LNN
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Calling Dr. Bombay, calling Dr. Bombay
LNN replied to smartyjones's topic in PANS / PANDAS (Lyme included)
CBS stands for Cystathione Bete Synthase. It's the gene in the mid left edge of this diagram - it's at the start of the transsulfuration pathway -
Lyme bands - Western Blot - which ones matter
LNN replied to Hopeny's topic in PANS / PANDAS (Lyme included)
Trinity - Band 41 tests for proteins made by bacteria that have flagella - little tails that help them swim. Lyme spirochettes have flagella. But so does H. Pylori, syphilis and a few other bacteria families. So it's tested because lyme makes this marker but it isn't ** because it isn't unique to lyme only. The 39 IND IgG band suggests your daughter's body has seen lyme bacteria at some point but it may have been awhile ago and there aren't enough antibodies in her body to turn the band dark enough to be considered positive. Based on this lab test only, the IND 39 is the only one that makes me go "hmmm". It is not a test for bartonella. That would be a separate blood test. As for treatment, if you told me your daughter has a history of strep and her symptoms match up to the timing of strep illness, I'd lean toward Pandas treatments. If she has lyme symptoms that don't overlap with Pandas symptoms - things like muscle pain, joint swelling, episodes of brain fog not associated with illness, or anger that doesn't come from OCD riutals being interrupted...then treating for lyme might be worth a trial (and by that I mean using a combo of abx for lyme vs. using only one abx for Pandas). My daughter had a similar Igenex test - nothing screamed lyme except an IND 39 and 41+++ yet she'd never had strep. Her symptoms, while they did get worse with sinus infections, didn't match Pandas entirely. She had a lot of gut distress, GERD, body pain and she didn't have true OCD - she had anxiety but no compulsions/rituals she had to do. Using one abx didn't help entirely. So we treated her with a combo of abx (azithromycin plus bactrim) for 8 months and her lyme-like symptoms disappeared. Haven't had GI issues since. Did my daughter have lyme? No idea. But the combo abx helped a lot and that's what really mattered. There's another blood test you can consider - a C3d test that looks at how activated the immune complex system is. Dr B was the first doctor who tested my DD for this and then I asked our lyme doctor to continue to track it. Normal range at the time was below 8 (it's now below 20something). My DDs results went from 30 to 53 to 93 over the course of the year she had her worst symptoms. We started at the LLMD (lyme literate MD) when she was in the 90s and after using the combo abx, her C3d levels dropped to 17. I have no idea if she had lyme or some other infection. But I do know combo abx did the trick and her C3d improved as her behaviors improved. This wasn't the only puzzle piece for her but we used C3d as a guide to what the immune system was reacting to. So I agree with PMom that these test results don't scream lyme to me. But I also think the label is less important than how your daughter responds to treatment. I believe you've said you've seen no improvements so far. Have you tried multiple antibiotics in different combos? If yes, I too would look beyond lyme (tho I'd also make sure you tested specifically for bartonella) and look for other causes and/or a different doctor - it doesn't sound like you have a lot of confidence in your present doctor? FWIW - there are also other causes of neuropsych symptoms beyond strep and lyme. After treating for lyme, my daughter's remaining issues were resolved by looking at her genetics and finding she had trouble with certain metabolisms of specific vitamins/proteins. We addressed these with specific supplements and she's in the best place she's ever been - and off abx. (knock wood). -
Well, two more days under our belt and the OCD is still waning. I did add some lemon balm on Wednesday based on another thread - is't supposed to help with gaba, which I figured would help with some quick temper problems. Last night, he tells me he's been feeling like a mistake and hates his life. i ask how long he's been feeling like this and he says "I don't know, a few days." So I'll be stopping the lemon balm to see what happens. And we did skip copper yesterday because we went to the park and then out to dinner after school and missed our window. So no super sleuth medals (or doodles) for me yet - still working things out. But the copper/zinc thing does seem to have merit. Melinda - you'll figure things out as well, I have no doubt! (just do that pee test )
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I sent Sheila a message pointing her to this thread so she can help you out. I haven't had trouble with my messages per se but I used to have more space in my inbox and then suddenly this week, it was full. So something may have changed behind the scenes - not sure.
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I wanted to dust off this old thread about tick repellents. They won't protect you from a tick on your scalp if you brush under a tree or roll on the grass, but they at least help for exposed arms and legs... http://www.latitudes.org/forums/index.php?showtopic=17608&hl=%2Btick+%2Brepellent#entry140578
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In CT, the dept of agriculture will test the tick for free. It takes a month, but when my DH had an engorged deer tick on him, it was very, very comforting when the results came back negative. It was one less thing hanging in the back of our minds, one less "what if". You may want to see if PA has a similar testing option, or call to see how much testing costs. For immediate treatment, I'd advocate for as long a daily treatment option you can muster. Good luck!
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I've used this as a helpful guide http://www.heartfixer.com/AMRI-Nutrigenomics.htm#BHMT:%C2%A0%20Betaine-Homocysteine%20Methyltransferase It addresses all of the genes Yasko looks at.
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Can there be false possitives on lyme test?
LNN replied to trintiybella's topic in PANS / PANDAS (Lyme included)
Tests for antibodies to an infection are like a tracker looking for clues that his prey has passed that way on the trail. These tests look for whether the body made antibodies to bacteria that make certain proteins - either recently (generally IgM) or less recently (generally IgG). Some bodies are so weak, they don't make sufficient antibodies to show up as a definite band on the test (just as some bodies don't make adequate antibodies against strep to show up on an ASO or AntiDNase B test). These tests look in the rearview mirror - what has the body seen and reacted to in the past. So arguments have raged here and on other boards over the accuracy of antibody testing and other methods of testing. So as others have said, what matters is the clinical picture plus the labs as clues. It's true for Pandas, true for Lyme, true for other diseases. What also matters is what you point out - is the patient getting better? If not, is it because they don't have that disease? Maybe. or is it because they have something else that's keeping them sick, or immune dysfunctional, and preventing them from responding to the treatment? Is the doctor looking at other angles, customizing, sluething for clues, or using a generic approach that usually works for most people? These are questions lots of us have faced over the years. None of us has the answer for your child. We can only share what was true - or true for now - for our own kids. So I only post to toss out other ideas to consider, things that helped my kids. Allergies, including mold and dust mites, were a road block for my daughter. Once we bought mattress and boxspring and pillowcase encasement covers, her allergy issues greatly improved as did her overall health. Others have found the same when they uncover mold in a basement, attic, bathroom, under carpeting, around a leaky window - that they swore wasn't an issue. My son was treated fro Pandas (Pex and IVIG and tonsillectomy and lots of abx), then for lyme (lots more abx) and he did get better but kept hitting a wall. We then found a condition called pyroluria - a zinc/B6 deficiency - and treating that made a huge difference. He then did much better fighting lyme. Both my kids have also gotten better by addressing methylation issues. So these might be things to talk to your doctor about. It's very complicated and it stinks that you have to do the digging, but being detective/blood hound has paid off for a lot of us. So aside from is it lyme or not, you can also explore is it lyme plus something else, or is it strep plus something else. Unfortunately, sometimes this is a multiple choice question. -
Block you? Never! Mailbox was full. I cleaned it out.
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After the one day of child from h*** when we upped the dose to two pills, I stopped it completely. He's been way, way better. Just posted an updated about a zinc/copper experiment I've been conducting this week - thought of you as I posted it. Enhansa is a big No for us. But short of looking at genetics, I think it's a try it and see type of thing. The change was pretty rapid in DS's case, so aside from the new wrinkles I now own, no real harm done from trying it.
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Also remember that although Dr L and many others who treat pandas and/or lyme don't take insurance, they do give you the form you need so you can submit your own claim. Dr L was out-of-network for us, but when we submitted our claim, we were reimbursed at the 60% out of network rate. So her $400 office visit cost us $240 out of pocket. (tho this was her fee in 2010 - don't know what her fees are now). She is very hard to contact in between office visits, which requires a lot of persistence and patience on your part, but she is very, very good at what she does.
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It feels like lately, my role is to help others learn from my "mistakes" and that my poor kids are little science experiments. First, I overdose my DD with too much methylfolate and watch her turn bipolar on me. Now, I seem to have forgotten my promise to keep an eye on balance and through my laziness, caused a bout of OCD for my DS, For those who don't know or remember, my son has battled Pandas since 2008 and Lyme since 2010 (tho he probably had undiagnosed Lyme before Pandas - it just took us 2 yrs of Pandas treatments - with mixed results - to find it). He had a great school year and really seemed to be recovering from all the years of illness. School work was coming easily (which as a huge improvement), friendships were blossoming, he was hitting his stride. I was starting to think we were done with the horror story. But then in Feb, he started having OCD issues - but with no recent illness, no swollen glands or congestion or any physical signs of illness. No brain fog or muscle pain or any other symptom other than OCD, which was very strange for him he has always suffered from the whole Pandas package while in a flare. Already on zith+rifampin for lyme, we added augmentin. No change either way. Just this "mild" OCD - maybe a 3-4 on a 10 pt scale. For the past two months, I've been wracking my brain. We tested for yeast - negative. We tried a homeopathic detox remedy - no change. We rotated probiotics, stopped many supplements, tweaked others - no change. I even stopped abx, feeling like we might be done with lyme and that they might be contributing to some gut imbalance. Still no change. Then I looked at his 23andMe results - he has three gene mutations that conspire to make him very high in dopamine and serotonin. So I started looking at one of the genes - MAO-A (you've heard of this gene on the drug commercials that say "don't take this medication if you use an MAO inhibitor" - which means an anti-depressant). And I started looking for the opposite of an MAO inhibitor, something that would help him use up dopamine faster, not slower. What I found is that copper plays a role in MAO-A's ability to degrade dopamine. DIng, ding, ding. My son also has a condition called pyroluria - a condition that makes his body excrete zinc and B6 at a higher than normal rate and creates a zinc deficiency not easily detected in regular blood tests.. This is likely a life-long condition for him, as it is for me. So he takes a very high dose of a zinc/B6 supplement called CORE every day. Zinc and Copper are ying/yang metals. If one is high, the other is usually low. For the first 18 months we treated the pyroluria, I was good about supplementing copper in addition to the CORE to keep things balanced. But if my son takes copper with any other meds, he throws up. So as he got busy with after-school activities, which was our copper time slot, we started skipping the copper. It's probably been months since he took any. On a hunch, I re-started copper. After 4 days, he says the OCD is far milder. Not gone yet, but hardly had any compulsions at school and it only bothered him once he got home and wasn't busy. Hoping this is it, that the copper is helping him degrade neurotransmitters faster. So I post as a reminder to everyone using supplements - remember to keep an eye on balance. Happily, the past few months forced me to stop and re-evaluate supplements that at one point served a purpose but now aren't needed any more. I've cut out about half of the daily pills, including antibiotics. (I was the Queen of Supplements for a very long time). Hoping to only use abx at the first sign of an infection, as a kind of triage, but to remain off of them for as long as we can manage. Fingers crossed.
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A friend who knows my passion for methylation sent me this link http://autismnti.com/images/Website-_Yasko_Education.pdf that seems pretty helpful in simplifying a complex topic. It does a pretty good job of explaining why it's so essential to the immune system and for proper functioning of neurotransmitters. It's 18 pages long, so I can't post - but it has some good, easy to understand diagrams and ties a lot of complicated ideas together in simple terms. Here's an excerpt to give you a flavor and encourage you to click on the link: #9 BH4 (Tetrahydobiopterin), or “ The Better Health 4 Life Industry” BH4 (Tetrahydrobiopterin) Cycle —“ Better Health 4 Life Industries” Though controversy exists regarding this cycle’s function, Dr. Yasko’s theory indicates that The Big Motherflipper (MTHFR A1298C)may drive this cycle in the reverse direction and several independent studies support this finding. This leads to a chemical exchange among BH2 to BH4, a multi-purpose product that is used in both the Waste Facility (urea cycle) and BH4 Industry. Within the Better Health 4 Life Industry, BH4 produces chemicals known as neurotransmitters, or neurotalkers (NTs), including Dopamine, Serotonin, Melatonin,Norepinephrine, and Epinephrine. NTs are central for the communication between nerves and cells as well as stabilizing the crisis response mood and sleep cycles. Chronically low BH4 levels increase the risk for ADD/ADHD, bipolar disorder, OCD, insomnia, depression, anxiety, and many other quality of life issues. Think of this company as AT&T with a philanthropic twist since it donates BH4 to the Waste Facility for environmental clean up as well as supporting the community in health & wellbeing. The Waste Facility uses BH4 to clean up toxic ammonia and generate nitric oxide, an element that keeps blood vessels open and free of plaque. Yet if BH4 is scarce, it cannot clean up waste or deliver vital nutrients to the Power Plant It's a quick read and worth bookmarking for reference.
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New story on Pandas from Child Mind Institute. While it's more "objective" than I'd like, I think it does lean toward encouraging parents to pursue treatment and IMO, makes Singer look like the a** he is when he says "well, just give them drugs." http://www.childmind.org/en/posts/articles/2013-4-23-pandas-pans-about-acute-onset-ocd
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Psych recommending partial hospitalization-need advice
LNN replied to jdude's topic in PANS / PANDAS (Lyme included)
I would let her know you are pursuing medical treatment (IVIG) and that you feel hospitalization at this time would be ineffective. I think the risk of his acting out in a setting where his condition is not understood could prompt someone to force round the clock hospitalization or participation in some other therapy or medication that you do not want. I could foresee a loss of parental control. Slipper slope IMO. As for his anger, I have seen dramatic changes in my son (lyme/Pandas) on certain antibiotics and supplements as well as post-IVIG. I now know that certain things are more likely to trigger rages and certain things can help calm him down based on his genetics (from 23andMe testing). I tend to go overboard on my methylation/genetics posts so I won't do that here. But if you ever want to discuss privately, PM me. Best of luck with your decision and with the IVIG! -
Vaccines: will you get them for your other children?
LNN replied to TinyTreasures's topic in PANS / PANDAS (Lyme included)
Both my kids were fully vaccinated thru the ages of 5. My son didn't show signs of Pandas until he was 6. I will be taking a religious exemption for the vaccines required for 7th grade, which includes a meningitis vaccine. My kids don't get flu shots, which generally contain thimerisol unless you get a single-dose vial. I do think the ability to handle vaccines is very individual. I would personally avoid any shot that contained thimerisol and I wouldn't give more than one vaccine at a time. But I'm not anti vaccine and I do think the consequences of certain diseases outweighs the potential for a Pans flare in some cases. E.g. polio. I think delaying the vaccines like polio until they're older is probably wise. I think certain vaccines are not necessary - e.g. chickenpox. But I don't know of any way to cherry pick the vaccines you want to give and yet be able to decline others. I think you need to follow your gut on this one. It's not an easy decision. -
I think any time you make changes and see changes, it's part of the process - you learn things. But whether this is the turning the corner you're hoping for - still way too early to know. It's so tempting to put a lot of hope on small changes. It does show you he's still reachable and you should have hope for the long term. But I'd try to brace yourself for a bumpy road. The changes you've made are fairly significant IMO. These are high doses, you've made all three changes within 2 days and there wasn't any titering up. So after a few days, you may see that at least one of the changes you've made might've been too high and unfortunately, you won't know which one should be reconsidered. This may be the right dose for all three, but it's never worked that way in my house. You may want to consider only increasing one of these things and backing down to original doses on the other two for at least a week and then upping another one, giving that a week or two and then upping the third. NAC can be a biofilm buster and with the myco and viruses, it's possible he has biofilms. Using/increasing NAC could produce a herx and if he's not ready for it, it could make things worse. Also, you need to be giving methylB12 along with the Delpin or it won't get properly used by the body. I know Hollander is a big wig but if he hasn't advised you to take methylB12 along with the Delpin, he's playing with stuff he doesn't understand. You may want to consider only increasing one of the three over the weekend and going back down to the previous doses of the other two and then calling Hollander on Monday to seek clarification and discuss a titering up plan on increasing the other two meds. I know you desperately want your son back and I'm certain you'll eventually get there. I've just found that slow and cautious is a better way to get there. Wishing you a hopeful weekend!
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For those who have used Zithromax for lyme....
LNN replied to Dedee's topic in PANS / PANDAS (Lyme included)
We have done zith+augmentin - not much bang for the buck zith+augmentin+bactrim - great zith+omnicef - major herx, then goodness zith+rifampin - very good (was after the worst was over, so not as wow factor b/c he was much better by this time) zith doesn't do much for DS to protect him from Pandas flares and not much for lyme by itself. But it's been our mainstay for 2.5 yrs. Others have been rotated but since DS is too young for doxy, zith has been the one constant the LLMD has wanted to use. We did the same thing - zith for 2 weeks then added the second abx. -
Nickelmama - don't fret too much. Today I didn't give him any Enhansa and aside from one 60 second burst of anger out of the blue where he pounded a pillow, he's been great. Yesterday, to get them out of the house, we went to Target and bought tennis raquets and then went to the town park to volley some balls on the tennis court. He was horrible. Cranky, blamed everyone for every mistake - made Ivan Lendl and John Macinroe look like Ghandi. Today, we went again and he was in a great mood - even laughed at himself when he hit the ball into the next court. So if it was the Enhansa, it blew over quickly - and remember - I didn't see obvious bad stuff until we went from 150 to 300 mg. From what everyone else says, its worth trying. if it works, it may do really good things for you. If it's bad, it seems like you can recover fairly quickly once you stop or back down. Of course, the day's not over.....
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Timely post. I started this for my son last Friday - 150mg once per day - while awaiting candida albicans antibody test results. The first 5 days, I didn't see much change (he's in a flare, so hard to interpret good hours/bad hours). So I increased the dose to twice a day on Wed. On Thursday (yesterday) OMG - horrible anger, rages, bossiness, mood swings, depression, tears and rapid mood cycling all day long. I ended up only giving the morning dose and not the dinner dose. (so he only got two pills on Wed, yesterday back to one dose). Today I'm not going to give it because the yeast test came back negative and that was our primary reason for starting the Enhansa. Last night, I searched Enhansa on this forum and came across one of my posts (how ironic) from a few weeks ago when I was hip-deep in analyzing DSs 23andMe data. I had posted about how curcumin/tumeric is an MAO-A inhibitor (which is what anti-depressants are). MAO-A is the gene that regulates degradation of serotonin and secondarily the other neurotransmitters. My DS is MAO-A+, meaning he degrades serotonin/dopamine more slowly. He has another gene mutation that also regulates neurotransmitter degradtion more slowly (COMT - the worrier/worrier gene). So he's prone to being flooded with dopamine and serotonin and more likely to experience sudden anger, aggression and overwhelmed by his emotions - like a slightly clogged sink, his body doesn't process/degrade these neurotransmitters as quickly as other people and it takes him longer to control his upsurge of emotions. If Wikipedia is right and Enhansa can be an MAO-A inhibitor, I think the double dose Wed. made this flood of rollercoaster emotions even worse. What I might have interpreted as a herx could instead be a negative reaction to Enhansa itself. I'm stopping it and will see how he does. I still have a flare to deal with so I'm feeling kinda stuck but I need to take this out of the picture and see if things calm down a bit. Maybe it isn't the problem. IDK. I know for some people, Enhansa has been awesome. So hopefully that will be true for you. Just figured I'd share where we're at to give you something to keep an eye on. Some people might say my son's strong reaction suggests it's getting at some underlying problem, like a biofilm or virus. Maybe. But we can't live with another day like yesterday. So I'll have to find some other angle of attack. Wishing you a totally different experience!
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Caution re: Tindamax use if PANS or PANDAS
LNN replied to T_Mom's topic in PANS / PANDAS (Lyme included)
TMom - I'm so sorry. DS cannot handle tindamax well either. It seems to cause many inflammation related symptoms and increases his anger. Is it an autoimmune thing or a herx? IDK. I just know it's too hard for him to handle. That said, treating lyme in other ways was what brought him back in a way that straight Pandas treatments never did. I hope your personal h**l subsides. You must be at wits end. You're in my thoughts.... -
Calling Dr. Bombay, calling Dr. Bombay
LNN replied to smartyjones's topic in PANS / PANDAS (Lyme included)
Ok, I am old enough to have watched Bewitched - not in reruns but first time broadcasts. Oh well, with age comes wisdom???? The answer to your general question is that genetic testing tells you your odds of developing a problem but they aren't fate. Epigenetics is the emerging study of how we might be able to turn on, turn off, dim or work around a possible disease development or health problem. You can have an MTHFR problem and work around it by avoiding regular folic acid and supplementing with methylfolate - thereby doing the work this gene can't. Some lifestyle changes or diet changes can possibly do the same thing for other genetic predispostions. How do you tell if a gene mutation has been activated? That's still being worked out as far as I can tell. Still a lot of trial and error. For example, if you have a CBS mutation, some sites talk about testing your urine regularly to look for certain things. You change your diet and if you see changes for the positive - in both how you feel and in urine results - it's an indication your CBS mutation is activated and is something you need to address. If you don't seem to have issues or feel poorly or if changes in diet/lifestyle don't make much difference, perhaps it's only something you need to put on your radar. You can have a BRCA gene polymorphism for breast cancer, putting you at greater risk, but it doesn't mean you have active cancer or will definitely develop it. it does mean you need regular screenings, need to avoid things that can activate the gene and if you do develop breast cancer, be more aggressive in treatments. And even if your gene is turned on/off, it doesn't mean a death sentence. Yasko reminds people it's about maintaining balance. If you have a CBS mutation that's active, you'll struggle with eating protein, probably generating excess ammonia and free radicals. But the body needs protein to function. So you may need to limit your protein and take supplements to help you mitigate the side effects but it doesn't mean you can never eat meat. An activated CBS gene mutation makes it harder to process sulfur foods, but it doesn't mean you can never consume garlic. Only that if you do eat garlic, you should limit other sulfur foods to avoid problems. It's always about balance, not yes/no/never. Also, there are many co-factor enzymes that can influence a gene's activity and also an interplay between genes that have to be considered. It's a genetic symphony. If the guy next to you is playing in the wrong beat, it can mess you up even if you'd normally not be prone to errors. Some people don't want to know this information and it's one reason for avoiding a test like 23andMe (tho they lock both the BRCA and alzheimer's results unless you specifically click yes on two different screens to unlock them). But others feel more information is power. So it's a personal decision. As for your question about anesthesia, I think it's your NOS genes that influence that - NOS is nitric oxide synthase and there are three NOS genes NOS1, NOS2 and NOS3 each having dozens of identified snps. But I could be wrong as I haven't really looked into this aspect yet. CBS may play a role - I'm just not sure. There are a few methylation support groups on FB. Some are private. If you want that info, let me know. They're often visited by people groping in the dark but occasionally you can pick up good snipits of info. You can post this specific question on MTHFR Support on FB - someone will likely answer within the day. A quick google search gave me this link http://anesthesiology.duke.edu/modules/anes_genes/index.php?id=1 but I haven't browsed the site yet. -
a search of "tick borne bartonella" gave me these hits: http://columbia-lyme.org/patients/tbd_bartonella.html The evidence for ticks as vectors of Bartonella organisms is circumstantial but fairly strong. Recent studies in both the United States and Europe have found that Ixodes ticks harbor B. henselae in addition to Borrelia, Babesia and Anaplasma organisms; in fact, a 2004 PCR analysis of I. Scapularis ticks in New Jersey discovered that a higher percentage of ticks were infected with B. henselae than any of these other pathogens. In addition, B. henselae has been detected in the spinal fluid of patients co-infected with Borrelia burgdorferi, the agent of Lyme disease. However, the ability of Ixodes ticks to actually transmit B. henselae has not been specifically demonstrated. this: http://www.ncbi.nlm.nih.gov/pubmed/18380649 (2008) This review discusses Bartonella transmission by sandflies, lice and fleas, the potential for transmission by other vectors, and data supporting transmission by ticks. Polymerase chain reaction (PCR) or culture methods have been used to detect Bartonella in ticks, either questing or host-attached, throughout the world. Case studies and serological or molecular surveys involving humans, cats and canines provide indirect evidence supporting transmission of Bartonella species by ticks. Of potential clinical relevance, many studies have proposed co-transmission of Bartonella with other known tick-borne pathogens. Currently, critically important experimental transmission studies have not been performed for Bartonella transmission by many potential arthropod vectors, including ticks. http://lymebrarydesk.blogspot.com/2012/02/bartonella-can-be-tick-borne-says-study.html (2012) In a recent study published in PLoS Neglected Tropical Diseases, French researchers in collaboration with the US CDC demonstrated that Ixodes ricinus ticks could transmit Bartonella birtlesii from infected to non-infected mice. This is a huge step forward in proving that other Bartonella species can also be spread by other Ixodes ticks to other mammals. The information gap is beginning to close. As the author summary states, "Consequently, bartonelloses should now be included in the differential diagnosis for patients exposed to tick bites." Reis, C. et al (2012). Vector competence of the tick Ixodes ricinus for transmission of Bartonella birtlesii [Electronic version]. PLoS Neglected Tropical Diseases(5) 5, e1186. Retrieved 2/4/2012 from http://www.plosntds.org/article/info:doi/10.1371/journal.pntd.0001186 You may be able to tweak the search words and get additional support. Lots of pro-lyme sites state it's possible but I excluded those as I assume you're looking for mainstream documentation. It may be worth giving the reporter Brian Fallon's contact info at Columbia, tho he may be equivocal - not sure. Heck, even wiki's entry for bartonella says "Bartonella are transmitted by insect vectors such as ticks, fleas, sand flies, and mosquitoes." - but unfortunately, no citation after that particular sentence. This guy might also be worth contacting - http://www.cvm.ncsu.edu/news/2012-05-04-Uncovering-Bartonella-the-Stealth-Pathogen.html "But several Bartonella species have found a home much closer to home – in domestic dogs, cats, cows, and rodents which can act as bacterial reservoirs. Fleas, lice – and possibly ticks – also act as repositories for different strains of the bacteria."
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If you are seeing itching, I'd be concerned about an allergic reaction. My daughter is allergic to andrographis, which is a weed. You of course need to put it in context of whether your daughter has seasonal allergies, as those are now in full swing in just about every part of the country. So if she has allergies, it may have nothing to do with the new meds. But if not, I'd be watchful for allergic reaction and make sure you have benadryl on hand for oral dosing. If she's allergic to one of the herbs, she could end up with anaphylaxis, which is life threatening. IMO, it is far better to wait a minimum of 5 days between new meds, even if it means not being on them for a full 8 weeks before your appt. Adding things this quickly isn't helping you figure out what might be helping and what's a waste of money (or a possible allergy trigger). Lyme treatment is not a sprint and I think you do your daughter a disservice by rushing many things at once. If your LLMD thinks it's essential for her to be on everything for a minimum of 8 weeks, then I'd push the appt back rather than rush new meds. As for additional detox, we used milk thistle for a long time for my son but it is a member of the ragweed family, so be cautious if your DD has any allergies. Resveratrol is a good antioxidant/anti-inflammatory. Alpha lipoic acid is a good glutathione precursor. NAC helps some (esp. w/OCD) but is bad for others. Depends on individual genetics. Water with a little lemon is good. Psyillium husk in capsules helps keep BMs regular.
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Dr L do not hand out a Pandas dx lightly. So it seems likely this is a valid diagnosis - however, strp may not be the only trigger. Regardless, 4 days is far too soon IMO, to start to worry. You have seen improvement in appetite, which is nothing to sneeze at. It can take weeks to see overall improvements and even then, it you haven't hit the right and/or all triggers, you can backslide. But that doesn't mean it isn't PANS/Pandas. It just means more digging. There is no test for OCD, depression, tourette's - but it doesn't mean these conditions aren't real.