LYME?

[JenniferG]

Does one positive band (P41) mean a diagnosis of Lyme? And does that mean PANDAS doesn't exist? How is Lyme treated? ABX?

 

Any thoughts? Thanks!

[LNN]

Pandas certainly exists. And there are plenty of kids who have "just" Pandas. But some of us found that the symptoms of Pandas can closely overlap the symptoms of tick-borne illnesses (lyme, bartonella, babesia, erlichiosis/anaplasma, and mycoplasma - which can come from a tick or from humans). Some of us think our kids may have had a TBI and then when they got strep, the whole thing exploded. So that's why you see lyme discussed so much on this board.

 

As for your test results, you'll get as many opinions on that as there are members. There are lots of reasons why tests for lyme are less than reliable - mostly due to the fact that the tests look for indirect evidence of infection, such as evidence of antibodies against the lyme bacteria. But there are many reasons that these tests can give false negatives and false positives. So at best, lab results give you clues, but unless they're overwhelmingly positive, lyme remains a clinical diagnosis based on symptoms rather than on blood work.

 

Whether you feel one +41 is enough to pursue additional tests or a visit to an LLMD is a personal decision. It means your child has been exposed to a bacteria that has a flagella (a sperm-like tail). But there are other bacteria that can be transmitted by a tick (listed above) and it's possible to be infected with bartonella, for example, and have a lot of neuro-psych symptoms, and not have lyme, or maybe have an exposure to lyme (thus the +41) but only an active infection with bartonella. So you can do additional testing for co-infections but again, the tests have short comings and you still need to consider the clinical picture.

 

So...it becomes a personal decision as to whether you think there are pieces of the picture that are not explained exclusively by strep. For instance, if your child gets symptomatic without an active strep infection - it could be due to exposure to strep, or it could be that there's a tick-borne infection at play. If your child has unexplained fevers with no other signs of strep, if brain fog or rages are a disproportionate part of the picture, or show up when there's no recent strep...I'm not saying this "proves" these things are due to "lyme" and not Pandas. Only that if there are things that don't resolve the way they should or if symptoms take an abnormally long time to resolve, or if they show up in the absence of a clear strep infection, then maybe it's something more than Pandas at play.

 

About a year or so ago, a lyme mom posted that maybe as much as 50% of Pandas kids might actually have tick-borne infections. At the time, I thought that was ludicrous and even if true, it certainly didn't apply to my kid because we had clear evidence of strep. I was wrong. I think Pandas was part of our problem, but not the whole story. So you see a lot of posts about checking for lyme/co-infections just because we don't want others to make the same mistake. I would recommend ruling out lyme and co-infections before spending large sums of money on IVIG or pex, but it is ultimately up to you to decide how far to go. The tests are not definitive, in the same way that ASO and anti-DNase B tests can't be used to rule out strep. You have to consider symptoms and response to treatments (or lack thereof) to decide your next steps.

[JenniferG]

Pandas certainly exists. And there are plenty of kids who have "just" Pandas. But some of us found that the symptoms of Pandas can closely overlap the symptoms of tick-borne illnesses (lyme, bartonella, babesia, erlichiosis/anaplasma, and mycoplasma - which can come from a tick or from humans). Some of us think our kids may have had a TBI and then when they got strep, the whole thing exploded. So that's why you see lyme discussed so much on this board.

 

As for your test results, you'll get as many opinions on that as there are members. There are lots of reasons why tests for lyme are less than reliable - mostly due to the fact that the tests look for indirect evidence of infection, such as evidence of antibodies against the lyme bacteria. But there are many reasons that these tests can give false negatives and false positives. So at best, lab results give you clues, but unless they're overwhelmingly positive, lyme remains a clinical diagnosis based on symptoms rather than on blood work.

 

Whether you feel one +41 is enough to pursue additional tests or a visit to an LLMD is a personal decision. It means your child has been exposed to a bacteria that has a flagella (a sperm-like tail). But there are other bacteria that can be transmitted by a tick (listed above) and it's possible to be infected with bartonella, for example, and have a lot of neuro-psych symptoms, and not have lyme, or maybe have an exposure to lyme (thus the +41) but only an active infection with bartonella. So you can do additional testing for co-infections but again, the tests have short comings and you still need to consider the clinical picture.

 

So...it becomes a personal decision as to whether you think there are pieces of the picture that are not explained exclusively by strep. For instance, if your child gets symptomatic without an active strep infection - it could be due to exposure to strep, or it could be that there's a tick-borne infection at play. If your child has unexplained fevers with no other signs of strep, if brain fog or rages are a disproportionate part of the picture, or show up when there's no recent strep...I'm not saying this "proves" these things are due to "lyme" and not Pandas. Only that if there are things that don't resolve the way they should or if symptoms take an abnormally long time to resolve, or if they show up in the absence of a clear strep infection, then maybe it's something more than Pandas at play.

 

About a year or so ago, a lyme mom posted that maybe as much as 50% of Pandas kids might actually have tick-borne infections. At the time, I thought that was ludicrous and even if true, it certainly didn't apply to my kid because we had clear evidence of strep. I was wrong. I think Pandas was part of our problem, but not the whole story. So you see a lot of posts about checking for lyme/co-infections just because we don't want others to make the same mistake. I would recommend ruling out lyme and co-infections before spending large sums of money on IVIG or pex, but it is ultimately up to you to decide how far to go. The tests are not definitive, in the same way that ASO and anti-DNase B tests can't be used to rule out strep. You have to consider symptoms and response to treatments (or lack thereof) to decide your next steps.

Thank you so much! This comes at a time when we are pondering IVIG. We meet with Dr. B. on Monday. Now I am very anxious for the appt!!

Edited March 19, 2011 by JenniferG

[lyme_mom]

Pandas certainly exists. And there are plenty of kids who have "just" Pandas. But some of us found that the symptoms of Pandas can closely overlap the symptoms of tick-borne illnesses (lyme, bartonella, babesia, erlichiosis/anaplasma, and mycoplasma - which can come from a tick or from humans). Some of us think our kids may have had a TBI and then when they got strep, the whole thing exploded. So that's why you see lyme discussed so much on this board.

 

As for your test results, you'll get as many opinions on that as there are members. There are lots of reasons why tests for lyme are less than reliable - mostly due to the fact that the tests look for indirect evidence of infection, such as evidence of antibodies against the lyme bacteria. But there are many reasons that these tests can give false negatives and false positives. So at best, lab results give you clues, but unless they're overwhelmingly positive, lyme remains a clinical diagnosis based on symptoms rather than on blood work.

 

Whether you feel one +41 is enough to pursue additional tests or a visit to an LLMD is a personal decision. It means your child has been exposed to a bacteria that has a flagella (a sperm-like tail). But there are other bacteria that can be transmitted by a tick (listed above) and it's possible to be infected with bartonella, for example, and have a lot of neuro-psych symptoms, and not have lyme, or maybe have an exposure to lyme (thus the +41) but only an active infection with bartonella. So you can do additional testing for co-infections but again, the tests have short comings and you still need to consider the clinical picture.

 

So...it becomes a personal decision as to whether you think there are pieces of the picture that are not explained exclusively by strep. For instance, if your child gets symptomatic without an active strep infection - it could be due to exposure to strep, or it could be that there's a tick-borne infection at play. If your child has unexplained fevers with no other signs of strep, if brain fog or rages are a disproportionate part of the picture, or show up when there's no recent strep...I'm not saying this "proves" these things are due to "lyme" and not Pandas. Only that if there are things that don't resolve the way they should or if symptoms take an abnormally long time to resolve, or if they show up in the absence of a clear strep infection, then maybe it's something more than Pandas at play.

 

About a year or so ago, a lyme mom posted that maybe as much as 50% of Pandas kids might actually have tick-borne infections. At the time, I thought that was ludicrous and even if true, it certainly didn't apply to my kid because we had clear evidence of strep. I was wrong. I think Pandas was part of our problem, but not the whole story. So you see a lot of posts about checking for lyme/co-infections just because we don't want others to make the same mistake. I would recommend ruling out lyme and co-infections before spending large sums of money on IVIG or pex, but it is ultimately up to you to decide how far to go. The tests are not definitive, in the same way that ASO and anti-DNase B tests can't be used to rule out strep. You have to consider symptoms and response to treatments (or lack thereof) to decide your next steps.

Thank you so much! This comes at a time when we are pondering IVIG. We meet with Dr. B. on Monday. Now I am very anxious for the appt!!

I agree with the post above but I would also add that the PANDAS doctors are not qualified to rule out Lyme and many do not test for lyme or know how to interpret the tests. They just do not have the training or experience that an ilads trained doctor has. I may have posted that 50% number but I think the number of PANDAS kids with TBDs is much higher. I know that is very controversial but I have been watching these posts for a year and a half and those who check out TBDs usually find a little lyme or bartonella or some other infection going on. By all means do not let them use steroids on your child unless you are absolutely certain there is no infection. Steroids are so dangerous for a child who has an active infection, especially these stealth pathogens like lyme, bartonella and other bugs. I would seek an opinion from a qualified llmd about whether or not an active infection is involved to be safe. ILads.org can point you toward a local llmd. Always get a second opinion. Good luck!

[smartyjones]

Some of us think our kids may have had a TBI and then when they got strep, the whole thing exploded.

 

So you can do additional testing for co-infections but again, the tests have short comings and you still need to consider the clinical picture.

 

Only that if there are things that don't resolve the way they should or if symptoms take an abnormally long time to resolve, , then maybe it's something more than Pandas at play.

 

it certainly didn't apply to my kid because we had clear evidence of strep. I was wrong. I think Pandas was part of our problem, but not the whole story.

 

 

i think LLM gives a lot of good thoughts. we were 'fortunate' in that a behavior therapist suggested PANDAS about 3 mths into onset. ds had ASO of 898 and a positive strep culture. a short course of azith was disastrous. a new ped put him on keflex. he had 100% remission in about 3 days and a sinus CT showed all 6 cavities infected. absolutely in my mind, clear strep indicators. however, he relapsed when off the abx. another course brought some relief but not the dramatic 100%.

 

a friend kept suggesting lyme. i politely thought to myself, "i know you're as obsessed wih lyme as i am strep, so thank you very much, my kid has clear strep issues." and a labcorp western blot that was completely non-reactive -- all bands. however, it did stick in my mind. when he wasn't healing, i asked our dr if we should revisit lyme. he referred us to another dr who did diagnose lyme, along with other infections.

 

i even obnoxiously thought, "well, i guess that's good" when they added the PITAND to the name of this board. how i laugh now that i am such a strong advocate of the role of many different infections in the ND of the diagnosis.

 

i don't now think the PANDAS diagnosis was wrong for my son. i think it was incomplete. he did have clear strep issues. i now consider him PITAND -- multiple causes. at the OCD conference last July, i heard many of the drs discuss it was not only strep that could be in play. i do believe it to be the issue for some but i think we'd all be better served to search out all the other possible culprits as well. i know that's kind of a far-off thought . . .

[tpotter]

SmartyJones

 

Very good response. We kept reading about Lyme on this forum, too, and I finally started looking at it when we were having a horrendous time getting sufficient treatment for PANDAS for my boys. Getting an appt., and getting tested for Lyme was the one thing I could control (I couldn't control getting followup from some of the docs, and I couldn't control insurance paying for it at that time, but I was able to get an appointment with a highly recommended LLMD (within 2 hours of my house). While waiting for that appt., I got all our WB's done, and surprisingly my DH was positive, one of my son's and myself were questionable (with symptoms), and one of my son's only had 1 band positive. Since Lyme is a clinical dx, the doc looked at the SYMPTOMS, not just the results, and we started treatment. I was positive that it was clearly PANDAS, before, but we all certainly herxed (except my DH...lol...even though he was the only one who was 100% positive on the WB, has RA, heart problems, possibly related.)

 

We have since gotten IVIG 3X for each of my kids (I do believe that we have to tx the immune system along with the infections,)

 

So, there's now no question in my mind that there are definitely more things at play to PANDAS/PITAND that just strep. I think that the longer one is sick with it (my kids have been sick a very long time, and are older), the more chance there is that they have picked up even more "bugs.", because of their bad immune systems!

 

Just my opinion.

[norcalmom]

No smarty - not far off - right on !! IMO

 

And I love hoe you said the diagnosis wasn't wrong - it was incomplete. The hypothesis is that a susceptible individual will have the immune reaction when exposed to strep. We do a lot of digging trying to prove they had (or have) strep - but not much in the way in investigating what makes them susceptible. It isn't just genetics that can cause this. Chronic infections and immune dysfunction can too. In Cunningham's recent presentation at UT grand rounds (the one taken down) she had a slide on what makes a person susceptible...it had FOUR inputs. What is in ( is my interpretation)

1) Genetic (you have family members with RF)

2 )Immunologic (you have immune dysfuntion)

3) Neurologic (you have family members with tics/ocd)

4) TYPES of EXPOSURES. (I'm assuming this means Lyme and other antigens)

 

Granted there is no audio with that slide. Its a GIVEN that they had strep exposure. Yes, they will react to strep...but it doesn't mean that they don't have some underlying condition that needs to be treated for them to get better.

 

Yes, I agree the lyme thing is overwhelming. But at the same time, I think there is no coincidence that lyme is already documented to effect the immune system, and to cause ongoing imflamatory reaction. So having lyme and being exposed to strep is like this perfect storm. AND BTW, cunninghams been investigating lyme for a long time. Its antoher thing that causes carditis (and somehow connected to CamK II) - just like strep - which is how she got involved with pandas. She even did a study on antibodies where she injected mice with both lyme and strep. Apparently, they have similar surface proteins - that cause the molecular mimicry phenomenon hypothesized.

 

I recently started a post trying to figure out if there were any commonalities that might distinguish a lyme pandas kid from a mycoP pandas kid from a plain (genetic) pandas kid. The only thing that stood out was the fact that almost ALL of the lyme people that replied had CHRONIC strep (it was either 5/5 or 5/6 of the lyme respondents listed chronic strep). So having clear strep association, that is chronic (can't shake it) looks like it makes it more likely that you also have lyme, not less likely.

 

It would be nice if there was a test to see if it is a genetic problem, but apparently there isn't (the cell line used to test for the DA17 marker has died off) . The only hint that you might belong in that group would be RF in the family.

Edited March 19, 2011 by norcalmom

[3boysmom]

Jennifer,

Dr.B in CT will order many, many tests. He will look for all of those coinfections that have been mentioned and he will order immune testing and Lyme testing through Igenex.

[P_Mom]

She even did a study on antibodies where she injected mice with both lyme and strep. Apparently, they have similar surface proteins - that cause the molecular mimicry phenomenon hypothesized.

 

 

 

Norcalmom,

 

Hi. This is really interesting to me. I do know that Cunningham did a mouse study on mice and strep antibodies, showing that strep antibodies alone can produce sudden onset repetitive/obsessive symptoms, but, I was not aware she did a mouse study of the sort with Lyme antibodies! Did she find the same results with the Lyme antibodies? If so, this information would help a lot of people who are struggling to accept the correlation of sudden onset ocd/tics associated with strep (PANDAS) to also be associated with Lyme antibodies. Could you please provide additional info. on that study?

 

THANKS!

 

 

And, for newcomers, Norcalmom is right. Cunningham has been studying Lyme for some time. It is her strong belief, as a neutral researcher, that after a certain amount of time from onset of symptoms (roughly 4-8 weeks)... a positive IGM alone in the absence of a positive IGG should not be used or regarded as diagnositc for Lyme. The likely of a falso positive IGM is high in the group.

 

Just giving all sides so newcomers can be informed. I know many debate/refute this finding, fair enough, but, I think it is important for everyone to be made aware of the differing opinions so that they may make an educated decision. I am also curiou how many diagnosed with Lyme are being diagnosed because of only positive IGM?

Edited March 19, 2011 by P.Mom

[norcalmom]

I dont't want to mislead anyone - much of this is my opinion and reading between some of line of what is the "published recommendations" and what I think the researchers believe, but cannot come out and say or prove yet.

 

Here is a link to that lyme study she did. I just came across it. It is NOT studying pandas (or neuronal antibodies - but other antibodies) - but its interesting that she is using and comparing strep and lyme. I should really read it a few more times - I don't understand it very well, just that these two antigens (strep and lyme) produce auto-antibodies that result in carditis and arthritis.

 

http://jcm.asm.org/cgi/content/short/43/2/850

 

Here is the intorduction-

"We investigated the possibility that manifestations of Lyme disease in certain hosts, such as arthritis and carditis, may be autoimmunity mediated due to molecular mimicry between the bacterium Borrelia burgdorferi and self-components. We first compared amino acid sequences of Streptococcus pyogenes M protein, a known inducer of antibodies that are cross-reactive with myosin, and B. burgdorferi and found significant homologies with OspA protein. We found that S. pyogenes M5-specific antibodies and sera from B. burgdorferi-infected mice reacted with both myosin and B. burgdorferi proteins by Western blots and enzyme-linked immunosorbent assay. To investigate the relationship between self-reactivity and the response to B. burgdorferi, NZB mice, models of autoimmunity, were infected. NZB mice infected with B. burgdorferi developed higher degrees of joint swelling and higher anti-B. burgdorferi immunoglobulin M cross-reactive responses than other strains with identical major histocompatibility complex (DBA/2 and BALB/c). These studies reveal immunological cross-reactivity and suggest that B. burgdorferi may share common epitopes which mimic self-proteins. These implications could be important for certain autoimmunity-susceptible individuals or animals who become infected with B. burgdorferi."

 

If you read the whole thing - you see that they inject some of the mice with both. (from what I recall...it was a few weeks I ago that I read it)

[P_Mom]

Thanks for the link, Norcalmom!

 

 

It is quite an interesting read....I thought this was significant regarding the Lyme specific band 31 that many speak of. (looks like antistreptococcal IGM antibodies recognize and react with this band)

 

" We found amino acid sequence similarity between B. burgdorferi OspA and streptococcal M protein, which suggested that B. burgdorferi and S. pyogenes share epitopes which cross-react with self-components. This reactivity was investigated further by Western analysis. Infected NZB and DBA/2 mice both demonstrated anti-B. burgdorferi IgM reactivity with a band at 31 kDa (marked by recombinant B. burgdorferi OspA) (Fig. 7). In addition, the antistreptococcal MAbs recognized this same 31-kDa OspA protein."

 

 

 

Jennifer...to answer your questions directly. No, presence of band 41 in and of itself is of no diagnostic significance for Lyme. It is a very common finding in the general population. The presence of band 41 on Lyme Western Blot also has nothing to do with whether PANDAS exists or not. PANDAS does exist in and of itself. Yes, Lyme is generally treated with high doses of multiple antibiotics.

[thereishope]

I may have posted that 50% number but I think the number of PANDAS kids with TBDs is much higher.

 

I'd like to add that there is no way anyone can state this percentage. One thing Ive found on this forum is that one persons opinion can quickly be blurred and remembered incorrectly as a fact. So just for the record, there is no study or anything similar to back that percentage up. Even if a casual poll is done now, it is still not true to form as those PANDAS parents who have found recovery, on route to recovery, or are happy with current treatment, may not be on the board anymore. Those absent people would be a decent count of the non-Lyme tally. Also, I believe many PANDAS parents whose children do not have Lyme just dont visit Lyme related threads on this section of the forum as it causes some distress and they feel they now need to defend their childs illness and diagnosis on here as well. So they may not even participate.

 

Also, may I add that if a child reacts to other triggers, even if strep is the known original culprit, they can still be PANDAS. Also, I think everyone is in agreement that other triggers can exist as the original culprit such as Mycoplasma Pneumonia for example (PITAND). I think across the board, no one says strep and strep alone at all stages of this illness can be and is the only possible trigger

Edited March 20, 2011 by Vickie

[P_Mom]

Thanks Vickie! Couldn't have said it better myself!