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New eBook: Your Child Has Changed; Should You Consider PANDAS?


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15 replies to this topic

#1 evergreen

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Posted 14 August 2012 - 06:22 AM

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


#2 ShaesMom

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Posted 14 August 2012 - 09:55 AM

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.

#3 ShaesMom

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Posted 14 August 2012 - 09:57 AM

Double post removed.

Edited by ShaesMom, 14 August 2012 - 09:57 AM.


#4 red

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Posted 14 August 2012 - 11:10 AM

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.twofrogsc....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/

#5 evergreen

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Posted 14 August 2012 - 09:22 PM

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.

#6 evergreen

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Posted 14 August 2012 - 09:29 PM

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

#7 mdmom

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Posted 15 August 2012 - 03:57 AM

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.

DS16 dx with PANDAS/Lyme & Co. at age 13 symptomatic since age 2; originally dx with Asperger's, OCD, Anxiety, PTSD
DD14 dx with Lyme, Babesia, Bartonella at age 11, symptomatic from birth

Mom & Dad with various symptoms for 20 years; both M & D being treated for Lyme & Co.

Also addressing MTHFR, diet (GF/CF/GMO-free or Organic),


#8 mdmom

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Posted 15 August 2012 - 08:24 AM

Evergreen,

I sent you a Personal Message.

DS16 dx with PANDAS/Lyme & Co. at age 13 symptomatic since age 2; originally dx with Asperger's, OCD, Anxiety, PTSD
DD14 dx with Lyme, Babesia, Bartonella at age 11, symptomatic from birth

Mom & Dad with various symptoms for 20 years; both M & D being treated for Lyme & Co.

Also addressing MTHFR, diet (GF/CF/GMO-free or Organic),


#9 tpotter

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Posted 15 August 2012 - 04:48 PM


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.twofrogsc....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/



#10 tpotter

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Posted 15 August 2012 - 05:00 PM

Sent you a PM.

#11 red

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Posted 16 August 2012 - 12:57 PM



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.twofrogsc....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, 16 August 2012 - 01:35 PM.


#12 philamom

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Posted 16 August 2012 - 01:37 PM

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, 16 August 2012 - 05:18 PM.

Dd 13
Chronic Sinusitis since 18mths of age. Symptoms emerged with sinus infections and into remission with abx.
Severe Episode in March 2006. Dx with PANDAS May 2006. Three other episodes between 2007-2009.
2009- symptoms became chronic.
2010- dx with lyme, bartonella, rmsf. Positive Igenex Lyme. Positive Quest Bartonella and RMSF (igg).
2011- lupus flair, erythema nodosum, Pots, Positive Advanced Lab Culture w/ pic of spirochetes in sample. Positive Igenex

2012- endoscopy & colonoscopy

2013- Still positive for Lyme w/Igenex.. Positive Bartonella w/Quest

2014- Positive Advanced Lab borrelia culture, Positive Igenex, lupus flair, hypothyroidism

 

Treatment: abx & ivig


#13 llm

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Posted 16 August 2012 - 01:54 PM

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.

#14 red

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Posted 18 August 2012 - 08:01 AM


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.

#15 evergreen

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Posted 19 August 2012 - 08:05 AM

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!




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