PacificMama

Hi All, All the puzzle pieces are starting to fit together. Here is an update about my family – I hope that it may help some people here find their own answers. (and sorry… it turned out much long than it should be!) The journey began when my oldest daughter became incredibly ill at 2.5 years. It took me nearly another year of countless trips to specialists, medical tests, research and on and on (you all know the same path yourselves!). I pleaded for the docs to consider lyme because we had the exposure. When the tests finally came back, she was positive beyond a doubt with 7 bands positive on western blot and positive by pcr. Suspected/likely bartonella too. Getting a doctor to treat her beyond 30 days of abx was not going to happen locally, and so off we went to the best llmd pediatrician. My daughter was in a bad way at this time, and her treatment to recovery was a rocky road at times. But always there was progression, and finally we reached the land of “symptom free”. That took about 2 years (with lots of progress early on, and a slow climb after that). But we likely stopped the abx too soon, and did not adequately treat the cyst form. She relapsed into neuro symptoms after 5yo immunizations (what you all know as PANDAS type symptoms). Back to llmd, back on abx (including a cyst buster!). She is symptom free and doing fantastic today. The update is that our family has been blindsided by lyme yet again. The short version is that my younger daughter has had terrible gastro-intestinal issues since about 1yo (she is now 5). She has always had mood liability issues. Bladder issues. She went through what I would call a 6 month-long semi-autistic state following 1yo immunizations (which she seemed to eventually pull out of). She was diagnosed with multiple food and environmental allergies, and that is what we always thought we were dealing with. She has seen a ton of specialists too! But in the past 6 months her symptoms started to include migratory joint pain, tooth/jaw pain (a big lyme symptom btw), headache, sleep issues, nightmares, coginitive dysfunction and staring-type absence seizures. She had a thorough neuro work up (ct scan, 2 eeg’s, other tests). At this time I of course had her tested for lyme, and was devastated when she came back unquestionably positive. Devastated because I had missed it for so long, but happy that we finally had a diagnosis we could treat and RECOVER from. Well, you know what’s coming next. I of course am advised by doctor to test myself. And am further devastated to have my own lyme test come back indicative of lyme. Not positive, but positive or indeterminate on the important bands. The doctor wants me to begin treatment. I am unsure at this time what I will do. I am what you might call vaguely symptomatic, with most of my symptoms something you might attribute to getting older or being a tired parent (fatigue, joint fatigue, worsening eyesight, etc). However, I have mild vertigo. I have autoimmune thryroid disease (hashimoto’s). Everything I’ve ever had in recent years I’ve attributed to my thyroid disease. But perhaps the thyroid disease should be attributed to the lyme. In any event, I’m quite functioning at this point, get everything done I need to, walk several miles a day, etc. My fear is that some future event or illness will cause the symptoms to cascade down upon me, so I do want to treat before that happens. Did I contract lyme when pregnant with my younger daughter, on the camping trip where we believed my older daughter had her tick bite? Or did I have it all along, even before I gave birth to my older daughter? Did I pass it on to both of them, and then later immune-triggering events (like immunizations, other illnesses, subsequent bite) set off their unfolding of symptoms? Like so many of you, I will never have an answer. I never considered the congenital possibility because I myself was not terribly symptomatic. But I have since learned that this is often the case (that the mother does not have to be particularly symptomatic). In any event, I am beyond heartbroken that my younger daughter has gone untreated so long. I of course have spent many hours on this board, much of it asking people to consider the possibility that their child may have one of these infections. Especially in families like mine and so many of yours, where there is more than one family member with health issues. I did receive my ILADS DVD and watched Dr. Corson’s presentation again with my husband. I wish I could send a copy to everyone who’d like to see it. Because her whole presentation wasn’t so much a lyme 101. It was really a discussion focusing on infectious possibilities for neuro-pysch and cognitive dysfunction in children – something that affects everyone here. So there’s another plug for people to spend the $20 and watch the presentation. Sometimes the topics I have posted on take an unfortunate turn down the road of distraction. I am sincerely sorry that this happens. Beyond that, I probably can’t convey in words what I’d like to say from my heart. This board should certainly be a positive place where people get information and support from one another. I do not know if this has been helpful for anyone -- maybe I just needed to write it all down for myself. Still processing, you know. I wish every family here all the best, and if I’m not around posting, I’m still happy to help via PM if I can ever do anything for anybody. Sincerely, Mary p.s. I’ve asked Chemar to add a couple of posts to be pinned to the top here. Please include others that you feel are especially helpful.

This notion of inaccurately attributing dental spirochetes to band 41 is addressed by a lyme doctor, which was cited in this post: http://www.latitudes...art=#entry56240 Band 41 appearing by itself usually warrants further investigation and clinical evaluation by a Lyme expert. Im not familiar with the science that states that half the normal population is Band 41 positive. Could you provide further info/citation. Thanks. Well I don't know if you are stating this question to me, but PacificMama, you seem to make some statements that are always in the favor of lyme, and I think everyone should understand that all the statements made about lyme and testing and conclusions are all pretty much not exactly 'science' in the sense that these are not universally agreed upon in the medical field. The link you provide here...is this also not just an 'opinion' of some lyme doctor? I don't see any science to back up what he is saying either. So I am only telling you what I learned from a recent doctor visit and this doctor is definitely an expert in the field of PANDAS I can tell you that, he has more than 20 years of research behind him. He tests for lyme in the initial work up for PANDAS patients to rule out any other causes of symptoms. I did not state he was a lyme expert. But he does have data to back up his testing of lyme and the percentage of patients who have the band 41, he explained all this to me, it is a little over my head but I know we discussed it. He was very interested in this at one time because he found it interesting that alot of his Pandas patients did have only band 41 and wondered if it was of any significance to Pandas since it might be some gut infection or as he explained, most probably dental flora bacteria. I don't claim to understand all this too much, but I did ask him these questions about what I read here. And in that other link with the discussion from Dr. T., I see you posted a reply to him that you think his findinds were very interesting and you appreciated his work, but now you say he is no lyme expert. I think I am offended that you say in your other post here that he is just a neurologist that is recently specializing in PANDAS, but he is a very dedicated and obviously very smart doctor for alot of kids here nonetheless and I won't go into it but I do know there is another doctor who is just an immunologist who has 'recently' delved into PANDAS, so one might argue he is not an expert either, yet he is diagnosing PANDAS,and also diagnosing lyme from what I have read here too, so what. You can keep telling people to talk to an LLMD expert or whatever, but I hope some here are not missing some other ideas to help their kids if every time they are being directed to lyme and these lyme doctors who I don't think know it all. I beleive that even the 'diagnosis' of lyme is not always true and correct, some should understand that it is a clinical diagnosis and there is no test that can say for sure, and it is the same for PANDAS I think, so I don't think anyone can say for sure, I see alot of speculation here and it is hard because I am still trying to find some information on the PANDAS subject but often it is derailed to lyme so it has been unavoidable to read on. I guess I will soon be wondering about lyme and I guess I know where to go for info. #1, No, that comment was not directed at you. #2, You are posting on the lyme board. This is where we have discussions about lyme. #3, My PERSONAL OPINION, which I stated, was that band 41 should warrant further investigation if presented with symptoms. #4, The doctor you mention is definitively not a lyme expert. It is a very, very specialized medical area -- as are most areas of medicine. The lab he uses to test is horrendous for testing lyme -- so it's of very little help. I AM OFFERING NO OPINION OF HIM AS A DOCTOR WHASOEVER, EXCEPT THAT HE IS NOT A TICK BORNE DISEASE SPECIALIST. He seems as if he genuinely wants to help people. Beyond what I've said above, I have no opinion about him personally or professionally whatsoever. I NEVER said he is "just" a neurologist. Being a neurologist is wonderful. I'm simply stating that his practice specialty was neurology, and recently he has begun specializing in PANDAS. It has been pointed out to me that he previously helped an older pandas patient here some years ago. #5 I refer people who want an expert opinion on tick borne diseases to an LLMD. If they wanted an expert opinion about PANDAS, I would refer them to a PANDAS doctor. That just seems logical to me.

Can somebody tell me how it is that PANDAS causes night sweats? I am not baiting here, I would really like to know if that is the case. *I am NOT talking about fever related infections. But non-fever states. Everything I have learned and read about night sweats is that it is caused by very few serious things. Most often, it is caused by certain chronic infections. Non chronic-infectious causes are few -- and serious. Cancerous tumor in lymphoma for example. Babesia is a malarial-like pathogen that can cause these night sweats. Some say borrelia can cause them. TB can cause them. Going by the definition of PANDAS as not a chronic infection, but an autoimmune disorder, how does it cause night sweats? Are you saying active strep is present, and strep causes night sweats? Do your doctors say this? Again... sincerely wondering. Mary

Hi SarahJane, Pain in the soles of the feet is such a unique symptom to a Bartonella infection, that it probably warrants learning a bit more about it for consideration. Bartonella does not have to be transmitted by ticks. It can be transmitted by fleas, head lice and other vectors. Also, it can be transmitted by the scratch or bite of a dog or cat (Baronella is also known as Cat Scratch Fever). So while it often is transmitted by a tick, it is one of the pathogenic infections that is transmitted in various manners. And there are different strains found in different parts of the country. There are people on the Lyme board here who do have bartonella, without having borrelia (lyme). Bartonella can present with similar symptoms to what you know as Pandas symptoms. (by the way, Kentucky does have tick borne diseases. It certainly is not considered a highly endemic state. But it does border some of the most endemic states). If you want to do further reading, please check out this article on Evaluating a Child for Tick Borne Diseases: http://www.latitudes.org/forums/index.php?showtopic=10421 If you have any questions, you can post on the Lyme board here at Latitudes -- lots of parents there with similar things happening. Mary

Nickelmama, did you say you are in the u.p. of michigan? If so, there is a ped in SSM who will run the Igenex tests for you. PM me if you want info. Mary

Hi, Just a head's up for new lyme families. This time of year is notorious for seeing a relapse or worsening of lyme/other symptoms. My first 2 holiday seasons found me back to the LLMD with major relaspses on our hands. He said it's not uncommon. Halloween starts the sugar binge, and it continues on through the December holidays. So hard to say "no" to treats for the little ones. Combine that with the decreased sleep / later bedtimes that usually takes place during the holiday break, and you may find yourself with some regression. It is very hard at the holidays, but as best you can try to protect your child's sleep and diet. (for candy, I do try to use Feingold Diet approved items as they are free from the artificial flavors/colors that are so bad for neuro problem kids. And scratch bake too). Good luck! Most importantly, enjoy the upcoming season with your children. It is a blessing to be on the journey to wellness. Mary

For all you congenital lyme families here, I just wanted to note that there is a survey being taken on the Lyme Aid Parents forum on yahoo groups. If you feel like participating, hopefully all the information gathered will be put to good use. (there is also currently a long thread going on congenital lyme too). Mary

Hi Elizabeth, No babesia for us that we ever knew of or treated. I just wanted to say hang in there... I too have heard that it is one of the tougher infections. But you will get there! I do believe that lymemom dealt with babesia, so hopefully she will chime in here. Mary

That's fantastic Susan. So nice you have open-minded and supportive doctors. Mary

P.Mom, The point is, I try very hard in my posts to give citations to the information I give out -- be it to the scientific literature; a study; a govenment body, a web site, a doctor, or what have you. Or I cite it as "opinion" when it is such. The information about band 41 that I referenced was by an experienced lyme doctor giving a review of the scientific literature of studies on band 41 and dental spirochetes. So he's not exactly pulling his opinion out of thin air. The particular PANDAS doctor referenced by others here has been a practicing neurologist until fairly recently when deciding to specialize in PANDAS. His familiarity with infectious tick borne diseases is very, very limited. As for myself, I clearly stated NOT that band 41 was definitive for lyme. But that band 41 indicated further investigation.

Not sure why it's not working... scroll up above a bit to a post by LymeMom, she has the link posted in the bottom of her post and it works.

This notion of inaccurately attributing dental spirochetes to band 41 is addressed by a lyme doctor, which was cited in this post: http://www.latitudes...art=#entry56240 Band 41 appearing by itself usually warrants further investigation and clinical evaluation by a Lyme expert. I’m not familiar with the science that states that half the “normal” population is Band 41 positive. Could you provide further info/citation. Thanks.

Not sure if you are trying to take an actual poll? If so, it seems more accurate to ask if people (their children) have been evaluated and tested for lyme / other tick borne infections by a experienced lyme physician. And if so, are they negative? It seems to me that about 90% of the posters on this forum are coming from lyme endemic regions. It is the same states over and over and over -- with a percentage of states that never show up here. Is that really a coincidence? In my opinion, any poster coming from a lyme endemic region with PANDAS symptoms can not say they do not have a tick borne infection unless they have been properly evaluated and tested for such. EVEN if they have strep problems.

Hello, Since these problems began while living on Long Island, which is an incredibly lyme endemic area, I'm wondering if there was any evaluation for lyme done? All of what you have described is symptomatic of lyme (there is a separate lyme forum here on the Latitudes web site precisely because so many of the PANDAS kids tunred out to have lyme and/or related tick born infection). As you might know, the testing is not always accurate, and a person really needs to be seen by a knowledgeable lyme specialist to make the diagnosis. Mary

I will try to find it! I'm sure it was long back in response to Dr. T. It may not be until tomorrow. Mary

Hi, You've gotten lots of good advice here. The only thing I am wondering is how experienced is the PA who is treating your son? The best thing to do is get an appointment with an LLMD to oversee all of this. There are long wait times usually (see the post here for Finding A Doctor). I'm not sure you would say Pandas AND lyme, as if he needed to be treated for 2 separate things by 2 different doctors. Essentially lyme and coinfections will cause the symptoms you know/knew to be PANDAS. As Wendy said, going slow and steady is important -- especially with a child. You really want someone who knows how to approach multiple tick borne infections (in addition to the non-tick infections). All the best... you are off to a good start. And no mother guilt allowed here! We are full up. Mary

You were really smart and on top of things back then to send the tick in. Maybe you could just call Igenex and say you sent a tick in 2006, and it was negative, but are investigating lyme now. What do they think? Is it possible the tick still had borrelia? Yes, because there are over 100 strains of it in the U.S. alone. Also, even if negative for borrelia, ticks harbor all these other infections. Also, is it possible she had another tick bite you were never aware of? Like you said, you live in the infected tick capitol of the U.S.

Yep... we ditched the back yard bird feeders long ago.

Hi Emerson, I probably wasn't clear when I posted to you on the PANDAS board. But yes, I've read narcolepsy as a symptom of neuro lyme. Have you googled "narcolepsy lyme" yet? And yes, I get that the $59 for conference dvd is a squeeze. Maybe I could send/lend my copy to you once I've reviewed it. Good luck with the sleep problems. I know it is one of the most maddening symptoms. Mary

Emerson, Just in case you were not aware, but sleep dysfunction is very common with lyme patients. Often it is the ability to go, and stay, asleep. But alternatively, it could be the need to sleep 20 hours a day. This will improve greatly for you once you begin your lyme treatment. Not sure if you ordered the DVD from the ILADS conference of the Friday presentations (it is $59 and would be well worth it if you are looking to understand this all a bit better), but many of the presenters/doctors mentioned this sleep dysfunction. Best. Mary

Nicklemama, I'm curious as to what labs Dr. T uses to test the lyme and myco? I think that you are right to keep pursuing an infectious problem. If your child is abx responsive, that is of course a big clue. As mentioned, many of these tests are not necessarily accurate. There are many different strains to certain things, and the tests are not sensitive to catch them all. My daughter is lyme/coinfections, and had nearly the identical symptoms as most here on the pandas/strep board (including sudden onset following vacs; and the hopping too (!) ) She tested with high CamK on Cunningham test, just so you know it is not specific to strep. I would strongly urge you to take your child to a doctor who is familiar with many of the possible infections that could cause these symptoms. That may be one of the PANDAS docs, but also a LLMD (Lyme/other infectious expert). A child really needs to be thoroughly examined IN PERSON by a knowledgeable doctor. Mary

Also, check out this thread for options in finding a doctor: http://www.latitudes.org/forums/index.php?showtopic=10543

Hi Wendy, I always enjoy your updates. It's so good to see someone identify (mostly!) what is at the root of their chilren's health dysfunction. But what a tangled web these infections weave ... and it leads to you finding answers about your own health. So from that standpoint it is a blessing too. You are under the care of a wonderful doctor, and so I am confident that you will all regain your health. I also really enjoy hearing about the perspective of Dr. H too. So keep posting! Mary

To find a doctor, see this thread? http://www.latitudes.org/forums/index.php?showtopic=10543 What part of the country are you in? The llmd's tend to have long wait times, so please schedule an appointment as soon as possible. How long is the doxy prescription for?

Hi, Just to clarify, are you saying that your son only had tick bite in the past few weeks? And that he has only been on abx (doxy) for a few days? Not sure how familiar with lyme you are, but when starting abx treatment for lyme it is quite common to have a herxheimer (herx) reaction. This means that symptoms temporarily increase before getting better. But yes, also the tick bite itself would increase your son's pre-existing tic disorder. Is it possible that your son could have had lyme for much longer than the past few weeks? Perhaps the bullseye is due to recent tick bite, but in reality he had lyme before this? Or, sometimes a rash appears long after the initial exposure. I ask this because of his tourette's diagnosis -- perhaps it was lyme all along? Are you under the care of a good lyme doctor? Mary