P_Mom

Yes,she will be looking into Lyme soon...great!! She also showed me several graphs she had that included several types of antibody levels in Lyme, PANDAS, ADHD, and Tourettes. They were all very different......the only thing similiar with the Lyme and PANDAS was Cam K activation (I can't remember if one was higher than the other).....the antibodies present were very different at many levels. Who knows! That is why I am so glad she got this grant and is researching this!!!

I thought this was interesting and pertinent to PANDAS/Lyme...... A quote from an article I was reading on Dr. Jones..... "He (Jones) started focusing on cancer in New York, but moved to Hamden with his wife to raise a family and start a pediatric practice in New Haven. In the late ’60s, he noticed clusters of kids — several in a family — diagnosed with juvenile rheumatoid arthritis. Many had strep throat, he says. “When we treated them [for strep] with antibiotics, they got better. That was the beginning of it,” Jones says."

You are sooooo fortunate to find a doc in your area! Way to go!!!!

What are We all atwitter about?? I am not degrading Dr.Jones....you might have missed I wrote "kudos to him for helping sick kids." I was commenting on the fees he charges to help these kids...and, yes, people with money will flock to him for his help...but, where does that leave the not so fortunate? I read several articles on him last night....I do know something about him...although, yes, no personal experience. There are many articles on him and all the controversy surrounding him...people should goggle him...there is plently of positive stuff, too, as well as negative. How in the world do you know what my intentions are? How do you know that I may or may not of HAD any intentions of seeing him??? That is presumptious. I have a vested interest in Lyme because of my diagnosis and the strange bite I got about 15 years ago before I had kids. Could congenital Lyme be at play here??? If Dr. Jones is the best for treating Lyme in kids....I would be interested in seeing him (well, not anymore..can't afford him)...I have taken my kids to the best PANDAS docs....IF Lyme were to play here...why wouldn't I take them to the best Lyme doc for kids?? Hence...my research. In my heart of heart...I do not believe my kids have issues with Lyme....but, it does stick in the back of my head because of the reasons I explained earlier...that is why I am on here, posting, and researching docs! Sorry you find that strange and sad. But, I am not going in blind, nor will I accept any info. thrown at me without researching it......I found out you have to be careful where you put your trust and money when I was seeking help for my kids with PANDAS.

ajcire... Thanks! Yes, sometimes we do just want to put pieces of the puzzle together when they don't fit. But, we have to try, I guess....that is how we learn. Yes, according to the PANDAS "experts".....Lyme does NOT cause PANDAS.....but, Lyme can aggravate existing PANDAS. And, they are two completely different illnesses.

I am not only posting on Lyme topics...I am on the PANDAS board, too. I have every right to post about Lyme on the Lyme forum. And, after I was diagnosed with "Lyme" I did spend much time reading all the "books" and going through extensive treatments....I am no bully or dummy....just giving my opinion so others can be made aware of some things to think about! P.s. I get many pm's with much support and agreement over some issues I post about....many people don't want to go public with their shared opinions because of, well, the kind of posts you replied with.(and I am sure you get them, too) So, please don't assume that "no one feels my anger." And, believe it or not...I had NOTHING to do with the seperation of the PANDAS and Lyme forum, absolutely NOTHING!!.......so, obviously there are many others that feel/felt as I do. Funny how you assume it is just me! I did thank Chemar AFTERWARDS!

As per Dr. T and Dr. K and Cunningham...Lyme is indeed a very different, seperate illness than PANDAS...completely different diagnosis. The only way they can "come together" is if a PANDAS kid gets Lyme...that can aggravate PANDAS symptoms. Lyme is NOT considered to CAUSE PANDAS. It is VERY important to differentiate between the two disorders because steroids can bring TREMENDOUS relief for PANDAS kids...almost miraculous. Many use this when flairs come to handle the flair...and it works wonders for them. However, steroids are extremely contradicted in Lyme....can make symptoms intractable. Plus, PANDAS is an immune dysfunction disorder that can be helped tremendously with IVIG to reset the immune system...or PEX to remove the antibodies. Lyme is not an autoimmune disorder..therefore, treatments are different....the only thing in common with treatments is antibiotics. Yes, I agree, be open...but, don't tell a suffering, impressionable teenager that they HAVE Lyme when there is no way any of us can say that. That is not being open, and, as the adults on this forum, we need to be careful with such cases!

Sorry, Lyme Mom...that particular docs fees are outrageous......only the wealthy have the luxury to afford to see him. That is a shame for the "less wealthy" kids....I know we could never afford that. Just my opinion........ In an article I was reading about Jones..... "Jones estimates the defense of his license over the months of hearings will cost more than $1 million. He is largely letting others solicit for and supervise his legal defense fund so he can focus on his practice, which remains all-consuming." And..... "Because of generous donations to his legal defense fund, he has been able to continue treating desperately sick children during the four years of legal proceedings. Feeling the pressure of the 37% increase in Lyme disease cases from 2006 to 2007, Dr. Jones's office is averaging three new patient calls a day." Kudos to him for getting children well...but, is anybody feeling my anger with the outrageous prices....and, then donors paying for his legal fees? I don't know....maybe it is just me g-night. In the end...I hope all the children get well!

Sorry, but I must of misunderstood your previous post when you said..."yay! A diagnosis!" Sorry about that....I thought that meant you had received a diagnosis. No one on this board should be telling you that you have Lyme...period. There is absolutely no way they can give you a diagnosis. Sorry, but it is true. That test you tested positive on is unreliable......you can get many false positives AND negatives. You can't go by that. The Western blot...which is specific for Lyme...was negative. That is a better test..however, even that can be wrong. Like I said...it is mostly a clinical diagnosis....Like PANDAS. I suggested you not dump PANDAS because it just seemd to me you MAY be....just by that statement I mentioned and everyone telling you that you finally found out what was wrong. You didn't get a positive Western blot...you got a positive Elisa...two entirely different tests. Your Western blot was negative. It seems to me people don't like to acknowledge the false positives because once they are set on Lyme...it SEEMS nobody wants to hear the tests may be wrong. You certaintly CAN get false positives...especially with the Elisa. Again...I am not saying you have or don't have Lyme.......I just felt everyone was telling you that you HAD Lyme without any right to do so. I would suggest you look into both Lyme and PANDAS. Did you have a second talk with your doc? Is he saying Lyme or no Lyme? Perhaps give him a call and ask for the name of a good infectious disease doc that can help you rule in Lyme...or, rule it out. Also, what about a phone consult with dr. K or Dr. T on PANDAS?

WOW!! Major expensive! The LLMD I saw up here in PA was 350 for the initial 2 hour visit! Then, 140 for follow-ups! He, of course, was not covered by insurance, but, they sent in claims anyway and it counted against my deductible. He sent me to get my bloodwork done (dozens of tests) at a lab that takes my insurance...so, that charge was covered and not included in the visit. As Emerson said on another thread..."it is disgusting that sick kids can't find treatment." (meaning no LLMD's in her area......it is....I agree!) However, it is also "disgusting" (per Emerson) for the LLMD's to charge sooo much money to help these sick kids!! I wonder how many are going untreated because they can't afford the prices! (and insurance will hardly ever cover them) Same goes for PANDAS and finding docs who believe...IVIG..etc. It is a shame. People are cashing in retirement funds, selling homes, etc.

Emerson, So, you received an official diagnosis of Lyme based on a positive Elisa? That test you got a positive on (the Elisa) is not specific for Lyme...it is just a screening test. The Western blot is the test that looks for specific antibodies to Lyme...yours was negative...right? I don't really get how you are being diagnosed with Lyme?? The tests are not accurate anyway....it is really a clinical diagnosis. The Elisa is notorious for false positives...that is why they do the Western blot afterward...to confirm it. Many antibodies can cross-react with the Elisa producing false positives. I am NOT saying it is not possible that you have Lyme....but, some are saying you have Lyme not PANDAS and there is absolutely no way they can say that based on what you have written and a positive Elisa. How can we diagnose you??? We can't! Please don't dump the PANDAS track....you have a bad history with strep. I am also NOT saying you are definitely PANDAS and not Lyme....how would I know!? But, please don't put all your eggs in the Lyme basket. Since there are no LLMD's in Texas (I guess that is why when I was at my LLMD the people in front of me were from Texas)...perhaps try an infectious disease doc. They are not as knowledgeable, but, it is better than nothing.....you may even find one that is knowledgeable (to some extent) with PANDAS. EAMOM....my more severe onset PANDAS sons ASO was 23 last time checked! (almost at your daughter's level) Older sons was 85.

SF Mom.... Just something jumped out at me....blood in your son's stool? YIKES! That can be very serious...it can be indicative of an internal bleed. What do the docs say about this? What are they doing?

Hey....just a reminder that Sheila put up this Lyme forum for all those dealing with or pursuing a Lyme diagnosis....and for all the questions associated with it. Just reminding in the event some people have missed it!

Please keep us updated. I know your daughter has never had high strep titers...neither have my sons. We never did IVIG or high dose antibiotics. If dr. K success rate is 75%, then we are there, too. But, yes, the high dose does seem promising. Wonder if it could mop up the remaining bit?? Let us know!

That is interesting....about the IVIG. I have a friend whose son had significant improvement after IVIG with dr. K....backslided, did a second IVIG with little or no improvement. I wonder if there is something to that? Do you think 100% is attainable?? I mean, Swedo's studies put the kids at 80% improved...whether they got PEX or IVIG. I just wonder.

EAMOM.....are you thinking of switching? If so, may I ask why?? I know how you always loved Zith.

I would have to ask....does the NRT really get PANDAS? I mean, does she REALLY get it? I am doubtful because there are about 3 or 4 docs that I know of that really get it. I would be careful. But..... like others said....so glad Pixie is doing well....best wishes whatever you decide! I am sure Dr. k is going to say it is fine to take her off....he believes these kids are cured after a year. Atleast, that is what he used to think.

I am just wondering if their could be any correlation between CamK and tonsils/removal? Anybody have any insight? Who has had tonsil removal and had Cam K drawn atleast a year after surgery? Results? What about the ones with tonsils? Are they higher? This could be just a shot in the dark....have no reason to think this other than my two PANDAS sons... the one with t&A had Cam K of 112... the younger with tonsils intact....162. Just curious. It could give some people on the fence about t&a good reason to do it if there seems to be a trend. But, if t&a was done close to Cunningham test....I don't think that would be a good indicator. My older son had his Cam K drawn 2 years after t&a.

Chest pain and shortness of breath are also hallmark physical symptoms of anxiety....which is a hallmark symptom of PANDAS.

MMC, How strange about Dr. Latimer giving 250 mg Pen VK once a day. We saw her a bit ago and she put my boys on it 2 x a day. Was this recently???? Also, to all...... I took my boys off antibiotics completely the past week before school because we weren't really doing much. There was no change and they continued to do well. I do absolutely want them on proph. antibiotics because I KNOW if they get strep, it will come roaring back. In their case, what do you all think about the old Swedo proph. dose of Zith? Like, twice once a day every 5 days or so? Anyone doing that? I don't know if I could even get it. They are currently back on 250 mg Aug. once a day because school started. This Aug. dose has worked for the last three years (well, minus a year when they were on PenVK...that also worked)......perhaps I should just stick with what is working?. But....it would be sooo nice to only have to give them pills once a week or so....I hate giving my boys pills. Plus, which is easier on the body/gut??? THANKS!

I do not believe we are the minority........it seems so because they are just putting the link together. Soon, we will be the majority. My opinion.

Sinusitis is inflammation of the sinus (can be chronic or acute).....it does not mean infection.(although, of course, it can lead to it)

Lyme Mom, I am interested in the "tell-tale physical signs (of Lyme) in addition to symptoms." Could you elaborate on that and let us know what the signs are that are present in addition to symptoms?. Thanks!!

I have tried to contact NBC regarding this several times....no response. The camera guy did tell us that people were having difficulty getting info. from NBC on their shoot.....we are no exception. I'll keep trying and will let you know as soon as I do. Kelly

HEY...SOMEONE GETS WHAT I WAS TRING TO SAY! Thanks, Ajcire...well said...now, Off to Fla. (armed with PenVk, Augmentin, and Steriods....you knever know! )