advice on Dr. Jones?

[Bill]

Hello everyone,

 

We are in a bad place once again. I had thought that things were getting a bit better with my oldest son, but now all the ocd is back and worse. We are on azithromycin 250 mg 2x a day and I added omnicef 1x a day. He had a bicillin injection on Feb 4. I know there are people on here who have suggested I look into lyme. I sent bloodwork to igenex and will get results anytime from the18th-24th. Heres my question I contacted Dr. Jones in ct and they have availability on the 21st otherwise we will have to wait till may. I also have appointment with dr.b on the 23rd. Who has seen Dr. Jones? what do u suggest, think he can help even if labs not back? or should I wait. We have done ivig twice with dr.b end of Aug and end of oct. Insurance has yet to pay. We are tapped out and haven't found help. I also don't want to run from dr to dr and pay enormous amount and then leave in same situation. I have been to dr.t, dr.b, Scott smith, neurologist, infectious disease. I want my kids to enjoy life and I want to be able to enjoy them. This its a horrible illness and no help from insurance. Any suggestions?

Thank you!

 

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May.

 

Dr. J. did send us a follow up report. It took a couple of weeks but he did it.

 

And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before.

 

bill

Hi Bill thank you for your response. I did contact Dr. J office and they said most people come in not having blood work so I am ahead of the game. I just wonder its results are negative will I just be wasting money going to see him. I'm so confused, I just feel this is our last resort to get some help. We too have been denied ivig with Dr. B, we just had a phone conference with insurance and dr.b, they really don't want to understand it seems. They asked if my son had Pandas even though that's not what dr.b coded it as because he has failed most of the pneumococal titers. I hope they approve, next step is external appeal.

 

 

It's a tough call regarding the money. For us, our son shares many symptoms with others here but has some that are not common. Two doctors referred us to Dr. J. because "if anyone has seen a case like your son, he has." For us, it was worth the trip to hear Dr. J. say "Yes, I have seen several kids like your son." (paraphrasing from memory of course) That was quit comforting. Dr. J. was careful to not promise us a full recovery but he felt positive that he could make our son much better. We are working with our local doctor who is learning and consults with Dr. J. when needed so we have not made a follow up appointment. I would not hesitate to make another appointment with Dr. J. in the future.

[Tamistwins]

Hello everyone,

 

We are in a bad place once again. I had thought that things were getting a bit better with my oldest son, but now all the ocd is back and worse. We are on azithromycin 250 mg 2x a day and I added omnicef 1x a day. He had a bicillin injection on Feb 4. I know there are people on here who have suggested I look into lyme. I sent bloodwork to igenex and will get results anytime from the18th-24th. Heres my question I contacted Dr. Jones in ct and they have availability on the 21st otherwise we will have to wait till may. I also have appointment with dr.b on the 23rd. Who has seen Dr. Jones? what do u suggest, think he can help even if labs not back? or should I wait. We have done ivig twice with dr.b end of Aug and end of oct. Insurance has yet to pay. We are tapped out and haven't found help. I also don't want to run from dr to dr and pay enormous amount and then leave in same situation. I have been to dr.t, dr.b, Scott smith, neurologist, infectious disease. I want my kids to enjoy life and I want to be able to enjoy them. This its a horrible illness and no help from insurance. Any suggestions?

Thank you!

 

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May.

 

Dr. J. did send us a follow up report. It took a couple of weeks but he did it.

 

And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before.

 

bill

Hi Bill thank you for your response. I did contact Dr. J office and they said most people come in not having blood work so I am ahead of the game. I just wonder its results are negative will I just be wasting money going to see him. I'm so confused, I just feel this is our last resort to get some help. We too have been denied ivig with Dr. B, we just had a phone conference with insurance and dr.b, they really don't want to understand it seems. They asked if my son had Pandas even though that's not what dr.b coded it as because he has failed most of the pneumococal titers. I hope they approve, next step is external appeal.

 

 

It's a tough call regarding the money. For us, our son shares many symptoms with others here but has some that are not common. Two doctors referred us to Dr. J. because "if anyone has seen a case like your son, he has." For us, it was worth the trip to hear Dr. J. say "Yes, I have seen several kids like your son." (paraphrasing from memory of course) That was quit comforting. Dr. J. was careful to not promise us a full recovery but he felt positive that he could make our son much better. We are working with our local doctor who is learning and consults with Dr. J. when needed so we have not made a follow up appointment. I would not hesitate to make another appointment with Dr. J. in the future.

That is comforting to hear that a doctor has seen the same case before; but I would rather hear that he will make my child well again. Although I have heard that and am still waiting for that miracle. So your pediatrician consults with dr. J? so who actually prescribes the medication? may I ask what your child has and how its being treated? my son has humoral immunodeficiency had high mycoplasma pnemonia, had ebv last year and we are waiting on igenex results. Thank you for sharing.

[Ozimum]

Hiya,

I'm hoping like mad that you get some answers. My naturopath found and treated me for walking pneumonia - I had no idea and he's now working on clearing another infection I cannot spell let alone pronounce! And, my ds is currently doing well.

Good luck getting ivig. Hope things get better soon.

Edited February 17, 2011 by Ozimum

[Tamistwins]

Hiya,

I'm hoping like mad that you get some answers. My naturopath found and treated me for walking pneumonia - I had no idea and he's now working on clearing another infection I cannot spell let alone pronounce! And, my ds is currently doing well.

Good luck getting ivig. Hope things get better soon.

Hi,

Glad your ds is doing well and that you are getting your infections under control, hoping we will all find answers to our problems soon.

[Bill]

Hello everyone,

 

We are in a bad place once again. I had thought that things were getting a bit better with my oldest son, but now all the ocd is back and worse. We are on azithromycin 250 mg 2x a day and I added omnicef 1x a day. He had a bicillin injection on Feb 4. I know there are people on here who have suggested I look into lyme. I sent bloodwork to igenex and will get results anytime from the18th-24th. Heres my question I contacted Dr. Jones in ct and they have availability on the 21st otherwise we will have to wait till may. I also have appointment with dr.b on the 23rd. Who has seen Dr. Jones? what do u suggest, think he can help even if labs not back? or should I wait. We have done ivig twice with dr.b end of Aug and end of oct. Insurance has yet to pay. We are tapped out and haven't found help. I also don't want to run from dr to dr and pay enormous amount and then leave in same situation. I have been to dr.t, dr.b, Scott smith, neurologist, infectious disease. I want my kids to enjoy life and I want to be able to enjoy them. This its a horrible illness and no help from insurance. Any suggestions?

Thank you!

 

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May.

 

Dr. J. did send us a follow up report. It took a couple of weeks but he did it.

 

And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before.

 

bill

Hi Bill thank you for your response. I did contact Dr. J office and they said most people come in not having blood work so I am ahead of the game. I just wonder its results are negative will I just be wasting money going to see him. I'm so confused, I just feel this is our last resort to get some help. We too have been denied ivig with Dr. B, we just had a phone conference with insurance and dr.b, they really don't want to understand it seems. They asked if my son had Pandas even though that's not what dr.b coded it as because he has failed most of the pneumococal titers. I hope they approve, next step is external appeal.

 

 

It's a tough call regarding the money. For us, our son shares many symptoms with others here but has some that are not common. Two doctors referred us to Dr. J. because "if anyone has seen a case like your son, he has." For us, it was worth the trip to hear Dr. J. say "Yes, I have seen several kids like your son." (paraphrasing from memory of course) That was quit comforting. Dr. J. was careful to not promise us a full recovery but he felt positive that he could make our son much better. We are working with our local doctor who is learning and consults with Dr. J. when needed so we have not made a follow up appointment. I would not hesitate to make another appointment with Dr. J. in the future.

That is comforting to hear that a doctor has seen the same case before; but I would rather hear that he will make my child well again. Although I have heard that and am still waiting for that miracle. So your pediatrician consults with dr. J? so who actually prescribes the medication? may I ask what your child has and how its being treated? my son has humoral immunodeficiency had high mycoplasma pnemonia, had ebv last year and we are waiting on igenex results. Thank you for sharing.

 

 

We found an internist who is treating my son. She prescribes the medicine.

 

As to what my son has, well - symptom wise: behavioral issues (anger/raging), generalized dystonia, dilated pupils, severe 'contamination' OCD, sucks at math (6 A's, 1 B+, 'D' in math last quarter), bathroom issues (only goes twice a day, three if we make him), limited diet. Think that covers the basics.

 

Officially, PANDAS, Lyme bacteria, bartonella, babesia suspected. Dr. B. has diagnosed CVID, common variable immune deficiency and wants to do IVIG (so far insurance has denied). He had plasmapheresis over a year ago but before we knew about the Lyme.

 

Current 'medicine' routine:

 

Prozac: 30mg daily

Minocycline 50mg X 1 daily

Azithromycin 250mg X 2 daily

Augmentin ER 1,000 X 2 daily

Tindamax 1 tablet Fri pm, Sat am + pm, Sun am only

B12 2,500mg periodically

Vitamin D 2,000 IU periodically

Coenzyme Q-10 200mg day

Vitamin C 500mg periodically

Florastor 2 daily (Saccharomyces boulardii, 250mg)

Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B)

Saccharomyces Boulardii + MOS 5B/capsule X 1 daily

 

Son is 12 years old and 85 pounds.

 

After 4 months, his left foot/ankle is relaxing and his eyes are less dilated. OCD/anxiety are through the roof. Of all the symptoms, OCD is by far the worse for us as a family. Therapies and even a stint at U Penn did not help in the slightest.

 

bill

[Tamistwins]

Hello everyone,

 

We are in a bad place once again. I had thought that things were getting a bit better with my oldest son, but now all the ocd is back and worse. We are on azithromycin 250 mg 2x a day and I added omnicef 1x a day. He had a bicillin injection on Feb 4. I know there are people on here who have suggested I look into lyme. I sent bloodwork to igenex and will get results anytime from the18th-24th. Heres my question I contacted Dr. Jones in ct and they have availability on the 21st otherwise we will have to wait till may. I also have appointment with dr.b on the 23rd. Who has seen Dr. Jones? what do u suggest, think he can help even if labs not back? or should I wait. We have done ivig twice with dr.b end of Aug and end of oct. Insurance has yet to pay. We are tapped out and haven't found help. I also don't want to run from dr to dr and pay enormous amount and then leave in same situation. I have been to dr.t, dr.b, Scott smith, neurologist, infectious disease. I want my kids to enjoy life and I want to be able to enjoy them. This its a horrible illness and no help from insurance. Any suggestions?

Thank you!

 

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May.

 

Dr. J. did send us a follow up report. It took a couple of weeks but he did it.

 

And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before.

 

bill

Hi Bill thank you for your response. I did contact Dr. J office and they said most people come in not having blood work so I am ahead of the game. I just wonder its results are negative will I just be wasting money going to see him. I'm so confused, I just feel this is our last resort to get some help. We too have been denied ivig with Dr. B, we just had a phone conference with insurance and dr.b, they really don't want to understand it seems. They asked if my son had Pandas even though that's not what dr.b coded it as because he has failed most of the pneumococal titers. I hope they approve, next step is external appeal.

 

 

It's a tough call regarding the money. For us, our son shares many symptoms with others here but has some that are not common. Two doctors referred us to Dr. J. because "if anyone has seen a case like your son, he has." For us, it was worth the trip to hear Dr. J. say "Yes, I have seen several kids like your son." (paraphrasing from memory of course) That was quit comforting. Dr. J. was careful to not promise us a full recovery but he felt positive that he could make our son much better. We are working with our local doctor who is learning and consults with Dr. J. when needed so we have not made a follow up appointment. I would not hesitate to make another appointment with Dr. J. in the future.

That is comforting to hear that a doctor has seen the same case before; but I would rather hear that he will make my child well again. Although I have heard that and am still waiting for that miracle. So your pediatrician consults with dr. J? so who actually prescribes the medication? may I ask what your child has and how its being treated? my son has humoral immunodeficiency had high mycoplasma pnemonia, had ebv last year and we are waiting on igenex results. Thank you for sharing.

 

 

We found an internist who is treating my son. She prescribes the medicine.

 

As to what my son has, well - symptom wise: behavioral issues (anger/raging), generalized dystonia, dilated pupils, severe 'contamination' OCD, sucks at math (6 A's, 1 B+, 'D' in math last quarter), bathroom issues (only goes twice a day, three if we make him), limited diet. Think that covers the basics.

 

Officially, PANDAS, Lyme bacteria, bartonella, babesia suspected. Dr. B. has diagnosed CVID, common variable immune deficiency and wants to do IVIG (so far insurance has denied). He had plasmapheresis over a year ago but before we knew about the Lyme.

 

Current 'medicine' routine:

 

Prozac: 30mg daily

Minocycline 50mg X 1 daily

Azithromycin 250mg X 2 daily

Augmentin ER 1,000 X 2 daily

Tindamax 1 tablet Fri pm, Sat am + pm, Sun am only

B12 2,500mg periodically

Vitamin D 2,000 IU periodically

Coenzyme Q-10 200mg day

Vitamin C 500mg periodically

Florastor 2 daily (Saccharomyces boulardii, 250mg)

Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B)

Saccharomyces Boulardii + MOS 5B/capsule X 1 daily

 

Son is 12 years old and 85 pounds.

 

After 4 months, his left foot/ankle is relaxing and his eyes are less dilated. OCD/anxiety are through the roof. Of all the symptoms, OCD is by far the worse for us as a family. Therapies and even a stint at U Penn did not help in the slightest.

 

bill

[Tamistwins]

Hello everyone,

 

We are in a bad place once again. I had thought that things were getting a bit better with my oldest son, but now all the ocd is back and worse. We are on azithromycin 250 mg 2x a day and I added omnicef 1x a day. He had a bicillin injection on Feb 4. I know there are people on here who have suggested I look into lyme. I sent bloodwork to igenex and will get results anytime from the18th-24th. Heres my question I contacted Dr. Jones in ct and they have availability on the 21st otherwise we will have to wait till may. I also have appointment with dr.b on the 23rd. Who has seen Dr. Jones? what do u suggest, think he can help even if labs not back? or should I wait. We have done ivig twice with dr.b end of Aug and end of oct. Insurance has yet to pay. We are tapped out and haven't found help. I also don't want to run from dr to dr and pay enormous amount and then leave in same situation. I have been to dr.t, dr.b, Scott smith, neurologist, infectious disease. I want my kids to enjoy life and I want to be able to enjoy them. This its a horrible illness and no help from insurance. Any suggestions?

Thank you!

 

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May.

 

Dr. J. did send us a follow up report. It took a couple of weeks but he did it.

 

And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before.

 

bill

Hi Bill thank you for your response. I did contact Dr. J office and they said most people come in not having blood work so I am ahead of the game. I just wonder its results are negative will I just be wasting money going to see him. I'm so confused, I just feel this is our last resort to get some help. We too have been denied ivig with Dr. B, we just had a phone conference with insurance and dr.b, they really don't want to understand it seems. They asked if my son had Pandas even though that's not what dr.b coded it as because he has failed most of the pneumococal titers. I hope they approve, next step is external appeal.

 

 

It's a tough call regarding the money. For us, our son shares many symptoms with others here but has some that are not common. Two doctors referred us to Dr. J. because "if anyone has seen a case like your son, he has." For us, it was worth the trip to hear Dr. J. say "Yes, I have seen several kids like your son." (paraphrasing from memory of course) That was quit comforting. Dr. J. was careful to not promise us a full recovery but he felt positive that he could make our son much better. We are working with our local doctor who is learning and consults with Dr. J. when needed so we have not made a follow up appointment. I would not hesitate to make another appointment with Dr. J. in the future.

That is comforting to hear that a doctor has seen the same case before; but I would rather hear that he will make my child well again. Although I have heard that and am still waiting for that miracle. So your pediatrician consults with dr. J? so who actually prescribes the medication? may I ask what your child has and how its being treated? my son has humoral immunodeficiency had high mycoplasma pnemonia, had ebv last year and we are waiting on igenex results. Thank you for sharing.

 

 

We found an internist who is treating my son. She prescribes the medicine.

 

As to what my son has, well - symptom wise: behavioral issues (anger/raging), generalized dystonia, dilated pupils, severe 'contamination' OCD, sucks at math (6 A's, 1 B+, 'D' in math last quarter), bathroom issues (only goes twice a day, three if we make him), limited diet. Think that covers the basics.

 

Officially, PANDAS, Lyme bacteria, bartonella, babesia suspected. Dr. B. has diagnosed CVID, common variable immune deficiency and wants to do IVIG (so far insurance has denied). He had plasmapheresis over a year ago but before we knew about the Lyme.

 

Current 'medicine' routine:

 

Prozac: 30mg daily

Minocycline 50mg X 1 daily

Azithromycin 250mg X 2 daily

Augmentin ER 1,000 X 2 daily

Tindamax 1 tablet Fri pm, Sat am + pm, Sun am only

B12 2,500mg periodically

Vitamin D 2,000 IU periodically

Coenzyme Q-10 200mg day

Vitamin C 500mg periodically

Florastor 2 daily (Saccharomyces boulardii, 250mg)

Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B)

Saccharomyces Boulardii + MOS 5B/capsule X 1 daily

 

Son is 12 years old and 85 pounds.

 

After 4 months, his left foot/ankle is relaxing and his eyes are less dilated. OCD/anxiety are through the roof. Of all the symptoms, OCD is by far the worse for us as a family. Therapies and even a stint at U Penn did not help in the slightest.

 

bill

Wow Bill,

That is alot of medication how do u fit the probiotics in, I have a hard time. I hope you see good results soon, I completely understand the ocd issues. When my son gets worse it is impossible to stay calm and sane. He requires that I repeat the word ok to him and it can be so many times that I can't take it anymore. I feel so guilty about how I react but I just can't take it. I have3 children and they all are so needy, but, he demands things and if it isn't how he likes it when he likes it then he rages and gets so upset. I feel so sorry for him and all of us. It really makes living a normal life impossible. I can't go anywhere it's embarrassing. I feel like an awful parent because I know it's an illness.

[Bill]

Wow Bill,

That is alot of medication how do u fit the probiotics in, I have a hard time. I hope you see good results soon, I completely understand the ocd issues. When my son gets worse it is impossible to stay calm and sane. He requires that I repeat the word ok to him and it can be so many times that I can't take it anymore. I feel so guilty about how I react but I just can't take it. I have3 children and they all are so needy, but, he demands things and if it isn't how he likes it when he likes it then he rages and gets so upset. I feel so sorry for him and all of us. It really makes living a normal life impossible. I can't go anywhere it's embarrassing. I feel like an awful parent because I know it's an illness.

 

 

Fitting in probiotics has not been too bad. Our doctor thinks it's fine to take at the same time as the antibiotics. Of course I've read the opposite here . For some insurance, some we give with the antibiotics and some we fit in well after/before bedtime.

 

As to your reaction - you are not alone. I have the utmost respect for parents who can deal with their child's mental illness with dignity. I am not one of them. We've had a tough week where I thought I would lose it (bad dad) a couple of times. We relented and increased his prozac dosage (back to 30mg) so hopefully that will help. We end up relenting to his demands to keep the situation under control which means we push back until we'll explode . Exactly opposite of what all of the experts advise but the experts are not here, we are.

 

Did I mention - you are not alone. Hang in there. We have to believe this will get better.

 

bill

[momaine]

I just want to mention that if Dr. J feels confident that your child has lyme/co-infections based on symptoms and exposure, that he will treat despite the labs that you bring in. He will also do about a million more labs to try to confirm his diagnosis. I am so happy we went to him. I'm going to write and update on my dd now. I'd been waiting for labs to come back but I'm tired of waiting so I'll do another update when those come in.

[Tamistwins]

I just want to mention that if Dr. J feels confident that your child has lyme/co-infections based on symptoms and exposure, that he will treat despite the labs that you bring in. He will also do about a million more labs to try to confirm his diagnosis. I am so happy we went to him. I'm going to write and update on my dd now. I'd been waiting for labs to come back but I'm tired of waiting so I'll do another update when those come in.

I'm really happy you found help, I read your update, great news!