Jump to content
ACN Latitudes Forums

What made you think Lyme?


Recommended Posts

Great thread, thanks to all who have contributed.

(This exact type of back-and-forth discussion is what has helped us to "think outside of the box" and to TRY different things to help our children these past 3 years, thank you.)

 

WD noted, in a previous thread: "So I wanted to ask this question. There've been a number of posts about Dr. Cunningham acknowledging that Lyme sufferers can test positive on her CaM kinase II "PANDAS" test. Lyme and PANDAS obviously share a strong infectious component, and maybe an autoimmune component too. So, by the same token, is it possible that kids who are truly PANDAS may test "slightly positive or indeterminate" on the standard Lyme tests?...

 

There is a lyme doc in MD who has stated on his online blog that at least one lyme test, the C 6 Elisa, can "seroconvert" ie., show a false positive, if the person has BEEN ON ANTIBIOTICS...

 

I mention this because in our case, we did have both Ps kids tested--HIGH Cam Kinase during exacerbations, one was neg. for lyme on the Western Blot, one had a few high bands. We followed up with the C6 lyme test w/ a well respected LLMD, the d tested was positive for lyme on the C6...though she had been on Augmentin XR 2000mg a day for a year when tested.

 

Thus, after reading that at least one llmd suggested that some may seroconvert, and show a high false positive...what is a Mom to do? :) We followed the advice of a lyme doc. to treat her for 6 weeks w/ Doxy. and then moved back to Ps treatments, as she did have sudden-onset OCD, and I can't get around the fact that this + the urinary issues, + ODD, + handwriting, etc. fits Ps. thanks for the discussion--

Edited by T.Mom
Link to comment
Share on other sites

  • Replies 70
  • Created
  • Last Reply

Top Posters In This Topic

Great thread, thanks to all who have contributed.

(This exact type of back-and-forth discussion is what has helped us to "think outside of the box" and to TRY different things to help our children these past 3 years, thank you.)

 

WD noted, in a previous thread: "So I wanted to ask this question. There've been a number of posts about Dr. Cunningham acknowledging that Lyme sufferers can test positive on her CaM kinase II "PANDAS" test. Lyme and PANDAS obviously share a strong infectious component, and maybe an autoimmune component too. So, by the same token, is it possible that kids who are truly PANDAS may test "slightly positive or indeterminate" on the standard Lyme tests?...

 

There is a lyme doc in MD who has stated on his online blog that at least one lyme test, the C 6 Elisa, can "seroconvert" ie., show a false positive, if the person has BEEN ON ANTIBIOTICS...

 

I mention this because in our case, we did have both Ps kids tested--HIGH Cam Kinase during exacerbations, one was neg. for lyme on the Western Blot, one had a few high bands. We followed up with the C6 lyme test w/ a well respected LLMD, the d tested was positive for lyme on the C6...though she had been on Augmentin XR 2000mg a day for a year when tested.

 

Thus, after reading that at least one llmd suggested that some may seroconvert, and show a high false positive...what is a Mom to do? :) We followed the advice of a lyme doc. to treat her for 6 weeks w/ Doxy. and then moved back to Ps treatments, as she did have sudden-onset OCD, and I can't get around the fact that this + the urinary issues, + ODD, + handwriting, etc. fits Ps. thanks for the discussion--

 

This is not directly a response to your questions TMom but your note got me to thinking about some additional information I can share.

 

 

Earlier this year I updated Dr. Cunningham on my son's progress and additional information that he had tested positive for lyme and co-infections (well really just bartonella) since we tested with her. Also worth noting that some doctors think my son was infected with TBIs for over a year and others under a year at the time of testing. My son's Cam Kinase II score was 126 - so pretty borderline. Below is her response.

 

Thank you very much for emailing us. We will put this email in his file as

we do need to know this information because we are beginning

a statistical analysis of our large cohort of patients. His CaM score

is so low that I suspect that the disease manifestations were primarily due

to the infection alone and not as much to autoimmune responses, but we will also

look at his anti-neuronal antibody titers to our 4 antigens.

 

So if I'm reading this correctly, the "infection alone" portion (vice autoimmune) might be the clue that my son is dealing more with TBIs (or other infections) than the Pandas right now. This is all in hindsight but I'm confident that research like this will ultimately focus us on the correct options sooner. That is after we spend years finding doctors who will listen to us! :angry:

 

bill

Link to comment
Share on other sites

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. I"M DONE with this topic.

No, you did not express it in those words. And I don't doubt the sincerity of your opinion or your personal experience - with PANDAS. However, it was made very clear that you hold a large amount of skepticism in regards to Lyme - just not how far it extends. That's fine - you're certainly as welcome to your opinion as anyone. It's the certainty with which you express it that is frustrating. Even the majority of experts on the subject of Lyme do not speak with the certainty that you do - and they have years of study compared to your ... glancing interest?

 

Have you ever been bit by a tick or tested for Lyme? The only Lyme experience you mention is having looked into the subject for a brief time. The OP stated that her child was only just recently bitten so it's not like she has had the opportunity to wait & see if the PANDAS treatment is going to eventually fail. But I would think we would all recognize that as an opportunity that her child can't afford. From what little I have been able to learn of Lyme so far these last few months, Lyme treatment is *more* aggressive than PANDAS not less - it appears that Lyme treatment is not generally likely to allow strep to flourish nor encourage auto-immunity even if it did miss that mark; whereas, several of the PANDAS treatments can allow Lyme to do so.

 

Multiple co-infections means that a person can be a PANDAS *and* a PITAND. It's not like strep makes you impervious to borrelia. In fact, it appears to be very much the opposite. Go ahead & express your opinion & experience - just be fair & respectful enough to be honest about their limitations. Please treat the Lyme parents with the same respect you would like to be granted by PANDAS skeptics.

 

Don't take it so personally? I have no choice - Lyme has claimed my son & I'm fighting for his life. Your experience with PANDAS surely has taught you that it doesn't get much more personal? And as much as I dislike conflict, if there is anything that I can do to spare anyone else from going thru this nightmare, I will do so. I would think those affected by PANDAS would be the first to empathize.

Link to comment
Share on other sites

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. I"M DONE with this topic.

No, you did not express it in those words. And I don't doubt the sincerity of your opinion or your personal experience - with PANDAS. However, it was made very clear that you hold a large amount of skepticism in regards to Lyme - just not how far it extends. That's fine - you're certainly as welcome to your opinion as anyone. It's the certainty with which you express it that is frustrating. Even the majority of experts on the subject of Lyme do not speak with the certainty that you do - and they have years of study compared to your ... glancing interest?

 

Have you ever been bit by a tick or tested for Lyme? The only Lyme experience you mention is having looked into the subject for a brief time. The OP stated that her child was only just recently bitten so it's not like she has had the opportunity to wait & see if the PANDAS treatment is going to eventually fail. But I would think we would all recognize that as an opportunity that her child can't afford. From what little I have been able to learn of Lyme so far these last few months, Lyme treatment is *more* aggressive than PANDAS not less - it appears that Lyme treatment is not generally likely to allow strep to flourish nor encourage auto-immunity even if it did miss that mark; whereas, several of the PANDAS treatments can allow Lyme to do so.

 

Multiple co-infections means that a person can be a PANDAS *and* a PITAND. It's not like strep makes you impervious to borrelia. In fact, it appears to be very much the opposite. Go ahead & express your opinion & experience - just be fair & respectful enough to be honest about their limitations. Please treat the Lyme parents with the same respect you would like to be granted by PANDAS skeptics.

 

Don't take it so personally? I have no choice - Lyme has claimed my son & I'm fighting for his life. Your experience with PANDAS surely has taught you that it doesn't get much more personal? And as much as I dislike conflict, if there is anything that I can do to spare anyone else from going thru this nightmare, I will do so. I would think those affected by PANDAS would be the first to empathize.

 

Yes I pursued Lyme testing- I ignored the positive IgM bands which are apparently "definitive of bb" and I am getting steadily better with immune related treatment. I am only trying to help as well- I already stated very clearly that I don't know everything by any means. However I can find medical documents to back up the facts that I stated earlier. Ironically, if theres one thing PANDAS taught me for all these years with the disease- its toughen up and don't take everything so personally. And no- I think that Lyme treatment in most cases is less invasive/aggressive. Having a central line put in your heart and cleaning all of your blood or receiving IVIG seems more complicated than antibiotics and cyst busters. For the most part- that is what it seems like people on the Lyme forum are being prescribed, although I'm sure there are cases when Lyme treatment has become invasive as well. I also have no doubt that herxing can be very difficult as well. I have not been disrespectful in any of my posts- I never once denied Lyme existed- I never once said I knew it all. I stated facts which I can back up with medical documents and personal experience.

 

I understand what you're going through is difficult because I've been through it and was not blind to how my parents were when things were at their worst. However, if you're over emotional because of your current situation and interpreted my posts in a condescending way- (which they were not meant to be) At this point, I could care less. I'm fed up. (and yes that was disrespectful, but your unmerited lecture or respect annoyed me) All I have done is agreed with her doctor because her doctor suggested a treatment that got me well and her doctor has a PHD. I think the idea of multiple co-infections weakening the immune system is interesting and but if simply by treating strep- you get yeast, getting rid ALL of the co-infections- since most of the body is microbes seems illogical to me. Please stop responding to me, I do not wish to be part of this conversation anymore.

 

Me: If I had pursued Lyme- I wouldn't be functional. You: If you had pursued Lyme earlier your son would be functional. Two different people- two different opinions. THE END. Ziva I wish you the best of luck - I'm sorry about this being blown out of the water- at least you have a lot of different opinions though. I will not look at this specific topic anymore.

 

Side note: PEX does not allow Lyme to flourish and depending on the dosage of IVIG it can either stimulate or suppress the immune system.

Edited by pandas16
Link to comment
Share on other sites

I would respectfully request that we drop this line of discussion and get the topic back on track in terms of answering the original poster's question. People on both sides of this debate are passionate, and things get misconstrued that cause hard feelings... but Pandas16 has already graciously apologized for any offense she may have caused on this thread (see Post #53). As an actual "PANDAS survivor," her perspective is invaluable on this forum, and the war wounds she's suffered understandably make this discussion very personal.

 

I've seen this debate flare repeatedly on here, and it tires me out. I believe folks on both sides have good intentions and are sincere, but I can point to past posts that have been equally painful for us "classic PANDAS" folks. In particular, I recall one post from a new member in the early days of Lyme presence here (before ACN spawned a separate Lyme forum) where the poster actually stated that someday, the medical community will realize that all PANDAS is really misdiagnosed Lyme disease. At the time, this disturbed me profoundly. I didn't respond - didn't see any benefit - but that statement haunted me for weeks. Just as Lyme folks have experienced, those of us with PANDAS-afflicted children have had to battle fiercely against the medical establishment denying the existence of PANDAS, refusing to treat it, dismissing it as "bunk," etc. This forum has been the one safe haven where we can take refuge from that exhausting fight and commiserate with others who accept the reality of the disorder. We should not have to fight the same battles on this forum.

 

Sharing info is healthy. Debate is healthy. Both PANDAS and Lyme are complex disorders with no conclusive diagnostic tests and significant symptom overlap. But let's agree on one thing: they both do exist. Since the medical community can't agree on how to tell them apart or when to test for what, it's no wonder we struggle with those issues here!

 

So - for those of us who did pursue Lyme testing - can we get back to sharing "What made us think of Lyme?"

 

 

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. I"M DONE with this topic.

No, you did not express it in those words. And I don't doubt the sincerity of your opinion or your personal experience - with PANDAS. However, it was made very clear that you hold a large amount of skepticism in regards to Lyme - just not how far it extends. That's fine - you're certainly as welcome to your opinion as anyone. It's the certainty with which you express it that is frustrating. Even the majority of experts on the subject of Lyme do not speak with the certainty that you do - and they have years of study compared to your ... glancing interest?

 

Have you ever been bit by a tick or tested for Lyme? The only Lyme experience you mention is having looked into the subject for a brief time. The OP stated that her child was only just recently bitten so it's not like she has had the opportunity to wait & see if the PANDAS treatment is going to eventually fail. But I would think we would all recognize that as an opportunity that her child can't afford. From what little I have been able to learn of Lyme so far these last few months, Lyme treatment is *more* aggressive than PANDAS not less - it appears that Lyme treatment is not generally likely to allow strep to flourish nor encourage auto-immunity even if it did miss that mark; whereas, several of the PANDAS treatments can allow Lyme to do so.

 

Multiple co-infections means that a person can be a PANDAS *and* a PITAND. It's not like strep makes you impervious to borrelia. In fact, it appears to be very much the opposite. Go ahead & express your opinion & experience - just be fair & respectful enough to be honest about their limitations. Please treat the Lyme parents with the same respect you would like to be granted by PANDAS skeptics.

 

Don't take it so personally? I have no choice - Lyme has claimed my son & I'm fighting for his life. Your experience with PANDAS surely has taught you that it doesn't get much more personal? And as much as I dislike conflict, if there is anything that I can do to spare anyone else from going thru this nightmare, I will do so. I would think those affected by PANDAS would be the first to empathize.

Link to comment
Share on other sites

Hi ziva,

 

My dd11 had a known tick bite in 2006. There was no rash and the tick was not engorged. The pediatrician gave the standard AAP advice, "no rash, no treatment." I have a BIL with Lyme disease, so I called him. As someone who suffers from Lyme disease, he was frustrated by my ped's "do nothing" attitude. What harm would a preventative course of abx do? Anyway, he suggested I send the tick itself to Igenex for testing, which I did and it came back negative.

 

If I pulled a tick off of my kids today, I would do two things; 1) I would save the tick and have it tested through Igenex (you don't need a doctor's script and it isn't that expensive, somewhere around $75) and 2) I would investigate what a preventative course of abx looks like in a fresh bite, it is probably different and much less complicated than what is prescribed for those treating chronic lyme.

 

I'm not positive about this, but I believe any Lyme testing wouldn't reveal much about a fresh bite? I think a certain period of time has to pass by before the results are indicative one way or the other. And even after (whatever that certain period of time is), there doesn't appear to be any conclusive way to rule out Lyme that everyone can agree upon, thus all the previously posted robust debate. You are then left with "more likely" scenarios and "less likely" scenarios that ultimately leave the final decision to you.

 

Do you remember when you were pregnant and the OB asked you "When your baby is delivered, do you want to save the fluid from the cord?", you had to make a decision based on your family's hx and weigh whether you could afford the cost of that service versus the risks of not doing so. Thorough Lyme testing and evaluation by an llmd will probably cost you the same amount of $$$ as saving the fluid from the cord. If your health care dollars are limited, you need to spend them wisely. Unfortunately, there is nothing anyone on the forum can tell you that is going to circumvent the fact that you need to do your own cost/benefit analysis of your time and your financial resources.

 

FYI- Even though I had that report from 2006 that stated the tick was negative, I had my dd tested through Igenex Nov. 2010. For the Lyme testing and co-infections, it was over $900. Her testing was CDC and Igenex negative; that in combination with my assessment of her symptom set and clinical hx was enough to satisfy me that we need not invest anymore time or money in pursuing Lyme or Lyme specialists. Some on here will disagree with that decision. We spent the $900 because 1) Dr. B asks for it if you can upon initial consult, 2) she had a known tick bite and 3) all of what I had read on this forum. Some will say any IND band or Band 41 need to be investigated by a LLMD, so unless all testing comes back completely neg. and clean as a whistle (doubtful), you will find those on this forum advising you to continue to invest your time and money pursuing Lyme. There are no conclusive Lyme rule outs. As far as symptoms go, I think the best you will be able to do is "more likely" and "less likely."

 

Best wishes that everyone finds their child's path to wellness.

Link to comment
Share on other sites

pandas16, while I do appreciate your apology, please understand that I pursued this because this is not the first time you have expressed yourself in a way that generated consternation. I realize that you are young; I hoped that I could explain it in a way that would allow you to appreciate what is triggering it so that we could avoid future repetitions. Again, I would recommend reading "Cure Unknown" by Pamela Weintraub - it will not only supply you with a generous list of references , but also supply much of their historical/political context. Don't worry, I feel that I have explained my perspective quite fully enough & have no intention of pursuing it with you any farther.

 

Worried Dad, I am actually entirely of your mind on this. I wish we could move on. I have not really spoken on this topic before, but I am totally frustrated that it keeps coming up over & over again - and I felt that way before my son tested positive for Lyme. Someone who is new to these forums & unaware of the danger of checking their brain at the door of ANY doctor's office may be detrimentally confused by this kind of thing. And yes, I do also realize that this problem of making such unsupported definitive statements comes from both sides of the divide. This should not be Lyme against PANDAS & vice-versa. None of these doctors - no matter how awesome - is infallible and none of the research is either. All have their limitations - as doctors & researchers will be the first to tell you. JAG10's "more likely and less likely" is a better way of describing these things.

 

My apologies to all who are annoyed by my annoyance! ^_^

~Grace

Link to comment
Share on other sites

I'll keep this as short as possible and answer the original question-

 

My DD did not have the exact "sudden onset" that a lot have. She had her first unexplained fever at a few days old, was never tested for strep, had periodic fevers that eventually followed a pattern- worst during March and Sept of each year, with no other symptoms other than increase in aggression. Symptoms worsened after she weaned at 3 1/2 yrs old.

 

At 4 1/2 we saw Dr. O'Connor in Charlotte for allergies and she could not find anything, but was intrigued and rec. getting tonsils removed. We did that and the ENT berated me for "multiple bouts of untreated strep"- the worst tonsils he had ever removed. Dr. O'Connor had not heard of PANDAS at this point, unfortunately.

 

At age 5, we had a bad case of pink-eye and the aggression increased. A year later, we changed peds and she was testing pos for strep frequently- with no other symptoms but fevers and sometimes bed-wetting. At age 7, she was so aggressive that we did an outpatient psych program for almost 2 weeks and was put on SSRIs which made things worse. She was also dx w/Tourette's at this same time. We did therapy for a year, searching nightly online for clues as to what might be going on. During this time, she developed paranoia and was talking to inanimate objects, as well as the aggression increasing and depression starting, tics worsening.

 

We got our dx of PANDAS from Dr. K just weeks before her 9th birthday. She did the steroid burst and was a totally different child (totally stable) while on the steroids- and crashed and was the worst we have ever seen her when she stopped. She got bumped up to THAT VERY week for IVIG because otherwise she was going to be put in a pysch ward- living with her was just too dangerous- for both us and to herself.

 

After hdIVIG w/Dr K, she had a really explosive 6 weeks of "turning of the pages" and then slowly started to get better and better... though some things remain. We also did other things during this year- changing our diet, going regularly to the chiropractor, starting hippotherapy, etc. At our one year check-up w/Dr K in Sept 2010, he proclaimed her totally well. Not sure if he used the word "cured" but he gave a figure that was something like 90% (which is NOT true in our- the parents'- eyes.)

 

We stated to him at this time that she is still not able to go to school daily because of exhaustion. She still has little attention, had handwriting fluctuations, has mood lability, and periods of intense separation anxiety. he still removed the prophylactic abx and pretty much washed his hands of us.

 

I want to mention at this point that we have had- as a family- positive rapid strep tests since Feb 2010. Her IVIG was in Sept 2009. So, for the majority of the year she was on TREATMENT doses of abx, not just prophylactic. He is aware of this.

 

We asked his opinion of Lyme testing and he discouraged us, saying that only 2 cases that he knew of in his years of practicing had been positive for Lyme. However, since we hit a wall with clearing strep and no where else to turn, along with the fact that we ALL now have similar symptoms (I have had mine since a young age- ironically corresponding to bad tick bite, DH's started about a year after I met him,) we decided to pursue Lyme. I tested first and mine was considered inconclusive by the first LLMD we saw. I had 3 positive bands and a few more inconclusive bands. Pixie tested next- testing positive on 5 bands for IGG and 3 for IGM. DOUBLE POSITIVE on most. We both tested positive for Mycoplasma and HHV6. I was started on treatment to see if there were any changes in my symptoms (and our second LLMD considered my results positive, given my history of sx as well.) 4 days after starting treatment, a huge bulls-eye appeared on my chest and I have continued to herx badly w/treatment that I absolutely plan to continue.

 

Pixie, however, has not had herxes as bad as mine, but this could be for many reasons- she has been on abx for far longer and gone through "herxes" after IVIG, or maybe she is not yet on enough treatment as we are taking it slower for her.

 

A little more about our history-

 

We lived in NC in an environment that was absolutely saturated w/ticks. Our home was in the middle of woods. We had dogs and cats that came in and out, and much wildlife around us. Checking for ticks was a nightly chore, and you typically found one and pulled it off. You knew to look for the rash and save the tick (usually for a week) and then move on. Most times these were on the scalp, so we would probably not have noticed a bulls-eye there.

 

We lived in a mobile home, both during my pregnancy, and during Pixie's first 5 years, that had a terrible mold problem. We both have multiple chemical sensitivities.

 

 

So, why? Because I knew we had a history of tick bites- it could have been congenital or a bite of her own. I knew we BOTH had symptoms and those symptoms had been transmitted to my DH as well, so whatever infection we are/were dealing with is likely contagious. And I wasn't satisfied with the progress we had made w/the IVIG and year of abx, as well as our inability as a family to clear strep (which can bind to other things like heavy metals, mold, and parasites.) Also, while testing was expensive, it really didn't otherwise hurt to investigate.

Link to comment
Share on other sites

I just want to share my perspective. I was a healthy individual until may 2007. I woke up one day comppletely and utterly disabled. I was so sick. I went to the doctor and luckily my pcp also specializes in infectious diseases. He ran a ton of lab tests. My QUEST Lyme test was cdc IgM positive. I never saw a tick, a bite or a rash of any kind. I had worked as a vet tech for 12 years so I certainly was exposed to ticks.

 

Fast forward 4 years. I am still completely disabled, maybe a bit better than before. I have chronic Lyme. My son who is 5 who has had strep at least 4-6 times, basically developed OCD and tics (to name a few symptoms) over night 2-3 months ago. I have a friend who's daughter has Lyme. co's and PANDAS. She is the one who suggested PANDAS to me. So we are in the process of working my son up now. He will be tested for Lyme via Igenex ASAP AND look into the PANDAS as well. I dont think that any person who has a medical problems can walk around with disease blinders on. You will miss something.

 

I co moderate and co founded a support group for Lyme (going on 3.5 years now) I know a bit too much about lyme. Based on what I know and have experienced personally, I dont think you can be too careful when it comes to a POSSIBLE Lyme diagnosis. I wouldnt want my kid to deal with what I have for 4 years now. So the Igenex test costs aproximately $300 for Igm and IGG Lyme western blots. In the grand scheme of things that is a drop in the bucket. I am new to PANDAS but Lyme seems like a real threat and possibility in PANDAS kids. Just my 2 cents.

Link to comment
Share on other sites

I think I would like to add the details of my daughter's case just so that others can compare.

 

My daughter was neuro-typical (dcmom I love that term!). She was in the last quarter of a very successful year of kindergarten. She had a bad case of strep throat, that took 4 rounds of antibiotics to clear. Her PANDAS symptoms started approximately soon after stopping the 2nd round of antibiotics. Her test results were normal, and as expected she had elevated strep titers.

 

Within three months of her onset of symptoms, we were in front of a PANDAS doctor. My daughter was treated with a prophylaxis (100mg azith daily) and a month long taper of prednisone. By the end of that month she was 97% back to us, and over the next 2 1/2 months we saw any (very minor) symptoms go away. In August 2009, we switched her to pen vk as a prophylaxis.

 

She had a very successful year in First grade, but in the spring of 2010 strep hit my house again. Despite testing negative on the rapids and culture, her PANDAS symptoms started to come back. Her ped put her on full strength of omnicef, within a week her PANDAS doctor continued the antibiotic, and put her on another monthly taper. By the end of the the third week, she was completely back to us again. For various reasons, we were not able to follow up with her PANDAS doctor until August so she stayed on full-strength omnicef until then. We cut the dose in half, and she has continued to do very well.

 

In the very beginning of our journey, Lyme testing was suggested to us. We didn't pursue it because we have a very clear history of strep being the cause, and a family history of RF and anxiety (panic disorder and sub-clinical OCD).

 

Certainly, if my daughter was still struggling, we would be turning over every rock. However, I also want to point out that I think our case is a minority. Not many kids get diagnosed so quickly, and that is why I think my daughter responded so well to prednisone. I don't think the autoimmunity was allowed to really get going...(but that is just my idea--obviously I'm not a doctor).

 

So, I think for PANDAS families who are struggling, as long as you see a positive trend in improvements from immune therapies, then it could take upwards to a year to two years. The brain heals slowly. These are just my gut feelings based on what Dr. Cunningham has stated about how long it can take the cam score to drop.

 

I still have not done any Lyme testing because my daughter is in total remission, so for us it does not apply.

 

I also want to add that last summer we also did immune testing, and all was normal.

 

So, I hope my input as to why I don't believe my daughter has Lyme...helps...

 

I pray for our kids everyday!

Edited by Kayanne
Link to comment
Share on other sites

Thank you so much for all of your advice/input!

 

This is the first time in a while that I have had some quiet time to respond...it's 12:28am and everyone is alseep :)

 

We have had a rough couple of weeks. I have been so worried about my ds7, and my posts have been regarding him, but we have figured out that my dd6 is most likely PANDAS as well.

 

I have decided to test for Lyme. I think we just have to rule it out, especially since he had the tick on him for a while. So...I will update on the results when they come in.

 

Thanks again for taking the time to share. I really don't know what I would do without everyone here. I don't post all that often, but I am constantly reading and trying to take everything in. It is such a great thing that we can all learn from each other. I can't imagine what it would be like for us without the internet!

 

Hope everyone has a nice Easter Sunday :)

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...