurological events that might have been caused by Lyme disease.

However, I had a very difficult time finding physicians who would treat Lyme disease in children. The doctor who had helped me through my own Lyme disease does not treat children. The most famous pediatric Lyme specialist, 80 years old and embroiled in difficult court cases because of his passion for helping sick children and his non-traditional approach (from an IDSA perspective) seemed overly busy. Another top physician, trained by him, was currently just beginning to call back folks who’d asked for appointments last June. And so it went.

Even getting a list of names of potential treating physicians was difficult. Getting names and recommendations (a necessity in my mind, in this field that is hidden away at the edges) was even more difficult. I learned which support groups gathered and kept lists of names and recommendations to provide to desparate parents and patients. I leveraged contacts I’d made attending the International Lyme and Associated Diseases conference. I emailed folks I’d met on the PA mailing list. Eventually I had one doctor in NY, Philly, or Pittsburgh (the cities in which I have family or live) that would treat my son, whom I trusted, and had found positive recommendations about. She had no openings for months, but one was willing to work with my local homeopath/MD, who was willing to read about Lyme disease. I had a few others in the DC area as a backup, but have not contacted them yet.

At this point I pulled personal connections to make things come together. I had attended ILADS, the International Lyme and Associated Diseases conference, because I am starting to do research at work on Lyme Disease. I had a local doctor who has never told me I’m crazy when I report problems with myself or my family and was willing to learn. She had the generosity of spirit to sit down with me and listen to me chatter away about everything I learned at ILADS, and I passed her my slides to keep and look at. She talked with the doctor I’d found. She ordered tests. She agreed to help monitor and watch what we did with my son. But she seemed unsure of herself when it came to treatment (naturally, this is not an area she has years of experience in, which is why I was seeking a Lyme Literate physician). Meanwhile I contacted a doctor in NY who I was hoping to work with on a research project. He agreed to treat my son and made room in his schedule almost right away. I had an appointment, with a lyme specialist, on the 17th of December, an hour north of my parents in a remote small town in the NY area.

I’m writing this post for two reasons. One is to describe my process so that perhaps others who are having trouble finding a doctor will contact me or try it themselves. But the other is to highlight what I consider to be a travesty of medicine. As a parent or a patient, top notch medical care should be available easily and quickly. There should be multiple doctors who are considered experts in this disease and are taking new patients in every major metropolitan region where Lyme disease is common. I live in Pittsburgh, the medical capital of Pennsylvania, and I have to travel 8 or 9 hours by car to see the only physician I could find who was both qualified and available in all of Pennsylvania or NY. I am picky about who I send my son to, it is true, and there may be doctors I did not discover. However, the very fact that I had to play detective to find these doctors is its own problem.

This is a consequence of a disease that is controversial and misunderstood, litigated and political, invisible and at times ostracized. This is the reason that this community has an active political arm as legislation is one route to changing things. This is the reason that research is needed, young intelligent new doctors, microbiologists, epidemiologists, anyone who can contribute must study the disease and work toward change. This is the reason that the actions of each patient who contributes to a support group, helps someone find treatment, gathers resources, is so important. This is why I write today.

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105 Comments

  1. Rick G said,

    January 7, 2010 at 12:00 pm

    Great post and a common occurrence for everyone seeking treatment. I consider myself lucky to find a Doctor in DC. I live in Chicago. Unfortunately, Many are not as lucky as me. Good luck in the treatment of your son.

  2. Joanne said,

    January 7, 2010 at 1:51 pm

    Hi Glad to hear you found a suitable lyme doctor for your son. I was lucky that I have a very supportive Doctor who has been happy to follow ILADS guidelines and then a private LLMD only one of 4 we have in the UK.

    As you say the more awareness we can raise the greater the ground swell until one day our voice will be heard.

    Best wishes to you and your son.

  3. Jessica Richardson said,

    February 2, 2010 at 7:05 pm

    I had a not dissimilar situation with my daughter. We were on vacation in Yosemite National Park 24 hours later she got a fever and flu like symptoms that lasted four days, then seemed to be over it. However after the third illness in the following two months I decided it was time to see a Doctor as it was unusual for her to become ill. They told me she was just having a reoccurring viral illness. It continued until one night I decided to just go to the ER. They said she had a UTI prescribed Antibiotic then called a few days later and said that it wasn’t one. It continued we saw the PC again and again blood work X-rays you name it. This went on for five months with no results as to why she was ill then she seemed to be over it. Life went on as usually for the next 28-24 months except she seemed to become increasingly tired and complained of headaches a lot, she was in school now and that’s what I contributed it too. Then her normally bubbly personality started to change, then her knee swelled to the size of a cantaloupe (no exaggeration). Back to the PC for over a month I got the same response we have no idea nothing shows on the X-ray come back in a week if its not better. Finally I found a new Doc who immediately tested for arthritis, the test confirmed arthritis and I was referred to a Pediatric Rheumatologist. She ordered a number of tests including both Lyme tests which came back positive. She did one 30 day courses of antibiotics the knee however remained swollen. It was then suggested that she do another 30 day course of a different antibiotic and was put on NSAID naproxen. However he knee still remained swollen so she was given artherosyntisis (sp). Even after that it remained swollen and still remains swollen it will be 2 years since treatment and she now has swelling in her ankle on the opposite leg. No range of motion in her knee she is 9 years old and walks like she is 90. I came to the conclusion that it is in my hands now and just started to do my own research when I found this site. It seems that you have been here done this and maybe you could help me. I am also in the Pittsburgh area and would greatly appreciate any information that could get her the help she needs faster.

  4. jmankoff said,

    February 2, 2010 at 7:37 pm

    I’d be happy to give you more details, and I’m sorry to hear about your daughter’s sickness.

  5. Ted said,

    April 12, 2010 at 12:44 pm

    I am also in Pittsburgh. Any information you have would be extremely helpful.

  6. Kelly said,

    April 13, 2010 at 10:15 pm

    Hi, also in Pittsburgh and need local doctors. Any information would be appreaciated for me, my 10 year son and 14 year old daughter. Even if its a Pediatrician, Pcp, Infectious Disease anything. I need the support of a local doctor that believes in chronic lyme. We’re currently treating with Hermitage LLMDs and looking for other options.

  7. jmankoff said,

    April 14, 2010 at 8:04 pm

    For those new to the Lyme world, I prefer to answer these types of questions privately due to the fact that many doctors are fairly private about treating Lyme (there is a long backstory to this, which centers around the high stakes, antagonistic disagreements about how to treat Lyme disease, e.g. see this article (http://www.lymeinfo.net/opmcissues.html) on some NY docs who have been brought before the medical board for treating lyme). The lyme-wars tag on my blog, and Pamela Weintraub’s book Cure Unknown are also excellent places to learn more about this.

    Anyway, lack of a public answer to these comments does not mean I am not responding to them.

  8. April 30, 2010 at 8:15 pm

    Hi,
    I’ve been wondering whether my son who has been diagnosed with POTS, NMH, and CFS has Lyme. We moved to Pittsburgh from the Boston area in 2002. Who would you recommend taking him to here to get this evaluated?

  9. Holly said,

    May 27, 2010 at 1:32 pm

    hi, i just found out that my aunt has Lyme Disease and I’m having a hard time finding a list of doctors or any doctor for that matter that treat the Lyme Disease they are telling her that she needs IV treatments and that in NC is illegal to treat Lyme Disease, so please help me with finding her a doctor or giving me some links as to where i can find help…Thank u-Holly

  10. jmankoff said,

    June 2, 2010 at 7:53 pm

    Happy to email you.

  11. Jason said,

    June 21, 2010 at 11:49 am

    Jason, My wife needs to find a Lyme doc in the pittsburgh PA area. Any help would be appreciated. Thanks

  12. Stacy said,

    July 5, 2010 at 7:34 am

    I was just recently diagnosed with Lyme and live in eastern Ohio. Could you possibly give me info. for a Lyme literate doctor in Western PA if there are none available here in Ohio?

  13. Sabrina said,

    July 12, 2010 at 9:23 pm

    I am pretty sure my 2 kids have lyme and possibly bartonella as well. I live in the DC area. Any luck finding lyme literate pediatricians close to my area? i”d love a private response if you have info for me. Thanks.

  14. Rosa said,

    November 25, 2010 at 7:28 am

    HI, I have a 4 yrar old son still battling lyme. Any referrals you have are greatly appreciateted.

  15. Adam said,

    November 26, 2010 at 5:20 pm

    Hello, I have a good friend who is in her early 20’s and has had Lyme for a couple years. She lives in Northwest Ohio. Can you send me any information you might have? Thank you so much!

  16. caroline said,

    December 19, 2010 at 1:25 pm

    I’ve been reading through your blog, and saw that you were seeing a lyme doc in Pittsburgh. Can I ask who you’re seeing? How you like them? Do they treat with IV?

    I’m not unhappy with my current doctor by any means, but it’s a 2.5 hour drive for me to get there. Thankfully it’s only once a month, but the trip is hard on me (and both times that I’ve been put on IV, I’ve had to make the trip up there to get the line placed). My doctor agreed to work with my local PCP on my treatment, but of course my PCP doesn’t think I have Lyme disease. He thinks I have fibromyalgia, despite the fact that I got better (for a whole year) after doing long-term antibiotic therapy.

    We actually live about an hour south of Pittsburgh, so any info you have on local resources would be really helpful to me.

  17. ksole said,

    December 29, 2010 at 3:10 pm

    I am having a hard time finding a LLMD to return my phone calls, I have a toddler son almost 3 and his natropath detected a spirochete doing a live blood draw (nutritional microscopy) she advised I seek the help of a pediatric LLMD. I have several names but I am getting passed into voicemail. Are you aware of a pediatric lyme doctor? I would appreciate any help, thank you !

  18. Jen Mankoff said,

    December 29, 2010 at 9:13 pm

    Will do my best to answer all of these requests by email. However, it is very hard to find pediatric Lyme doctors!

  19. ksole said,

    December 30, 2010 at 7:05 am

    Thank you !

  20. Abby said,

    January 4, 2011 at 5:04 pm

    After reading these responses, I realize how difficult it is to find a competent doctor to diagnose and treat Lyme disease. I am looking for a Lyme specialist either in New Jersey or New York for a young adult.
    Does anyone have any suggestions, as I am really desperate.

  21. Kathy said,

    January 15, 2011 at 8:56 pm

    I live in Buffalo, NY and will travel for a good pediatric LLMD. Help, I am having trouble finding anyone other than in CT three months from now. Please,please, Thanks.

  22. ksole said,

    January 16, 2011 at 9:53 am

    May I suggest that you contact ilads.org (press the contact us tab) and ask for a pediatric doctor that follows ILADS guidelines in your general area . They were able to send me an email of pediatric doctors that followed ilads and treated children, it was a matter of me then contacting the doctor to schedule an appointment.

  23. Patricia Prochnow said,

    April 4, 2011 at 11:58 pm

    granddaughter, ruthie resides in nj and was diagnosed with lymes and babesosis by a doctor in new haven, ct. i think his names was dr. charles jones? that has probably been 3-4 years ago and he has since retired as he was in his 80s. no luck finding anyone to take a serious look at my granddaughter, ruthie. she was put on a regime on antibiotics for about one year. seemed to help but when that ended she has seemingly been getting worse than before. my daughter is a great layperson researcher and has read medical books and anything she can find at the library about this disease. she simply cannot find a doctor who will treat a child with lymes and its coinfections….that is if the doctor will even recognize it is serious. i live in nebraska and cannot be there most of the time to observe. but now, ruthie, who has always been a quick student with straight a’s, cannot even figure out how to a simple paper. what can i do? what can they do? please guide us. thank you so very much.

  24. Patricia Prochnow said,

    April 4, 2011 at 11:59 pm

    i wrote about ruthie and forgot to ask you to notify me via email. thank you again, Jenn.

  25. ksole said,

    April 5, 2011 at 10:03 am

    Dr. Jones is in his 80s but still in practice ! I have spoken to several parents that have taken their children to him for help, however there is a waitlist. He has a website drjoneskids.com .My son is currently in his third month of treatment and is doing wonderfully and attending an ABA therapy. He tested positive for lyme and Bartonella on the Igenex test. I am told this is treatable but it will take several months or years.

  26. Jessica said,

    June 19, 2011 at 6:59 pm

    I live in Northeast Ohio and after a recent camping trip to PA I began experiencing all the tell tale symptoms of lyme disease. Sick for over two weeks now a family member began insisting that I get tested for the disease even though my doctor had dismissed my concerns. So now I am trying to find a LLMD in Ohio, PA, or NY in the hopes of getting treatment early and getting back to normal. I would greatly appreciate a referral. Thanks

  27. ksole said,

    June 20, 2011 at 11:13 am

    Jessica, I know of one with reasonable rates in mt kisko ny. My son’s therapist and natropath see this dr and he is a very gifted lyme specialist and is the former president of ilads. The website is http://www.lymeproject.com/practice/lyme_practice_society.html
    Last week my sister wokeup with a tick on her neck and I contacted my natropath to help my sister so she would not have to deal with lyme disease as I have been dealing with for my toddler son. She contacted her dr. to immediately start doxycyclene for 10 days and the natropath has her on colloidal, cats claw and spk (formerly spirochete).

  28. Rick G said,

    June 20, 2011 at 2:22 pm

    I took doxy for 10 days and got sick anyway. If faced with that again I would take a minimum of 30 days. Vets give 30 days Doxy to dogs when they get infected.

  29. Apryl S said,

    July 2, 2011 at 11:32 pm

    My 8 year old son was just diagnosed with Lyme after a month of symptoms. Dr. thought it was viral and would go away. Sent me to dermatoligist for red spot on his head. I insisted on blood test and Lyme was discovered. His symptoms are tiredness, achy, occasional low grade fever, huge lymp nodes on neck and head, loss of appitite, red spot on head but not “bullseye”, headache, tummy ache and generally “just not feeling well”. Pediatrican put him on 2 weeks of amoxicilian but after researching Lyme disease on the internet, I fear that is not long enough. She mentioned that she feels that 2 weeks is enough because we are catching it fairly early but I am scared and would rather be safe that sorry. Thoughts? Also, my son has been mildly confused lately. Not really bad, but enough that my family and I have noticed it. I realize now that this could be a symptom of the lyme disease. I live near State College, PA. I would really appreciate it if you could email me the contact information for some reliable Pediatric LLMD’s.

  30. ksole said,

    July 3, 2011 at 9:30 am

    Apryl, so sorry to hear about your son, I am on month 7 of my toddler son’s lyme treatment and we did not yet start directly treating his co-infection. We tested thru IGENEX and he has had lyme undiagnosed for over 1 year before treatment (I was being told he had PDD-NOS. I personally feel that lyme needs to be addressed in all stages so antibiotics need to be cycled-for example my son is on 3 different antibiotics- am and pm. I read the book The Lyme-Autism Connection: Unveiling the Shocking Link Between Lyme Disease and Childhood Developmental Disorders and the child was treated with a short course of antibiotics at a young age and and later reinfected with lyme and treated by a long course. I give my son clay baths and epsom salt bath to encourage detox and lymphatic drainage. I found cats claw and colloidal silver to be amazing naturals. Also remember when using antibiotics that probiotics should be used 2 hours before or after the dose and limit sugar since it feeds lyme. I found a reliable ILADS trained doctor at ilads.org, they will send you 3 names in the general area, ours is almost 4 hours away and I go bimonthly. I would definately find a knowledgeable lyme doctor and test for possible coinfections. Hope that helps you on the right path.

  31. bean said,

    July 17, 2011 at 8:10 am

    I’m beig treated by a doctor in California, but I live in Buffalo, NY. Its difficult and I feel like I need to see someone local that I can sit face to face with- please e-mail me- I would love to hear your thoughts about doctors as I am searching. I went undiagnosed for at least 4 years, been in treatment for 1 year and I keep hitting walls in my treatment…think I’m not on right path.

  32. Rich in western PA said,

    August 13, 2011 at 9:42 pm

    My naturopath has recommended that I find a Lyme-literate doctor in the Pittsburgh area. Could you make a recommendation ? Any information would be greatly appreciated.

  33. ksole said,

    August 14, 2011 at 8:12 am

    Lymenet.org “Seeking a Physician” Forum: You can get a custom referral to an LLMD from http://www.lymenet.org. When you reach the homepage, click on “Flash Discussion,” and then click on “Seeking a Doctor.” You will be asked to provide your city, state, and contact information, and a Lymenet.org forum member will contact you with a physician referral.

    Lyme Disease Association Doctor Referral Service: Visit http://www.lymediseaseassociation.org and click on “Doctor Referral.” You will be asked for your contact information and a doctor referral will be provided.

    International Lyme and Associated Diseases Society (ILADS). Contacting ILADS is also a method for getting a physician referral. Use their website: http://www.ilads.org or call them at 301-263-1080. ILADS is the “gatekeeper” for most Lyme-literate physicians in the USA.

  34. Tom Crusa said,

    August 15, 2011 at 12:14 am

    I am sure glad I dropped in here. I have been looking for something. My story is long and spans 20 plus years so I won’t even try. I would like to find a doctor in Pittsburgh if at all possible. Any information would be greatly appreciated. Almost everyone does not understand the fatigue associated with this but its debilitating to say the least.

  35. kathy said,

    August 15, 2011 at 7:48 am

    hi, I am also looking for a Dr. in Pittsburgh.
    Thanks,
    Kathy

  36. jmankoff said,

    August 18, 2011 at 12:55 am

    Thanks for posting a great summary of ways to find doctors. I would add to that — joining the mailing list for your state (there’s a yahoo group for each state, such as PennsylvaniaLyme@yahoogroups.com) is a useful source of advice and doctor information.

  37. kelly1965 said,

    September 11, 2011 at 9:08 am

    thanks for this blog, it has really been helpful. I am desperately looking for an LLMD in the Pittsburg area too, i am very ill and hoping i’d be able to maybe do IV’s in the future if orals failed. Could you pls e-mail me some info? Only how does one e-mail?? Greatly appreciated. I’m too sick to join boards or groups, and I saw this blog. Thanks so much.

  38. Debby said,

    October 1, 2011 at 11:02 pm

    Finding this blog has been comforting. My son, 7, was diagnosed with lyme in June. He is back on antibiotics for a second time, b/c it did not seem like he was back to normal. Our pediatricians seem willing to work with us, but I am beginning to think that finding a lyme doctor would be beneficial, at least to get a second opinion of how treatment has gone so far. Apryl in State College or anyone else, have you found any pediatric lyme doctors within a days drive away. We are not far from State College.

  39. LB said,

    October 2, 2011 at 1:13 pm

    Like many others who have posted, I am also looking for a doctor in the Pittsburgh area who treats diagnoses and treats chronic lyme disease. My niece (in Rochester) recently was diagnosed, after living with a diagnosis of fibromyalgia for almost 2 years. I have also had some inexplicable symptoms, but negative ELISA testing. . .

  40. Apryl Sparr said,

    October 2, 2011 at 8:58 pm

    Debby, I am sorry to hear about your son. I never found anyone in our area. I searched and searched and couldn’t find anyone willing to see him. There was a dr. in State College that wasn’t a specialist but had experience with lyme patients and came highly recommended. However, would not see my son because he is a child. He only had experience with adult lyme cases and suggested that we search for a pediatric lyme specialist. I found a specialist near Philly but she had a 10 month waiting list!! As a last resort I could give you her number but you probably need something quicker. For my son, fortunately, after convencing his ped. to extend his antibiotic treatment to 30 days, his symptoms have seem to be gone. He seems to be back to his normal self. And thanks to wonderful sites like this one (and a few others) I am now a bit more knowledgable, and am equipted to watch his symptoms like a hawk!

  41. Apryl Sparr said,

    October 2, 2011 at 9:08 pm

    Like I mentioned in the post above, my son seems to be doing better but I still worry “Is it gone?” My son’s ped. said that retesting would not be helpful because he will have a postive lyme test for years to come rather bacteria is present or not. However, my aunt tested positive for lyme about the same type as my son did and her dr. keeps testing her after treatments. When she test postive, he puts her back on antibiotics. He has repeated this 3 times even though she “feels fine”. Does anyone have any knowledge on rather retesting like this protocol and benefical?

  42. Tina said,

    October 9, 2011 at 10:44 pm

    Hi!! I stumbled upon your site because I am looking for a Lyme Literate Doctor for my husband who has been finally diagnosed after years of suffering with this disease. However, we have yet to receive treatment!!! I live in northeast Ohio…can you PLEASE direct me? We are getting a bit desperate as the symptoms are getting worse very rapidly. Thank you sooo much!!

  43. jmankoff said,

    October 12, 2011 at 7:28 am

    Unfortunately, I haven’t seen definite evidence that there’s any test that can accurately track whether you are “cured” or not. Thank goodness 30 days was enough for your son’s symptoms to subside!

  44. jessica said,

    November 2, 2011 at 3:08 pm

    my sister is in the pittsburgh, PA area and is in need of a LLMD. I have done research for her but have come up empty handed. She is suffering so bad any help finding a llmd would be greatful.

  45. Steve said,

    November 3, 2011 at 1:15 pm

    Hi, I’m in NYC and in need of a LLMD as my Infectious Diseases specialist doctor refuses to treat me with more antibiotics even though I am still having symptoms. He misdiagnosed me and delayed treating me with doxy until I finally tested positive on the 3rd test and now I’m very desperate to find treatment. Can you email me anyone in NYC that accepts insurance and is willing to treat with IV antibiotics if it becomes necessary?

  46. Romina said,

    December 20, 2011 at 2:11 pm

    Hi, thanks for your blog. I am trying to find a lyme specialist in NY/ or NJ area. Can you please email me some, and also some who do accept insurance. I believe there are alot of doctors who are lyme specialist, who accept insurance and who treat chronic lyme. Please let me know asap. Thank you.

  47. Pamela said,

    January 11, 2012 at 1:00 am

    Hello I am in desperate need of finding a LLMD. I live in Etters PA. I’m half way between York and Harrisburg. I have had Lyme disease since 2007 and I have been to several different doctors and they tell me I have depression and the depression makes me believe that there is something else wrong with me. I am one of the happiest people around except when dealing with doctors.

  48. Amy said,

    January 25, 2012 at 10:43 am

    I am looking for a LLMD for my 10 year old son. I live in Michigan but will travel anywhere.

    amandacarr@comcast.net

  49. Dawn said,

    February 1, 2012 at 10:11 pm

    Hi I’m looking for a LLMD in the phila or NJ area… Pleas email if you know of any ..mdzone@comcast.net

  50. Kate said,

    February 29, 2012 at 10:36 pm

    Hello
    I think my 11 year old in dc still has Lyme. Do you know of a good doctor here who treats kids?
    Thanks
    Kate

  51. kim said,

    March 1, 2012 at 7:12 am

    leave your email address and I will send you one .

  52. Diana B said,

    March 15, 2012 at 10:07 pm

    Hello, my husband and I are a young couple looking for a lyme disease specialist. We recently moved to Ohio and we need to find someone who can really help. It really breaks my heart to see how the illness has affected him. It has broken his mind and spirit and it is scary because he has had suicidal thoughts. It has been 4 years of seing doctors, no one can diagnose lyme for him…Please help us find someone. Thank you.

  53. Diana B said,

    March 15, 2012 at 10:19 pm

    Do I post my email here? I thought I did when I filled the blanks below along with my name

  54. Dayna said,

    March 20, 2012 at 10:19 am

    Apryl would you please give me the name of the doctor you mentioned in State College that wasn’t a specialist but had experience with adult lyme patients and came highly recommended. Thanks.

    daynakann@gmail.com

  55. caroline eng said,

    March 25, 2012 at 7:10 am

    Please i am begging you to email me tommorrow my husband trusts anyone with a white coat and a label. i believe in colloidal silver i have been giving it to my 12 year old for 3 wks now and he no longer feels like throwing up at bed time and he experienced herx itching the silver is doing good work but i DESPERATELY NEED A DOC spouse does no reading and trusts any guy with a white coat I am not kidding I am in mothering hell with a husband devil I am fightighting the good fight please help I need a LLD doctor to side and instruct and monitor him. He had lyme symptoms of headache fever chest pains back pains and wanting to throw up at night all the time its been 3 weeks. the silver is helping i am confident he can be cured without the EVIL DOXY DRUG people out there are taking this drug and it is a beast creating anxiety panic dression and the list goes on please tell me where a lld in ny is .
    hear is a website that also explains a doc saying it can make the disease worse besides the anxiety depression suidical thoughts. the med supplier of this doxy does no warning of anxiety depression suicidal thoughts etc and it is really toxic. silver is not. I am presently using sovereign hydrosol colloidal just need a doc to monitor his liver and whatever else he should do for my sons wellness PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    DESPERATE HEART RAVAGED MOM!!!!!!!!!!!!!!!!!!!!!!!!!!!
    I beg you please email me. blessings i am gratful

  56. D thompson said,

    March 25, 2012 at 10:21 am

    I would also like you to email me with any doc that can help my daughter. she was diagnosed with late stage Lyme disease and treated but still has an arthritic knee. How do you know if the antibiotics worked??? I live 2 hours north of Pitt. Thank you. D

  57. JMD said,

    May 13, 2012 at 9:01 am

    I haven’t carefully read all of the blogs or this webpage in any detail, but I am one of the lucky ones who was cured of Lyme after a year and a half on four antibiotics. I have no more joint pain of any kind. There is hope for all of you. You must find the right LLMD. Heavy, long-term oral antibiotics worked for me.

  58. caroline said,

    May 13, 2012 at 2:04 pm

    research teasel root extract to pull out disease imbedded and kill in blood stream with allicin garlic by peter josling english scientist. there is a good healthy cure out there you will find what you are looking for if you just believe calmly it will come your way peace.

  59. jmankoff said,

    May 13, 2012 at 2:30 pm

    Thanks to both of you for your helpful messages.

  60. Michelle said,

    June 2, 2012 at 8:16 am

    What are the name of the tests that came back negative & what test was finally used to detect lyme disease?

  61. jmankoffJen said,

    June 11, 2012 at 4:29 pm

    The test was a Western Blot, and it was done by a standard lab (Labcorp I think). A western blot has multiple “bands” and it was the bands that made the difference in my read of the diagnosis. Here is more info on the Western blot (from my side of the Lyme wars): http://www.anapsid.org/lyme/wb.html

  62. Kevin Weissenstein said,

    July 8, 2012 at 12:34 pm

    Lyme sufferer since 1991. Major symptoms returning currently. Looking for a few choices other than Joseph in Hermitage. Any help would be greatly appreciated.

  63. Kevin Weissenstein said,

    July 8, 2012 at 12:36 pm

    I am in Pittsburgh area. Sorry

  64. kim said,

    July 8, 2012 at 7:32 pm

    Childeren’s Lyme Disease network has a new site and helps find doctors and offers information. I have my children listed on the site and the address is http://www.childrenslymenetwork.org/resources/physician-referrals/

  65. Karl said,

    July 16, 2012 at 6:20 pm

    For people in Pittsburgh, check out Dr. [please email me or write a comment if you want the details]. I am in Syracuse, NY and travel to see him, as does my mother and daughter who are also infected with Lyme.

    — note: this comment was edited to remove the Dr.’s name as this blog subscribes to the Lyme Community’s common decision to keep doctors’ names private due to the controversy surrounding their approach to treatment. Sorry! —

  66. Marcy said,

    July 21, 2012 at 6:45 pm

    My 6 year old was just diagnosed with Lyme disease. I would love the name/number of the Pittsburgh doctor you found.

  67. Cathy R said,

    July 26, 2012 at 12:00 pm

    I am looking for a great doc in Pittsburgh (near Pitt would be best) for my adult son with Lyme. My email is hapkmpr@gmail.com. I am not sure how to get in touch with Karl (above) but would love the information. Thanks!

  68. Colleen said,

    August 7, 2012 at 5:52 pm

    JMD- My daughter was just diagnosed with Lyme’s, can you tell me what the name of the antibiotics were. She’s seeing a specialist tomorrow and will be traveling 1hr and 1/2 to see him. Thanks for posting

  69. jmankoff said,

    August 8, 2012 at 8:55 pm

    I would recommend the ILADS treatment guidelines as a starting place: http://www.ilads.org/lyme_disease/treatment_guidelines.html

  70. Lacey said,

    August 28, 2012 at 8:54 pm

    Hello. My son was just diagnosed with Lyme. He is five. I suspect he has had this awhile. An ENT at Children’s in Pittsburgh diagnosed him. However, we live about two hours north of Pittsburgh. He sees his regular ped for a follow up in two days and the ENT in a month. I want to make sure this is handled as best as possible. Could you email me about doctors for children? I am willing to travel. Thank you.

  71. kim said,

    August 29, 2012 at 7:19 am

    My children are part of the childrens lyme disease network, my son’s photo is on the home page, he is now 4 and has been successfully treated for lyme induced autism. There is a link to a physician referral search for children : If you are in need of a physician who treats children and adolescents and is trained specifically in diagnosing and treating tick-borne diseases, including Lyme Disease, please email: info@childrenslymenetwork.org or fill out the contact form here. Please be sure to let us know which State and region you reside in and the age of your child.

    Physicians who are trained in treating tick-borne diseases are referred to as Lyme-literate medical doctors or LLMDs.

    LLMDs follow the diagnostic and treatment guidelines set by the International Lyme and Associated Diseases Society (ILADS). This group of medical professionals specializes in tick-borne diseases.

    the site is http://www.childrenslymenetwork.org/resources/physician-referrals/

  72. Seth said,

    September 10, 2012 at 3:43 pm

    I am in search of any Lyme specialists in the Pittsburgh area. I have been diagnosed with tertiary Lyme disease. Currently I have a PICC line in and having daily doses of rocephin. I am having neurologic problems as well as problems with my sight. Any suggestions would be much appreciated. Violinman1970@aol.com

  73. susan said,

    September 13, 2012 at 6:16 pm

    Can I ask who the doctor was that you found for your son in 2010? I live in the Southern Tier of New York, was just diagnosed, and need to find a good Lyme specialist.

  74. Greg said,

    September 24, 2012 at 11:27 am

    For people in Pittsburgh, check out Dr. [please email me or write a comment if you want the details].
    Could I get this info Please? Any other lyme specialists reccommended would be great.

  75. Anne said,

    September 24, 2012 at 8:12 pm

    Hi. I too live in Pittsburgh, am a young mother of three children under three, and recently had the ELISA test done which came up positive for Lyme, but had negative results on the Western Blot. I am desperate to find a doctor to help determine whether or not I have Lyme so I know if I and/or my children need to be treated- I’ve had bizarre health issues for two years now and worry that I may in fact have it. Please pm me any info you can share. Many thanks!!

  76. Kelly said,

    October 11, 2012 at 9:39 am

    Hi, also in Pittsburgh and need local doctors. Any information would be appreaciated for me or my children. Even if its a Pediatrician, Pcp, Infectious Disease anything.
    Is there a support groups in Pittsburgh?
    Thanks!

  77. jmankoff said,

    October 12, 2012 at 8:23 pm

    There is a support group, which is probably a good place to start asking for doctor info. Details here: http://gotlyme.wordpress.com/2008/10/14/finding-support/
    Also, we now have a mailing list: http://health.groups.yahoo.com/group/PittsburghLyme/

  78. Donna said,

    October 19, 2012 at 11:15 am

    Hello I hope you are still scanning this blog—it looks like you are though Live near Philly and Pittsburg would really appreciate any ILAD-trained doctors names for the area—-Thanks ahead of time

  79. Donna said,

    October 19, 2012 at 11:16 am

    Also the NY doctors too????
    Thanks

  80. Charlotte Siegfried said,

    November 16, 2012 at 4:50 pm

    Really really need a name for llmd in Pgh area vicinity. This is for an adult case however, not pediatric. I would appreciate any help at all. THANK YOU

  81. Angela said,

    November 20, 2012 at 8:34 am

    I have a friend who has a 12 year old with Lyme. This child is is so much pain and has been bed bound for months now. She is now having seizures and her family is at the end of their rope. Any help would be a true blessing. God bless and thank you in advance.

  82. Heidi said,

    November 21, 2012 at 7:34 pm

    We live over 2 hours north of PIttsburgh. We need a ped. lymes specialist. Any help you can give would be wonderful. Thanks!

  83. Sandy said,

    December 10, 2012 at 5:48 pm

    Could you email me the name of the LLMD in Pittsburgh and/or any other LLMDs that you know of that are closer to York PA? Thank you…

  84. marybeth said,

    January 13, 2013 at 12:57 pm

    I am in desprate need of a Lyme doctor. I live in western pa and have seen ainfectious disease doctor, but she hasnt even started any kind of treatment and dismisses some of my symptoms as not being lyme. I am 30 min outside of pgh. If you could help me I would greatly appreciate it.

  85. February 20, 2013 at 5:48 am

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  86. Jane Williams said,

    February 28, 2013 at 4:28 pm

    I am a 52 year old female.I have been sick for probably close to 10 years. I was dagnosed 3 years ago with lyme . I live in western PA. I have doctored with 2 different lyme specialist doctors in my area. I have been on probably 15 different antibiotics. I have found that none of them have ever made a diffefence in how I feel. Can you reccomend a different lyme specialist in the Pittsburgh area? I am desperate. Thank you.

  87. Doctorsearch said,

    March 13, 2013 at 7:02 am

    Thank you for sharing this information. The information was very helpful and saved a lot of my time.

  88. jmankoff said,

    March 13, 2013 at 7:53 am

    You’re welcome!

  89. May 1, 2013 at 8:47 pm

    My daughter has been misdiagnosed for 10 years.Thank God for the ILADS site & the symptom list. I didn’t know anything about co infections.Turns out she not only has Lyme (western blot confirmed) but @ least 3 co infections. We got every diagnosis from autoimmune to “she’s doing it to herself” Travesty is an understatement. My husband knows a few vets, & they had asked,”has she been tested for Lyme?” We asked and asked; were dismissed by the human doctors always with derision and sometimes even a snicker. Really..She has been put through so much with all the testing and suspicions. Only in the medical establishment are devoted parents viewed as a liability. Found a good doctor, I hope. We haven’t started treatment yet. But she has been allowed to become so sick, while complacent medical “help” stood by, watched it happen, and judged.

  90. Tanya said,

    June 2, 2013 at 8:50 am

    Hi. My friend’s 12 year old son has Lyme. She is trying to find a Lyme doctor that specializes in kids. She lives in a suburb of Philadelphia. Any info on doctors in this area would be greatly appreciated. Thanks.

  91. Shelee Saal said,

    July 9, 2013 at 11:56 am

    I know a 1.5 year old child (girl) and my chlld (9.5 year old boy) who have Lyme. I believe the child lives in NY. Do you know of a Lyme specialist who will work with such a young child? [This is a relative of my friend.]

    My son is on a course of Amoxicillin (500mg/ 3x day) for 14 days. His pediatrician is the only physician involved at this point. I’d like to work with at least one more doctor who specializes in Lyme before the end of his course of antibiotics.

    I contacted Tick-Borne Disease Alliance (TBDA), but they haven’t answered my emails. They were recommended for referrals by a Master Gardener through Rutgers Cooperative in order to find a doctor for children who specialize in Lyme.

    Thanks.

  92. Jeff said,

    July 18, 2013 at 8:42 am

    I live in Northeast PA (Williamsport) looking for LLMD. very hard to find. If anyone knows of any please e-mail me at jcornell.cornellbros@yahoo.com

  93. Carmela said,

    August 7, 2013 at 12:01 pm

    I have lyme disease and left my dr. of 5 years because he said I didnt have lyme even after my blood test came back positive but the LP a was negitive so they said I dont have lyme even tho I have all the syptoms but I do and my new dr. gave me 21 days of antibiotics and I’m still suffering and need more but thats all I can have so now I need to see a LLMD its been 3 months to date and I need to be treated and I havent worked in 3 months so I have nothing… can someone help me please I live in NY and was bitten may 7th this year : (
    I have to go for a sonagram for my gall bladder because things are bad inside me. please help me thank you

  94. Melissa said,

    October 1, 2013 at 2:56 pm

    My aunt was just diagnosed with lyme disease and I need suggestions on finding a LLMD/specialist in the PA region.

  95. Greg said,

    November 17, 2013 at 11:24 am

    Like so many others, I am searching for a lyme specialist it Pittsburgh, PA — any help would be appreciated. Thanks!

  96. Julia Brink said,

    December 4, 2013 at 10:23 am

    I have chronic lyme and have been treating for a while and my doctor doesn’t seem to be able to help me anymore. He also doesn’t treat children.

    My son was bitten by a tick and treated for a short period of time. He now seems to be having issues again (think it may be bartonella?) and I’m having a hard time finding him help.

    Could you please send me a list of LLMDs for PA or another close by state, especially any that accept insurance. I did call a LLMD that I was able to find in PA and she’s booking a year ahead.
    Thanks so much for any help you could offer.

  97. Shari said,

    January 19, 2014 at 9:07 pm

    Hi please help I live in buffalo, ny area and need to find a Lyme Dr for me. I also have a five year old son I am wondering about too. Dr I have talked to are no help !!! Thank you

  98. April Lydon said,

    March 14, 2014 at 8:58 am

    Hi, my 2 year old son was treated for lyme’s disease and developed a vocal tic. He saw a Neurologist who said the tic was not related and is probably behavioral. It is a year later and he still has the vocal tic. I wanted to take him to someone who specializes in Lyme’s. We live in PA. Any recommendation would be appreciated. Thanks

  99. Bill Lamb said,

    April 28, 2014 at 3:39 pm

    I’m glad that I found this posting in order to realize the troubles others have in trying to just get someone to speak with them about Lyme. I have spoken with my PCP about what I experience. He shrugs and tells me not to concern myself. I requested in writing that I want to speak with him about Lyme. He won’t contact me. But today I got a voice message from a woman calling from a restricted number identifying herself as a doctor. She mumbled that she knew I was inquiring about Lyme Disease and based on what she read, I didn’t have it . She hung up. No name, No contact number. Just a call to let me know I don’t have Lyme based on an assessment of WHAT? Something is odd.

    It would be great to speak with someone in the Pittsburgh area about my symptoms that are going into the third year. Any help is greatly appreciated.

  100. Nika said,

    April 29, 2014 at 3:06 pm

    I don’t know if you are even still checking these, but I am being treated (after two decades!) for Lyme and I know one (if not both) of my daughters (and probably my son, too) has it. I had it while I was pregnant and she has since had ticks in her three separate times, and at least one of the times, the head got stuck under her skin. She exhibits so many of the same symptoms that I have had (migraines, dizziness, confusion, overwhelmed easily, lethargic, achy joints and muscles, random rashes in different places on her body, scratchy throat, so many more!) and it seems to be getting worse. About a year ago our regular pediatrician gave her the Western Blot test(because I insisted) and it came back negative, but so did mine and I KNOW I have Lyme! I’ve called the few doctors I can find for her and they are either not taking new patients or not taking patients under the age of ten. We are near Harrisburg in PA and would be willing to travel if necessary. Any help you can give is welcomed!

  101. Jodi said,

    July 11, 2014 at 3:11 pm

    Hi all – I’ve got late Lyme and saw a LLMD in NYC on and off for the past 3 years. Now his office is impossible to get through to, and I can’t afford an LLMD anymore anyway. I know all will say that you need to go to an LLMD, but I am dead broke from this disease. Does anyone know of a doctor in the NYC area that takes insurance?? I’m desperate – having a relapse and I’m worried I’ll get neuro again. Please contact me directly if you know someone who is knowledgeable, takes insurance, and is in the NYC area. Thanks!

  102. Diana Thompson (DeeDee) said,

    July 14, 2014 at 12:36 pm

    My 17 year old daughter was diagnosed after 7 months of infection, and finally treated after arthritis became apparent. She is still having issues with fatigue and arthritis. I am close to Pittsburgh, Buffalo or Cleveland. Any help with finding a doctor would be appreciated. Thank you!!

  103. jmankoff said,

    July 19, 2014 at 8:37 pm

    Hi Diana,

    I’m sorry to hear about your daughter.

    One way to find a doctor is to go to http://www.lymediseaseassociation.org and click on the doctor finder on top. The other is to go to http://www.lymenet.org, click on flash discussions, then click on find a doctor. On Lymenet there is also a support group option where you could find an in-person group in your area. Finally, there is a mailing list where you can get better info: [YourState]Lyme@yahoogroups.com (e.g. for PA: PennsylvanieLyme@yahoogroups.com)

    In terms of local docs in Pittsburgh, I would suggest starting with Dr. Joseph (in Hermitage, PA) and also considering Dr. Berez (in squirrel hill). Dr. Joseph has a much longer history treating lyme but Dr. Berez is local, learning, and if you’re into that a skilled homeopath/naturopath. There’s also a new doctor south of Pittsburgh:

    His name is: Nori Onishi, D.O., Board Certified Family Practice,

    *Blackwater Osteopathic Clinic, LLC* 186 Locust Ave. Mt. Morris, PA 15349 Phone: 888.262.0021

    You may also want to think about joining PittsburghLyme ( http://health.groups.yahoo.com/group/PittsburghLyme/*)* and/or PennslyvaniaLyme to get input on doctors (see below for more).

    Hope this helps,

    jen

    On Monday, July 14, 2014, A Lyme Disease Journal wrote:

    > Diana Thompson (DeeDee) commented: “My 17 year old daughter was > diagnosed after 7 months of infection, and finally treated after arthritis > became apparent. She is still having issues with fatigue and arthritis. I > am close to Pittsburgh, Buffalo or Cleveland. Any help with finding a > doctor w”

  104. Garry Stephanson said,

    July 20, 2014 at 4:42 pm

    Like many others I am searching for the Lyme disease specialist in the northern New York State area, Rochester Syracuse. There seems to be a lot of information in the field but nothing very specific, as to Doctors specializing in this field. Any information would be greatly appreciated

  105. Dan said,

    July 29, 2014 at 10:33 pm

    Looking for Lyme Doctor in Philadelphia. I am now convinced my 8 yo son has Lyme. We are in a western suburb of Philadelphia. Do you have a referral for us? HOPE SO!


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