P_Mom

For my son, who had the whole deal..tics, ocd, hallucinations, anxiety, etc....the tics were the first to go...stopped as fast as they started. The ocd and anxiety lingered for a long time......the past few months have been great! (by no means to I think we are out of the woods...but, for now, in a good place)

No vaccines here....in my opinion, you are "rolling the dice" more so when you choose to vaccinate a PANDAS child than when you choose to not. Just my opinion....it varies.

Got it! Bring on the respectful debates! Afterall, we are the ones that are going to crack this "thing." How can it happen without "discussion"?

Cheri, I guess I just don't see a good discussion/debate as arguing......as many others do. I don't see agruments in these threads....good debates, discussions, yes! Sometimes, yes, it does go overboard. I have always loved a good, honest, debate!

I got that too! Atleast today....some days I do really well! What is that?? (OCD) Strep can be multi-systemic.....certain strains/infections can affect the upper respiratory system, skin (infections and rashes), heart, lungs, blood, muscle and fat tissue, kidneys, liver and joints. So, even SOME of the physical manifestions of PANDAS and Lyme are hard to distinguish. I think most LLMD's have Lyme on the brain and are going to see Lyme in a child with symptoms most of the time.......it is what they do. Also, strep is on the rise....a stronger, new strain....yikes! "Is group A strep infection an emerging infectious disease? Yes. Health problems associated with strep A bacteria are not new, but reports of fatal infection with invasive strep A bacteria have been increasingly recognized in the United States since 1987. Researchers do not know why the new strain of strep A is on the increase or why it targets certain otherwise healthy people." Okay, Philly.....going to tackle that pile of laundry I have, too! Amongest some other things! Signing off for the day....(hopefully....I'll do my best!)

PhillyPA, You are not going to find a difference in symptoms, no matter how hard you look. Lyme can involve ANY symptom you can think of! PANDAS symptoms are also kinda of broad but nowhere near as broad as Lyme symptoms. However, there are big PANDAS symptoms, and, big Lyme symptoms... The biggies for PANDAS (as you know) are sudden onset OCD (broad manifestations), tics, ADHD behavior, anorexia, rage, anxiety, handwriting and math deterioration. Lyme biggies are a tick bite, bull's eye rash followed by a flu-like illness, then slowly evolving and eventually showing up as meningitis, cranial nerve problems (bell's palsy, etc), heart block, Lyme arthritis, headaches. But, like I said, check Lyme symptoms and you will find everything there. These are just some of the most diagnostic that I could think of off the top of my head.

I have never heard of it....but, I am sure the answer is yes. I wonder if any child that has been diagnosed with Lyme of late has had the bull's eye rash? I am pretty sure Lyme Mom's child had it...her story is the most clear-cut Lyme case I have heard. (maybe PacificMama's child had it too, don't recall) Does anyone know if any of the other children came down with the bull's eye rash?? I know it is not required for a Lyme diagnosis, and, not all Lyme cases will present with the rash. I have heard all kind of statistics...from 30% show a rash...to as much as 80-90% show a rash.......I haven't heard of many, if any, save the ones I mentioned...that had the bull's eye rash. Correct me if I am wrong....

P.Mom, I am glad you clarified that as you had earlier said 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. Cheri, Sorry about the confusing statements. As you know, it is hard to express exactly what we are feeling/thinking down in writing. When I said that I do not believe that Lyme and PANDAS co-exist, I was referring to the notion that many of us have gotten that Lyme is at the root of PANDAS, and that "most PANDAS kids have Lyme." This, I believe, is just not the case. BUT, can a child with PANDAS contract Lyme and therefore have two distint conditions feeding off one another, yes. I hope I am making sense. As for the need to make a distinction/divide....I personally believe it is crucial! PANDAS kids can be helped tremendously, even put into complete remission, with the use of steroids. Steroids are extremely dangerous for use in children who have Lyme disease. I know you know the dangers of the wrong meds!!!....this is why the difference is very important. Also, children with Lyme won't benefit as much as a PANDAS child from costly IVIG.(if not covered) It would be a shame for someone to spend 10K on a treatment that really won't work or last, or take the risks that the procedures involve unnecessarily.....same goes for PEX. So, the divide comes down to treatment. If antibiotics work....you are in "the clear" be it PANDAS or Lyme, (in a nutshell)...but, if you need further, more aggressive treatments...the wrong meds can be devastating. My LLMD said that steroids can make Lyme "impossible to eradicate." I had to make a pledge to him on my first visit that unless my life or eyesight was in immediate danger....I would not allow anyone to prescribe me steroids. See, it is important, outside of the antibiotics, the treatments differ. Kinda like it is important to know the difference between TS and PANDAS......very different treatments.

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.

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.

139 is still well in PANDAS range....I have a son with a Cam K score of 112, which Dr. Cunningham called definitely positive. (symptoms plus score....some kids can have a score of 112 and have no symptoms)

So, I guess really the IVIG makes a good improvement in MOST kids, but, no means a cure?. So, did the LLMD say you have an active strep infection...or a carrier state??? What was he looking for in the eyes?

Interesting, but, I am confused. How do you dilate pupils with a flashlight? Wouldn't shining a flashlight in your eyes make your pupils constrict?? How is Pixie doing? Are you seeing set backs since IVIG? This is info. I really need to know about kids who have gotten IVIG. I have been on the fence about it for YEARS! Still am...any thoughts, suggestions, experiences are extremely helpful. THANKS! Hope you are doing well!

Emerson.... sounds like a breathing tic to me.....my son has had it...I used to have it....it will pass.....just another compulsion/tic.

I am in Pittsburgh and haven't found one here in over 3 years.

If my husband only knew...if he only read this stuff....he would be so.......ummmm... Anyway...your "wub" face made me smile! THX

lol...I am sure many can give you several reasons! The 50K is also Vickie's "fault" anyway.

Awww, c'mon...I'm not feelin' the love! :0

That was my whole point in asking the question. So, it is likely you can pick up a virus from IVIG????!!!!....would that explain the mysterious "turning back of the pages?"

Okay, so, I know that IVIG goes through vigorous screenings for dangerous viruses....but, do they screen and remove "benign" viruses like EBV, etc? Could a batch of IVIG contain a live "benign" virus?

I used to think I knew the difference between viruses from bacterial infections, but I don't think I do. I thought viruses run their course, but bacterial infections won't go away without your body getting help from abx. But now, I've read a healthy body can get rid of most bacterial infections too. So, I'm not really sure how you tell the difference between a longer virus and a bacterial infection like myco-p? You don't.

Jill....Mycoplasma Pneumoniae is a bacterial infection.

WornoutMom....perhaps it was bad timing??

I think what Fixit is trying to say that if Breast implants are covered by insurance for self esteem reasons, our kids treatments should be covered by insurance for quality of life reasons. I don't think she is trying to downplay the seriousness and emotional impact of breat cancer. She makes a valid point. I am the daughter of a two time cancer survivor, my mom...breast and ovarian, so, I know the impact it has (and, we lost some women to ovarian cancer in our family)....if it came down to it...she would hand over her covereage for implants in a heartbeat for my kids sanity and to get the treatment they need. yes, I agree...there are many kids worse off than ours...hands down...but, these kids usually get the insurance coverage they deserve. I think she is just making an insurance comparison, not saying anyone should be denied treatment.

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