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What made you think Lyme?


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What made us consider Lyme is that after many years of treating my DD's severe PANDAS and trying every treatment under the sun, including ~15 IVIg infusions (which eliminated tics and violent rages completely), DD's anxiety and scrupulosity was only getting worse. It was another PANDAS/Lyme mom here who encouraged me to get my daughter tested. I never would have guessed in a million years that not only did DD have Lyme but so did I. And, if it was congenital, it could be the cause of her early diagnosis of mild autism and severe colitis. Now we are getting the treatment we need and DD's PANDAS seems to be in remission.

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My DS7 son was diagnosed PANDAS earlier this year.

 

He had a tick in his scalp last (for about 12-15 hrs) last fall.

 

During my visit with Dr.K I asked about getting my son tested for Lyme, and he asked if there was a rash at the bite spot. There was not, but it was on his scalp.....so I'm not sure if I would've even seen it.

 

My thought was why not rule that out since we had to go in for a blood work up anyway. But Dr.K said no need.

 

Do you think I should push for the test?

 

How would I know if there's any Lyme involment if we don't test?

 

Hi, Ziva:

 

We went through a similar quandary not long ago, so I thought I'd chime in as well. More detail is available on this thread:

 

http://www.latitudes.org/forums/index.php?showtopic=11408

 

So - in a nutshell - our ds seemed like classic PANDAS and was diagnosed with PANDAS by a local LLMD (originally SC, later PANDAS, after he initially suspected Lyme). Ds was doing well and making steady progress on traditional PANDAS treatments (IVIG, "Saving Sammy" dose of augmentin XR). However, the rest of our family had chronic high ASO titers. All of the recent posts on this forum about Lyme, Myco p., and other secondary infections made us paranoid enough to get our whole family tested for Myco p. and our PANDAS ds tested for Lyme / co-infections.

 

Turned out that all of us were negative for Myco (whew!). Our PANDAS ds's IGeneX results were more complicated, though; some borderline positives and mixed results. So we ended up going to another local LLMD (our original LLMD passed away in 2008) to help us interpret the results and chart a course. He agreed with the PANDAS diagnosis and advised us to "stay the course" with the existing treatment (augmentin XR).

 

So - for us - this provided enormous relief. A Lyme expert confirmed that we were on the right path, and he's become our "go-to" doc locally because he's a great guy and understands infection-triggered illnesses like Lyme and PANDAS/PITAND. This gave us an invaluable local medical resource and precious peace of mind! We continue to believe that our ds is "classic PANDAS," but we have somebody local whom we can count on in the event that PANDAS treatment stops working.

 

Dr. K is our out-of-state PANDAS expert, and we did 3 rounds of IVIG with him in Chicago. We love him: he started us on the "Saving Sammy" dose of XR when we begged for this, and he's one of only two docs our PANDAS ds ever liked! But - as Dr. K told us himself - he doesn't know it all and learns something new from every patient.

 

So we're glad we got the Lyme and Myco p. testing done, as a precaution. And we're glad we found a local doc (the LLMD) who "gets it" when it comes to these types of disorders. The IGeneX testing isn't cheap, unfortunately, but if your insurance will at least partially reimburse, it may be worth it. (For any parent in this situation, hard to put a price tag on peace of mind, eh?) ;)

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I think there are so many great posts on this thread. I look at the big picture slightly differently in that I do not think that my children actually have Lyme Disease and not PANDAS, but rather that my children had a neuropsychological response to many different microbes and that perhaps this response became an autoimmune reaction.

 

I think it is important to check for borrelia (lyme), bartonella, babesia, strep and mycoplasma to name a few because I think that it is vital to rid the body of all of the underlying infections in order to heal the autoimmune response. I think that Lyme is one of the trickier bacterias to treat because it lacks a cell wall and changes form. When faced with multiple antibiotics, lyme changes into a cyst form in order to hide. Mycoplasma also lacks a cell wall and can lead to many autoimmune diseases. Lyme and mycoplasma, unlike strep, often need multiple antibiotics.

 

Even though strep was our son's biggest PANDAS trigger and he initially responded to strep treatment, he was not healing completely and we needed to keep digging. I wish we had found the lyme before we did the multiple IVIG's. We are now using an LLMD who has helped us deal with strep, staph, mycoplasma, bartonella, babesia and klebsiella. We decided to treat all of the infections in our daughter (unlike our tactic with our son) before doing an IVIG and now that we have treated all of her infections, she no longer needs an IVIG.

 

So, my advice would be to check and treat ALL microbes!

 

Elizabeth

 

I LOVE this post! It sums up our situation very well.

To loosely paraphrase a recent past ILADS president:

PANDAS + Lyme is not like adding 1 + 1 = 2.

Rather, it is 1 + 1 = 2 to the power of 10 !

 

The two diseases interact with each other in such a way that the symptoms of each are compounded exponentially.

 

This thought helps me understand the "two steps forward one step backwards" progression of our son's treatment process.

 

This former ILADS president also said that he has taken care of pure PANDAS patients and pure Lyme patients but that the PANDAS / Lyme combination is the toughest to treat.

 

Trust your gut - if you want to test for Lyme do so. If you want to hold off and focus on PANDAS only do that. I know that any parent resourceful enough to make it to this forum will be able to assess their child's response to treatment and "dig deeper" if and when necessary.

Edited by RNmom
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Very interesting thread with lots of my favorite members contributing.

I am relatively new to pandas world and I do not claim to know anything about it but I am going to add some of my own thoughts just to have this interesting thread going.

 

My ds17 had a phenomenal success with pandas treatments but I am pursuing Lyme as well as pandas because of his physical symptoms that couldn't be answered by conventional medical testings. ( toe pain, yeast issue, headaches, fatigue)

I am very happy with the way my pandas son is and would not mind stopping further treatment either pandas or lyme at this point as long as there is some

assurance that my son will stay the way he is for rest of his life but there is none, is there? He is still young at 17 so he listens to me as to what to eat, what time to take his meds, what kind of friends to hang out with but will he listen to me in another 5 years?

I hope I am not scaring young pandas but there have been many cases of pandas resurfacing even after many years of remission so how or when can I say my son is cured of pandas? ( assuming there are cured people) Nobody can answer that, right?

 

Not all strep bacteria causes pandas and even among those causing pandas, one from New Jersey strain is different from one in California, right?

And apart from pandas there is pitand so doesn't it make sense to pursue other and more broader bacteria/virus treatment if pandas treatment is not working after lengthy time or there are some other issues that have to addressed?

I know that I have done the right thing by treating my son with pandas treatment and I think I am doing the right thing by going further with lyme treatment because I believe OCD/ADHD/mental deviation is treatable but there are several different ways for different people to get there

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I was up late & tired when I posted last night, & realize that I really failed to make my point as I had intended. I agree with Bill's preference for MCIDS (multiple chronic infectious disease syndrome); I hope the new name is something all encompassing like that. But it leads into the point that I was trying to get across yesterday.

 

This forum is called PANDAS *and* PITAND - I really want to put an emphasis on "and". Lyme *is* a PITAND. Why do we have to have this apologesis for it everytime the subject comes up? I don't hear this same resentment over myco p or clostridia or candida, etc. The narrow focus on strep is what delayed me from investigating this avenue YEARS ago. Who knows what difference it might have made if we had begun treating my ds before he reached the level where he could barely function? I pray to God that it is not too late, but it may be the difference between being able to bring him all the way back or not.

 

Meanwhile, I don't know at what point my ds18 became infected with Lyme. It could be the reason for the additive affect that lead to his dramatic nosedive last year, or it could be what set him up so that when he was exposed to myco p, he then nosedived. Or it could go back much, much further and be the reason that when he was exposed to strep, myco, etc over the years, he just kept sinking. Only God knows the answer.

 

But all of these microbes are capable of suppressing the immune system and making the body vulnerable to other microbes. It's important to have an idea of what you're treating before you start throwing meds at it - that's Healthcare 101. Especially when it comes to antibiotics.

 

pandas16, you appear to have a very strong opinion about this and your posts have conveyed to me that you seem to believe there is a lot of quackery involved (which hopefully will clarify things if you are wondering why some here might seem upset by your words). This honestly puzzles me because it is the same attitude that so many have about PANDAS. Including the fact that there are doctors out there who profess to be treating it when they haven't a clue of what they're doing. I would have thought with your experiences with PANDAS, you would be *more* open to PITANDs rather than *less*. Someone posted on this forum that Dr. Cunningham's tests turn up more PITAND cases than PANDAS - I believe it was something like 47% strep and the rest 'other'. Your strongly held opinion has about a 50-50 chance of leading to someone not receiving the best possible treatment.

 

Though I understand completely why Dr. Cunningham has found it necessary *as a researcher* to narrow her focus to proving PANDAS, for parents who come *here* seeking help, it is only right that they be informed of ALL the known possibilities that could be causing their problems. And also the possible consequences for missed diagnoses. Some patients with Lyme ended up with a more severe, intractable case because they were given steroids - as one of those overwhelmed parents who is going broke from all the testing, I STILL want to know that possibility exists while I am making my decisions. In the same vein as informed consent, most of us would like to make our treatment decisions with all the info available even if all we have is as yet unproven or anecdotal.

 

ziva, after all that I have learned about Lyme, if I saw a tick on my child, I would *absolutely* get them tested with at least an Igenex Western Blot - in fact, I would probably request treatment *anyway* whether I did the test or not and whether it came up positive or not. A child with strep is going to be a lot more vulnerable to borrelia & other tickborn infections and the last thing they need is something that will complicate their condition *exponentially*.

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I agree with most here. It is best to test for all of the suspected contributing microbes sooner rather than later. All of my PANDAS kids (three) plus my non- PANDAS and myself have tested positive for tick born infections now. As far as the newbies go, I wish that this type of exchange had been going on when I ended up being thrown into the PANDAS world. If so, my one son would have been diagnosed much earlier and would not have gotten to the point of possible no return as he has now. I would like to point out that this child was so classic PANDAS that Dr.K found it boring - although he went through over seven years of he!! before being diagnosed! This kid did respond positively initially to the PANDAS treatment but it did not hold! Now he is in a place that I honestly don't know if I will be able to pull him out of! Some doctors do not realize or admit what a HUGE complicating factor these other infections can be. I do not understand this! Although the testing is not cheap, it is less expensive in the long run to rule this stuff in or out so that the child is properly treated ASAP.

 

I strongly encourage all to keep an open mind when trying to diagnose and help your children. This should not have to turn in to a debate. Our kids futures are on the line. Who cares who is right or wrong.....these kids are sick and need the proper treatment.

 

I also would like to say that I think it is crazy for this doctor to tell a mother not to be concerned about Lyme with a confirmed tick bite. The same doctor told my friend not to be concerned about her son's tests results which showed Lyme, Babesia, and Bartonella. I am sorry but I find that ludicrous!! Based on my experience, I would definitely be concerned - this is nothing to mess with and you certainly don't want to give it a chance to take hold of your child! The sooner you catch it, if it is there, the better!

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Great thread! Makes you think about both sides, both diseases. What made me think lyme? Some really caring folks on this forum. THANKS to those folks for going on the PANDAS forum and finding suffering Newbies like we were! My daughter has lyme, we know that for certain from her tests. Does she have PANDAS? Maybe...we will keep seeing both docs until she is resolved. What parent here would not want all of the information? These diseases are both in states of ongoing research/investigation/study. Even the docs are admittedly still learning. The sharing of information is a good thing. The opinions are optional.

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I apologize if I offended anyone.

 

No offense taken.

 

My son got sick Nov 1997 and received no treatment. I am soooo glad you received treatment and can offer us your experience a/o opinions. I enjoy reading about them. I like to read about everyone's different views and opinions. I think understanding the immune system is the key. Eastern meets Western medicine. I think we have a lot to learn. We need better lab tests. We need to learn more about the different viruses and bacteria - and adapt because they are evolving at a fast rate. My classic pandas son reacts to different things like colds and allergies so I am very open to different ideas.

 

I also like reading all the different articles people post - there is no way to keep up or even find all the info available.

 

I hope your current treatment plan works and you get to 100%. Best of luck.

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I just want want you know that my son's hyper kind of behavior is gone as soon as I changed his probiotic.

 

 

pathfinder! -- can you elaborate? were you on that other post about probiotic and cytokines? it made me think my son's inattentiveness may be due to new probiotic. perhaps a d-lactate reaction. i've stopped it about a week now but no real change in behaviors.

thanks.

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I just want want you know that my son's hyper kind of behavior is gone as soon as I changed his probiotic.

 

 

pathfinder! -- can you elaborate? were you on that other post about probiotic and cytokines? it made me think my son's inattentiveness may be due to new probiotic. perhaps a d-lactate reaction. i've stopped it about a week now but no real change in behaviors.

thanks.

 

 

Here is the tread by Pandas 16 that talked about this issue

http://www.latitudes.org/forums/index.php?showtopic=13149

 

My son was doing well especially concentration area post IVIGs but 3weeks ago he became very restless with tic. That was very significant thing to me as his tic was not really a problem for him before IVIG. After following pandas 16 probiotics tread, I realized my son became ADHD like after changing to different probiotics. I put him back to his old probiotics and sure enough ADHD/tic gone.( one week) My next project is to find best probiotics for him.

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pandas16, I don't believe that it's about having offended anyone - frustrated is probably more accurate.

 

Consider how you would feel if someone stated that they had researched PANDAS for a day or a week or a month and had concluded that it looked pretty uncertain/ unlikely/ useless and that they did not feel people should waste their time or money when the neuro-psych research is far more extensive & reliable, & there are perfectly good psych meds that could, & therefore should, be tried first as that is more of a sure thing.

 

I'm not trying to tell you to go away. I hope you don't leave in a fit of pique. You sound pretty bright & that's a gift; however, the more knowledge a person acquires, the more they realize how little any one of us can really know. That is why humility is the hallmark of a true intellectual.

 

Please stay. We are very open to the knowledge & experiences that you have to share with us. You might even discover that some of us have worthwhile info to share as well. But understand that most of us come to this forum to get relief from the people who treat us like dupes - or worse. I'm just asking you to give us the same respect that you want others to give you - recognize the extreme fallibility of your opinion when you express it just as you would want PANDAS scoffers to do.

 

~Grace

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Guest pandas16

I never said in exact words that I thought Lyme was quackery. I think Lyme disease is a real disease and I have not been researching PANDAS for a week. I've had the disease for 14 years. Lyme, I have genuinely began to research. I do not understand it fully- what I do understand is that rheumatic disease can interfere with the test however I'm not completely closed to it by any means if PANDAS treatment doesn't work after a certain period of time. By the way, she never said once that traditional PANDAS treatment was ineffective.

 

In my experience, if I had waited to treat PANDAS with aggressive immunomodulatory treatment and instead went with Lyme- I would not be functional today. Therefore due to my personal experience, I genuinely say treat PANDAS first since she was given a diagnosis of PANDAS for her child. I have a right to an opinion. Holy crap. I'm not treating anyone like a dupe. I don't know everything by any means. I stating my sincerest opinion based on my life living with PANDAS, my research of PANDAS and my experience that I've gained from doctors. I genuinely do not want to speak about this topic anymore. ARGH With all due respect, dont' take everything so personally.

Edited by pandas16
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I want to respond to Zeva's original post.

 

My dd was dx'd back in 5/09 with PANDAS, 6/09 with an Immune deficiency disease and 9/09 with another autoimmune illness called eosinophilic esophagitis. In July of 09, she received hdIVIg and has continued to receive ldIVIg every 4 weeks since. She was also placed on proabx. We immediately saw results with the hdIVIg and continued to see an improvement after every IVIg. By May of 2010, I would have had no problem saying she was in remission with the PANDAS. We did see two blips in the prior winter (09-10) but they were quickly resolved with a treatment of Omnicef. In fact, I became so comfortable with how she was doing that I stopped posting and reading because I wanted to put the whole thing behind me and move on.

 

In November 2010 my dd became ill with some probable viral infection. Two weeks later she had a double ear infection. Two weeks later another fever and mystery infection. The following week another infection, etc.... We finally pulled her out of school in January and she hasn't been back since. To our knowledge, she never came in contact with strep this year (504 plan states school has to call us if in her grade or brother's classroom). No one in our family has been sick either this year except her. Since January her behavior has become increasingly more aggreviated and violent. She is having raging attacks that are 10 times worse than anything she had with PANDAS. No other sx's of PANDAS have returned (tics, OCD etc...). My dh and I are beside ourselves with what is going on. My gut tells me this is something more than PANDAS.

 

So at the insistance of a great friend that I have stayed in contact with from this forum and now the Lyme's forum, I have decided to pursue possible Lyme's as a dx. WHY? Because almost 20 years ago I had a bullseye rash after camping in KS. I never developed any sx's of Lyme's myself so over the years I just forgot about it. In the years since-I've been dx'd with SAD, Fibro, IBS, RLS, brain fog, gluten and dairy intolerance, debilating fatigue, a PVC and I have experienced peripheral neuropathy, symptoms which could easily be Raynauds, problems concentrating, memory issues, etc, etc etc.....

 

I noticed a pattern with my PANDAS dd around age 2--Everytime she became ill with any type of infection she would have significant behavorial changes. Often these changes were the only thing that would alert me to illness. She has also had unexplained fevers her whole life-high fevers of 103 that never seemed to stop her in her tracks. She also always seemed "not well". I spent the next 5 years telling my husband that I believed she had some kind of infection somewhere in her body that the Doctor's just couldn't find.

 

So I sit here today-after three months of the worst heXX that we have lived through yet-amazed at how many sx's both of us have that could easily be Lyme's. I wish two years ago when I first started on this forum that Lyme's would have been a topic of conversation among of us. I wish somebody would have said "you know what-maybe you should test for Lyme's too just to be sure." I really wish someone would have told me 20 years ago to get treated myself but I'll have to let that one go and move forward with whatever the outcome is. <_<

 

I ordered two test kits from IgeneX on Friday....

 

(By the way-a large majority of the Moms who were posting on the PANDAS forum at the same time as myself are now Lyme's Moms)

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