momofgirls
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Dr. Corson touches on PANDAS at a recent conference for anyone interested.
http://betterhealthguy.com/joomla/blog/257-bioresource-2012-conference
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Hi Dedee, I sent you a PM.
Kim
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Hi Nmom,
my child had Babesia WA-1 and was treated before we went down the typical PANDAS treatment course.
She had many (maybe all) of the physical symptoms mentioned by RNmom. It was found after we went to an integrative LLMD - we went there trying to find a cause for her overnight onset psych symptoms & the physical issues. She also had a marginally positive lyme test at that time, but once the Babesia was under control (Mepron, many supplements, antibiotics) her lyme test was clearly CDC positive (and this was using LabCorp or Quest).
I know we have spoken before, maybe you remember? There are a few LLMDS in the NoVA or Wash metro area who are well known. We saw a great one in NoVa. She took great care of my child. I will tell you that our experience is that it was a huge commitment financially, time-wise and even emotionally (not counting that your child needs to be extremely cooperative with many medications/supplements).
One thing I would consider if it was me and say, on my other PANDAS child, who was "dealing" with the OCD and tics as you describe and I got a vague positive like "antibody detected" but no quantitative numbers~ I might research the test and take it to my family doctor or even Dr B, though your local doctor would be alot closer! I would ask them to run it again and ask for a more definitive test.
I know this is practically heresy to say this publicly- but I can take the backlash
-- but I would NOT pursue that Lyme band, if your kid is not physically sick or incapacitated. SORRY- but I would not.How did your positive Lyme test look last fall? What bands were positive? I think that would be helpful to compare. I think band 66 is like band 41- common in different kind of bacteria- not specific to Lyme.
The ASO reflex just has to do with how the lab performs the test- meaning if it is positive, keep testing.
When you say his C1q is out of range- high or low? I think that being low (or even undetectable) can be acquired or from birth.
I cannot imagine how frustrated you must be-- dealing with lab results that seem incomplete from halfway (or maybe almost all the way!) across the country.
Though I just said I would not pursue that single postive lyme band, I would try to have the Babesia rechecked before I hit an LLMD. However, the integrative approach of an LLMD can find so much more, like LLM said. They really work hard to get your body in tip-top shape. I think when this PANDAS nightmare is over for my child-- we will head back there to try to undo all the damage done by years of psych meds, steroids, and get her immune and detox systems in good shape.
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Can you tell us with what lab your son was most recently tested for lyme? Were there any indeterminant bands in addition to the positive 66? My daughter was a patient of Dr. B's some time ago. She was negative on the Quest western blot and positive via Igenex. We ended us moving on to a lyme doctor as Dr. B was and is still very inexperienced with tick born disease. I am not trying to ruffle feathers as I know he has been so helpful to many kids but this stuff is way out of his area of expertise. The lab report indicated babesia? I would be very concerned about this and it is a little scary that Dr. B said your son was negative for all co-infections. Babesia is a serious parasitic infection usually accompanied by lyme and needs proper treatment as RNmom said in her post. Given the history of a previously positive lyme test and since the more recent test is picking up babesia, I would spend my money on a lyme doctor instead of paying for another phone consult with Dr. B.. Also steroids prior to testing can suppress the immune system resulting in a false negative western blot. In my mind I would look for a lyme doctor to help you further.
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Michael/Julia
I've read just a little about the GcMAF shots being used to boost the immune system but am wondering what their effect on autoimmunity might be. Do either of you have the additional information on how it would work for a PANDAS patient?
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Susan,
Your comments on puberty made me laugh, so sad the things we find funny in our dark, weird world. Can I ask what you are doing for the heavy metal detox? Is she on antibiotics? I have a mom theory but have no idea if it is even possible. With all the talk about metals, detox, KPU, and biofilm treatment I am wondering if it is possible that when one is treated for metals...if the metals are part of the biofilm matrix and are pulled out, wouldn't bugs like bartonella or lyme or whatever else is hiding within the biofilm come out too? Hence a herx rash like you are seeing? Could you be killing more bartonella and other stuff as your daughter is treated for metals because they have been hiding within the biofilms? I don't know if this even makes sense but I wonder.
Kim
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Well, for me, I find it hard to believe that 12ish girls all contracted Lyme around the same time and then all developed sudden onset tourette like symptoms from it at the same time also. Just not plausible in my mind......but,that is me....no surprises there. (and I, personally, will leave the subject on Lyme and this situation rest at that.)
Anway...thanks to some info. via the Pepsi Refresh site...I found the link. He talked about it at the end of a segment he was doing about eating processed meats.
http://video.foxnews.com/v/1389322627001/processed-meat-linked-to-pancreatic-cancer
Its not hard for me to believe that 12 girls in one high school all may have contracted lyme. While we all have had different triggers prior to "sudden onset", many of us found that our children had lyme underneath. So for us it appeared to be a strep induced illness but at the end of the day, there turned out to be much more going on prior to the final blow to the immune system. I am not suggesting that each of these girls just picked up lyme disease this year, but it is very possible the've had it for a while and all were recently exposed to the same trigger (vaccine, strep, or whatever). Most of us on the forum by now have realized that there were many layers of infections and multiple factors preceding the onset of this illness.
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Oh Ellen, I am so sorry to hear what you guys are going through. I can't imagine how you are coping but hope you find answers for your son.
I want to share a story of a teenage boy I lived next door to in Connecticut. He was diagnosed with schizophrenia at age 10 or 11 I think and was hospitalized several times. Ultimately he was diagnosed with Lyme, bartonella, babesia, mycoplasma, and more. He has been undergoing treatment for his infections for over a year now ( he is now 15 I think). I no longer live in Connecticut but I continue to speak with his mother and gets updates on his progress. She tells me he has made real good gains throughout treatment although he still has a long way to go. He is in a much better place now than he was 2 years ago. His journey not unlike your sons has been heartbreaking and rough but iI know his mother still has hope for his future as she has seen him improve slowly with time This is so hard and I would not presume to have the answers you need but hope that one day you will be able to post a positive update. I wish you guys all the best.
Kim
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Lisa
I find it hard to believe that your son is the first of his patients to not respond to ivig. Actually my daughter may have been only his 3rd pandas case 2 years ago. She did not do well with ivig and Lyme treatment has turned her around. I feel like I remember your son's Lyme results and they were technically negative but he was positive or at least indeterminate for some pretty specific bands. I don't think Dr B is really all that well versed in Lyme. He is trying and learning but it's a complicated field even for those that have been treating for years. For what it's worth, I think seeing a Lyme doctor is a good next step.
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Im glad you are going to see Dr. B. He will help run all the tests but I want to tell you that what a lot of us have discovered is that this disease...(call it what you want, PANDAS, PITANDS, PANS)can be triggered by many different or multiple infections. For some it can be strep but for others there have been layers of infection that triggered the illness. I just want to encourage you to rule out all chronic infections including strep, mycoplasma, lyme, bartonella, and babesia. Lyme, bartonella, and babesia are all tick born infections that need to be treated with a combination of antibiotics by a skilled lyme literate doctor. It isn't as simple as treating for strep if your child is infected with one of these infections. Some of us on this forum went with the PANDAS diagnosis but when our children did not respond to appropriate treatment, we were forced to dig deeper and look at some of these more complex infections. Dr. B will run the labs but I would insist that he check for lyme and co-infections via IGENEX, a tick born disease specialty lab. Lyme testing is complicated and the standard tests run by Quest or Labcorp are not adequate when trying to rule out lyme. I don't want to overwhelm you with information right out of the gate but your post made me suspicious of lyme. Given that your son is experiencing issues with his thyroid and that you live New York, a lyme endemic area of the country, I think it's important that you look at all of these possibilities. We wasted a year on PANDAS treatment before we discovered lyme disease in my daughter and I wish I would have known then what I know now. Please check out the lyme forum. The folks over there will answere questions too. In the meantime I think going to see Dr. B is a good start.
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Just wanted to add my thoughts to your questionable lyme results. I'm not sure when you tested in relation to the IVIG's but its my understanding that the high dose is very immuno suppressive. If you have tested for Lyme after doing a course of steroids or ivig the results could be falsely negative. The western blot is testing for antibodies to Lyme and if the immune system has been suppressed by ivig or steroids, there may not be a lot of antibodies being generated even if one is infected with lyme or co-infections. If you are not seeing benefit from the ivig then I would consider stopping and really re-considering lyme.. Some lyme doctors will try a course of combination antibiotics in attempt to bring the Lyme out and then test again. A good lyme doctor could also advise you on other tests that do not measure antibodies but instead test for DNA etc. .
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Ok So this thread inspired me to clean out my washing machine at 9 pm tonight! Armed with bleach and gloves I started scrubbing like a total OCD mom. After about an hour of scrubbing and rinsing I felt wetness through my slippers.
i broke it. Water all over my floor. Big mess. Husband thought I was nuts before, he's really going to love me now. Thought you all would appreciate my mania. This illness is making me crazy. -
Wilma,
I don't remember if you have already said but how old is your daughter? I just want to remind you that Sammy Maloney was I think 11 when diagnosed with PANDAS. He seems to be doing really great now. I don't think there is an easy fix to this illness and we can all make suggetions and talk about what has helped our children but I resist the idea that she is brain damaged and that these behaviors are permanent. None of us can say for sure of course, but I would not give up. You've seen glimpses of improvement. Hold on to that and keep researching. That is my only advice. For us there were multiple infections at play and it was definately a case of peeling away at the layers of the onion. We had to address bacteria and viral infections. Detox, herbal remedies, and other natural support were important too. I wish for all of us that it were easy but its not. At the very least you know your daughter has bartonella. Maybe there are other co-infections, detox issues etc. that need to be addressed. Just my thoughts, hope it helps.
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I second everything Michael Tampa said in his post. I wouldn't waste a lot of time with a neurologist who does not specialize in Lyme. You can contact ILADS.org for doctor referrals. Your daughter is young and this is very treatable but can be difficult. I would see a doctor that understands Lyme and all it's co-infections.ask lots of question on this forum. The parents here have done a lot of research.
Kim
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We were told that Lyme can create an elevated ANA by two different Lyme doctors.
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I do not understand your logic....strep and Lyme are infections both of which could trigger tics and OCD by the same immune response. Many pandas kids are infected with Lyme and that is why we post on this board. To separate based on what our kids are infected is not efficient because the information impacts so many. The Lyme board was created because some parents felt the Lyme topics complicated the pandas board unnecessarily. Any of the posts where i have cautioned use of steroids and other more aggressive pandas treatment were directed to those that had not ruled out Lyme. I would never try to 'persuade' someone out of a pandas diagnosis but only instead suggest they make sure they know with what infection they are dealing.
I really do not not understand why this is even a debate.
yes, please find us anti-lyme moms on the Lyme forum trying to persuade people out of a Lyme diagnosis.
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WRONG ladies. Again the conversation is derailed to the comfort zone of " I thought it was pandas until I figured out it was Lyme."
Not the topic here. This thread is the opposite to that point. Who was negative for Lyme and just pandas, so that would not be any of you who are having success with Lyme treatment, right? You must have Lyme/co., so that is why the original author specifically said they didn't post on the Lyme board!!!
It is soliciting response from those who deduced Lyme was NOT an issue for their pandas kids, by whatever means they choose to reveal here.
These are not "anti-Lyme" posts!!! Mine is not anti-lyme, go read it. These are pro-pandas posts. Again, I would ask....if it is such a problem to have a pro-pandas thread, why are you all not compelled to adamently share similar information with similar vigor on the TS, OCD, ADHD, ASD, and LD forums? Why is this just something that has to be tolerated without a word said or your branded "anti-Lyme" on the pandas forum??? Somebody please answer that.
Many of theses posts are absolutely ani-Lyme testing and anti -Lyme doctors. You can re-read them yourself. These posts continuously try to rip apart Lyme testing and the doctors that treat. Pandas is a clinical diagnosis given all the time and I respect the doctors treat for it but it has failed many of us. I have more evidence to treat for Lyme than strep and it has nothing to do with some cross-reactive antibody from strep to Lyme.
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Not what I said... I believe she would respond with tics and OCD if exposed to strep. Her cam k was low but within the pandas range and antineuronal titers were normal. She did not have elevated strep titers. We really had no idea what we were treating in the beginning. What I am suggesting is that without being treated for her Lyme she would not have improved with steroids and ivig as we tried.
so..Momofgirls...your child does not have PANDAS?
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I see the troops have been called out.
"Regarding steroids, my daughter had three long tapers and we saw a huge amount of improvement but the improvements never lasted because we did not know she had Lyme"
So, the regression was due to Lyme? how do you know? Could it be an autoimmune response? Steroid improvement in PANDAS is considered temporary....so....just because of the regression after "huge improvements" doesn't mean the child has Lyme. Really??
Well I'm no rocket scientist but since my daughter was positive for Lyme and bartonella I am going out on a limb by saying the regression was due to Lyme/bartonella. Once we started treating for those infections her symptoms became much worse and were accompanied by physical joint pain, headaches, and vision disturbances. It took a good while for the combination of antibiotics to work but they did and she improved. For the record she was CDC negative for Lyme and positive only through igenex (igm). You are out of line to suggest that we do not know for what we are treating.
S&S...many do not realize what happened to their kids until it is "too late". Meaning the strep was taken care of by the immune system and the antibodies have subsided. That happens, you know? A positive swab is great..but....your child gets strep and the process has begun....but, you don't know it. Only after weeks, or more, or weird behavior do you do something. By this time, the strep is gone...in some cases...but, the autoimmune process is in full swing.
Shouldn't you "herx" with Azith??
Jill...there is no answer for that!
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I have read countless times that negative strep titers do not necessarily rule out pandas. Many have posted that some kids don't make antibodies to strep but still may be infected. How is it any different when Lyme moms make similar statements about Lyme. These anti-lyme posts do a real disservice to parents on this board trying to figure out what is wrong with their child. Lyme may not be an issue for all of these kids but it seems more and more are finding out every week that it is. Many parents have posted great improvement once addressing Lyme and co-infections and some of you seem to continuously try to discredit them. It's sad because Pitands kids infected with Lyme may never have a chance to get well if infections are not treated properly. Regarding steroids, my daughter had three long tapers and we saw a huge amount of improvement but the improvements never lasted because we did not know she had Lyme. We waisted an entire year on ivig and steroids. I only hope others can learn from my mistakes and that is why we continue to press parents to test for Lyme.
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Your son is positive and indeterminate for some very key lyme bands and looks very lyme like to me. It is so sad that parents are still realizing this after having gone through multiple ivig's. I don't even think you need to waste the money on re-testing at this point and would go ahead and make the appointment with a lyme doctor. Maybe even ask Dr. B to start a trial of lyme treatment untill you can get in with a lyme doctor. Usually the combination of antibiotics used will treat lyme and bartonella but you may still need to rule out other co-infections like babesia. Good luck.
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This is my last post...for now. Don't want to beat a dead horse here but the case you are referring to in The Post is a classic Pandas case. I am suggesting that you may not be seeing the reprieve with a course of abx because there is another chronic infection preventing the recovery. If a child with Pitands gets the flu, they may flare. If they get bitten by a tick and develop chronic Lyme they will flare too and will continue to flare until they are treated for Lyme appropriately. Just something to think about.
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Of course it could be something the kids are passing around but don't you think you would have found more in the blood work already run? Your daughter has been on zyth a long time with no improvement. She got worse on augmentin. On the Lyme board we call that a herx. Didn't you say your kids have bitten by ticks maybe even multiple times? Her Lyme test results were very borderline. If you went to a Lyme doctor you could try a combination of antibiotics and watch for a herx then maybe even re-test to confirm. Maybe even go see Dr b as Philamom suggested. I'm sure based on your daughters symptoms and igenex results he would be willing to try Lyme treatment. He takes insurance and won't send you away with a tourettes diagnosis. Then if you confirm Lyme you could see a local Lyme doctor for treatment. I push you in this direction because pandas treatment has not been successful alone for the kids with Lyme. I don't think steroids or ivig will be much help if Lyme is still driving the immune response.
Please guys don't throw stones for saying so! I don't get joy from of telling people I think their kids have Lyme.
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Also wanted to say that, given our family history, what are the chances this would really be Lyme? We've got TS/OCD AND RF.....so the chance it would be Lyme?? And my 9 year old ticcing/touching/tapping worse same time as my "pandas" dd?
I think you are missing a very key point with your line of thinking as quoted above. Most parents on this forum, despite differential diagnosis of lyme, pandas, tourettes, OCD, and RF etc...would agree that each of the discussed illnesses have some sort of underlying immune disfunction triggered by infection. For some it's strep, some it's much more including lyme. You keep talking about your family history of tourettes and OCD versus pandas. It's the response that is genetic not the infection. So yes you could have Lyme disease causing your tourettes. Do you really think they are all so different? Do you really think it's one or the other? What are the chances Lyme is a factor? Highly! I am just suggesting that an infection, especially a combination of ugly chronic ones are causing what you know as tourettes.
-- but I would NOT pursue that Lyme band, if your kid is not physically sick or incapacitated. SORRY- but I would not.
i broke it. Water all over my floor. Big mess. Husband thought I was nuts before, he's really going to love me now. Thought you all would appreciate my mania. This illness is making me crazy.
About to start diflucan
in PANS / PANDAS (Lyme included)
Posted
Hi Coco
Im not sure what I would do with the antibiotics so hopefully others will chime in but I think it's a good idea to start on the weekend and give lots of charcoal or bentonite several hours after the diflucan. At one point I was giving my daughter up to 15 charcoal pills a night when starting Lyme treatment. I'm not sure I ever really saw a difference with the herx but I would think it would be very helpful with yeast die off.