Sign in to follow this  
Followers 0
evergreen

can anyone recommend dr?

16 posts in this topic

can anyone recommend a good holistic Lyme specialist in the south jersey/phila area? We are not new to Lyme but ds is aging out of Dr. J's care and would like to stay closer to home. He needs work on yeast issue. He has been sick for 7 years and also has PANDAS and immune deficiency. We are also looking for a new PANDAS dr. My head is spinning but need to make changes in his care (and mine) as I have also been sick many years. Not happy with my LLMD.

Thanks in advance

Share this post


Link to post
Share on other sites

Sorry I can't help with the Doctor issue but I wanted to welcome you. My dd also has lyme & co; Pandas, CVID and some other health issues. So I understand what you are going through.

Share this post


Link to post
Share on other sites

can anyone recommend a good holistic Lyme specialist in the south jersey/phila area? We are not new to Lyme but ds is aging out of Dr. J's care and would like to stay closer to home. He needs work on yeast issue. He has been sick for 7 years and also has PANDAS and immune deficiency. We are also looking for a new PANDAS dr. My head is spinning but need to make changes in his care (and mine) as I have also been sick many years. Not happy with my LLMD.

Thanks in advance

 

Very interesting alternative medicine practice in northern MD http://www.twofrogscenter.com/index.html

Greg Lee would be the guy to see. He contributes a lot to this good news letter http://goodbyelyme.com/

Lots to learn on both websites.

An excellent LLMD and PANDAS doc in Conn. He treats PANDAS, Lyme etc. and immune deficiency. Denis A. Bouboulis, M.D

http://www.advanced-allergy.com/

Share this post


Link to post
Share on other sites

thank you red,

I will check it out, the newsletter looks interesting. We currently see Dr. B, but are looking to treat closer to home. It becomes harder as my boys are now adults in their 20's with commitments. Dr. B. has helped them though.

Share this post


Link to post
Share on other sites

Thanks for the welcome. It is high time I started talking about all of this after all these years. Friends and family don't understand any of it and it becomes isolating. The combination of lyme, pandas and cvid is more common than most realize. I have come to believe that most people with longtime lyme which has been treated but not cured, have immune deficiency.

all the best to you,

sue

Share this post


Link to post
Share on other sites

We are dealing with PANDAS, Lyme and CVID too. Can you all just come over for coffee one day? :P :P

 

Sometimes I feel like I'm the only one in the world dealing with this stuff.

Share this post


Link to post
Share on other sites

can anyone recommend a good holistic Lyme specialist in the south jersey/phila area? We are not new to Lyme but ds is aging out of Dr. J's care and would like to stay closer to home. He needs work on yeast issue. He has been sick for 7 years and also has PANDAS and immune deficiency. We are also looking for a new PANDAS dr. My head is spinning but need to make changes in his care (and mine) as I have also been sick many years. Not happy with my LLMD.

Thanks in advance

 

Very interesting alternative medicine practice in northern MD http://www.twofrogscenter.com/index.html

Greg Lee would be the guy to see. He contributes a lot to this good news letter http://goodbyelyme.com/

Lots to learn on both websites.

An excellent LLMD and PANDAS doc in Conn. He treats PANDAS, Lyme etc. and immune deficiency. Denis A. Bouboulis, M.D

 

Dr. B. is not an LLMD (he is a PANDAS doc, though). He refers to Dr. J, and they collaborate together.

http://www.advanced-allergy.com/

Share this post


Link to post
Share on other sites

can anyone recommend a good holistic Lyme specialist in the south jersey/phila area? We are not new to Lyme but ds is aging out of Dr. J's care and would like to stay closer to home. He needs work on yeast issue. He has been sick for 7 years and also has PANDAS and immune deficiency. We are also looking for a new PANDAS dr. My head is spinning but need to make changes in his care (and mine) as I have also been sick many years. Not happy with my LLMD.

Thanks in advance

 

Very interesting alternative medicine practice in northern MD http://www.twofrogscenter.com/index.html

Greg Lee would be the guy to see. He contributes a lot to this good news letter http://goodbyelyme.com/

Lots to learn on both websites.

An excellent LLMD and PANDAS doc in Conn. He treats PANDAS, Lyme etc. and immune deficiency. Denis A. Bouboulis, M.D

 

Dr. B. is not an LLMD (he is a PANDAS doc, though). He refers to Dr. J, and they collaborate together.

http://www.advanced-allergy.com/

Any doctor who knows enough to get the right tests for Lyme, in this case Dr. Bouboulis sends his Lyme tests to Stony Brook and then knows enough to collaborate with the treating MD is in my book Lyme Literate. I assume the Dr. J you are talking about is Dr. Jones and not Dr. Jemsek. It is rather hard for me to understand what doctors everybody is talking about when all that is used is the first letter of the last name. My story is quick and dirty. In 2004 I was misdiagnosed with Lyme and babesia by a LLMD, Dr. J. Now I say that makes him Lyme illiterate because he misdiagnosed me. He treated me for a while and I then consulted with a Dr. C who said is was possible I had Lyme. I then went to a very well known LLMD Dr. L who also misdiagnosed and inappropriately mistreated me with antibiotics. Then in late 2006 I saw a LLMD, Dr. S who was also mold literate who did a much more detailed work up than the previous LLMDs and found it was mold. I cleaned my house and body and recovered. Then I got sick during my 18 month treatment for prostate cancer and never recovered my energy and had continuous bouts with muscle pain and fatigue well after I recovered from said prostate treatment. Last year I saw a LLMD Dr. F who diagnosed me with Lyme based solely on a 41K+. Wrong but he did steer me in the direction of bartonella based on a Fry Lab smear. Now Fry is a questionable lab to me so onward. I was not about to be treated again for Lyme that I did not have. So I then went to see a giant money sucking machine Dr. M who did the Galaxy Diagnostic PCR/DNA profile that proved I really had bart. But I was also broke from Dr. M. So luckily I found a different Dr. F locally who is LLMD and am now in antibiotic treatment for this very dreaded disease. I must say the herxing can really hit the upper end of the Richter Scale. Phew. (I should add that I saw a Dr. H at a very prestigious Medical School who outright rejected the Galaxy test as a lab error. He gave me the usual and customary bart test for only 2 variants while there are 26. He also said I did not have bart and he never in his career saw a "chronic bart" case. "They are always self limiting". WOW

Red

Edited by red

Share this post


Link to post
Share on other sites

evergreen- I can pm you some names in North Jersey. They treat both traditional/alternative.

 

Red- I am sorry for everything you've been thru - that's a lot of doctors.

Edited by philamom

Share this post


Link to post
Share on other sites

Any doctor who knows enough to get the right tests for Lyme, ... and then knows enough to collaborate with the treating MD is in my book Lyme Literate.

I too am sorry you've been thru so much with so many doctors. But I have to respectfully disagree with this definition of what makes someone an LLMD. It's not just testing, it's also understanding the very complex and very individual needs that come up during treatment. This, in my book, includes a wide variety of abx, detox, considering yeast and metals and biofilms and cyst busting and nutrition and toxins and virals, etc. I give Dr B credit for testing, which is more than many doctors are willing to do. But his experience in treating lyme is not that vast and his focus is on Pandas. He certainly doesn't advise patients on or test for any of these other aspects and sometimes these are equally or more important in recovery. I respect him for getting some patients started on treatment while they wait to get in with an LLMD but based only on my own experience, I would not suggest someone with possible lyme or co-infections see Dr B. for long term treatment. Use him for his specialty. He himself will tell you that that specialty is not lyme. Not trying to bash him in any way. But didn't want this thread being stumbled upon years from now and not having a differing opinion out there for someone who's searching for options. We may have to agree to disagree on this one.

Share this post


Link to post
Share on other sites

Any doctor who knows enough to get the right tests for Lyme, ... and then knows enough to collaborate with the treating MD is in my book Lyme Literate.

I too am sorry you've been thru so much with so many doctors. But I have to respectfully disagree with this definition of what makes someone an LLMD. It's not just testing, it's also understanding the very complex and very individual needs that come up during treatment. This, in my book, includes a wide variety of abx, detox, considering yeast and metals and biofilms and cyst busting and nutrition and toxins and virals, etc. I give Dr B credit for testing, which is more than many doctors are willing to do. But his experience in treating lyme is not that vast and his focus is on Pandas. He certainly doesn't advise patients on or test for any of these other aspects and sometimes these are equally or more important in recovery. I respect him for getting some patients started on treatment while they wait to get in with an LLMD but based only on my own experience, I would not suggest someone with possible lyme or co-infections see Dr B. for long term treatment. Use him for his specialty. He himself will tell you that that specialty is not lyme. Not trying to bash him in any way. But didn't want this thread being stumbled upon years from now and not having a differing opinion out there for someone who's searching for options. We may have to agree to disagree on this one.

I appreciate the thought about being through so many docs. I do not think that is a big deal but it is a big pain. I have been in medicine 37 years and know when to quit and move on. I think only 10% of western medicine is any good. Most western docs practice in a box and this includes some so called LLMDs. If Dr. B is collaborating with another doctor on his PANDAS + Lyme patients then that makes for very good medicine. And it also makes Dr. B literate in the literal sense. A LLMD does not have to be the treating doctor. They can just be the diagnosing doctor and the refer to someone with the expertise. This is really how medicine is supposed to work. The problem comes when a person sees a doc and the doc does not see the person/symptoms/disease. THink of how many people go through this with Lyme/Bart etc./PANDAS and or mold. I sure went through it with mold. I was treated mostly on symptoms by LLMDs. And the symptoms of Lyme are very similar to mold. So LLMDs need to become mold literate. As for bart, these symptoms are in a whole other universe (thank goodness for the DNA test). I think misdiagnosis is by far a much greater problem than your concern that someone will stumble on this thread years from now and come away getting the wrong idea. In fact it is with information from a thread like this that people get informed. I have seen way to much bad medicine in my professional life and I have experienced it as a health care consumer. Your book may indeed provide some good information to the public but for those seeking information the first place they go is forums like this. To argue a point, if a person with possible Lyme called Dr. B's office and it was not about PANDAS or allergies his office would most likely just refer them on to a LLMD/treating MD like Dr. Jones. I consider that good medicine. For the vast majority of tick/Lyme etc./PANDAS or mold people the first person they see is their primary care doc. And from there it is an up hill battle.

Red.

Share this post


Link to post
Share on other sites

Thank you for all the advice. I enjoy hearing from people who have had as much experience with these difficult diseases as I have. It is much food for thought. Now I have to try and clear my Lyme brain fog enough to make some decisions. Not only for my sons but myself!

Red, I have long suspected mold involvement with all of us. I would love for you to pm me some of the names of these docs you are referring to. "dr. Jones" has been my ds20's treating doc for 6 years and has done a darn fine job. He has gone from completely non functional ( I was afraid I would lose him) to now in college living in a dorm.

Phila mom, I would also like to hear the ones you recommend.

 

For the record my son showed continued Igm for many Lyme bands which slowly decreased over time until it mostly converted to Igg. Then after a year away at college with exposure to mold in the shower and toxins in the room(air fresheners and others) he felt worse, lost weight and now shows Igm bands again. He also herxed when given new antibiotic. So we know he continues to struggle with Lyme. He also has immune deficiency.

Thanks again for all advice!

Share this post


Link to post
Share on other sites

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 account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0



  • Announcements

    • Administrator



      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator



      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010
  • Help us learn if blood type has a correlation with PANDAS/PANS   33 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic