Lyme

[PacificMama]

So- for example- my kids (so far) are "classic pandas"- really healthy, overnight onset, total remission with pandas treatment- yet it is now an autoimmune condition for them- where if they have an immune challenge, they have a flare of ocd. Otherwise, they are robustly healthy and energetic. So, while they were only tested for lyme with one standard test and it was negative- I think they don't have lyme. However- we live in deer country- so I worry everyday that we will get it

 

So- I think maybe Johnsmom is looking for the same info as I: how does lyme differ from pandas? and are many of the kids now diagnosed with lyme, actually not pandas? So in other words- if you had initially treated for the lyme (with antibiotic cocktail)- would things be good, and would there be no need for pandas treatment?

 

Lets try to keep it supportive- and full of scientific fact, or immediate personal experience- please

 

Classic Panadas presentation can be the same as lyme/other presentation. But lyme is very complex, and can also present differently.

 

I am going to assume that by pandas, you mean strep and only strep present.

 

Lyme can look the same as pandas. But lyme/other is incredibly complex pathogen, and can present with a much more varied symptom list. It can then essentially disable an immune system allowing other non-tick borne diseases to take hold.

 

I personally never say "lyme AND pandas". At it's core, it is lyme/other infection that is the root. Once it is cleared, or if it was initially cleared, the symptoms you know as pandas would go away. Lyme doctors usually don't refer to PANDAS. They just refer to these neuropsych symptoms as just that, another symptom.

 

On that note, I want to add that if you go to the lyme boards, you see tons and tons of people who talk about their neruopsych symptoms. They are clueless to the term PANDAS. All they know is that they have one or more of these tick borne infections and they cause the neuro symptoms.

 

Hope that helps!

Mary

[KeithandElizabeth]

dcmom:

 

I agree with Pacificmama in that lyme is just one of the microbes that can cause PITANDS. Strep was our actual trigger initially and whenever we treated our son for his repeated strep infections, he would instantaneously improve. At one point, however, he just stayed in PANDAS mode constantly even when we kept in on long-term antibiotics.

 

So, I feel that lyme and PANDAS are not two separate illnesses, but that PANDAS, or PITANDS, is a response to lyme, strep, mycoplasma, bartonella and babesia.

 

It appears that some of these children who have tested for other coinfections have mycoplasma and strep (without lyme) or bartonella and strep, etc..... So, I am currently curious as to whether anything is just strep. I do not know this answer, but it is a question that is on my mind.

 

Elizabeth

[dcmom]

Yes- by "classic pandas", I mean pandas.

 

Pandas as defined by Sue Swedo: pediatric autoimmune neuropsychiatric disorder associated with streptococcus.

 

Pandas as the belief that a genetically succeptible host (think rheumatic heart disease and sydenham chorea) contracts (maybe a specific strain of) strep which triggers an autoimmune reaction. This autoimmune reaction can subsequently have less specific triggers.

 

So- my question is to the parents who are now dealing with lyme (and I am thrilled that you have found a path to healing, and only want to learn, but for me learning comes by lots of questions...): Do you think your original diagnosis of pandas was incorrect? Of course, pandas and neuropsychiatric lyme are not the same thing (however, theoretically a child can have both. My kids have pandas, it is reasonable to think at some point they would get lyme...).

[dcmom]

Elizabeth-

 

Yes- I think a lot is just strep:

 

there are many post streptococcal disorders: rheumatic heart disease, sydenham's chorea, psoriatic arthritis, etc. This is nothing new. It is not a stretch to believe pandas is another post strep disorder. I think the suggestion that it can't be, is what causes some of the controversy.

 

Everyone sees things through their own lens. We are good now, with a strep trigger, and typical pandas treatments. So to me it seems easy and clear to understand pandas. Others have not had the resolution, and had to travel longer on the path to find lyme (or other issues). Because some (or even many) kids have lyme, it does not negate pandas. What it does is bring up the question of- does your child really have pandas? or was it lyme all along? And- what if anything- can help parents in diagnosis between pandas and lyme....

[KeithandElizabeth]

I do think that PANDAS (PITANDS) is not black and white and, yes, it may be just strep for some of these kids. I sure hope so because lyme is complicated to deal with and takes so much longer to treat than strep! I am just amazed at how many of the kids on the forum are showing up positive for lyme and/or mycoplasma, bartonella and babesia.

 

dcmom, I am so glad that your children are doing so well and I hope your battle is over!!!!

 

Elizabeth

[JAG10]

"Lyme" is the term used most commonly, but what this really means is any number of infections: borrelia, babesia, bartonella, mycloplasma, anaplasma, erlichia, rocky mountain spotted fever to name the more common ones. They are often found in combinations, as tics and other vectors harbor collections of them. They are much more common than you would imagine.

 

Mary,

 

Can you help me understand this? I thought the word from the NIMH meeting was that different infectious triggers to OCD/Tics/ADHD were acknowledged. It sounds to me like you are saying Lyme is synonymous with PITAND?? Myco-p is a bacterial infection like strep, but not from a tick. Haven't most been infected by myco-p before they get out of childhood?

 

Reading all these info is so confusing. It sounds like ALL kids have had the "infections associated with Lyme/PITAND" but most children's bodies can process the infection and others (OUR KIDS) develop neuro-psychiatric symptoms. So doesn't that come back to the auto-immune issue rather than the X, Y, Z infection antecedent?

[P_Mom]

This is a good discussion and something that needds to be addressed because it has been on the minds of several PANDAS parents. This may be long...bear with me and remember, I am not out to offend or discredit anyone....just sharing some thoughts.

 

First, I do not believe that PANDAS and Lyme ultimately co-exist. They are two distinct conditions....one caused my molecular mimicry (same mechanism as RF)...the other by tick born disease invading multiple systems and producing symptoms. I have personally never read of or heard of a case of Lyme that presented in a once completely healthy child becoming mentally ill and ridden with tics, ocd, etc. overnight...then, completely remitting in a day with antibiotics. (although I am sure there are those out there who have, but, it is in no way close to the norm of Lyme presentation, and, who can say for sure it is Lyme) I read about a child suddenly obsessively peadling overnight in Cure Unknown. This child received bicillin injection and miraculously remitted completely within a month, or sooner. This child was "thought" to have Lyme...no one knew of PANDAS, or thought of PANDAS then. It sure could have been.

 

What gets us here on the PANDAS forum is that it seems no one questions their Lyme diagnosis. It seems no one questions the LLMD's. You have a child who comes back with a negative IGENEX test result, and, then, quickly, someone jumps on here and says to be very careful, those tests are notorious for being wrong, your child can still have Lyme, it is a clinical diagnosis. Then, you get a child who tests postiive by IGENEX, just barely with maybe one indeterminate band, etc., then these notoriously inadequate tests become extremely accurate and your child now has Lyme...and a celebration of sorts to being on the right path is given. How do you "win?" And, it doesn't SEEM like anyone leaves a LLMD's office with any skepticism. I would love to hear, just once, someone come on here with a LLMD update and say..."well, we are checking..but, here is what he/she said...I am not sure I buy this...sounds fishy to me." It is almost like whatever these guys say is taken like the gospel truth. Some claims have been leaving me thinking..."geez, you are not questioning that?" Like Strep in the eyes.....or, the doc who sees strep "somewhere" cause a child has rosy cheeks.....weren't rosy cheeks supposed to be a heathly sign before? I am not trying to jump on anyone particular...I just had to give some examples of what I was talking about. I think these claims and "tests" need to be questioned and challenged. My LLMD always gave me heck for "giving him a hard time." I always questioned him....half the time he had a very inadequate response......you just can't sit back and accept what is told to you that easily....we have all learned that....same goes for PANDAS. I do not believe that all these kids that are coming up positive for Lyme have Lyme.......a small minority...sure, but, not the majority. I am not anti-Lyme...I know it is real and exists...for those of you dealing with it...I wish you well. I think we on the PANDAS forum are feeling like Lyme is being shoved down our throats. Like us PANDAS parents did to the people on the TS board before we were segregated. I understand how they felt. Everytime someone posted on the TS forum, someone from the PANDAS forum (quilty) would come on and shove PANDAS down their throats. They are well aware of PANDAS over there...just as we here on the PANDAS forum are well aware of Lyme......since the TS and PANDAS forum were segregated, I have never posted over there....I know how difficult and confusing it can be. If they would like to learn about PANDAS...they can just click on our forum...same goes for Lyme.

 

I was diagnosed "Lyme" by a positive IGM only after 4 months of illness. I had a picc line for IV antibiotics for one month...followed by two years of orals. All for "early Lyme."

I still have my symptoms...lesser, but, still there. I took myself off them after I was getting infection after infection and my body couldn't shake them. I developed thrush (with multiple pro-biotics). A blood test was taken about a year into treatment and I was pulled off antibiotics temporarily because my WBC count went from 8.0 to 2 ish. I was told my bone marrrow had shut down! After going off antibiotics, my WBC came back up, and I resumed treatment, only to start to get those infections that took months to shake. I was very healthy before all this. Now that I am off antibiotics, I rarely get sick. I have an apppointment at a rheumatologists office this coming Monday. I am no different, symptom wise, on or off antibiotics. I can see how people are getting results with Lyme treatments for PANDAS because the treatments are the same......antibiotics are the mainstay in each. I don't think a child who has had a PANDAS diagnosis, then treated for Lyme with improvement, necessarily makes them Lyme......the strong, multiple antibiotics involved in Lyme will squash almost any infection, PANDAS included. (it also doesn't rule Lyme out either.....I know that)

I still also don't see why some people don't realize that the antibodies involved in PANDAS can very well be cross-reacting with the Lyme tests and giving false positives?! That is a VERY real possibility.

 

Again, I wish everyone well! Dealing with Lyme? I hope for the best for you all....same goes for those of us dealing with PANDAS. And yes, if your child is not getting well, dig deeper!!! We know that. Just please don't try to lump them together......we know where to find you if we need info. on Lyme.

[dcmom]

Pmom I understand your passion/ as well as the passion of the Lyme parents- but we are ALL here for the same reason- to help our (and other's kids). Let's keep this thread to discussion of science, fact, symptoms and experiences that will help us all learn.

 

It is terrible what you went through, and important to let others know. For Lyme and Pandas there is no absolute test- which means we have to go with our mommy instinct-which is hard.

 

We need to be able to discuss this w/o hard feelings.

[PacificMama]

"Lyme" is the term used most commonly, but what this really means is any number of infections: borrelia, babesia, bartonella, mycloplasma, anaplasma, erlichia, rocky mountain spotted fever to name the more common ones. They are often found in combinations, as tics and other vectors harbor collections of them. They are much more common than you would imagine.

 

Mary,

 

Can you help me understand this? I thought the word from the NIMH meeting was that different infectious triggers to OCD/Tics/ADHD were acknowledged. It sounds to me like you are saying Lyme is synonymous with PITAND?? Myco-p is a bacterial infection like strep, but not from a tick. Haven't most been infected by myco-p before they get out of childhood?

 

Reading all these info is so confusing. It sounds like ALL kids have had the "infections associated with Lyme/PITAND" but most children's bodies can process the infection and others (OUR KIDS) develop neuro-psychiatric symptoms. So doesn't that come back to the auto-immune issue rather than the X, Y, Z infection antecedent?

 

First, I'll clarify that I was referring to Mycloplasma Fermentens (not myco P). There are various types of mycoplasmas... Fermentens is one that can be vector borne and often found in patients infected with borrelia.

 

I know lots of folks here talk about myco p -- it seems that it is yet another infection found amongst people here. But no, it is not vector borne that I know of.

 

Yes, it is confusing. And much more research needs to, and will be done. But yes, I would agree that there seems to be something about our kids that makes them susceptible to the effects of these infections. Autoimmunity plays a role, and lots of research is going on in that area. It was discussed yesterday in the DC forum.

I can only clarify that with lyme, the actual bacteria itself -- harbored in the CNS -- will cause the neuropsych symptoms. But it is confusing, because lyme can also create autoimmune reactions. Again, this has been and continues to be researched to better understand. Usually, a cleared infection clears the symptoms and any autoimmunity.

 

Mary

[NancyD]

Why can't a child have both PANDAS and Lyme???

 

My DD had classic PANDAS -- overnight onset of symptoms at age 2 following impetigo (strep), extremely high titers over the years (up as high as 2740),recurrent strep, symptoms coincide with exposure to strep, reacts positively to abx, IVIg, prednisone. Goes into remission (titers are now low, tics and rages are gone) but in the past few years she has new symptoms (heightened anxiety, OCD, knee joint problems, brain fog, tires easily), which are not helped by PANDAS treatments.

 

We live in northern NE in a tic-infested area, DD spends a lot of time at the horse barn, one horse she rides was diagnosed with Lyme.

 

Now IGX tests show DD is IgM LD positive in multiple bands. Mycoplasma levels are 4 times what they should be.

 

Nancy

[P_Mom]

DC Mom.......I agree...however, what makes it hard is...what exactly are the facts???

 

Nancy....a child CAN have Lyme and PANDAS.....I just don't believe it is as common as presented on here.......but, once a child does have PANDAS, if they were to contract Lyme, it would most likely cause a flair in PANDAS symptoms.

[NancyD]

DD had severe exacerbation of PANDAS symptoms in the spring and was hospitalized for two weeks. She did not go into remission until the HD IVIg kicked in (10 weeks later) and was switched to Augmentin XR and 30-day tapered prednisone. The rages disappeared but anxiety and OCD got worse.

 

Nancy....a child CAN have Lyme and PANDAS.....I just don't believe it is as common as presented on here.......but, once a child does have PANDAS, if they were to contract Lyme, it would most likely cause a flair in PANDAS symptoms.

[Chemar]

 

Nancy....a child CAN have Lyme and PANDAS.....I just don't believe it is as common as presented on here.....

 

P.Mom, I am glad you clarified that as you had earlier said

First, I do not believe that PANDAS and Lyme ultimately co-exist. They are two distinct conditions.......

 

I am not sure why there has to be an "either, or..." approach, when any person at any time can be infected with more than one microbe, with each having it's own resultant symptoms, as well as likely compounding those of each other.

 

Maybe I am misunderstanding the sentiments here, but I am not sure why there has to be this divide? when the final objective is to identify what is making a child ill, and then treat as comprehensively as possible to try to heal them.

[dcmom]

Chemar- I agree, and am not interested in a divide, but what I am interested in is a supportive discussion about the differences and/ or similarities of Lyme and pandas. I think most could agree that Lyme and pandas are two different illnesses; some may have pandas, some may have Lyme, and some may have both (and in this case one complicates the other). The etiology, mechanism, possible extent of symptoms, helpful doctors and successful treatments for both are different- which is where I think I understand PAndas to the best of my (and science's) current ability, but my knowledge of Lyme (and how it may differ) is very limited. I am very curious for those initially diagnosed with pandas, and now Lyme, whether they think their initial diagnosis is wrong. This is important to me, well, because I have two daughters with pandas, and I have the need to know everything I can. From what I am being told about Lyme, it may cause autoimmunity- but that will resolve with proper treatment. From all I have learned about pandas, it becomes an autoimmune disorder that may not resolve.

[smartyjones]

oops -- lost half my edit -- now have to go make dinner

 

 

 

Edited October 13, 2010 by smartyjones