advice on Dr. Jones?

[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!

[LNN]

I hear you on the sucking sound of money flying out of pocket. Some parents go broke on hockey gear and ballet lessons, we get to go broke on doctors, pills and blood products.

 

So you have already spent the money on Igenex. IMO I would wait until you get the results. You can make a May appt with Dr J and still be put on a waiting list, just for something after the 24th, if you can travel with little notice. There are also two other LLMDs in the area - one in Bridgeport and one near Hartford (who sees both my kids - one for lyme and one for something but we're not sure what to call it yet). We were initially given an appt. 6 weeks out but were able to get in w/in 2 weeks due to a cancellation.

 

I know you just want it to all end NOW. I'd probably advise you call this week but to make an appt for after the results are back. Also make sure you get a copy of the lab results. As you've heard over and over, there are various interpretations of what each band result means. So best to have the actual labs in your hand so you can google and maybe discuss with doctors on the phone. You can PM me if you'd like additional info.

 

Best of luck,

Laura

[Tamistwins]

Thank you Laura. The test results aren't really definitive so I wonder if it's negative if a lyme doc would still treat. This is the last stop I assume, I have been to all the doctors and tried treatment to no lasting success. I spoke with Dr. Jones's office mgr and was quite impressed. She told me the Dr will mail out a report to us with diagnosis and help with 504. This is included with first payment. I have requested written explanations from other doctors and had to chase them for it. I finally got a strong letter from Dr. B for insurance but really nothing for the school. I'm glad your happy with your lyme doc.

[philamom]

If you decide to take the appointment, is it possible to call Igenex and have the results faxed directly to Dr. J as well. Tell them the date of your appt. Just thinking out loud.

I am very happy with the progress my daughter is making under his care. She still has setbacks, but overall is moving in an upward trend. During our evaluation, he could tell she was dealing with Bartonella even though she was negative for it thru Igenex. He started her on a combination of abx that would treat it, as well as lyme. She did end up testing positive for it.

I don't want to persuade your decision...just wanted to let you know he's been very helpful to us.

 

Praying for better days soon!!!

Melinda

 

BTW- anyone who remembers my daughter is a major hoarder...today she donated 70 of her books to a local charity at school. Major step forward! I was so proud of her...better yet, she was so proud of herself! Now, if I could just do something with all those stuffies!

[Tamistwins]

Oh Melinda I hear you, my daughter is also a major hoarder, is that also a lyme symptom? What a ntibiotics does he have your daughter on?

[Fixit]

philamom...that is such great news!!!!

how long have you been treating?

how long from time you started treating till you thought that maybe you could get her to do that...was it just recent???

Tryng to get perspective and love hearing the good news!!!

[Tamistwins]

If you decide to take the appointment, is it possible to call Igenex and have the results faxed directly to Dr. J as well. Tell them the date of your appt. Just thinking out loud.

I am very happy with the progress my daughter is making under his care. She still has setbacks, but overall is moving in an upward trend. During our evaluation, he could tell she was dealing with Bartonella even though she was negative for it thru Igenex. He started her on a combination of abx that would treat it, as well as lyme. She did end up testing positive for it.

I don't want to persuade your decision...just wanted to let you know he's been very helpful to us.

 

Praying for better days soon!!!

Melinda

 

BTW- anyone who remembers my daughter is a major hoarder...today she donated 70 of her books to a local charity at school. Major step forward! I was so proud of her...better yet, she was so proud of herself! Now, if I could just do something with all those stuffies!

Melinda,

I took the appointment. Igenex said it takes 7-10 business days to get results so I don't think they will bump mine up just because I have an appointment. Can you tell me what medications your daughter is on? if all goes well I will then need an appointment for my daughter too.

[philamom]

If you decide to take the appointment, is it possible to call Igenex and have the results faxed directly to Dr. J as well. Tell them the date of your appt. Just thinking out loud.

I am very happy with the progress my daughter is making under his care. She still has setbacks, but overall is moving in an upward trend. During our evaluation, he could tell she was dealing with Bartonella even though she was negative for it thru Igenex. He started her on a combination of abx that would treat it, as well as lyme. She did end up testing positive for it.

I don't want to persuade your decision...just wanted to let you know he's been very helpful to us.

 

Praying for better days soon!!!

Melinda

 

BTW- anyone who remembers my daughter is a major hoarder...today she donated 70 of her books to a local charity at school. Major step forward! I was so proud of her...better yet, she was so proud of herself! Now, if I could just do something with all those stuffies!

Melinda,

I took the appointment. Igenex said it takes 7-10 business days to get results so I don't think they will bump mine up just because I have an appointment. Can you tell me what medications your daughter is on? if all goes well I will then need an appointment for my daughter too.

My daughter is currently taking Amox, Zith, Minocin, and Tindamax (cyst buster) on weekends.

[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

[Tamistwins]

If you decide to take the appointment, is it possible to call Igenex and have the results faxed directly to Dr. J as well. Tell them the date of your appt. Just thinking out loud.

I am very happy with the progress my daughter is making under his care. She still has setbacks, but overall is moving in an upward trend. During our evaluation, he could tell she was dealing with Bartonella even though she was negative for it thru Igenex. He started her on a combination of abx that would treat it, as well as lyme. She did end up testing positive for it.

I don't want to persuade your decision...just wanted to let you know he's been very helpful to us.

 

Praying for better days soon!!!

Melinda

 

BTW- anyone who remembers my daughter is a major hoarder...today she donated 70 of her books to a local charity at school. Major step forward! I was so proud of her...better yet, she was so proud of herself! Now, if I could just do something with all those stuffies!

Melinda,

I took the appointment. Igenex said it takes 7-10 business days to get results so I don't think they will bump mine up just because I have an appointment. Can you tell me what medications your daughter is on? if all goes well I will then need an appointment for my daughter too.

My daughter is currently taking Amox, Zith, Minocin, and Tindamax (cyst buster) on weekends.

Is she taking all 3 at same time?

[philamom]

Amox & Zith in morning, Amox & Minocin with dinner.

[Tamistwins]

Amox & Zith in morning, Amox & Minocin with dinner.

What is minocin? how old is your daughter? is it not too harsh on her stomache? I hope she gets well!

[philamom]

Daughter is 9. Minocin is being used to treat her co-infections. She's been on it for 2 months now with no stomach issues. I currently give her 250+ billion cfu daily probiotics. Hang in there!

[Tamistwins]

Daughter is 9. Minocin is being used to treat her co-infections. She's been on it for 2 months now with no stomach issues. I currently give her 250+ billion cfu daily probiotics. Hang in there!

Thank you!

[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.