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Desperately looking for help.....


Twomeymk4
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I am a little confused about your "LLMD". You say he is afraid about "getting into trouble". From my experience, this does not sound like a typical LLMD. Most true LLMD's have a good grasp of what testing needs to be done and is able to put the results together with the clinical picture and come up with a diagnositc plan. "Getting into trouble" isn't their focus. They have their own set of guidelines from ILAIDS and are experienced in diagnosis by clinical presentation. Perhaps you should consider another LLMD.

 

I would definitely suggest more testing. Also, don't worry that you have never had a positive strep swab. With titers that high you can feel sure that there is strep somewhere. Did they ever swab his sinuses? There are many places where strep can be that physicians do not place a swab. A PANDAS specialist would know this. You desperately need an GOOD LLMD or a PANS specialist. Your son needs long term antibiotics, potentially combination antibiotics and the sooner the better. You do not want to put this off. Time is the enemy here. Stay strong and determined. You can and will get your son back if you act quickly and definitively. You are on the right track already. Keep up the good work.

 

Dedee

Edited by Dedee
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  • 2 weeks later...

It took 6 weeks of antibiotics to clear my ds of the strep infection that caused his first Pandas attack. I would suggest that you have his titers checked again, and if still elevated, put back on antibiotic until titers normal. If this is Pandas, he wont get remission of symptoms until infection out of his system. The fact that he regressed after off of antibiotics to me is indicative of something. Have you put him back on the antibiotics? Sounds like Pandas alright.

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Sounds very familiar. My son had titers of 1800 and many of the symptoms you have stated above at age 8. . We saw Latimer in 2009. She recommended plasmaphoresis due to his extreme presentation and the high titers. We were back to baseline after 5 days of plasmaphoresis and I thought we left cured. Four months later he relapsed (not as severe) after a flu shot, and ultimately needed some IVIG to retrain his immune system. We too, had not had a positive strep test since 2006. For us it was clearly autoimmune.

Both azithromycin and steroids worked for us to buy some time until we could get the IVIG. They did not fix things, but allowed him to get back in school. They were a band aid for him.

He is 12 1/2 now and doing phenomenal. He had no current issues, and has not had any for years. See Latimer. She saved us.

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In not really sure that steroids are actually diagnostic but they do work to calm down an over active immune system and reduce inflammation in the body. Rowing mom makes an retesting point about shutting down the immune system if there is a bacterial infection at work. Just a thought, but im thinking a CBC would show elevated white blood cell counts if there were an infection. In any case, I think a round of steroids is not something to go into lightly.

*a CBC test will not show elevated white blood cell counts with Lyme, co-infections, strep-

our CBC's always come out 'perfect', have been drawn often, and we have positive infection tests at the same time.

The steroids do shut down the immune system, and bacterial and fungal infections can flourish as a result.

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In not really sure that steroids are actually diagnostic but they do work to calm down an over active immune system and reduce inflammation in the body. Rowing mom makes an retesting point about shutting down the immune system if there is a bacterial infection at work. Just a thought, but im thinking a CBC would show elevated white blood cell counts if there were an infection. In any case, I think a round of steroids is not something to go into lightly.

*a CBC test will not show elevated white blood cell counts with Lyme, co-infections, strep-

our CBC's always come out 'perfect', have been drawn often, and we have positive infection tests at the same time.

The steroids do shut down the immune system, and bacterial and fungal infections can flourish as a result.

 

DD's CBCs have always been normal as well.

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  • 2 weeks later...

I am a little confused about your "LLMD". You say he is afraid about "getting into trouble". From my experience, this does not sound like a typical LLMD. Most true LLMD's have a good grasp of what testing needs to be done and is able to put the results together with the clinical picture and come up with a diagnositc plan. "Getting into trouble" isn't their focus. They have their own set of guidelines from ILAIDS and are experienced in diagnosis by clinical presentation. Perhaps you should consider another LLMD.

 

I would definitely suggest more testing. Also, don't worry that you have never had a positive strep swab. With titers that high you can feel sure that there is strep somewhere. Did they ever swab his sinuses? There are many places where strep can be that physicians do not place a swab. A PANDAS specialist would know this. You desperately need an GOOD LLMD or a PANS specialist. Your son needs long term antibiotics, potentially combination antibiotics and the sooner the better. You do not want to put this off. Time is the enemy here. Stay strong and determined. You can and will get your son back if you act quickly and definitively. You are on the right track already. Keep up the good work.

 

Dedee

Dedee, Thanks so much for the response. I do agree 100% that a good LLMD's focus would not be "getting into trouble". I think in this case she was not taking new patients, only sees adults at the time, and was wary that my son's pediatrician had been named to the Loudoun Lyme Board as the "reality check", she didn't want to ask for trouble. I understand that, he was not her patient. I was. She was just helping me out, by looking at his blood work. She encouraged me to go to Dr. B in CT right away, I had no idea at the time our situation could get any worse. How wrong was I??

Hoping our appointment with Dr. L will bring answers and hope. If it doesn't, I don't know what I am going to do...feel like I've put all my eggs in this basket!

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I'm so sorry this has happened to your son. I remember the unbelievable pain and fear of watching my son turn into a different person over night.

 

Reading back over your original post, what struck me was the joint pain that resolved with abx. This is not a symptom of PANDAS. Between that, the PANS (psychiatric) symptoms, your Lyme diagnosis, your neurotic dog who's had (has?) Lyme, and where you live, I think you need to RUN, not walk, to a reputable LLMD who treats children and has experience with PANS. Dr. B will look at Lyme testing, but he is not an expert. Dr. L doesn't even consider Lyme that I know of. Many of us treated for PANDAS for a long time before figuring out that Lyme, coinfections such as Bartonella and Babesia, mycoplasma, chronic viruses and other factors were all interacting to make our children sick and mentally ill.

 

If I were in your shoes, knowing what I now know, that is what I would do first.

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I'm so sorry this has happened to your son. I remember the unbelievable pain and fear of watching my son turn into a different person over night.

 

Reading back over your original post, what struck me was the joint pain that resolved with abx. This is not a symptom of PANDAS. Between that, the PANS (psychiatric) symptoms, your Lyme diagnosis, your neurotic dog who's had (has?) Lyme, and where you live, I think you need to RUN, not walk, to a reputable LLMD who treats children and has experience with PANS. Dr. B will look at Lyme testing, but he is not an expert. Dr. L doesn't even consider Lyme that I know of. Many of us treated for PANDAS for a long time before figuring out that Lyme, coinfections such as Bartonella and Babesia, mycoplasma, chronic viruses and other factors were all interacting to make our children sick and mentally ill.

 

If I were in your shoes, knowing what I now know, that is what I would do first.

 

I agree with mama2alex completely!

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I'm so sorry this has happened to your son. I remember the unbelievable pain and fear of watching my son turn into a different person over night.

 

Reading back over your original post, what struck me was the joint pain that resolved with abx. This is not a symptom of PANDAS. Between that, the PANS (psychiatric) symptoms, your Lyme diagnosis, your neurotic dog who's had (has?) Lyme, and where you live, I think you need to RUN, not walk, to a reputable LLMD who treats children and has experience with PANS. Dr. B will look at Lyme testing, but he is not an expert. Dr. L doesn't even consider Lyme that I know of. Many of us treated for PANDAS for a long time before figuring out that Lyme, coinfections such as Bartonella and Babesia, mycoplasma, chronic viruses and other factors were all interacting to make our children sick and mentally ill.

 

If I were in your shoes, knowing what I now know, that is what I would do first.

Thanks all! We met with Dr. L yesterday and came away feeling so much better. I will write more about that when I have a few minutes, but yes, she doesn't seem to be a big Lyme "supporter" for lack of a better work. I think that she definitely believes it exists, but perhaps, that it's not as prevalent or bad as many others think...just my impression. That being said, are any of you willing to PM me with the name of some NoVa or DC pediatric LLMD? I'd love to get an Ignex test and see what his bands are now. Also love to see their thoughts on if his Lyme has truly "gone away".

 

We liked Dr. L very much. Finally a relief to walk out of somewhere, feeling like someone listened to you and didn't want you to lock your child up or prescribe mind altering drugs. She was really good with him, and even he said this morning, he can't stop smiling remembering what she said.

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