Lyme

[PacificMama]

Have the majority of kids here who have tested positive for lyme already had ivig?

 

Never IVIG for my daughter.

[dcmom]

So- to clarify something...

 

A good response to antibiotics (no herx but improvement in symptoms) would indicate it is less likely Lyme?

 

Maintaining remission from symptoms for a decent time period- unless/untill triggered by new illness might again mean Lyme is less likely.

 

Sudden and dramatic onset- the "hallmark" of pandas- does anyone have "information" (rather than personal opinion or experience) of how frequently this happens with Lyme.

 

Thanks!

[Worried_Dad]

The one psychiatric distinction that I can think of is just that I hear of more frequent & more intense cognitive fog/impairment in Lyme than in P.A.N.D.A.S., which isn't even really a distinction, haha. I think that disorders with mechanisms as broad & uninhibited as "bacteria inhabiting the nervous system" (Neuroborreliosis) & "antibodies attacking the brain" (P.A.N.D.A.S.) are bound to end up with the same "catch-all" symptoms. As has been said before, the physical symptoms are the main differentiator, as the only physical I symptom I really hear P.A.N.D.A.S. kids dealing with are the gastrointestinal issues every now & then.

 

Unfortunately, Dr. E, it's even more complicated than that to distinguish Lyme from PANDAS. Our son's symptoms started with physical symptoms often associated with Lyme: joint pain that moved from joint to joint (migratory polyarthritis), muscle weakness, difficulty walking. Six weeks later the "seizure-like episodes" of chorea began. I believe these are common physical Lyme symptoms... but they're also classic symptoms of acute rheumatic fever with Sydenham's chorea, post-strep autoimmune disorders that are considered part of the same "spectrum" as PANDAS by many experts.

 

So even the physical symptoms overlap considerably. No wonder there's so much diagnostic confusion... and why us paranoid parents don't get much sleep!

[matis_mom]

This is such an awesome exchange!

 

It is, to me, very much a chicken-egg kind of question... I don't know if we'll ever find the answer. It seems in our family's case, strep and Lyme are partners in crime! Sometimes it's hard to tell who is the culprit.

Take joint aches as an example. That is one of ds's symptoms, and it usually comes along right before the "mental" stuff strikes. It could be strep related (along the lines of RF), or it could be Lyme related.

One thing that may be helpful is to look and see if you find a patern. We are very much seeing a monthly patern. But again, is this simple a result of the spirochetes coming out to play, or is it that everytime Lyme flares it activates strep and it's just strep auto-antibodies causing the inflamation (be it in the joints or the brain)? What I would give to be able to take a little sample from ds's knee right at that time and find THE CULPRIT. Who knows, maybe if we could do that we would find them both pointing to each other and saying, "he started it!"

[Suzan]

Who knows, maybe if we could do that we would find them both pointing to each other and saying, "he started it!"

 

[PacificMama]

So- to clarify something...

 

A good response to antibiotics (no herx but improvement in symptoms) would indicate it is less likely Lyme?

 

 

Not true. Herx not necessary.

 

 

 

Maintaining remission from symptoms for a decent time period- unless/untill triggered by new illness might again mean Lyme is less likely.

 

 

Not true.

 

 

Sudden and dramatic onset- the "hallmark" of pandas- does anyone have "information" (rather than personal opinion or experience) of how frequently this happens with Lyme.

 

Thanks!

 

Not true. Lyme is often dramatic and sudden onset. It can also slowly creep.

 

I think the most important thing to understand is that these infectious diseases produce unique disease experience for each individual. Sooooooooooo many factors come into play.

[PacificMama]

No wonder there's so much diagnostic confusion... and why us paranoid parents don't get much sleep!

 

 

I just want to add that while I appreciate that there might be a lot of diagnostic confusion that goes on amongs us here, I just have to put in the word that most of these lyme doctors are very, very skilled and have the training, expertise and clinical experience to diagnose people infected with lyme and other infectious pathogens.

[smartyjones]

This is such an awesome exchange!

 

It is, to me, very much a chicken-egg kind of question... I don't know if we'll ever find the answer. It seems in our family's case, strep and Lyme are partners in crime! Sometimes it's hard to tell who is the culprit.

 

 

i'm with you on this.

 

for dcmom's earlier question -- which is a really good one, if lyme diagnosis makes those think the pandas was wrong -- i don't beleive for us it was wrong as much as it was incomplete. ds had clear, stong, strep indicators, classic pandas, 100% remission with abx. however, after inital relapse, not back to 100%. that's why we investigated more. i don't believe he had neuropsych lyme. was lyme brewing under the surface and strep pushed the pandas reaction? was lyme more of a silent infection and what we saw was all due to strep - lyme or not? and of course, then the infections created other deficiencies etc. would ivig or pex have remitted symtpoms and we not discover the other infections -- or could it have taken care of those infections?

 

i now consider him pitands -- multiple causes. lyme is one, strep is one, so are a few other infections with neuro-psych symptoms as well. which one is the one that creates the troublesome symptoms? i don't know. it is one or is it the combination of a few or all? our goal now is clearing these infections and see where we end up then. obviously, our belief and hope is that will remit symptoms. but, only the future will tell.

 

does it seem insane that he could possibly have all these infections? absolutely. how many people actually exist with infections they don't know about or don't cause problems for them? i think most of the population or a significant portion tests for HHV6, toxoplasma and CMV or EBV, right?

 

our dr is not willing to give the cause to one either -- it's only clear somewhere along the line, he took a hit and the infections piled on one another.

 

we're following a different path of treatment than most here -- it's clear he's still having trouble with behaviors and it seems he's cleared all infections but not strep -- although, throat culture in july and dec '09 were negative. currently awaiting titers.

 

i know i've written this before, and momocdson is so right that it's difficult sometimes to even have people see the strep trigger but i really hope the future is testing for all these known neuro-psych triggers - and there are many known neuropsych infections! -- when someone presents with the symptoms. that's my hope for what comes from the NIH conference.

Edited October 15, 2010 by smartyjones

[ajcire]

I don't question that these doctors are skilled. I think though that you have to remember that the same was said about the pandas experts... that they were very skilled and had the training and expertise and clinical experience to diagnose those with pandas... so now when some of those pandas turn out not to be pandas it makes me wary.

 

I don't say that negatively or with any disrespect. It's just something that sits in my mind while I watch this unfold.

 

 

No wonder there's so much diagnostic confusion... and why us paranoid parents don't get much sleep!

 

 

I just want to add that while I appreciate that there might be a lot of diagnostic confusion that goes on amongs us here, I just have to put in the word that most of these lyme doctors are very, very skilled and have the training, expertise and clinical experience to diagnose people infected with lyme and other infectious pathogens.

[Worried_Dad]

No wonder there's so much diagnostic confusion... and why us paranoid parents don't get much sleep!

 

 

I just want to add that while I appreciate that there might be a lot of diagnostic confusion that goes on amongs us here, I just have to put in the word that most of these lyme doctors are very, very skilled and have the training, expertise and clinical experience to diagnose people infected with lyme and other infectious pathogens.

 

Good point. In our case, we started with an LLMD who suspected Lyme. He ultimately diagnosed ARF/SC instead, then later changed that to PANDAS.

[sf_mom]

Dr. Ann Corson is speaking now on Pediatric Lyme and just spoke about sudden on-set. I recommend you watch to answer lingering questions you may have about Lyme.

 

http://ilads.org/lyme_programs/lyme_events_video.html#page=page-1

[nevergiveup]

Since I do not know whether the test is looking for antibodies or parasites with "tails" or bacteria!! But I would like to know about the false positive or false negative??? It may allow me to test without stopping ivig, since I do not have any other option. So if you could asks your docs and let us know I would greatly appreciate it. I was under the impression by Dr B and Dr T after two different consults that I could test anyway, makes me think false negative, so if she tests positive then she definately has it. But if she tests negative, she still may have it anyway. Any feedback?

[peglem]

Since I do not know whether the test is looking for antibodies or parasites with "tails" or bacteria!! But I would like to know about the false positive or false negative??? It may allow me to test without stopping ivig, since I do not have any other option. So if you could asks your docs and let us know I would greatly appreciate it. I was under the impression by Dr B and Dr T after two different consults that I could test anyway, makes me think false negative, so if she tests positive then she definately has it. But if she tests negative, she still may have it anyway. Any feedback?

Just my conjecture- if any of the lyme tests are looking at IgG...how could you trusts the results either way? The IgG in your child's blood sample would contain donor IgG. (you are the one who said your child gets IVIG every 21 days, right?)

[nevergiveup]

Is that what the igenex test is testing igg's?

Yes my dd gets every 21 days.

[pamsboy]

SFMom - how did you do the shedding die off in the urine test? TIA