Lyme after PEX for PANDAS

[RNmom]

I posted this response (below) somewhere else today while responding to a valuable thread about Dr. Cunningham. Some days I flip back and forth between the PANDAS and Lyme forums so fast that I lose track of where I am! Both forums have been invaluable to me for support and guidance with my son's clinical situation. I feel a bond with the PANDAS forum that safely guided us to expert medical help when our son's illness escalated to a catastrophic level back in January, 2010. Were it not for the various treatments that we applied under the PANDAS diagnosis, I think my ds14 would have been in and out of several psychiatric wards by now. The Lyme forum popped up at just the right time for us. It knew nothing about Lyme before we received our son's diagnosis at the end of October, 2010. That said, I would never want to upset someone on either forum with my story. I did not plan this, but it seems that we have fallen into the mysterious overlap between PANDAS and Lyme. To be honest, my main motive for sharing on the forums is a desire to fight the peculiar isolation that comes from dealing with such a poorly understood illness. My son's clinical picture is so much bigger than me...

 

So, the copy below is my best attempt at an update. If it helps someone else that will be wonderful - but I do understand that it will not apply to most folks. I do believe the great majority of cases on the PANDAS forum are "PANDAS only." When I share my story I am not wanting to challenge the hard won success of parents who have been able to obtain the diagnosis of PANDAS and are benefiting from treatment (or even just struggling with it). Nor do I want to intrude upon the Lyme community with lots of burdensome PANDAS info. My story is cluttered with neuro-psychiatric symptoms that have responded partly to PANDAS treatments and which lead us further down the path to a Lyme (and coinfection) diagnosis.

 

Here is what I posted earlier:

 

START ***** I missed this discussion just before the Christmas holiday as we were up to our necks in neuro-psych symptoms with ds14 at that time. I am just grateful we managed to get a tree decorated and that my very sick ds14 was able to enjoy the holiday. I am, by far, all too new to both PANDAS and Lyme to do anything but share our experience as we move forward. (And, I pray daily that we are moving forward...) Our son is very, very ill. I would say briefly that, in the course of finding underlying causes for his symptoms, we were not thinking about Lyme (after PEX for PANDAS) Instead, we "tripped over it" in the course of evaluating positive Candida and mycoplasma titers. Even as I write about it, I still experience that sick sinking feeling over finding ourselves in "Lyme territory."

 

Why a sick feeling? Because of all the uncertainty and controversy littering the path to treatment. I just want my very sick son to be well. I am an old critical care nurse. I like things clear and I like things to be effective - STAT! PANDAS took me out of my comfort zone - but I went there for my son. Now Lyme takes me really far afield from the precise, evidence based world of critical care nursing that I loved. It tears my guts out to rely on a clinical diagnosis in the context of equivocal IgM and positive IgG findings for Lyme that mean different things to different physicians. Or, to use the interpretation of the size and morphology of a rash (that simply looked like stretch marks from a growth spurt to me) as the foundation for a very aggressive, long term course of antibiotics. Yet, as we move forward through this treatment (and talk with my son's clinician, and read about Lyme and coinfections, and watch my son's clinical response) the more my confidence slowly builds. Always, however, I carry the recognition that this is a process. It is just so damn painful to watch.

 

[b]No one should ever take my posts as dogmatic - or even applicable. They really are stories about persistence in the pursuit of comprehensive treatment. I will share that I think of my son's illness as "neuro-psychiatric." I think he has been a "poster child" for PANDAS since January, 2010. Thank goodness for all the PANDAS treatments we were able to implement - they have helped tremendously. Thank goodness also for the Lyme and Babesia treatment - I believe I see further improvement. For my ds14, I think the situation about PANDAS and Lyme is a "both/and" rather than an "either/or" situation.

 

Let's all hope for effective treatments in the New Year! [/u][/b]**** END

 

Someone asked me earlier today to explain how we "tripped over the Lyme diagnosis." Actually, it started on the PANDAS forum with education about the importance of controlling yeast while on long term antibiotics. There, I also learned about mycoplasma, EB virus, and some other things that contribute to PANDAS flare ups. I acted on this information and had my son's immunologist order blood tests to screen for these problems. We found a high Candida titer and a high mycoplasma IgG titer. The immunologist said that he did not know how to treat these lab results. So, we looked for a doctor who practices integrative medicine. That doctor happened to be a LLMD. He also happened to have a PA who was a DAN practitioner, a naturopath, and had experience with PANDAS and Lyme. When we heard about her experience with PANDAS we felt she might be a good fit for our son. It was his low CD57 count (that we had also found thanks to the help from the PANDAS forum) that raised a red flag for this PA about the possibility of Lyme. ... The rest is history. We immediately dug into treatment of the EB with Valtrex. We also addressed the yeast with Diflucan and the GF/CF diet. Within weeks we also had a Lyme diagnosis. Then things got really intense! Thank goodness this Lyme forum was up and running at that time!

 

I have since consulted with another LLMD (just to be sure) and had both the Igenex and My Lyme ID tests done on my ds14 and myself. My dh and non-PANDAS ds21 were both tested later with only the My Lyme ID (due to cost considerations and the fact that we were comfortable with the My Lyme ID by then). The bottom line is that we are all positive for Lyme. The results for ds21's test has a handwritten note by the head of the lab stating that he had viewed the Lyme spirochetes in the blood sample under a microscope himself (per their protocol for exceptionally high results). That is Lyme without a doubt!

 

In addition to Lyme, my ds14 and I have coinfections. We are both being treated for Babesia. After several months of this we will both start on a Bartonella protocol. After starting the Mepron for Babesia, just before Christmas, my son's anxiety which was "off the charts" came down to manageable levels - but it is still intense. Also, a terrible "noise in his ears" stopped within 48 hours of starting Mepron. His Herx reactions have been intense however. So have been mine! The early hours after midnight bring on pain and low grade fevers for me. The afternoon is filled with terribly cloudy thinking. Our clinician tells us that is due to the Babesia "die off"...

 

There will be more posts as we progress. I sincerely hope that I post about progress - but whether it is good or bad I will share our story. Selfishly it helps me. I hope I am able to write in a manner that is helpful, rather than hurtful, to others. God Bless

Edited January 11, 2011 by RNmom

[Fixit]

I posted this response (below) somewhere else today while responding to a valuable thread about Dr. Cunningham. Some days I flip back and forth between the PANDAS and Lyme forums so fast that I lose track of where I am! Both forums have been invaluable to me for support and guidance with my son's clinical situation. I feel a bond with the PANDAS forum that safely guided us to expert medical help when our son's illness escalated to a catastrophic level back in January, 2010. Were it not for the various treatments that we applied under the PANDAS diagnosis, I think my ds14 would have been in and out of several psychiatric wards by now. The Lyme forum popped up at just the right time for us. It knew nothing about Lyme before we received our son's diagnosis at the end of October, 2010. That said, I would never want to upset someone on either forum with my story. I did not plan this, but it seems that we have fallen into the mysterious overlap between PANDAS and Lyme. To be honest, my main motive for sharing on the forums is a desire to fight the peculiar isolation that comes from dealing with such a poorly understood illness. My son's clinical picture is so much bigger than me...

 

So, the copy below is my best attempt at an update. If it helps someone else that will be wonderful - but I do understand that it will not apply to most folks. I do believe the great majority of cases on the PANDAS forum are "PANDAS only." When I share my story I am not wanting to challenge the hard won success of parents who have been able to obtain the diagnosis of PANDAS and are benefiting from treatment (or even just struggling with it). Nor do I want to intrude upon the Lyme community with lots of burdensome PANDAS info. My story is cluttered with neuro-psychiatric symptoms that have responded partly to PANDAS treatments and which lead us further down the path to a Lyme (and coinfection) diagnosis.

 

Here is what I posted earlier:

 

START ***** I missed this discussion just before the Christmas holiday as we were up to our necks in neuro-psych symptoms with ds14 at that time. I am just grateful we managed to get a tree decorated and that my very sick ds14 was able to enjoy the holiday. I am, by far, all too new to both PANDAS and Lyme to do anything but share our experience as we move forward. (And, I pray daily that we are moving forward...) Our son is very, very ill. I would say briefly that, in the course of finding underlying causes for his symptoms, we were not thinking about Lyme (after PEX for PANDAS) Instead, we "tripped over it" in the course of evaluating positive Candida and mycoplasma titers. Even as I write about it, I still experience that sick sinking feeling over finding ourselves in "Lyme territory."

 

Why a sick feeling? Because of all the uncertainty and controversy littering the path to treatment. I just want my very sick son to be well. I am an old critical care nurse. I like things clear and I like things to be effective - STAT! PANDAS took me out of my comfort zone - but I went there for my son. Now Lyme takes me really far afield from the precise, evidence based world of critical care nursing that I loved. It tears my guts out to rely on a clinical diagnosis in the context of equivocal IgM and positive IgG findings for Lyme that mean different things to different physicians. Or, to use the interpretation of the size and morphology of a rash (that simply looked like stretch marks from a growth spurt to me) as the foundation for a very aggressive, long term course of antibiotics. Yet, as we move forward through this treatment (and talk with my son's clinician, and read about Lyme and coinfections, and watch my son's clinical response) the more my confidence slowly builds. Always, however, I carry the recognition that this is a process. It is just so damn painful to watch.

 

[b]No one should ever take my posts as dogmatic - or even applicable. They really are stories about persistence in the pursuit of comprehensive treatment. I will share that I think of my son's illness as "neuro-psychiatric." I think he has been a "poster child" for PANDAS since January, 2010. Thank goodness for all the PANDAS treatments we were able to implement - they have helped tremendously. Thank goodness also for the Lyme and Babesia treatment - I believe I see further improvement. For my ds14, I think the situation about PANDAS and Lyme is a "both/and" rather than an "either/or" situation.

 

Let's all hope for effective treatments in the New Year! [/u][/b]**** END

 

Someone asked me earlier today to explain how we "tripped over the Lyme diagnosis." Actually, it started on the PANDAS forum with education about the importance of controlling yeast while on long term antibiotics. There, I also learned about mycoplasma, EB virus, and some other things that contribute to PANDAS flare ups. I acted on this information and had my son's immunologist order blood tests to screen for these problems. We found a high Candida titer and a high mycoplasma IgG titer. The immunologist said that he did not know how to treat these lab results. So, we looked for a doctor who practices integrative medicine. That doctor happened to be a LLMD. He also happened to have a PA who was a DAN practitioner, a naturopath, and had experience with PANDAS and Lyme. When we heard about her experience with PANDAS we felt she might be a good fit for our son. It was his low CD57 count (that we had also found thanks to the help from the PANDAS forum) that raised a red flag for this PA about the possibility of Lyme. ... The rest is history. We immediately dug into treatment of the EB with Valtrex. We also addressed the yeast with Diflucan and the GF/CF diet. Within weeks we also had a Lyme diagnosis. Then things got really intense! Thank goodness this Lyme forum was up and running at that time!

 

I have since consulted with another LLMD (just to be sure) and had both the Igenex and My Lyme ID tests done on my ds14 and myself. My dh and non-PANDAS ds21 were both tested later with only the My Lyme ID (due to cost considerations and the fact that we were comfortable with the My Lyme ID by then). The bottom line is that we are all positive for Lyme. The results for ds21's test has a handwritten note by the head of the lab stating that he had viewed the Lyme spirochetes in the blood sample under a microscope himself (per their protocol for exceptionally high results). That is Lyme without a doubt!

 

In addition to Lyme, my ds14 and I have coinfections. We are both being treated for Babesia. After several months of this we will both start on a Bartonella protocol. After starting the Mepron for Babesia, just before Christmas, my son's anxiety which was "off the charts" came down to manageable levels - but it is still intense. Also, a terrible "noise in his ears" stopped within 48 hours of starting Mepron. His Herx reactions have been intense however. So have been mine! The early hours after midnight bring on pain and low grade fevers for me. The afternoon is filled with terribly cloudy thinking. Our clinician tells us that is due to the Babesia "die off"...

 

There will be more posts as we progress. I sincerely hope that I post about progress - but whether it is good or bad I will share our story. Selfishly it helps me. I hope I am able to write in a manner that is helpful, rather than hurtful, to others. God Bless

 

Thanks RN..that does help..and i understand just writing it to get it out of your head...

i am too busy now..but would like pump you for info on My Lyme id

thanks

[lismom]

You and your son are inspirations of strength. Overwhelming at times with abx, info, and symptoms, you have a plan and will no doubt succeed. Thanks for sharing your story. I read for info but also for encouragement. Is the LLMD your working with east coast? still trying to gather names for appt. Kathy

[RNmom]

Thank you both! I did feel a lot better after writing things out

Fixit, re: the "My Lyme ID" I will be happy to share what I have learned so far - pm me if that is easier.

lismom, we are on the east coast in the D.C. area. Lots of good LLMD's here thankfully. I am happy to share who we use. If it would help, just pm me.