Some notes from Cunningham

[MomWithOCDSon]

P Mom -- Thanks for the post.

 

One of the concepts I'd like to circle back around to here is the whole idea that we should, as adults, responsible parents and caretakers, always "consider the source" and weigh, internally if not externally, the credibility of the sources. Is it surprising that a doctor who specializes in PANDAS will frequently diagnose PANDAS? Probably not. And in the same way, I would be surprised to find doctors who specialize in Lyme who do not diagnose Lyme more often than they declare it definitively to not be Lyme. I think this is particularly true when dealing with illnesses that require clinical diagnoses, and for which definitive testing remains elusive.

 

What impresses me most about Dr. Cunningham's response, meanwhile, is the fact that she is Dr. Cunningham. A researcher. A researcher who began with Syndeham's Chorea, not PANDAS. A researcher who, while she provides testing and testing response for many, has no patient load whom she treats for SC, PANDAS or any other malady. I have seen Dr. Cunningham speak on several occasions and have corresponded with her, as well. In each instance, she has gone out of her way to prevent her research, findings and presentations from being extrapolated outside the parameters to which she can directly attest. She's not about forwarding or refuting any agenda; she's about conducting her research, protecting its credibility, and moving her very defined science forward. And as someone else here said, she's now in consultation with some Lyme experts, so she is clearly continuing on an open-minded though stringently scientific track in terms of her work. For me, anyway, that further supports the credibility of her response. She's not talking without having done her homework or without having any context or framework for her feedback.

 

I have sort of a radical perspective in a way, I guess. There's a lot of talk here on the PANDAS forum that one should seek out a PANDAS expert doctor with whom to consult. And from those who are dealing with Lyme and suspect a broader Lyme element in our children's illnesses, I frequently hear that one should consult a Lyme expert. In full disclosure, we have seen one of the PANDAS experts for our DS, though it was fairly far into the PANDAS experience and did not provide any particular revelations, change the course of our DS's treatment, or radically alter anything about our understanding of the illness or how we would contend with it as time went on. Our DS's treatment has thus far come by way of the skeptical pediatrician and measuredly-responsive psychiatrist we've known for over a decade, informed and supported by the information research provided by the likes of this forum, Dr. C. and others in the field. Neither of these practitioners expected to find PANDAS, but both have been willing to help us treat it based on the evidence presented by our DS himself and the available research.

 

So, while I think it is certainly worthwhile to consult with an expert (or emerging expert) in a field, I'd also like to suggest that there is much to be gained by seeking opinions and/or treatment from practitioners who are open-minded and curious, but perhaps not so set into a given specialty that their perspective is predominantly informed from that narrow field of endeavor. A little skepticism can be a good thing; it can cause us to engage in more critical thinking, rather than allowing our emotions or what we hear in places like this (however well-intentioned) to run the whole show, the whole time. A little "hold on here, give me a minute to process this information" when you share the latest research with your standard pediatrician or immunologist or psychiatrist can be a good thing, provide balance and pace to the treatment response, and actually give your intuition a chance to settle a little so that there's a greater likelihood you really are responding to intuition rather than desperation, frustration or emotional exhaustion.

[KeithandElizabeth]

Kelly:

 

I think this debate can be healthy and again, for the record, I do not think this is all Lyme.

 

I guess I do not understand your ill will towards lyme and lyme testing. And I suppose I do not understand your thoughts on the coinfections. Do you feel that the positive coinfections are erroneous as well? I am just curious because Babesia, a parasitic coinfection, has been so hard for our son to erradicate.

 

I do not see the harm in testing and treating for lyme. Usually, the treatment is a combination of antibiotics, versus just one antibiotic. And I do wish I had tested for lyme before doing 6 IVIG's. I do not feel that lyme testing and lyme treatment is really that invasive and so I do not understand the negative emotion towards lyme.

 

Our LLMD has helped us tremendously. I feel that he has literally saved my son and our family. When IVIG's and PEX are not working for many of these children, what do you suggest they do? My son would be in a horrible place right now if it were not for the lyme treatment, including the cyst busters and the babesia treatment.

 

So, all that I feel is that we, as parents, should check for all of the possible bacterias for PANDAS and PITANDS, including lyme and mycoplasma and strep. I guess that I do not fully understand your viewpoint against lyme testing and I am open to discussing this further.

 

For the record, our LLMD has seen so many of my friends who have children with OCD or transient TICs, etc...... and he has only found lyme in our family and one other family who came from CT and already had a positive lyme test with Dr. B. So, he is definitely not biased towards lyme per se. But he has found other infections in all of the children who have had OCD, hallucinations or TICs.

 

Again, I am so happy that your children do not have lyme because it is one of the tricky bacterias to deal with and I am really happy that your children are both doing well because we all want each and every child on this forum to do well.

 

Elizabeth

Edited December 24, 2010 by KeithandElizabeth

[dcmom]

I agree with JAG.

 

I believe there is pandas, Lyme and maybe for some lightening strikes twice.

 

It is a no brainer, not even worthy of debate, that since both rely heavy on clinical diagnosis, that both will have false positive and negative diagnosis.

 

We can judge by how OUR child does w/ treatment. And, it is certainly possible for both illnesses to benefit from the others treatment protocol, if by accident. (I just read somewhere how some autoimmunity is treated with anti malaria drugs- which could therefore possibly help pandas kids, and I think is also used in some Lyme coinfections).

 

I do think there is one thing we don't like to talk about, but when searching for answers, we need to keep in mind: the pandas model, as defined by swedo is an autoimmune disorder- with at this time, probably no cure. How any persons course of autoimmune illness goes differs, and can be baffling- but that is the nature of autoimmunity.

[Worried_Dad]

So, while I think it is certainly worthwhile to consult with an expert (or emerging expert) in a field, I'd also like to suggest that there is much to be gained by seeking opinions and/or treatment from practitioners who are open-minded and curious, but perhaps not so set into a given specialty that their perspective is predominantly informed from that narrow field of endeavor. A little skepticism can be a good thing; it can cause us to engage in more critical thinking, rather than allowing our emotions or what we hear in places like this (however well-intentioned) to run the whole show, the whole time. A little "hold on here, give me a minute to process this information" when you share the latest research with your standard pediatrician or immunologist or psychiatrist can be a good thing, provide balance and pace to the treatment response, and actually give your intuition a chance to settle a little so that there's a greater likelihood you really are responding to intuition rather than desperation, frustration or emotional exhaustion.

 

Beautifully said, Nancy!

 

This is hard: just plain hard, for all of us parents (and for the afflicted children). It is not clear-cut in any way, and we're left to flounder through the medical murk, trying to find the right path to recovery for our kids.

 

What I can say for sure: Dr. Cunningham and Dr. Leckman have been wonderful to our family for years now, generous with their time and input, asking nothing in return, humble about the limits of their current knowledge. They are widely respected researchers in this field and have certainly earned credibility in our family's eyes, personally and professionally. They don't have all the answers (and would freely admit that). But their opinions are well worth considering as we all try to figure this out for our specific situations.

 

We're concerned about our ds's positive IGeneX test results. But - candidly, right now - our ds's situation feels more like PANDAS. The weight of the evidence (elevated ASO with every exacerbation, whole family's elevated ASO, positive results from steroid burst and IVIG, "exorcist syndrome" presentation, etc.) definitely leans that way. With a compromised immune system, is/was he vulnerable to other opportunistic infections? Absolutely. Could GAS be the "secondary" infection? Absolutely.

 

I think folks on here have pointed out the key criterion we all end up using. If one treatment regimen isn't doing the job, if your sick child isn't improving, then it's essential to explore further. The tough part for us: our son is doing awesome right now on the "Saving Sammy" dose of XR. He's not 100% - after 3+ years of h*ll, not surprising - but he's awfully close. He's happy, fully functional, enjoying life and social life again. No bumps or backslides for > 1 year. The last thing in the world we want to do is take any chances on derailing that (and I'm sure every parent can relate). So - for example - discontinuing the XR in order to pursue Lyme DNA testing just isn't an option for us.

 

We plan to share our experience going forward, no matter how it goes, because folks who came before us bravely did that and consequently gave us invaluable guidance when we most needed it. There's plenty of room here for multiple points of view, and I think this forum clearly shows that there is no "one size fits all" answer.

 

May we all ultimately find the right path through the swamp!

[thereishope]

I am not "anti Lyme" however, I think some people are leary to voice an opinion because they see how some have become blacklisted and labelled as "anti Lyme" if they speak up. Some may not see it that way, but I get the sense of that.

 

To give insight into what has bothered me in the past...there have been statements made that PANDAS is actually Lyme. Perhaps that idea has been retracted but I know I cannot forget reading that. That upset me. Also, reading how if you get a dx for Lyme from a LLMD and you go through treatment, you will not longer have to fear strep. I think that statement worries me too. No one has the answers and no one can guarantee that child will not still react to strep in a PANDAS reaction. I don't believe in giving a false confidence like that. There is a chance a PANDAS child could benefit from Lyme treatment and as JAG stated in a few days earlier...wouldn't that be great if we as a PANDAS community found another way to treat out children. I feel like there's a contest of which camp will get the most parents. It should not feel like that.

Edited December 24, 2010 by Vickie

[tpotter]

I don't disagree in the least with what you are saying, or what anyone else is saying, but I think that we need to look at our own individual family members, find specialists, and then in the end...go with our guts. When I asked our pediatrician the other day what he thought we should do about something, his response was: "you have always gone with your gut, and it has steered you correctly." I really needed that response, because with all the fighting I've had to do over the years with sick children, and doctors who tell me that "PANDAS is voodoo," and the like, I really needed someone to reinforce that this is, in the end, a very individual clinical picture.

 

Personally, I still have a hard time believing that everyone in my family has lyme. But, as several have mentioned, if the medication is working, then really, what difference is it that you call it Lyme, PANDAS, etc. I've mentioned repeatedly, that my 15 yo tests least positive for lyme (only band 41,) but he's been herxing worse than the rest of us combined (about 1 day "episodes" with a new course of abx.) My husband tests the most positive (2 out of 3 IgM bands +, and, I think, 2 IgG bands +.) He's certainly the most symptomatic...diagnosed RA, but the RA meds haven't worked for 4 years. Symptoms came on suddenly 4 years ago. So, of course, we treat. My 18 yo (he's now 18...bday was yesterday ) also has PANDAS, but he's always complained of terrible joint pain. He had 3 or 4 positive IgG bands. We're treating, because of the symptoms. I have 3 IgG bands positive...occasional joint and muscle tightness and pain, but what I attributed to the "aging process." I also tested positive for MycoP (both IgM and IgG,) and everyone in my family had high IgG to MycoP. Whenever I try to stop the azith for mycoP, my asthma symptoms come back as bad as always. I started on doxy this month, and I'm having less muscle and joint pain and tightness.

 

Is it Lyme, is it part of the PANDAS process (and reality here, is that no one really knows for sure what is PANDAS/PITANDS, except autoimmune causing neuropsych symptoms)? Who knows, but clinically, my family is responding to Lyme tx, so it certainly appears to be Lyme for us. But, there's also no question that my boys have an autoimmune disorder causing neuropsych symptoms, and they have a very strong hx of strep, sinusitis, and we have a very strong hx of autoimmune disease in the family. So, we're also treating with IVIG (and did PEX last year.)

 

But, it certainly doesn't hurt to have debate on this issue. In the end, we really have to take all the information we have (and don't even have), and continue to go with our guts!

[momofgirls]

I understand that some are skeptical of lyme testing results. I was too initially, untill my daughter herxed upon the addition af a second antibiotic this past spring. She was doing very well but when we added to her treatment we saw a pretty strong herx to the drugs followed by a slow settling of symptoms. I too was diagnosed with lyme and felt like a truck hit me when starting my treatment. I don't feel like that now. We all HOPE we have things figured out and I too have been wrong before. The 'experts' treating my daughter have been wrong too but what I feel i have learned is that pandas is not always so strait forward for some. Worried dad, I unederstand your son presents with pandas classicly and no one is suggesting he does not have pandas but just that there may have been some chronic infection brewing underneath and maybe why pandas struck him. I don't know if it is possible, but in some cases could this be a disease of multiple infections causing the immune system to cave when contracting strep. I said SOME cases. I guess we all want to understand why this happened to our children and so we keep digging. Right or wrong as long as the child improves, who cares? I do not think it is by chance that a child improves with lyme treatment and they also have a false positive lyme test plus co-infections. So if infection specific treatment works for lyme and co-infectioms, its just because the child needed more abx and anti malaria drugs and cyst busting drugs??? Not because they did in fact have these infections? That is a pretty biased statement. We should try to keep in mind however that there are kids who have not been able to achieve a remission of symptoms and have gone on to uncover lyme.

Edited December 24, 2010 by momofgirls

[GraceUnderPressure]

Isn't is amusing how when these little conflicts erupt, everyone has to post their .02 about it? So here's mine!

And I'll let you all have it for free since it's Christmas!

 

I fervently hope that everyone will keep posting ANY info that they think might be helpful (and positive stories are DEFINITELY helpful - have you noticed how many times people have posted that they don't come here often because it's so scary & depressing? I'll admit that I have felt jealous a time or two, but those stories still give me hope) These are all so many pieces of the puzzle that we are all desperately trying to put together to save our kids.

 

Lyme testing IS very expensive & most of us are struggling to afford the PANDAS investigation already. And I too have looked at the false pos/false neg stuff on lyme and wondered from that what the point there is in forking out all the money for testing then? Would it be cheaper just to try some of the lyme treatments to see whether or not they help?

 

Additionally, I just started us on some natural anti-virals for this stupid respiratory bug we have not been able to shake for months now & couldn't help but notice that several of these supplements are used for lyme treatment as well. Certainly opens the door to some other hypotheses about why lyme treatments might help someone who tested neg for it. ABX are not single species specific either.

 

Though I come here for info to help my ds18, my ds13 is on the ASD spectrum. I spent years on different autism forums trying to learn what I could. If ever there were an example of "To a hammer, everything looks like a nail", parents who have found help for their kids are it!

 

There is a well known mom in the autism community who has successfully treated her children with supplements to whom virtually EVERY symptom is yeast. While I know yeast is ubiquitous, and goodness knows that we have had our rounds with it umpteen bazillion times, I just can't believe that it is quite the boogeyman she makes it out to be!

 

Still, as I told my dh, if the treatments help, that's far more important than if the explanation for WHY they help is accurate. I think we would all be well-served if we tried to avoid sharing our opinions & experiences with definitive statements. Better to keep with the "it could be...", "this is what worked for me when that didn't", "you might try...", "you might consider...", type wording. We should recognize the huge margin for error in all this even amongst the experts & try to keep our help humble - IMHO.

 

Meanwhile, may I wish you all a Merry Christmas with a little holiday cheer?

http://www.youtube.com/watch?v=XDOO3FvGsZ4&list=SL

 

With love & prayers to all of my fellow PANDAS/PITANDS parents & their families,

Grace

[RNmom]

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!

[Fixit]

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)

 

1 until we "tripped over it" in the course of evaluating a positive Candida and mycoplasma titer.

 

2 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.

 

3 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!

 

RN thanks for the post...

 

1 if you cold post more about this..i would greatly appreciate it or pm me

2 I KNOW

3 I am tired too and every doc i talk to has a slightly different answer then the next and that includes the lyme docs...i am already spent from pandas research...now i have to be lyme litterate...and i am old too ..a logical thinker..enjoy sudoku ..i just want someone to GIVE ME THE ANSWERS..and not search them out on my own after weighing 8 different responses

 

i think lymes is going to get alot more advocates as our panda kids get these multiple infections...maybe this was meant to be to get lymes more reseach...idk

[RNmom]

Hi Fixit,

A lot of what I learned right here on the PANDAS forum lead us to the Lyme diagnosis. We aren't getting rid of the PANDAS diagnosis yet however! I did post a longer response over on the Lyme forum under "Lyme after PEX for PANDAS (how we tripped over Lyme while looking for something else)..." or something close to that. My brain is "foggy" right now. You can PM me if you have any more questions. Take Care!