Dr. Bouboulis- What to Expect?

[LJsAdvocate]

I am preparing for an appointment with Dr. B on September 1st. Can anyone offer some insight into what to expect at this appointment?

A few specific questions-

Will blood be drawn in the office at the time of appointment?

Does he look at a variety of things outside of strep/infectious triggers like allergies, heavy metals, vitamin deficiencies, etc?

I have dealt with Dr. T in the past... How is Dr. B similar/different?

Can follow-up be done via phone consult?

 

Thanks in advance. We are traveling from NJ to CT so I want to make the most of this opportunity.

 

 

[HopeinHIM]

Dr B was the doc who finally put us on the Bartinella/Lymes track. WE too traveled from NJ. He is a nice man but He is NOT going to help in the nutrional/supplement's/ detox department. He is an MD!!! He will give you the anti /Biotics. He is no longer taking some insurances and that was too bad bc he was one of the very few docs left that still participated /w insurance. Very very busy office and although a few gals are nice, overall, they are disorganized and unfriendly group. They take forever to get back to you so be prepred for that as well. Get to know the office girls names and see if you can connect that way. They will draw blood /and do the igenx tests at the office. He is NOT an/ LLMD he is an//allergist. /He/ will run the standard allergy tests. Do NOT run them in his office bc if you are from NJ you will need a local allergist should your child need weekly shots and your local allergist will not take another docs test results. Even if they say they will. My kids /went thru the testing twice for that reason. Nj allergist would not take Dr B's results. If you go armed with lots of knowledge and know all about detoxing then you should be OK. Our child got better for the first few months with Dr B but he /was overloaded with three different meds AND with NO detox protocol/. For our child that was very bad. He definitely understands the PANS /Lymes connection . Dr T is also our Dr and He /is NOT Lyme's co infection knowledgeable at all. You must be educated with these guys. I love them both and they both have their strengths for sure. You must be educated with all docs in my opinion. Each one will offer you /only a piece of the puzzle. Find out how well your child detoxes / and any methyl issues and bring the info to Dr B. He will also do IVIG in his office if you need that. Again, research and ask around with each form of treatment bc Dr B is very busy and not into the small (but significant) details of treatments. That will be up to you. He believes that a lot of PANS is Lymes/Co-infection related and for that reason alone, he is helping a lot of very sick children.

[awilliams74]

Dr B was the doc who finally put us on the Bartinella/Lymes track. WE too traveled from NJ. He is a nice man but He is NOT going to help in the nutrional/supplement's/ detox department. He is an MD!!! He will give you the anti /Biotics. He is no longer taking some insurances and that was too bad bc he was one of the very few docs left that still participated /w insurance. Very very busy office and although a few gals are nice, overall, they are disorganized and unfriendly group. They take forever to get back to you so be prepred for that as well. Get to know the office girls names and see if you can connect that way. They will draw blood /and do the igenx tests at the office. He is NOT an/ LLMD he is an//allergist. /He/ will run the standard allergy tests. Do NOT run them in his office bc if you are from NJ you will need a local allergist should your child need weekly shots and your local allergist will not take another docs test results. Even if they say they will. My kids /went thru the testing twice for that reason. Nj allergist would not take Dr B's results. If you go armed with lots of knowledge and know all about detoxing then you should be OK. Our child got better for the first few months with Dr B but he /was overloaded with three different meds AND with NO detox protocol/. For our child that was very bad. He definitely understands the PANS /Lymes connection . Dr T is also our Dr and He /is NOT Lyme's co infection knowledgeable at all. You must be educated with these guys. I love them both and they both have their strengths for sure. You must be educated with all docs in my opinion. Each one will offer you /only a piece of the puzzle. Find out how well your child detoxes / and any methyl issues and bring the info to Dr B. He will also do IVIG in his office if you need that. Again, research and ask around with each form of treatment bc Dr B is very busy and not into the small (but significant) details of treatments. That will be up to you. He believes that a lot of PANS is Lymes/Co-infection related and for that reason alone, he is helping a lot of very sick children.

Can you tell me how your kids did with allergy shots? Allergies are a huge trigger for our DS and the local allergist wants to start allergy shots for that reason, but she is not really PANS knowledgeable although she is PANS friendly. Also, how did your take your child off allergy meds for testing (DS takes singulair and levoceterizine and sometimes that's not enough)? We also see Dr. T. Thanks!

[HopeinHIM]

I am preparing for an appointment with Dr. B on September 1st. Can anyone offer some insight into what to expect at this appointment?

A few specific questions-

Will blood be drawn in the office at the time of appointment?

Does he look at a variety of things outside of strep/infectious triggers like allergies, heavy metals, vitamin deficiencies, etc?

I have dealt with Dr. T in the past... How is Dr. B similar/different?

Can follow-up be done via phone consult?

 

Thanks in advance. We are traveling from NJ to CT so I want to make the most of this opportunity.

 

/You can do follow-up phone consults BUT they are not the best. The office will give you an approximate time that he will call and you could wait two hours for his call within that time slot. It's a $250 call fee and no insurance accepted for that. We had an 11:00 consultation and Dr B finally got to us by 1:00. Sorry, just be prepared that the office is not run very well. I believe that they are just way too busy. But, if you must have a phone consult the answer is yes, he does them.

[LJsAdvocate]

Dr B was the doc who finally put us on the Bartinella/Lymes track. WE too traveled from NJ. He is a nice man but He is NOT going to help in the nutrional/supplement's/ detox department. He is an MD!!! He will give you the anti /Biotics. He is no longer taking some insurances and that was too bad bc he was one of the very few docs left that still participated /w insurance. Very very busy office and although a few gals are nice, overall, they are disorganized and unfriendly group. They take forever to get back to you so be prepred for that as well. Get to know the office girls names and see if you can connect that way. They will draw blood /and do the igenx tests at the office. He is NOT an/ LLMD he is an//allergist. /He/ will run the standard allergy tests. Do NOT run them in his office bc if you are from NJ you will need a local allergist should your child need weekly shots and your local allergist will not take another docs test results. Even if they say they will. My kids /went thru the testing twice for that reason. Nj allergist would not take Dr B's results. If you go armed with lots of knowledge and know all about detoxing then you should be OK. Our child got better for the first few months with Dr B but he /was overloaded with three different meds AND with NO detox protocol/. For our child that was very bad. He definitely understands the PANS /Lymes connection . Dr T is also our Dr and He /is NOT Lyme's co infection knowledgeable at all. You must be educated with these guys. I love them both and they both have their strengths for sure. You must be educated with all docs in my opinion. Each one will offer you /only a piece of the puzzle. Find out how well your child detoxes / and any methyl issues and bring the info to Dr B. He will also do IVIG in his office if you need that. Again, research and ask around with each form of treatment bc Dr B is very busy and not into the small (but significant) details of treatments. That will be up to you. He believes that a lot of PANS is Lymes/Co-infection related and for that reason alone, he is helping a lot of very sick children.

 

Thanks hopeinHIM-

 

How do I go about finding out how he detoxes and any methyl issues? Can you recommend someone in NJ?

 

Also, do you have a good allergist/immunologist in NJ?

 

We did some allergy blood tests with Dr. T and it appears that my son is slightly reactive to everything, so I am confused/overwhelmed.

 

Also, Dr. T ran all the lyme and co-infection stuff through Labcorp. Only one band present on western blot... is this worth digging deeper?

 

Thanks for your help, I am lost for where to begin as its all very confusing!

[HopeinHIM]

 

Dr B was the doc who finally put us on the Bartinella/Lymes track. WE too traveled from NJ. He is a nice man but He is NOT going to help in the nutrional/supplement's/ detox department. He is an MD!!! He will give you the anti /Biotics. He is no longer taking some insurances and that was too bad bc he was one of the very few docs left that still participated /w insurance. Very very busy office and although a few gals are nice, overall, they are disorganized and unfriendly group. They take forever to get back to you so be prepred for that as well. Get to know the office girls names and see if you can connect that way. They will draw blood /and do the igenx tests at the office. He is NOT an/ LLMD he is an//allergist. /He/ will run the standard allergy tests. Do NOT run them in his office bc if you are from NJ you will need a local allergist should your child need weekly shots and your local allergist will not take another docs test results. Even if they say they will. My kids /went thru the testing twice for that reason. Nj allergist would not take Dr B's results. If you go armed with lots of knowledge and know all about detoxing then you should be OK. Our child got better for the first few months with Dr B but he /was overloaded with three different meds AND with NO detox protocol/. For our child that was very bad. He definitely understands the PANS /Lymes connection . Dr T is also our Dr and He /is NOT Lyme's co infection knowledgeable at all. You must be educated with these guys. I love them both and they both have their strengths for sure. You must be educated with all docs in my opinion. Each one will offer you /only a piece of the puzzle. Find out how well your child detoxes / and any methyl issues and bring the info to Dr B. He will also do IVIG in his office if you need that. Again, research and ask around with each form of treatment bc Dr B is very busy and not into the small (but significant) details of treatments. That will be up to you. He believes that a lot of PANS is Lymes/Co-infection related and for that reason alone, he is helping a lot of very sick children.

Can you tell me how your kids did with allergy shots? Allergies are a huge trigger for our DS and the local allergist wants to start allergy shots for that reason, but she is not really PANS knowledgeable although she is PANS friendly. Also, how did your take your child off allergy meds for testing (DS takes singulair and levoceterizine and sometimes that's not enough)? We also see Dr. T. Thanks!

 

As we moved through treatment, our youngest no longer shows allergies. He no longer uses any meds. Our oldest has been doing the shots along with treatment and he is having a ruff time. Their immune systems are already worn down so I really struggled with what to do. We ended up going very low and slow with him. It has been 8 months and see no improvement as of yet. As far as testing, we just removed all meds prayed and went for it. We got through OK! There are mixed opinions on treating allergies at the same time. My boys are perfect example s.

[MaryAW]

My DD tested positive to everything on the intradermal test. My dr said that some people's skin is so sensitive that they test positive even though they are not allergic. On the blood test, she was only allergic to dust.

 

I asked about allergies at a conference once, and Dr. Swedo said that the child's immune system is so inflamed that it may react to the allergens as if if they were allergic. Just like Hopeinhim, I have seen my daughter's allergies decrease. She used to flare from spring till the first frost. Each year we have seen improvement, with now just a reaction from mold spores.

 

Getting the vitamin D level up to above 40 ng/ml (50-80 is best) and giving a high quality omega 3 (we use Nordic Natural Ultimate Omega Jr. - 2 pills twice a day) helped us to see a HUGE improvement in every aspect of our DD's PANS.