Terrified.

[EmersonAilidh]

SFMom - The only time I can recall ever having been bitten by a tick was five years ago. So if it is Lyme Disease it's more than likely into the third stage. Where is your son as far as progression goes? I honestly hope that we go down the Lyme path. All I want is to feel better. I don't care what it takes or what I have. I'm so glad that you got a diagnosis! & I've been talking to some Lyme people on the forum.. the general opinion seems to be that Texas has NO LLMDs. How can that be possible when we have so many ticks?! I don't think that my Mom would be willing to drive me out of state. :/ The closest is Oklahoma, & if we have none I highly doubt that they have any.

 

I hope you & your son are doing well!

[KeithandElizabeth]

Emerson:

 

Pitand's definition is:

 

PITAND - Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorders

 

Basically, I believe PITAND refers to the same symptoms as PANDAS, but with a different microbe than strep causing the symptoms. So, for instance, some families have children with PANDAS symptoms who do not have elevated strep titers or have PANDAS symptoms in response to other infections, such as mycoplasma, lyme disease, bartonella, etc....

 

After all that our family has been through this year, I would highly recommend that you do the IGENEX test to confirm the lyme aspect of this illness and double check the mycoplasma titers because elevated IGG levels have also caused problems for many of these children.

 

I know that Texas is lacking in ILADS doctors. Please feel free to PM me about some potential doctors who are close to you and I would still contact ILADS to get their list of doctors who are near you.

 

Elizabeth

[EmersonAilidh]

I PMed you.

 

Would it be possible to have P.A.N.D.A.S. & other PITAND microbes?

[EAMom]

UUUGGGGHHHH my post erased.

 

 

Here we go again...

 

EAMom - Just found out that my ASO was only thirtyeight as well. Third low titer ever. Go me. He seemed pretty adamantly against titers being viewed as diagnostic, as well as the P.A.N.D.A.S. Messiah *wink wink*, but he said that he was very selective in diagnoses. My only guess is that he said so because my titers were normal & he only diagnoses patients when they are "totally nonfunctional". Still a bit blunt for someone who's met me once, though. & I thought that about the antibiotics too!

 

 

Ohhh. My dd's ASO was 17 at one point (april 2009)...so we have you beat!!

 

So, maybe PANDAS cases have to be obvious clear-cut "text-book" cases for him to diagnose? So that doesn't mean you don't have PANDAS, he just isn't comfortable diagnosing it in your situation. And that doesn't mean a more PANDAS knowledgeabe doc woudn't call you PANDAS.

[cobbiemommy]

My DS, 11, was diagnosed with Lyme on 8/23/10 based on testing done in August of LAST year. He started the stronger antibiotics and seems to be doing better than any time except the first two weeks post IVIg. He feels better, looks better, is more reasonable, and not so rigid in his thinking. I tell you all this, because I think when you get the proper treatment, you will feel better, too. You need lots of rest right now, good food, and antibiotics when they are prescribed. Our LLMD told us anywhere from 8 months to 2 years for treatment of lyme, he also said he thought children could have Lyme and Pandas. If you think of the ongoing infection (lyme) activating the immune system and the overactive immune system attacking the brain, you could see where it is a chain reaction effect. Believe it or not, this is good news. Good luck and know that we are pulling for you.

[thereishope]

I'm not that familiar with Dr Goebel. How well versed is he on PANDAS and PITAND? Since you said the tick bite coincided closely to your first onset of symptoms, I would raise a red flag for Lyme too. With either diagnosis, you should be geting antibiotics and help now. Keep us posted!

 

edit...In your signature, you say onset was at age 2. What is it that makes you think it was at that age? Perhaps you have a double whammy...PANDAS and Lyme?

Edited September 1, 2010 by Vickie

[EmersonAilidh]

CobbieMom - I think that this is good news too! No doctor would ever come out & say "You have P.A.N.D.A.S." on paper for me, but with a positive Lyme test I now have something to shove in my the face of my school & everyone else who's dismissed me as just another hypochondriac. The only downside to this, & unfortunately it is quite a downside, is that there are, get this, NO LLMDs in Texas. That has been the response from every single person & organization that I've contacted. The Texas Medical Board prosecutes anyone treating Lyme Disease, from what I've heard. Takes my lack of P.A.N.D.A.S. treatment anger to an all new level... I have no idea what to do from here. I have a positive Lyme test & no doctors within the state. I've asked around about Chicago since I have family there (how I was expecting to see Dr. K earlier in the year) but haven't heard back from anyone yet. WHY is treating Lyme illegal?? I know P.A.N.D.A.S. is "controversial", but having your medical license revoked for treating a sick patient is just.. disgusting.

 

Vickie - He said that he has had a few patients, but that he is no specialist. He knew MUCH more than some doctors I've talked to but I don't think we'll be adding Dr. G to our acronym list anytime soon. & I really need to change that to four but I can't figure out how.. I've been twitching since then & I've had anxiety, compulsions, & a nasty relationship with strep for as far back as I can remember. It said two because my first motor tic came with talking, but my Mom remembered that it started when we lived in Grand Prairie, not Fort Worth, which would have made me four. Double whammy, triple whammy, quadruple whammy.. I don't care, just make me feel better! I've been in one of those "angry-at-the-world" moods today, if you can't tell.

 

It went from "YAY! A DIAGNOSIS!" to "Wow. Another thing that I can't find treatment for."

I've really got to stop hogging all of the controversial ones.

[EAMom]

WHY is treating Lyme illegal?? I know P.A.N.D.A.S. is "controversial", but having your medical license revoked for treating a sick patient is just.. disgusting.

 

 

I agree.

 

They explain lots about the of the politics of Lyme in Cure Unknown.

 

http://www.amazon.com/Cure-Inside-Epidemic-Pamela-Weintraub/dp/0312378122

 

and

 

http://www.cureunknown.com/

[P_Mom]

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.

Edited September 1, 2010 by P.Mom

[EmersonAilidh]

P.Mom - Okay, now I am more confused than EVER. I never said that I had been diagnosed with Lyme. I posted what the doctor told me.. & everyone told me that meant that I had Lyme. I never dumped the P.A.N.D.A.S. track - I twitched before the tick bite. But before your post everyone I talked to had said "Congratulations on your Lyme diagnosis!" or something to the effect of "Now that you know what's wrong.." All I heard about were the false negatives on the Western Blot. I asked a billion times about false positives & no one answered... I am so horribly confused now. :/

[P_Mom]

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?

[EmersonAilidh]

I didn't mean it like that. It was just hopeful. I had a doctor who hasn't called me back to answer my questions & when I just posted the tests the general response was "Well now that you know you have Lyme"... You can imagine why that would be more than a little confusing. I didn't list a bunch of symptoms & ask "Hey, does this sound like Lyme?", I posted test results & had them explained to me. i do trust the people on this forum, but I would never call that a diagnosis.

 

I've read all about the unreliability of Lyme tests, which is the whole reason that I posted. I still don't know what labs they were done at. Before your post, my questions about false positives (there is another post on the Lyme forum) had kind of gone unanswered. I was told that it was difficult to read positive on the first test even when you had bad Lyme & that it was all too common to read negative on the second test in the same situation.

 

I haven't had a phone consult but I have emailed Dr. K. He told me that he believed I had P.A.N.D.A.S. I still believe that I do. As I said to EAMom, I was twitching before the tickbite. When I say symptom explosion, I mean when they all got horrible overnight & made themselves known & undeniable. & I understand your concern! I haven't taken what anyone said as a diagnosis or anything like that. Mainly they just confirmed my feeling that I should see another doctor. Whether I posted it or not I planned on finding an Infectious Disease doctor anyway. From there, who knows. For now, I'm just confused & still feeling bad.

I can't remember who said it but on the name-change topic someone said that they could call it S### on Toast Syndrome for all we cared. I do not care what I have. I just want to enjoy my teenage years like I should.

[tired mom]

You never cease to amaze me. Hang in there kid, things will get better. I have been on this journey for a very, very long time with my daughter. The irony of all this is that most of us are parents on this forum and we are searching for answers for our child. You are the child and seeking help. For most us here it was our gut feeling that lead us seeking answers. We knew our children were suffering from much more then a dx of ocd or tics. The dr. you saw may be very good but not good enough to help you with your situation. Your gut feeling is most likely right. I have said a million times that I have no doubt that strep fired the gun and now there is all kinds of bullets. My daughter went away to college on Sat. Eight years ago I was thrown into this bizarre world. I have lived through some horrible times and we survived. My daughter is now 85% bettter. From what I have read that is as far as some get. We did not do IVIG or PEX or any longer then 3 months of abx and yet there is healing. Believe me if I knew then what I know now I would have sold my soul to get her PEX. What I am trying to say is maybe as time goes on you will start to feel better. Giving you a big hug from one of your cyber mom's...

[mandyknowles]

I had my bloodwork done the Friday before this past one. I thought it was weird that we hadn't heard from him since he said it would take three days, so I had my Mom call the office this past Friday. The nurse said Goebel would be calling us, & he didn't. All the while in the back of my head I'm thinking "Here we go again.."

But my Mom called back today & the nurse said that "something was abnormal". When my Mom asked what, she said that she couldn't say. She told us that the reason Goebel hadn't called us back yet was that he had been consulting an ID specialist. I don't think she realized that I know what an ID specialist is, & that I know everything I was tested for. The only infectious disease that I was tested for was Lyme Disease.

He's supposed to be giving us a call back before the "business day" is over, but, no offense to Goebel, I doubt that'll happen. So, for now, I'm sitting here absolutely terrified because I know just about nothing about Lyme other than that it's BAD. My tick bite was about five years ago (same time as major onset). Can any of you Lyme Moms fill me in a bit on what exactly Lyme is? As far as I know.. A tick bites you & everything gets messed up. I'm so scared.

 

well, my daughter has lyme disease. she couldnt walk for months and she actually couldnt sit up for months. so, actually what are ur symptoms?

[KeithandElizabeth]

Cobbiemommy:

 

This is a great post. Thank you for sharing the news that your son is doing better!!!!!

 

Elizabeth