Tamistwins

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

Both my children are chronic, but yes she had a neck tic and a finger movement similar to snapping and eye blinking that all went away. unfortunately her eye blinking is back and its worse and she is very oppositional now and back talks. She used to urinate frequently and feel like wet, or dripping.. That too is back. She has sleep issues that are worse again and hoards. Some other ocd issues. From a young age she would line up dolls on floor I used to think it was cute but it's ocd she hasn't done it in a while but started again. Her hands have eczema probably from washing every time she goes to bathroom. And this child can whine and cry over nothing for endless hours. I'm sure I forgot something. About not being able to swallow... She says she can't swallow her tiny melatonin pill without applesauce because shes afraid of choking, it brings here alot of anxiety even though she has swallowed a larger pill in the past. She has a routine of saying goodnight and to leave in morning. She will not go to anyones house to play if I don't go.

Lol, I have no words of wisdom but I hear you. I had a family member tell me I should check out celiac disease just because my son eats alot of pasta. Well, that's what most picky eaters like to eat. And, she told me to look into it just because her friend used to work in pharmaceuticals... What the Heck this is my children all I do is research day and night. People need to not offer advice!!

Hi Ea mom, she hasn't always been Like this, none of my children are great eaters but if there was something she really liked she would eat well and now even dinner which was her favorite meal is barely touched. I think she is too young so I don't see evidence yet of distorted body image. She does complain of stomach hurting but i think related to anxiety. We did give her vsncomycin a while back. I don't know about falling off the charts because nothing was discussed with pediatrician. The ped we have seen hasn't seen her from infancy and I'm not crazy about any pediatrician. Since all kids have scripts for antibiotic I don't really see a point going to them.

Thank you Wendy I think he wants to focus on one child at a time but I will mention it to him since we did igenex on both children. Ty, Tami

Thank you for those suggestions... She does love fruit and shakes... Not a bad idea adding protein powder what kind do u use. I heard kefir mentioned on this board what exactly its it.

Thank you for all that info... From that description it dosent sound like she has babesia. I will discuss with dr. But first appointment is for my son. I was thinking that she needs to go to hospital for iv since she barely eats. I'm glad your children are doing better. My daughter used to be a good eater she liked eating adult food. She mostly liked dinners. It's never ending!

Thank you Tracie, We have been to Dr. B and had Ivig 2x and she is on antibiotics. Her eating has declined enormously. I am worried that she tasks so much medicine and barely eats. How is your daughter now?

Thank you Tracie, We have been to Dr. B and had Ivig 2x and she is on antibiotics. Her eating has declined enormously. I am worried that she tasks so much medicine and barely eats. How is your daughter now?

Hi! My daughter will be 8 in 3 months and she only weighs 40 pounds. She barely eats a thing. She goes to school with out eating. Sometimes I can get a bite or two in her mouth, today it was one bite and her whining she's not hungry. Then, when she comes home from school I see that she hasn't eaten her lunch. We haven't been officially diagnosed but she is so thin and it is like a chore for her to eat. Any suggestions on what to do? what have your doctors said for those of u with official diagnosis?

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.

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.

Hi I did a search and can't seem to find what I'm looking for. Has anyone found that their child is unable to get their thoughts to their mouth. My daughter has alot to say and sometimes I feel like she's from another country. She is unable to express her thoughts in a way where I can understand her point. My son who is the same age and also has pandas laughs at her because he is very bright. I'm trying to find out how I can explain this issue to the school. What can they look for to test because they aren't seeing what I am. Thank you, Tami

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.

No not as of yet... We are still in appeal. My children also have no or low antibodies to most of the serotypes.

Tami, At Universal, she asked what's the disability? and I started to say autism, .... just so I wouldn't have to go into the Pandas explanation. Before I could complete my sentence she handed me the pass. very simple. You could even say ADHD or sensory disorder if it's easier to avoid long explanations. Disney, I just started saying my son has a disability...and they nodded and gave me the pass. they could see I had a letter in my hand, though. So maybe that helped. darlene thank you darlene

Thank you!

I'm so sorry, it is a very difficult situation and unfortunately those not living this nightmare really and truly don't understand. I too blame myself but deep down I know its not my fault nor is it yours. I feel horrible that I don't set up play days for my children, but it is impossible. They don't want to go anywhere without me and I can't have people come to me because they don't act good. Its very hard but u need to realize it is an illness and they can't help themselves. My sons ocd is off the walls. It drivers me crazy because he makes me a part of it. I know he can't help himself but then I wonder why dosent he do it to my husband, why just me. Well... We are the ones they feel most comfortable with, the ones where they can feel true to themselves... How lucky we are lol. I'm sorry I know in this case misery loves company doesn't help. It does not make me gel better to know others are going through ######. Stay strong!

I absolutely agree with you and feel your emotions from your past. Did you have a bad day? everyday seems bad with what we mothers and some fathers have to deal with; but was there something else that made you vent today? I'm sorry for your frustrations and hope it gets only better for your family!

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

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?

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.

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?

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.

Hi Darlene, We plan on going in April, G-d help us, help me cause things are pretty bad now.What did you tell them. How much details do you need to give? Thanks, Tami