[Lyme after PEX for PANDAS]

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

[IgeneX Question]

Re: **** Cunningham talks about cross reactivity here. If in fact strep and lyme do cross react as implied above, I wonder if the strep antibodies that PANDAS kids have are making IgeneX tests come back positive when in reality they are not. Did your children have psychical symptoms of lyme? From what doctors have told me, IgM antibodies are the first line of attack and then the IgG antibodies are what actually kills the bacteria. Therefore, if an infection truly existed, both should present. ****

 

The simple explanation I got was that the difference between IgM and IgG has to do with differences in the amount of time it takes for these immunoglobulins to mobilize in response to antigens . They are part of a cascade of @ 5 different Ig immunoglobulins. For example, IgE type immunoglobulins are "immediate responders." They are the antibodies involved in anaphylaxis (i.e.: latex allergy, peanut allergy, bee stings ... you get the idea). IgM reflect new infections. IgG reflect older infections. I am oversimplifying things but that is the rule of thumb which I am using to understand things. (BTW, I am often told that folks who work with Lyme think of "new" as something less than 12 weeks -plus or minus a few.)

 

The Ig cascade is very complicated. I learned a long time ago to have great respect for all that we do not understand about it. It saddens me to see folks caught up in a struggle with an aspect of medicine that confuses most doctors. I have a cousin with IgE hypersensitivity and eosinophilia. Her physician once told me that 50 years ago she would have not survived. Medicine has advanced to where it can help her now - but she is by no means under control or cured.

 

It may be possible that in the next year or two more docs will better understand and trust the "My Lyme ID" test. It measures the cytokins rather than the antibodies and gets around many of the questions about 'the # of bands and/ or the meanings of IgM and IgG.' We had both Igenex and "My Lyme ID" done for my ds14.

 

Per Igenex ds14 is IgM negative but IgG positive.

He has one equivocal IgM band: #41

He has two clearly positive IgG bands: #31 and #41.

He has neuro-psychiatric symptoms.

Two LLMD's and one PANDAS doc have all called this neuro-psychiatric Lyme.

BUT, none of the three have been willing to say that ds14 doesn't have PANDAS now that we are dealing with Lyme.

Instead, the PANDAS doc talked about how neuro-psychiatric Lyme can also look like PANDAS. That doctor also went on to say that the PANDAS name will most likely be changed. (There were many layers of meaning in that last statement but we did not have time to discuss it properly - although I wish we could have!)

 

I am hopeful that the medical community is exponentially growing in it's understanding of our complicated kids.

 

The My Lyme ID Test showed three high equivocal bands and lots of very high cytokine levels. After getting to know my two LLMD's well I made the decision (for many reasons) to go with the LLMD who happens to rely on the My Lyme ID test to track treatment response. You can watch the cytokine levels go down over time if you are treating properly and successfully.

 

Lyme is not the whole story with my ds14 however. Coinfections are a huge part of the problem. I think it was SF mom who talks about cytokine responses?? I think that is where the overlap is in my son's clinical picture. For him the clinical picture seems to be all about neuro-psychiatric symptoms driven by inflammatory responses both infectious and autoimmune. Getting that all sorted out is going to take a long time and a lot of trial and error.

 

I feel attached to the PANDAS forum where I started out. I do not want to leave it. We would be in bad shape were it not for all the information about PANDAS symptoms and treatments that I learned on the PANDAS forum. however, I also really like the Lyme forum for great explanations of "all things Lyme." I need both and hope I can go back and forth without upsetting anyone. My posts are never meant to be dogmatic. I am just sharing my story ... It relieves that unique sense of fear that only isolation in a storm can stir up!

[Some notes from Cunningham]

I missed this discussion just beofre 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 woud say briefly that in the course of findng underlying causes for his symptoms we were not thinking about Lyme (after PEX for PANDAS) until we "tripped over it" in the course of evaluating a positive Candida and mycoplasma titer. 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 of 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 the interpretation of the shape 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.

 

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!

[Positive Update]

This is really encouraging to me as we are treating Lyme and PANDAS as well. Our ds14 has been on Lyme meds since the first of November, 2010... maybe our son will be feeling and acting better in a few more months too! Thank you and congratulations on your progress.

[Does Cunningham test apply to PITAND?]

This is interesting. We just saw our son's PANDAS doctor yesterday. He had plasmapheresis last summer for a severe case of PANDAS. He got @ 65% better. We investigated further to see what - in addition to strep - might be undermining his recovery. We found that he had Lyme! In fact, it looks like he has had it for a couple of years undiagnosed. He also has a Bartonella rash and clinical symptoms of Babesia. His PANDAS doctor is calling this neuro-psychiatric Lyme. She said the kids that get this are the hardest to treat - but they are treatable. She also said that neuro-psychiatric Lyme has many of the same symptoms as PANDAS. In the context of this conversation, we discussed the Cunningham labs as our son's CAM K and antineuronal antibodies were all elevated back in Feb, 2010 when he was diagnosed with PANDAS. She said, Dr. Cunningham has stated that these labs do elevate with Lyme as well as with strep. Additionally, I believe that Dr. Cunningham presented on her research at one of the big Lyme conferences in the fall of 2010.

 

Here is what I took away from that conversation:

The Cunningham labs are immune markers which measure an autoimmune response that targets the brain and nervous system. As time goes on, Dr. Cunningham and others are building on her ground breaking research and finding that these labs are reliable markers of immune assault on specific neurotransmitters and neuroreceptors in the brain. I think it will be many, many years before any of us really appreciates the scope and applicability of this research. I hope that in the future other antineuronal antibodies can be studied. I do think Dr. Cunningham based her initial studies on the NIH findings and used their narrow study criterion because that is how research is done. In the broader clinical setting it is becoming clearer that the Cam K and four antineuronal antibodies, which comprise what we call "The Cunningham Labs," are valid and reliable markers for kids with a particular cluster of neuro-psychiatric symptoms. This is very helpful in proving that biological or medical factors are in fact generating these neuro-psychiatric symptoms as opposed to "bad parenting" or purely psychiatric causes. The treatment implications of this are very important. Today we call that cluster of neuro-psychiatric symptoms PANDAS / PITAND. In the future it may be renamed to something else.

 

I hesitate to make this last statement as discussion of a possible new name for PANDAS is understandably very upsetting to some folks. It is hard enough for a parent to make a determination that their child has this illness, harder still to find a good physician who is knowledgeable about it and willing treat it. The name PANDAS becomes a familiar shorthand for parents as they accrue information and engage in helpful discussion in order to understand what their kids need. Unfortunately, in the scientific community PANDAS is a trip wire that sets off controversy. There may be some very good medical reasons for eventually changing the name to reflect the growing understanding that not only strep but also other immune insults can trigger the cluster of neuro-psyhiatric symptoms that we now refer to as PANDAS.

I truly think that discussion of the cluster of neuro-psychiatric symptoms we call PANDAS should not be a black and white "either / or" discussion. It is playing out as something way more complicated for some kids. For myself, I grieve for my ds14. I also feel a particular sense of pain for parents who are trying to deal with this complex illness without the aid of a physician that is willing and able to treat it. That is one reason I post our son's clinical course whenever I can. I have great admiration particularly for the parents who are resourceful enough to use alternative supplements and any bit of internet information that they feel is safe while they struggle to find their way to treating physicians. I am sure that is why other parents post as well.

 

For our own situation I am not as concerned with what we call our son's illness as how we treat it. All my best to all the awesome parents on this forum!

[Zithromax and its immune modulating effect]

I could only read the abstract so this response is limited. I do know that one PANDAS doc we consulted with believed that strep pneumonia is the MAJOR culprit in PANDAS. He treats PANDAS with an aggressive course of Bicillin shots to specifically address the strep pneumonia organism which can "hide out" in the nasal and sinus cavities.

 

Many parents I talk with, who have their PANDAS kids on Zithromax, will also combine it with Augmentin XR or Bicillin shots weekly or bi-weekly. They came about this combination through trial and error. My first reaction to your post was, "Maybe that is why so many of us have had "breakthrough strep" and increased PANDAS symptoms when our kids have been on Zith alone.

 

Now - sorry to make this more complicated but - many of the same parents have found that they get "breakthrough strep" etc. on Augmentin alone. I think the take home message might be that a combination of antibiotics can work well for many kids with PANDAS.

 

Also, in many of these cases the child has PANDAS and Lyme - so Zithromax was necessary as part of the Lyme protocol (as it seems to be the case with your child). That would be our case as well. We have our son on 3,000 mg Augmentin XR daily (he is 165 lbs) in addition to 600mg Zithromax daily, Mepron daily x 21 days alternating with Flagyl daily x 7 days, and 400 mg Doxycycline daily. Every time we try and decrease the Augmentin XR (thinking, "surely he is on enough antibiotic coverage") he has increased OCD!

 

It looks like an interesting article - I wish I could access all of it. Thank you for the post.

 

P.S. Check out Buster's excellent explanation of immune modulation (specifically using Zithromax as an example) over on the PANDAS forum under "What does immune modulating effect mean?" I read it just after I posted this.

[Lyme testing...false positives...31 epitopes neg., doc names]

Dr. Beal's/Debbie McCabe: They are a Dr. and nurse team that work together. Debbie handles all Pandas/Lyme pediatrics while Dr. Beal's oversees things and treats adults. I understand Debbie is versed in both Pandas/Lyme and is currently helping many from the forum. Hopefully, a few individual's that are seeing her will either post or PM you.

 

They do test for all things. With your daughter results it would be prudent to test binding immune complexes, co-infections, provocation DNA testing for Lyme and viruses. They do not go overboard with herbal stuff... not even sure they recommend herbals.

 

-Wendy

 

I can validate this post as we see Debbie McCabe for Lyme and PANDAS. I sent you a PM as well

[Dx Lyme - after PEX for PANDAS]

Thanks SFmom and Meg's mom for the life cycle info. DS14 seems to have symptom flares in 2 week cycles. We know he has Bartonella (he has the rash) but have to wait until Babesia treatment is finished before addressing that. It is going to be a long 4 - 6 months!

 

Meg's mom, what kind of Herx might we expect 3 months into treating Babesia? (That sounds a little ominous... )

[switching to zith--afraid of herx?]

Hi Eljomom,

Please do not be frightened off by difficult treatment course such as the ones I am posting lately. If I had been able to identify my son's Lyme two years ago (we think he got it at summer camp) I am fairly certain the Lyme treatment course that he is going through now would be a lot simpler.

I do think that my ds14 has had PANDAS since early childhood. I think when he contracted Lyme (and we missed it) his body was no longer able to keep the PANDAS within manageable limits due to the added stress of the Lyme. (That is a longer discussion but we have always given him extra long courses of antibiotics for infections because we noticed he needed that to recover fully. He had neurologic tics that also went away after longer courses of antibiotics... that is a story for another time.) We got our ds14 treated by Dr. L for PANDAS which became catastrophic last January. He improved to @ 65% and then his recovery stalled. A month later we had a positive Lyme diagnosis. Treatment is harder because both Lyme and PANDAS went too long without adequate treatment - and reached a level of clinical severity that required aggressive therapies. Looking back, I think both PANDAS and Lyme symptoms would not have gotten so bad if we had been able to identify and treat the Lyme in its early stages. I hope this is helpful (I hope it makes sense)!

 

I wish you the best in your decision about how you go forward. At the end of the day we all learn to trust our own instincts.

 

Yes, the **83-93 was IND on one of them.

I am just weary of going the LLMD path and being "forced into" Lyme....it's heavy duty treatment, and I would want to be certain what we are dealing with. I know it's a "clinical diagnosis"- but what I don't understand it that the symptom list is so long, you could go in with anything and be called Lyme. My daughter has NO fatigue, aches, pains---JUST the mild ocd, major tics, hyper and sep. anx.

 

I agree with Wendy...it might be wise to seek another opinion from an LLMD. Also, check out this statement on the Igenex results: Presence of only one double starred band or INDETERMINATE double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks. The confirmatory 31kDa test doesn't address other bands.

 

Didn't you have a IND **83-93 band?

[Dx Lyme - after PEX for PANDAS]

There is hope Jodie. I tell myself that all the time. Prayers keep us going too. I think I just learned a big lesson from my son's recent Herx after the 5th Bicillin shot. I am not sure if I mentioned that he was four days into Mepron (for Babesia) when he had it. He had a beautiful response to the Mepron. He told us that he was feeling less anxious and his red rash (which is his "banner" of immune system overdrive) was light pink and much less dense. Also, this constant noise in his head "went away." I should have considered that he might be poised to Herx just from the Mepron sometime later in the week or next week. Having no useful experience with the Herx issue I gladly took him in for Bicillin #5 - thus generating too much die off at once. But, how else do we find out where the line is with our kids? That line will most likely continue to change throughout the course of treatment. I think sometimes we will go over the line and generate a bad Herx by accident. Hopefully if we are watching closely and thinking about the possibility all the time we will catch it early enough. I know I will be very thoughtful about this in the future.

 

Do you (or anyone else who might be reading this) know how many days are in the life cycle of Babesia? Do you anticipate Herx reactions according to the length of the life cycle of what you are treating? I would love to know.

 

Thanks for you encouragement and support Jodie. Hang in there - at least we are not alone! -- Michele in Virginia

[Dx Lyme - after PEX for PANDAS]

tpotter!

Wow! Thanks for responding - I have been wondering about you and your sons. You know it is strange. DS14 really needed the series of four shots four days apart just before Thanksgiving. His agitation, red rash, "wild eyed" look, mental fog, and paranoia all reduced gradually in correlation with the progression of the shots. However, aggressive yeast treatment (600 mg of Diflucan daily) threw off the benefits of that Bicillin series. After switching to Nyzoral 100mg daily for yeast things settled back down. We added in Zithromax and things got even better. ... then we had Bicillin shot #5 because I wanted to push for more improvement. Instead, it pushed his immune system too far, I think.

 

Now, I am waiting for this Herx to pass. We will go slower. LLMD#2 ordered the series of four Bicillin shots to pull ds14 back from the edge of a complete PANDAS relapse. It seems that was the right thing to do. LLMD#1 gave Bicillin shot #5 and said it would help with both PANDAS and Lyme to do this weekly or every other week. I think this experience is teaching us where to draw the line with ds14 - maybe later on Bicillin will be ok - although he might need some convincing then.

 

How is your younger son holding up? It sounds like you have slowed things down a bit and that has been helpful. How is your older son? I hope things continue to go well for your family. I know you have had a very long a difficult experience getting them help. Take Care!!

 

Yikes...Bicillin every 4 days? My son was herxing like crazy for 2 weeks after the 1 bicillin injection! He's on bicillin injection every MONTH for (I think) 3 months...maybe 4. Plus, Azith for PANDAS and MycoP, and he's supposed to have started flaggyl 1 week on/1 week off 2 weeks ago, but was begging me to let his body rest. I'll start the flaggyl over vacation (after we return from vacation.) He's also on diflucan for yeast, and takes sacchromyces boullardi and probiotics, plus takes bentonite clay (when I remember to give it in time). Oh...I almost forgot...we're also doing IVIG every 8 weeks (had #1 so far.)

 

Sounds like they are treating your son maybe too aggressively? Mine ended up with pancreatitis when doxy was added in. Be careful.

 

Personally, I'd rather slow things down a bit than throw it all at once (we're also treating all 4 of us in the family, so I don't think we couldhandle it any more aggressively.

 

Good luck.

[Dx Lyme - after PEX for PANDAS]

Hi sptcmom!

I am starting to agree that ds14 is being hit hard with an aggressive course of Lyme treatment. Just starting Doxycycline in the beginning of November created such a bad Herx that he almost fell back into full blown PANDAS. It has taken me this long to understand fully how that could happen. I think I am ready to go slower (and surely my ds14 is ready)!

 

I read your description of your own struggle to balance caring for your family with your own Lyme treatment with great interest. My heart goes out to you. I fear I will be in the same boat soon. My Igenex test will be back in a few weeks... Thank you for your feedback - it helps so much. I hope you start to feel better soon.

 

You sound like you're on the right track. Thats pretty heavyduty aggressive approach. DS had 2200mgs of ABX -augmentin, biaxin and zithro= really BAD herx so our LLMD #1 switched from zith to Bactrim. Pretty bad herx for about 6 weeks- head tics, OCD etc. Week 8 we decided got called for an appt to see LLMD#2 and decided to go. We were hoping to reduce the abx and add herbs and homeopathic. Found out that DS has sulphites in his urine and stopped Bactrim and added anti microbial herbs. We have about 30- 32 meds, herbs, vits and supplements to balance out each day.

I will followup with LLMD#1 simply because Im curious about cyst busters and for continued second opinion.

 

I found a good LLMD for myself and have started Zith with good results. The herxing has been secere flu like symptoms, exhaustion, mental confusion, being unable to express emotions, depression etc. That lasted 4 weeks with a couple good days thrown in. Now its slowly getting better with my mental clarity. Im still not getting enough rest/sleep since DS has so many sleep issues but on the days I do get enough rest (DH on DS sleep duty),I feel great and can think, find words, express myself.

I have many neurological symptoms, radiculopathies, disk herniations, sciatica- bilateral, degenerative arthritis and the bitter cold of the northeast only makes the pain and dysfunction ten times worse. So, like the rest of us, Im dealing, stretching, pain meds etc so I can be there for my son. Im very hopeful that in a couple of years the end will be in sight.

I wish the best of luck in all your endeavors. You have us for support/venting anytime you need.

Jodie

[Dx Lyme - after PEX for PANDAS]

Thanks SFmom! It is huge help to get this feedback right now. I will send you a pm.

 

He is on a lot of antibiotics and herxing is anticipated with the mix!!!!!!

 

You are right, you do need to treat the Babesia and it can be tough.... Our Dr. treats for a minimum of four months and then retests. If it is not gone, he treats for another 10 months. We are treating our younger son with Alinia/Azithro/Sulfamate (Sp?). He also has Bartonella and we will address it later on. Do you know which strain of Babesia? The Mepron will really help to get the bacterial load down and you should see marked improvement 'potentially' at the four month mark.

 

Since I am undergoing treatment myself, I can honestly say sometimes its too much. I was on 1,500 m.g. of Tindamax per day and it killed me with non-stop symptom management and splitting headaches that would not allow me to sleep. I spoke with our Dr. and they said lower to 1,000 m.g. per day and I am doing so much better and hitting a stripe with treatment. They have now changed up my protocol slightly to provoke for Bartonella, I just added herbs 4 days ago and I am already having they following symptoms: dizziness, chest discomfort, just not feeling well, feeling like I need a deep breath... and the fatigue set in a little today.

 

Anyway, the reason I mention the above is backing off might give him some reprieve in symptoms. Rather than add the bacillin shots or Abilify I'd focus on getting those toxins out from all the die-off. Are you using Bur Bur, activated charcoal or bentonite? Often children with multiple co-infections have high histamine levels as well and we use Benadryl and Ketotifen daily to get them down. It can take up to two weeks to see results... but I have a funny feeling you'd get better results from a nightly dosing of Benadryl than Abilify.

 

Wow, I think I know who LLMD #2 is based on protocol but wondering who LLMD #1 that is treating your son.

 

-Wendy

[Dr. Latimer in Bethesda, MD]

I agree, if you are not able to see Dr. Latimer then try Dr. Bouboulis in Connecticut. He will treat PANDAS and look for other infections that may be adding to the problem (ie: mycoplasma, EB virus, Lyme etc.) He is thorough and knowledgeable.

 

If you are not able to see Dr. Bouboulis then try Debbie McCabe at NIHA (National Integrated Health Association). She is a PA and naturalopath (sp?). She successfully treated her own child for PANDAS before the illness was even named or talked about in the medical community. She has also treated her whole family for Lyme. She "gets it." She follows a lot of Dr. L's patients and Dr. L says that Debbie is very thorough. Hang in there and good luck.

[Cytokine testing through Neuroscience....]

SFmom! How did I miss this when you posted it? Maybe it is just as well ... I am only now starting to understand how the yeast could complicate the prognosis. Backing off on treatment when the yeast makes things worse makes sense. I think that is kind of what we are doing right now (if you get a chance to look at my post "Dx Lyme - after PEX (update #4)" let me know what you think. Thank you!!!

 

RNMom: I was re-watching some of the DVDs from the ILADS conference yesterday and Dr. H talked about how the DIE-OFF from Lyme/co-infection causes a yeast response not just antibiotic use. So, my guess is you are contending with both antibiotic use and die-off at this time. They typically address the yeast but if it continues to be a problem they back off on treatment regimen.

 

Hope that helps a little.

 

 

 

Does anyone out there know what other spirochetal diseases might be at play here? Would yeast (Candida) be one of them? My ds has a big yeast problem that we are currently fighting with the help of the LLMD.

 

As always, I hope this is helpful...

[In ER right now! :(]

Hi browneyesmom,

I'm in Virginia too. I think you are a really smart mom to handle the ER situation so well. I hope your daughter is stable now and that the family is "recovering" too.

 

We take our ds14 (who came down with severe PANDAS last January) to Dr. L in Bethesda, Maryland. She is a great doctor for PANDAS. Also wanted to mention that it would be wise to get the Igenex test for Lyme. Dr. L will order that. Or, if you can find a LLMD before you see Dr. L, you could have Igenex results back by the time you saw Dr. L (it takes w while to get an appointment with her).

 

My DS14 ended up diagnosed with PANDAS and Lyme. He had every treatment Dr. L could give (including plasmapheresis) and his PANDAS got 65% better. But, the Lyme prevented a full recovery. Dr. L is on Beth Maloney's list. I wish your dd11 a full recovery very soon.

[How many of the moms have lyme?]

I refrained from posting on this a few weeks back b/c I was just going thru my downfall w/ Lyme. I have 2 PANDAS kids who never got much better over time or did improve somewhat for about 3 weeks and then by the 4th week symptoms appeared again. My previous issues of sudden gall bladder attack and removal, IBS, pituitary tumor diagnosis to explain my elevated prolactin level (but no tumor ever seen on MRI and was on Rx for 15 years to regulate menses--I'd be willing to bet the Lyme could have been the culprit), bi-lateral carpal tunnel and trigger finger release surgery and some other symptoms that I thought were just unlucky but maybe now all stemmed from Lyme. I know I'll never know for sure. But after my flu vaccine on Nov. 2nd of this year, I went down hill. Within a day or two I felt achey and tired but it seemed like that was from the vaccine...not a big deal. A week later, I had MAJOR bone and joint pain and cracking. I felt like I got run over by a truck--heaviness from shoulders to hands, carpal tunnel pain, electrical pulses from elbows to hands, ear pain upon waking, pain in bottom of my feet and brain fog which was bad b/c I'm trying to nurse 2 back to health. I was in denial b/c it was just extremely inconvenient! LLMD put me on Doxy and the herxing began. One disturbing symptom that appeared were nodules under my skin on my fingers. Dr. believes that's part of herxing. My western blot & C6 peptide were negative. My CD 57 came back at 38. The only other abnormal results are my Vit D=27, hemoblobin and hemocrit are a little elevated. Since being on Lyme tx, I've improved slowly. I felt non-functioning a few weeks ago and now I am back to doing most things but even just after volunteering in my DS's kindergarten class this AM, I needed to relax on the couch this afternoon. I used to be full of energy! I want that back! Thought I'd share on this post so we have a collective group of Lyme moms w/ Lyme kids. I credit all these moms who post before me to helping my family. So thanks and happy holidays!

 

Oh my gosh, kmom! Hang in there!! I can totally relate. I am waiting for my Igenex results (we also used the My Lyme ID which is also not back yet) but our LLMD is certain I have Lyme and co-infections... I feel so sick all the time but just keep pushing through it. I really related to your post - thank you!

P.S. My ds14 has PANDAS too and while treatment improved him 65% his progress "stalled" at that point. That was when I got suspicious "something else was going on." That was when we found out about the Lyme.

[Dx Lyme - after PEX for PANDAS]

I know some folks have been following my posts because they are considering Bicillin shots for their own children. I can say that the series of Bicillin shots every four days (for a total of four shots) really worked well to pull my ds14 back from the edge of a complete PANDAS relapse (which began after we started treating Lyme with Doxycycline in the beginning of November 2010). Anyone on the forum who has had personal experience with PANDAS will understand when I say that the "wild look in his eyes" went away after the first Bicillin shot. By the time ds14 had completed all four Bicillin shots he was functioning much better. We are grateful.

 

Before I go on I have to mention that we have two LLMD's helping us. This was not planned. However ds14 began his PANDAS relapse the week before Thanksgiving and we were not able to get a hold of either our PANDAS doc or the original treating LLMD. Fortunately, the 2nd LLMD in our own town treats both Lyme and PANDAS. So, LLMD #2 ordered the series of Bicillin shots. It was LLMD #1 who had started the Lyme treatment at the beginning of November 2010 with Doxycycline. The Doxy caused a big Herxheimer reaction and most likely set off the PANDAS relapse. What a mess!

 

Sadly, the Lyme, the co-infections, and the Candida problems are complicating the PANDAS recovery. LLMD #2 also increased our son's Diflucan dose six fold! He did this at the same time that he started the emergency Bicillin shots. So, by Thanksgiving Day while ds14 had more flexible conversation, improved cognitive functioning, and less OCD, he had also developed a tremor in his hand (more pronounced than the chorea which he had in the past with PANDAS) and he was acting paranoid... as if "people were hurting him!" I looked up Diflucan in the PDR and at very high doses some possible side effects were dizziness, tremors, and "feeling like people were hurting them." YIKES! I stopped the Diflucan and reported it to his LLMD after the holiday. The paranoia and tremor had stopped in @32 - 48 hours after we stopped the high dose Diflucan. The LLMD #2 switched ds14 to Nizoral as it has less of a central nervous system effect. I did have to endure a "lecture" (of sorts) from the LLMD about the "super yeast" that the high dose Diflucan was supposed to be killing. I am sure that the high dose Diflucan was getting to the "deeply embedded yeast" and perhaps my ds14 was having a huge Herxheimer reaction. However, I asked the LLMD #2 if we could try to treat yeast without driving my ds14 crazy. That has proven to be the crucial question in all that we do to treat Lyme, co-infections, and yeast.

 

So... I need help! Please!! I am without any experience with Lyme, co-infections, Herxheimer reactions, and the various treatment options ... not to mention yeast. Balancing these new concerns with a recovery from severe PANDAS is a nightmare.

 

DS14 has Bartonella and Babesia... The "triple threat" I am told. We have chosen to treat the Babesia first as I have learned that you cannot successfully treat Bartonella and Babesia together. According to our LLMD #1 the two different medicines undermine each other and result in ineffective treatment of both co-infections. This (in a word) stinks! So, we stared Mepron for Babesia last Monday. We are continuing to treat Lyme with Doxy and Azithromycin. We also cover ds14 for PANDAS with Augmentin XR. In 4 hours after the first dose of Mepron ds14 said, "I do feel a little better." He was refering to a decrease in the terrible anxiety that has been off the charts. In 24 hours the "constant noise in his head" stopped. This "noise" had begun over Thanksgiving and I was really beginning to fear that ds14 had a psychotic process going on. However, when questioned he was very consistent in localizing the "noise" inside his head - or more specifically in both ears. I had called his neurologist and asked for an MRI but did not get a response. Also, LLMD #2 (who had ordered the Bicillin series) simply said "call your doctor." The pediatrician said "call your neurologist." In other words, no one wanted to deal with it - most likely for different reasons. I was "out on a limb" and very frightened for my son. You can imagine my joy when the "noise stopped" after starting the Mepron.

 

I wish Lyme and coinfections could be treated faster. I hope we are on the right track. DS14 did have a 5th Bicillin shot this past Thursday (12/16/10). Four hours later his cheeks were red and by nightfall he was very anxious and had more OCD. PANDAS? Lyme Herx? Babesia Herx? Yeast flare up? Who knows! I am trying to remain calm and stay the course. We will not be doing anymore Bicillin shots for a while. LLMD#2 is ambivalent about the need and PANDAS doc does not feel they are strong enough for serious PANDAS treatment. LLMD#1 would like to continue Bicillin every week or two weeks. I would too - but ds14 cannot not take it. He is anxious over "having to have a painful shot in my butt" to the point that it interferes with his cooperation with the rest of the treatments.

 

So for now we are using:

 

Doxycycline, Azithromycin, Mepron, Nyzoral, and Augmentin XR. Also, medical grade probiotics (VSR #3 DS which has 900 Billion units of lactobacillus and, of course, lots of other supplements) I think we will be moving on to cyst busters such as Flagyl alternating with Tindamax in a few more weeks - I do not have the protocol in front of me. We are now working mostly with LLMD#1.

 

I am so grateful for this forum and the PANDAS forum. I'm learning from so many different people here. It is amazing to log on and read posts that confirm we are not the only family going through this... AND, I forgot to mention my ds21 also just got diagnosed with Lyme (caught early) and LLMD is pretty certain I have Lyme, Babesia, and Bartonella... My own Igenex and MY Lyme ID tests are due to be back in a week or two. No wonder I am tired!

 

Sorry to write so much - Thanks in advance to anyone who actually reads all of this!

[Dx Lyme - after PEX for PANDAS]

Actually I think this is post #3... To quickly summarize: My ds14 had catastrophic PANDAS January 2010, PEX last July 2010, and was diagnosed with Lyme disease and possible Bartonella in October 2010. This is my 3rd update to medical treatment with "double dose" Bicillin shots every 4 days for a PANDAS relapse that began one month after initiating Doxycycline and Diflucain for treatment of Lyme. (His LLMD says high dose Bicillin every 4 days x 4 is his "peferred treatment for PANDAS and also a pretty good treatment for Lyme as well.") DS14 had testing through My Lyme ID in October which showed three (high) equivocal bands for Lyme and lots of positive cytokine responses. We are now waiting for results from recent Igenex testing for further confirmation of Lyme and Bartonella (ds14 does have the Bartonella rash). He also has positive Candida, Mycoplasma, and EB titers (all IGg).

 

Today, ds14 came downstairs for breakfast asking, "When is my next shot?" He said "the shots" do not take everything away but they are helping him to deal with all of "it" better. ["It" and "everything" both refer to: intrusive thoughts that are graphic, frightening, and unfold endlessly against his will, brief bouts of rage that leave him feeling ashamed (this symptom is new this past month), OCD, involuntary movements and neurologic tics, terrible anxiety, visual disturbances, brain fog, cognitive changes, and difficulty concentrating and focusing on tasks, and difficulty falling asleep.]

 

Truthfully, although ds14 says he "feels better" (and I am so glad to hear that) he looks terrible! He is wiped out, the red rash is awful (but the neck is still not so bad), and he is really struggling to get through each day at school. Today, he dragged himself to school late - but he got there and stuck it out the whole day. I got several very kind e-mails from his teachers. I thank the Lord for a caring and supportive school. (Believe me I do realize how grateful I should be for that.)

 

Bicillin shot #4 will be tomorrow due to the holiday schedule. We will talk at greater length with his LLMD next week. We will also follow up with his PANDAS doctor (we do not want to get too far afield of her). I wanted to post this to give some hope to the folks reading who, for their own reasons, are interested in the possible benefits of Bicillin (particularly for a PANDAS / Lyme combination). Time will tell if this will be a helpful intervention for our ds14. Tonight it looks promising. He will still have a long way to go however.

 

One additional note. We, like everyone else on these forums, are attacking these illnesses with many layers of treatment. We added in another layer this afternoon with a nutritional consult for the Glutin free, casine free, yeast free diet that ds14 is now on. It was very helpful. Happy Thanksgiving everyone!

[Dx Lyme - after PEX for PANDAS]

Well ds14 is three days post Bicillin shot #2 and ready for shot #3 tomorrow. He is progressing in a "mixed fashion." For simplicity sake I will make one list for what has looked better over the past three days and one for what is not looking so great:

 

Better:

The red rash is no longer dominating his face and cheeks. Now, it is mostly "pink" and mostly located on his face.

The "startle reflex" is now at a #3 on a scale of 1 - 10 (with 10 being extreme).

His speech is more fluid and his thinking is more flexible.

He has had periods of "relaxation." We have not seen this in a while.

His history teacher e-mailed me that he "was better able to track the lesson today." :-) (I have not heard something like that all year.)

Tonight he asked why he could not have the shot today.

 

Not so great:

Very anxious.

Brief but intense bouts of rage.

Both associated with a flare up of that red rash on his face.

OCD is worse.

Tonight (red rash burning bright on his cheeks) he asked why he could not have the shot today!

The OCD item really worries me. I will be really watching the response to shot #3 tomorrow.

[Cytokine testing through Neuroscience....]

My ds14 had the My Lyme ID test thru Neuroscience when we consulted at the National Integrated Health Associates here in Wash. D.C. I was told that the test exposes the blood cells to the Lyme and then they measure the cytokine response. It is supposed to be very specific for Lyme. They chose it for my son because it is a good test for patients with poor immune systems who may not be able to mount an antibody response to the Lyme. He had three "equivocal" bands out of a possible five. Also, the list of cytokins had many positives that were very high.

 

Here are the explanations for our son's results that came with the test:

 

"Lyme ITT Equivocal Response / Cytokines: Elevated Response

The results of the Lyme ITT suggest possible exposure to Lyme-specific antigens. Patient results should be considered positive when multiple Lyme antigens have an equivocal stimulation index. The results of the cytokine test suggest an activated immune system (inflammatory response). Results may be suggestive of an early stage of Lyme disease. If symptoms and history are suggestive of Lyme, further testing for Lyme and co-infectious agents may be necessary. Immune support and intervention should be considered if Lyme symptoms exist. A retest is suggested in 3-4 weeks."

 

The following info. came as an explanation of some of the different tests included in My Lyme ID:

 

"BACKGROUND INFORMATION:

Lyme disease is an infectious inflammatory disorder caused by the bacterium Borrelia burgdorferi... [it's] success rests in its ability to evade or hide from a host's immune system."

 

"Lyme ITT

The Lyme Immune Tolerance Test (ITT) measures the body's cell mediated immune response to Lyme-specific antigens. In contrast to antibody medicated Lyme tests, including Lyme ELISA and Western Blot, Lyme ITT specifically targets the Type-IV delayed immune response to Lyme antigens. The test procedure exposes isolated white blood cells to Borrelia burgdorferi (Lyme bacteria) specific antigens. Previous Lyme infection will induce memory T-cell proliferation and /or changes in cellular morphology, which is measured as a Stimulation Index (SI).

Note: Cross-reactivity may occur with other spirochetal diseases."

 

"Cytokines

Cytokines are the chemical messengers of the immune system and serve as markers for inflammatory processes. An encounter with physical stimuli (i.e.: bacterial, viral, fungal, parasite infection) challenges the immune system. In response to physical stimuli, immune cells secrete cytokines as a primary defense mechanism. Elevated cytokine levels may be an indication of an active immune response to a physical stimulus."

 

We also consulted with a LLMD earlier this week. He is familiar with both My Lyme ID and Igenex. He dx our ds14 with Lyme and made some aggressive changes in the Lyme treatment plan. He also ordered an Igenex Western Blot. It seems appropriate in light of the equivocal bands and the fact that even My Lyme ID recommends further testing. Additionally, with the possibility of "cross reactivity" with other spirochetal diseases I think it is prudent.

 

Does anyone out there know what other spirochetal diseases might be at play here? Would yeast (Candida) be one of them? My ds has a big yeast problem that we are currently fighting with the help of the LLMD.

 

As always, I hope this is helpful...

[If 1st dx'd PANDAS then LD...did PANDAS ever reall play a role?]

I've been off the board lately and have not read all that's been written in this post. You are obviously going to get some different opinion on this issue. But I think it's very complicated, and much research is being done on various things that relate to some of these questions.

 

My thoughts:

As to Dr. Cunningham, I've been in touch with her periodically regarding lyme and her research. I would never attempt to speak for her on this board, but it's no secret that she is working with several prominent lyme doctors and running the same research on their patients who have the neuropsych symptoms. And of course many people here are reporting back to her that they have subsequently been diagnosed with lyme. So perhaps soon she will publish more on this topic. But really, there has been and continues to be research going on in as to these pathogens.

 

Neuropsych symptoms (such as those classified as PANDAS here) have always been listed as possible symptoms for lyme and related pathogens. The medical literature is full of discussion, and has been for years and years.

 

If you go to any of the lyme boards, there are all kinds of people who report these symptoms about themselves or their kids. Rarely do they mention PANDAS. They only know these symptoms as just something that happens with lyme. With treatment, the symptoms resolve.

 

I personally would not say a person is "predisposed" to lyme per se. But why is it that while there may be great numbers of people exposed to these pathogens, only some present with symptoms? Or maybe it's years down the line that the symptoms emerge into illness? Autoimmunity and other hereditary factors may play a role (lots of research now on the role of autoimmunity and lyme). But certainly it seems reasonable to say that there is some reason one person's immune system handles the pathogen, and another person's doesn't.

 

I know lots of people here say "PANDAS and Lyme". But I think if you've got a confirmed diagnosis of one of these pathogens (borrelia, bartonella, myco, babesia, RMSF, Erlichia, etc), then that is your true problem. And all these other layers pile on top of that. I think it is Dr. Harris' slide that shows lyme as the hub, and all the other spokes radiating away (viruses, other bacterial infections, allergies, mold, yeast, etc). And as has been pointed out, llmd's are now referring to things as Multiple Infection syndrome. So yes, it's complicated. But unless, and until, the underlying pathogenic infection is addressed there will not be permanent or lasting recovery.

 

I'll admit, I have a very hard time reading these studies...God Bless Madeleine for being able to design and run them!!!

 

Is the bottom line in this which came first; chicken or egg debate that these scientists determined the predisposition for auto-immunity comes first, not that the auto-immunity is caused by these two manifestations of Lyme (joint & heart)?

 

I think this is a very complex question. Please allow me to share that I have a history of Rheumatic Fever (an autoimmune disorder related to strep). Over the years I have been able to manage my residual, occasional joint pain with Augmentin. I would joke that I knew I had been exposed to strep when certain joints became painful. Now, however, I have near constant joint pain that is not responding so well to a few weeks of Augmentin. I also have the Bartonella rash. I am waiting to see a LLMD and get tested. For me, the possibility that someone predisposed to autoimmunity to strep. could also be similarly predisposed with regard to Lyme is an important question.

 

Even more so because my ds14 who was a "poster child" for catastrophic PANDAS last January has now been diagnosed with Lyme and Bartonella. His treatment is rocky because the die-off stimulates the PANDAS symptoms. This is yet another reason to wonder about the relationship between Lyme and PANDAS along with how that might effect individuals predisposed to autoimmune responses.

This makes sense. Let me clarify too that I wasn't thinking a person could be predisposed to Lyme. What I do wonder about is whether the Lyme disease sets up a "predisposition" to certain kinds of other autoimmune problems - including, possibly, PANDAS. I think that is what you are saying here too - and much more clearly!

 

I was also thinking that PANDAS can occur on its own - and a child with PANDAS could even contract Lyme separately after developing PANDAS (that may be the case with my ds14). However, I believe PANDAS is an autoimmune response to strep similar to that of Rheumatic Fever. While Lyme... it is interesting to watch the medical studies tease apart the role of autoimmunity in this disease process. The little bit I have been able to read seems to indicate that Lyme can set a person up to become autoimmune to things??

 

I would love to hear more about this.

 

I believe my ds14 and I are different in how our illnesses evolved. In my case, I clearly had Rheumatic Fever first @ 47 years ago at the age of 6. My guess is that I did not contract Lyme until we moved to our current property in Northern Virginia a year or so ago. I love gardening and we bought this property in 2005 with the idea that I would enjoy renovating the 21 neglected gardens it came with!! The gardens are now finished (and flourishing) but unfortunately it might all be at the cost of my health. I did check into the possibility of Lyme disease for me a year ago but I used the standard test - which we all know has a high rate of false negatives. In a month or so I will hopefully know for certain if I truly have Lyme. I do think I have the Bartonella rash. Also, our family dog (Fido) contracted Lyme @ two years ago (long story) - we just finally got this confirmed by the vet. Fido, it seems, has functioned as the canary in the mine shaft for our household (he loves our backyard with all those gardens).

 

My ds14 is a different story. I am not certain what came first. There is some thought that he has had PANDAS since he was a preschooler. His PANDAS doc thinks the high functioning Aspergers diagnosis he received @ the age of 7 was really misdiagnosed PANDAS. He became clearly symptomatic of PANDAS two years ago. It "blew up" last January 2010. The question that relates to the the work Dr. Cunninghan is doing is weather my ds14 actually contracted Lyme before he developed PANDAS. The only thing I know for certain is that I first noticed his Bartonella rash in the summer of 2009 (he was 13 and I thought it was stretch marks from his growth spurt). I have no other symptoms of Lyme in my memory for my ds14 before that. It does not eliminate the question for me however. Which came first: Lyme or PANDAS is a question that will bother me for a long while - probably until he is well. In the meantime we battle both...

 

Another (more chilling) thought is that my ds14 had mild to moderate PANDAS for years and upon contracting Lyme the PANDAS became catastrophic. That "fits" the way things have played out best - and makes me very sad that we did not get the PANDAS diagnosed and under control long before his life fell apart. I guess every PANDAS parent feels this way.

[Finally got the IVIG]

I am very happy to read this post tpotter! Please post the progress your boys make as you are able :-)

[Dx Lyme - after PEX for PANDAS]

I would like to post updates on our son's Lyme / PANDAS treatment in case it would be helpful to someone. Please understand that I am learning as I am sharing... any info. others would like to add would be greatly appreciated!

 

10/21/10: DS14 started Doxycycline 100mg TID; Difulcain 100mg QD; VSL #3 DS (medical grade probiotic with 30 Billion units lactobacillus)... also Theralac, Pearls Immune, Caprylic Acid, Milk Thistle, Vit A, Nordic Naturals + D, Melatonin, and detox with Charcoal tablets are ongoing. Also started on GFCF diet due to results of food allergy testing... not so perfect at it yet.

10/26/10: Bicillin 1.2 LA IM (Emergency intervention due sudden onset of serious PANDAS symptoms: including biting his hand, red rash on face and neck worsening, "moro reflex," OCD "checking" and some other repetitions.)

10/27/10: Obvious relief of PANDAS flare - 75% reduction in anxiety/agitation, rash on face and neck now "pink," no moro reflex, few if any "checking" behaviors.

11/03/10: Returned to school after being home bound since February, 2010... No bite marks seen since Bicillin shot.

11/6-8/10: Mild to moderate uptick in PANDAS symptoms: red rash flaring again, moro reflex back, speech and cognition inflexible.

11/09/10: Scheduled for 2nd Bicillin shot (1.2 LA)

11/10-15/10: Results of 2nd Bicillin (1.2 LA ) shot are "mixed." Initial, brief relief of anxiety noted. Initial, but brief, improvement in speech and cognition - speech more fluid and cognition more flexible. However, the red rash is worse (not better) and the moro reflex is back. Sadly, after a few days of improvement, his speech is once again clipped and pressured and his cognition less flexible with lots of OCD flaring up - checking my face a lot.

 

11/15/10: An appointment becomes available with a local LLMD with whom we have been wait-listed - We take it!

LLMD reviews ds14's long medical history for PANDAS, all medications and supplements, recent positive Lyme tests (My Lyme ID), pos. Mycoplasma IGG, pos. EB titer IGG, pos. Candida titer (blood test), IGG food allergy testing results (which showed lots of III's and II's).

PLAN:

1. Immediate increase in Bicillin regime - 2.5 LA IM today, then every four days for a total of four doses. LLMD says this is his preferred treatment for PANDAS and it happens to be a pretty good treatment for Lyme as well.

2. Increased Diflucan to 600mg a day.

3. Also, started Vit D 50,000 units twice weekly.

4. Nutritional counseling (GFCF diet plus no eggs, no beef, no salmon means he will starve if we do not figure this out!!

5. Continue other meds until response to Bicillin evaluated then we will proceed with more Lyme tx (most likely).

 

11/16/10 AM afer Bicillin 2.5 LA #1: Red rash on neck and face = PINK! (rash almost gone on neck), direct eye contact with conversation, speech more fluid, conversation more flexible, body movements relaxed, DS14 says he feels better, no "checking" behavior.

11/17/10 (afternoon): Note from history teacher at school - "He seems to be better able to track the lesson today..."

11/17/10 (evening): RED RASH BACK, moro reflex back, states "I am stressed... of course it is obvious I am worked up..." Interactions difficult this evening due to inflexible thinking, more OCD "Checking."

11/18/10: Can't wait to see if today's Bicillin #2 is helpful...

I will update on the results of Bicillin IM #2 this weekend...

[If 1st dx'd PANDAS then LD...did PANDAS ever reall play a role?]

I'll admit, I have a very hard time reading these studies...God Bless Madeleine for being able to design and run them!!!

 

Is the bottom line in this which came first; chicken or egg debate that these scientists determined the predisposition for auto-immunity comes first, not that the auto-immunity is caused by these two manifestations of Lyme (joint & heart)?

 

I think this is a very complex question. Please allow me to share that I have a history of Rheumatic Fever (an autoimmune disorder related to strep). Over the years I have been able to manage my residual, occasional joint pain with Augmentin. I would joke that I knew I had been exposed to strep when certain joints became painful. Now, however, I have near constant joint pain that is not responding so well to a few weeks of Augmentin. I also have the Bartonella rash. I am waiting to see a LLMD and get tested. For me, the possibility that someone predisposed to autoimmunity to strep. could also be similarly predisposed with regard to Lyme is an important question.

 

Even more so because my ds14 who was a "poster child" for catastrophic PANDAS last January has now been diagnosed with Lyme and Bartonella. His treatment is rocky because the die-off stimulates the PANDAS symptoms. This is yet another reason to wonder about the relationship between Lyme and PANDAS along with how that might effect individuals predisposed to autoimmune responses.